Tuesday, December 28, 2010

Increasing LDN Dose

After I 'stabilized' on a lower dose of LDN and higher dose of T3 (morning and afternoon), I had more energy, body warmth and normal regularity. However, I still got cold symptoms when I: (1) didn't get enough sleep, (2) spent time with large crowds of people, i.e., shopping in a mall), or (3) got physically stress (cold, wet and tired), even while continuing to take arabinogalactin 2x daily. So I decided to slowly increase my LDN dosage.

A LDN website suggested that patients with Hashimoto's thyroiditis (like me) start LDN at a low dose and slowly increase that level. Unfortunately my doc started me at a higher LDN dose, which was appropriate for my weight, but inappropriate for someone taking thyroid supplements for an autoimmune thyroid condition. (LDN improves all autoimmune conditions, which makes Hashi patients need less thyroid supplement and possibly get hyperthyroid symptoms when taking LDN, as I experienced.)

Nevertheless, my doc prescribed the LDN to stimulate my immune system to increase my white blood cell production. (My last 2 WBC test results were low and lower.) If I have an autoimmune condition which causes low WBC (like non-Hodgkins lymphoma), LDN can also improve that condition, which in turn improves immunity and WBC production. So I want to eventually return to my initially prescribed LDN dose (3mg daily), because that is the optimal treatment dose for my body weight.

When I decided to lower my LDN dose from 3mg to 1.5mg, I bought some empty capsules so that I could divide the LDN capsules. That 'dividing' process made me confident enough to later increase the dosage. During the past week I increased my dose from 1.5 mg to 1.75 and tolerated that well (no sleep problems, no diminished appetite). Next I will take 2mg of LDN for the next few days and see how I tolerate that dose. If I tolerate that, I may return to my original 3 mg dose for the remaining 2 months of my prescribed LDN treatment. I also plan to get another blood test for CBCs (includes WBC) and thyroid hormones (T3, T4 and TSH) about mid January, which will be halfway through my LDN treatment period.

Saturday, December 25, 2010

Dissimilar Arabinogalactin Products

My doc advised me to use Biotics Research IAG (arabinogalactin) powder to fight viral infections while I wait for the LDN to raise my white blood cells. Initially I used that IAG product ... until I finished the container after a month of 2x daily doses. My doc had recommended that I continued arabino for 8 weeks. However, we would need to drive to her clinic and pay more for the Bioteks product.

So I tried a Super Supplements (Larix) brand of IAG. Within a few days my cold symptoms were back (sinus headaches and facial pain, runny nose, sore throat). I got symptom relief when I first took that cheaper product, but within a few hours I felt sick again. So I compared the dosages of the 2 products. The Biotics' adult dose was 1 teaspoon. The Larix product dose was 1-3 TABLESPOONS for adults. I recall that I had only used a heaping teaspoon. So I increased my dose of the Larix product to a tablespoon. Then I experienced intense gas and bloating side effects. Arabinogalactins are a natural source of FOS, prebiotics which feed probiotics, but also cause lots of gas and bloating. I initially experienced a little gas and bloating from the Biotek product, but eventually those symptoms disappeared. From my experience with the Larix product, I suspect that the larger the dose, the more gas I will experience.

SOOOOO on Christmas eve eve (Thursday) we drove to my doc's clinic and got another container of the Biotics. We also delivered a plate of my homemade cookies to my doc and her assistant with a Christmas card. Then, because we were so close to a large shopping mall, we decided to get some exercise strolling the mall and have lunch. Of course going to ANY mall a few days before Christmas is a BIG mistake LOL.

However, we eventually got to the mall, found a parking place, had lunch, walked and shopped. I found 2 more last minute gifts for my husband and he found another gift for me. Then I found H&M, my alltime favorite store and found a red/white striped knit dress and another red sweater. That dress was perfect for Christmas Eve. So I wore it last night to our church service and felt toasty warm.

Within 20 minutes of taking the Biotiks IAG, my cold symptoms disappeared and didn't return for another 12 hours. So I put the Larix product away (maybe I'll give that to my husband when/if he ever gets a cold) and resumed the Biotiks arabinogalactin powder, which was more expensive, but more effective. The smaller effective dose will last me at least a month.

I hope after another month the LDN will my WBC high enough to improve my immunity against chronic respiratory infections. My doc okayed a mid January blood test to check WBCs and thyroid levels. Meanwhile I feel fantastic with my IAG powder and twice daily T3 (thyroid supps). I've increased the LDN capsules to 1.75 mg each and haven't notice any sleep disturbance as long as I take my afternoon T3 dose (2.5 mcg) before 4:30pm. So I almost have what I most want for Christmas: feeling healthier. (I still have some bleeding hemorrhoids, but also use daily sitzbaths which help heal those.) I'm looking forward to a healthier, painfree 2011!

Tuesday, December 21, 2010

Feeling Much Better Now

After a recurrence of cold symptoms I resumed taking 6000IU Vitamin D daily and continued daily doses of 1.5 mg LDN, 2 tsp. arabinogalactin and 7.5mcg total T3. I really don't know whether my white blood cells are increasing, but I feel more energetic, warm and 'regular' with that treatment combination. Although I still need all those daily supplements, I'm grateful for feeling well. I will continue the arabinogalactin for at least another 4 weeks and the LDN for another 9 weeks. However, my doc okayed getting my WBC level and thyroid level rechecked with blood tests during January. Preventing and/or treating cold symptoms with arabinogalactin and stimulating my immunity with LDN should improve my WBC level. Only blood tests can really tell me whether those treatments helped.

Saturday, December 18, 2010

OOPS! Cold Symptoms Back

After feeling great for a few days I decided to treat myself to a shopping spree on Thursday. I also needed a break from cooky making and holiday decorating. Banana Republic was having a great sale and I needed some winter white cords to go with a suit jacket which I've had since 1978. (I recently gave away the pants from that suit, because my post menopausal expanded waistline could no longer fit the waist of the trousers.) I enjoyed shopping at several stores and even got a really cheap sale turtleneck tee at J. Crew. However, by the time I headed home I felt very tired with sore throat, runny nose and sinus pain.

I'm uncertain whether those cold symptoms resulted from cutting my vitamin D (from 6000 to 4000IU for a few days or from decreasing my LDN dose (from 3.0 to 1.5mg). Both of those supplements help immunity. I'm also running low on my arabinogalactin, which fights viruses. So I take a bit less than 2 teaspoons daily. I also read that consuming excess sugar lowers immunity. I sampled my Christmas cookies each day I baked those last week. Whatever the cause, my immunity was compromised. So I increased my vitamin D yesterday and today. Fortunately I still have normal regularity. I fear increasing the LDN will cause hyperthyroid symptoms. I'll get more Arabinogalactan tomorrow and continue taking that 2x daily. I'll just remain at the higher Vitamin D dose for a few days before I change anything else.

Friday, December 17, 2010

Doing Well with Less LDN and More T3

For the past 6 days I've taken only 1.5mg (half my original dose) of LDN and 5-7.5mcg of liothyronine (T3 thyroid supplement). I take a whole T3 (5mcg) tablet when I wake up and another half (2.5mcg) tablet an hour after lunch. That second tablet energizes me for the rest of the day, but I can still sleep well at night. I also decreased my vitamin D from 6000 to 4000IU daily. Then 24 hours after my horrible experience with severe constipation and painful hemorrhoids, I had soft normal stools which continued for the next 5 days. That plus daily sitzbaths helped heal (shrink) the hemorrhoids.

Despite lowering my vitamin D (which helps immunity), I didn't get any cold symptoms until last night. So today I resumed the higher 6000IU of vitamin D. I still feel slight cold symptoms, but those are less than I had 24 hours ago. I may take extra magnesium tonight to compensate for additional vitamin D and prevent constipation, while those hemorrhoids are still healing. However, my higher thyroid level may be adequate to facilitate normal regularity. (Thyroid increases motility, which prevents constipation.)

Even with slight cold symptoms I still feel so much better with 2 daily doses of T3 supplement. Before I began taking LDN at night, I also took a T4 supplement. However, since I don't completely convert T4 to T3, I'll stick to T3at least until I finish the LDN treatment (which enhances the effects of thyroid supplements). Also I can compensate for possible LDN induced hyperthyroid symptoms more easily by decreasing T3 (with its shorter half life) than I can with longer lasting T4 supplements.

Monday, December 13, 2010

Decreased LDN Dose to 1.5 Mg

After a morning with a impacted stool (which eventually passed), followed by swollen, protuding, bleeding hemorrhoids (preceded by a week of intermittent bleeding hemorrhoids), I decided I needed to change something to prevent constipation. Before I started LDN (to increase white blood count) and Arabinogalactin (to fight cold viruses), I had normal regularity (neither constipation nor diarrhea) and no swollen, bleeding hemorrhoids. Since I began LDN I experienced more and more constipation and consequently more bleeding hemorrhoid problems.

I know Vitamin D can cause constipation, because it decreases the availability of magnesium to draw fluid into the stool. However, I was doing okay even with 6000IU daily of vitamin D before I started LDN. After I began LDN I had several hyperthyroid incidents. So I started lowering my thyroid dose to prevent those hyper symptoms. I also noticed that arabinogalactin dried up my cold symptoms rapidly, almost like OTC cold meds. However arabino is an herbal supplement (the source of echinechia) which fights viral infections. Nevertheless, if that dries up my cold symptoms, it might also 'dry up' my intestines. Furthermore thyroid supplements increased my motility and eliminated previous irregularity problems. So I suspected cutting my thyroid increased the possibility of constipation, even though LDN was supposed to decrease the need for thyroid supplements. If LDN improved regularity, I wouldn't have experienced increased constipation.

Sooo ... I decided to decrease my LDN dose. I didn't want to waste any of that expensive supplement. So I bought some empty capsules which were the same size as my 3.0mg LDN capsules. Then I opened each LDN containing capsule and poured half the contents into a clean capsule. So I essentially created twice as many LDN capsules, except each of those contained 1.5 mg or half my original dose. I didn't divide all those original 3.0mg capsules. I just divided enough for about 2 weeks. I'll see how I feel taking half doses for 2 weeks.

Since I took half dose of LDN I increased my daily T3 (Liothyronine) dose to a whole 5 mcg tablet. I tried taking 2/3 of that tablet in the morning and 1/3 in the late afternoon. However, that disturbed my sleep last night (I was hyper and woke up several times). So I just took a whole 5 mcg T3 this morning and none this afternoon. I feel more tired as the day goes on. So I should sleep soundly tonight, especially because my 1/2 dose of LDN won't wake me up.

Again, trial and error, but I'm changing my meds based on my body symptoms. My doc would do exactly the same thing, but I don't want to wait 2 days for her to reply to my email and/or phone call to tell me to do what I know how to do. (She already told me to try dividing my LDN dose, but didn't mention increasing the thyroid.) I've had no constipation today, but I will suffer swollen hemorrhoids for awhile until they heal. Meanwhile I can help that healing with daily sitzbaths of very warm water. That's both soothing and healing.

Friday, December 10, 2010

Mocha Almond Fudge Insomnia!

Somehow I got away with eating caffeine loaded Mocha Almond Fudge (dairy/soy free) ice cream the night before last. I slept straight through the night without waking for the first time since starting LDN. However last night was a different story ...

Perhaps I ate my Mocha Almond Fudge frozen dessert a little later in the evening. I recall that I finished my 1/2 cup serving after 8pm. Then I was in bright lights while I decorated our house. I didn't get to bed until almost 11pm. I read a rather stimulating book about clinical trials (true story). Then I had difficulty drifting off to sleep. I seemed to fall asleep and awaken many times. I finally looked at the clock and noticed it was the witching hours (2-4am) after LDN has suppressed my endorphins and I intensely feel every tiny uncomfortable sensation. Then I continually experience itches all over my body and sometimes muscle stiffness, which I normally don't experience. If I get up to go to the bathroom during that time, I feel really spacey, not sleepy, but outer worldly spacey, indescribably weird.

I think I finally fell asleep after the witching hour period (maybe about 4AM) and slept rather soundly until 7AMish. I tried to go back to sleep, but gave up about 7:30AM. I plan important errands this morning before I crash this afternoon from sleep deprivation. I learned my lesson with caffeine containing foods, which can cause reflux, but definitely cause insomnia. I can eat those after lunch and before 5pm. After that caffeine consumption, even tiny amounts from decaf coffee or mocha almond fudge ice cream, will cause me to experience insomnia.

Thursday, December 9, 2010

Reduce LDN or Continue Less T3?

My doc replied to my long email update about my interactions between T3 and LDN causing Hyperthyroid symptoms as well as her confusing messages which contributed to those overdose symptoms. She merely suggested I try cutting the (very tiny) LDN capsules in half. I told her that I previously considered dividing those very tiny LDN capsules. However, I thought raising my WBC level was more important than controlling thyroid symptoms until I developed daily painful, bleeding hemorrhoids. I also suspected I couldn't evenly divide the LDN capsules and would waste most of the contents by spilling. The T3 tablets seem easier to split, evem though my pill splitter usually divides tablets into 2/3 and 1/3 segments.

For the past 3 days I've taken 2/3 of a T3 tablet (3.3 mcg) each morning and slept well for the past 3 nights after taking the 3mg dose of LDN before bed. I feel comfortably warm and energetic during the day. I slept through the night w/o waking last night. I had softer stools today and yesterday morning (after taking more vitamin C and magnesium for constipation). I treated my bleeding hemorrhoids with 2 sitzbath sessions yesterday. That reduced the hemorrhoids and prevented bleeding today.

As far as improved sleep, I suspect that either my body has adjusted to that LDN dose so that it no longer disturbs my sleep OR I've reduced the T3 dose low enough that I don't get hyperthyroid symptoms during the night OR at least half of my last T4 dose left my system (I last took that 25 mg dose of T4 on 12/3 after 2 days off all thyroid meds,. I have no idea how much the LDN affects the thyroid meds. I could only judge from my symptoms and adjust thyroid supplement accordingly.

If I continue to have regularity problems, I may divide and waste some LDN to take less. Then I may need to increase the T3 dose. However, before I change anything which affects my sleep, I want more nights of solid sleep. I previously tried taking the IAG only in the evening. However, insuffiiciient sleep exacerbated my cold symptoms. So I had to return to 2 daily divided IAG doses to treat cold symptoms. After the past few nights of solid sleep, I now only need an evening dose of IAG and have no cold symptoms during the day. Last night I slept straight through without waking, for the first time since starting the LDN, even after consuming lots of (Truly Decadent) mocha almond fudge (dairy free but not caffeine free) ice cream with dinner.

My doc replied to my email about 2/3 T3 tablet with whole LDN capsule and said that the important thing is to take at least 1.5mg of LDN. Now that I've adjusted to LDN and my cold symptoms FINALLY disappeared, I'll keep the LDN at that initial level to stimulate white blood cell production and more easily fight any future infections. My long history of chronic gastro infections plus chronic colds is linked to low Vitamin D levels, low thyroid levels and ultimately low white blood cells.

I actually feel better today than I have felt in awhile. Instead of dreading Christmas holidays and wanting to only attend a Christmas Eve service (and nothing else), I'm now excitely shopping, baking Christmas cookies and decorating the house, while anticipating get togethers with family and/or friends and other activities with my husband. What a transformation! Although balancing the thyroid dose with LDN was challenging and frustrating at times, I now believe that was well worth the effort!

Tuesday, December 7, 2010

2/3 T3 Tablet Works Well

After taking a whole T3 tablet on Sunday morning and feeling hyper with palpitations all day, I slept very poorly, if at all, Sunday night. So I decided to split those tablets in half and try half doses. Unfortunately my pill splitter divides those small T3 pills unevenly into 1/3 and 2/3 pieces. So yesterday I took 2 of the smaller (1/3?) pieces for approximately a 2/3 tablet or about 3.3 mcg dose. I was not hyper, felt comfortable, not overly warm and had palpitations only when walking uphill. I slept much better last night. I only awoke about 3am, which is my usual 4 hours after taking the LDN wakeup time, and recalled an unusual dream. One side effect of LDN is weird dreams, but that was my first weird dream since starting LDN. So I took another 2/3 T3 pill dose today.

Yesterday afternoon I also emailed my doc about my recent bad exeriences with hyperthyroid reactions, her conflicting email and phone messages, and my frustration with interactions between the LDN and thyroid supplements, which could have been avoided by her prescribing a lower dose of LDN. No, I didn't exactly tell her that. I suspect she already realizes she screwed up by starting me at the 3mg dose of LDN, rather than the recommended (for patients taking thyroid supplements) 1.5mg dose. I don't know how she will respond to my email. Nevertheless, I plan to keep tweaking T3 doses, rather than resume taking T4.

My last blood tests showed that my T4 levels had increased but still in normal range, but my total T3 and free T3 were low, even after taking a T4 supplement for 2 months. That suggested I don't easily convert T4 to T3. So I believe if I take anything, I should take T3, while I take LDN. After I finish my 3 month prescription of LDN, I may need to adjust my thyroid meds again. However, I hope I don't have to endure hyperthyroid hell again. SIGH

Friday, December 3, 2010

Too Late

After following my doc's instructions to take both T4 and T3 (thyroid supplements) this morning but no T3 in the afternoon, I received a phone message from her clinic when I got home late this afternoon. That message told me to take only one of my supplements (T3 at half dose or just one in the morning) for 3 days WITHOUT taking the T4. If I have no palpitations, I should then add the T4 and take both for 3 days. If I don't have palpitations, I can continue. If I do have palpitations and can determine which supplement (T3 or T4) caused the palpitations, I should call the clinic and let them know. WHOOOAA!!!! That sounds like my doc is just guessing.

Since the phone message arrived long after I normally take my thyroid supplements, I took one half T4 and one whole T3 tablet this morning, but no T3 this afternoon. So both of those pills were actually half doses, since I usually take T3 in the morning and afternoon. I HAVE experienced palpitations, increased body temp and decreased appetite today. (The last 2 symptoms are benefits for me.) However, I suspect the palpitations will subside before bedtime, because T3 has a short half-life (about 8 hours). That means that by 11pm the T3 should have cleared my system. So I'll take the LDN at 10:30pm, if I no longer have palpitations. If I still have palpitations, I may skip the LDN, which could make the palpitations severe.

Back on T3 and T4

After 2 days of abstaining from my thyroid supplements (levoxyl and liothyronine) to avoid tachycardia (caused by interaction between thyroid supplements and low dose naltrexone), I finally heard from my doc, whom I told about my recent tachycardia incident. She suggested that I take my regular dose (5 mcg) of T3 (liothyronine) in the morning with my regular dose (50 mcg) of t4 (levoxyl), but not take the second 5mcg dose of T3 in the late afternoon. She also agreed that I could take both doses of IAG (arabinogalactan) before bed to limit the gas and bloating to nighttime only.

However, I decided to take half doses of both my T3 and T4 this morning. So I cut the T4 pill in half and took that with the regular 5 mcg T3 dose. I feel warmer this morning, but don't have really obvious tachycardia. So far, so good. If I have no intense tachycardia tonight, I'll take the other half of T4 tomorrow morning and see how I do. If I still don't get tachycardia during the night (after taking the LED which can cause hyperthyroid symptoms) after 2 days of half doses of T4, I'll try a whole T4 dose. By then I will have taken LED for a week and the sleep disturbance side effect should disappear. So I might just sleep through slight tachycardia ... or not. SIGH

Yesterday (before I heard from my doc) I planned to take the arabinogalactan (to fight my respiratory infection) only before bed. However, my cold symptoms returned a few hours after I got up. I decided I'd rather endure gas and bloating than sore throat, cough and runny nose all day. So I took the IAG after breakfast yesterday. Today I took the IAG with my prebreakfast doses of thyroid supplements and probiotics. I'm bloated and a little crampy from the gas, but I have no cold symptoms now. I'll try again tomorrow morning to skip the morning dose and take both IAG doses before bed. Maybe by then IAG will have killed off my cold viruses ... or not.

My doc prescribed 8 weeks of IAG. I HOPE I don't have to take full strength IAG that long to get rid of this cold, which I've already had for 3 months. Enough already! I no longer feel sick and tired, but I don't want to depend on IAG for another 7 weeks. However, I did read that the gas/bloating side effects of IAG should disappear after a week. I noticed that with another FOS containing product (probiotic), which I took after my last gut bug treatment. Maybe I'll get lucky and continue taking IAG without getting gas and bloating. After this struggle, I deserve a break from side effects.

Wednesday, December 1, 2010

Another Tachycardia Episode

Yesterday morning I took my 50mcg tablet of T4 (Levoxyl) and 5 mcg tablet of T3 (Liothyronine) at 7am. I took my last T3 (5 mcg tablet) at 4:30 pm yesterday. I took the Low Dose Naltrexone (3.0mg capsule) at 10:15pm last night. This morning at 2:10 am I awoke with serious tachycardia and felt overheated, which continued almost 2 hours before I could sleep. Because I suspected my thyroid supplements had caused overdose symptoms, I took no thyroid supplements (neither T4 nor T3) this morning. Then I checked information about my other current medications. I read on the Low Dose Naltrexone website under 'cautionary warnings': "Those patients who are taking thyroid hormone replacement for a diagnosis of Hashimoto’s thyroiditis with hypothyroidism ought to begin LDN at the lowest range (1.5mg for an adult). Be aware that LDN may lead to a prompt decrease in the autoimmune disorder, which then may require a rapid reduction in the dose of thyroid hormone replacement in order to avoid symptoms of hyperthyroidism."

I took liothryonine (T3) for the past four days and only experienced nausea on day 1. However, I consumed cane sugar on day 2 and experienced my usual allergy reaction (mild tachycardia). That allergy reaction (tachycardia) decreased over the next 2 days while I continued to take T3. On day 4 of taking T3 I had no tachycardia, no increased body temperature, but only slight nausea when I first took T3. Severity of that nausea decreased each day. Other than nausea, I had no reaction to T3 before 2:10am today.

I suspect my doc wants me to continue the LDN 3.0 mg dose, because increasing my white blood cell count is more important than treating hypothyroid symptoms. (Conceivably I could take all the LDN capsules back to Custom Pharmacy and ask them to divide all those capsules into smaller doses.) Nevertheless, I could also cut the T4 tablets in half and/or take only one T3 in the morning, rather than late afternoon. So my T3 level would be much lower when I take the LDN capsule before bed. This morning I sent my doc an email about what I experienced last night. I also asked her whether she wanted me to decrease my thyroid supplement while I take the LDN and what dosages of which supplements should I take to avoid hyperthyroid (tachycardia) symptoms.

I also experienced bloating and gas while taking IAG (arabinogalactan). So I asked my doc whether I could take 2 one teaspoon doses at the same time. I would prefer to take 2 teaspoons dissolved in water at night before bed, rather than during the day. So I would just have bloating/gas at night, rather than during waking hours.

The GOOD NEWS is that my cold symptoms decreased dramatically during the past 48 hours. I had suffered cold symptoms for over 3 months. After taking the low dose naltrexone and arabinogalactan for only 48 hours, I now only have a slight runny nose. I suspect that rapid recovery is due to the antiviral activity of IAG and the immune stimulation of LDN.

Monday, November 29, 2010

Jump-starting My Immune System

Today I picked up Low Dose Naltrexone (prescription), IAG (arabinogalactan supplement), and intramuscular B12 and folate (injection at my doc's clinic). The injection didn't hurt at all. I took the first teaspoon of IAG dissolved in water. That tasted like soapy dishwater. UGGHH!! I may take the next dose dissolved in apple juice tomorrow morning. I have yet to take my first LDN capsule, but will take that just before going to bed. LDN should stimulate white blood cell production. IAG should fight my respiratory infection. B12 and folate will address a possible deficiency which could affect my white blood cell count. So those 3 things should jump start my immunity and help me recover from this 3-4 month long respiratory infection.

I've now taken 3 days of liothyronine (2x daily 5 micrograms of T3 supplement) and feel nothing, no side effects, no obvious improvement. I wonder whether that dose is too low (10 mcg daily) to make any difference in my hypothyroid symptoms (cold intolerance, fatigue, irregularity, etc.). I suspect my doc prescribed a very conservative dose, because T3 supplements can easily cause overdose symptoms. Because I believe I did NOT overdose on T4, but really just reacted to cane sugar with tachycardia, I know I won't OD on such a low dose of T3. I emailed my doc about my realization about 5 weeks of cane sugar reaction symptoms. Maybe that will reassure her that I can tolerate a higher T3 dose.

Sunday, November 28, 2010

Allergen Reaction vs. T4 Overdose??

This morning I realized I have consumed cane sugar (one of my diagnosed allergens) every other day for the past 4-5 weeks. I put almond butter in my cooked breakfast cereal. The manufacturer changed the ingredients of my regular almond butter brand to now include evaporated cane juice. We neglected to read the label when we bought that jar. This morning I also noticed my usual cane sugar reactions of tachycardia and slight nausea (which typically last 24-36 hours). Yesterday, I did not eat cooked cereal. I did not experience obvious tachycardia, despite taking my first 2 liothyronine (T3 supplement).

I checked my calendar and noticed that I began to experience severe tachycardia about 5 weeks ago, which was about when I opened that jar of almond butter. At that time I believed the increased (75 mcg) dose of Levoxyl caused my tachycardia. However, I usually react very strongly to an allergen after abstaining from that for a long while. So I could have also reacted to the cane sugar. The severe tachycardia did subside after reducing the Levoxyl dose. As I continued to consume cane sugar in the almond butter every other day for the past 5 weeks, during the time I thought I was reacting to Levoxyl, I also noticed more intermittent gut cramps, my usual reaction to my other allergens.

When I saw my T4 levels on my last blood tests, I wondered how I could have experienced overdose symptoms without increasing my T4 levels very much. When I saw my low total and free T3 levels, I realized I wasn't converting T4 to T3. So I wondered how enough of the supplemental (Levoxyl) T4 was converted to cause overdose symptoms. After realizing that I consumed cane sugar, to which I react with tachycardia and slight nausea, at the same time I took the increased (75mcg) dose of Levoxyl, I wondered whether how much of my tachycardia was caused by cane sugar and how much was caused by Levoxyl.

After reading more about T4 to T3 conversion problems, I now wonder: if my body doesn't easily convert T4 to T3, do I need the same (50mcg) dose of T4 (Levoxyl) while I take a T3 (liothyronine) supplement?

I experienced some nausea after taking each of 2 Liothyronine tablets yesterday. However, I won't know whether the T3 causes tachycardia until I stop reacting to the cane sugar. Since I found the source of the allergen reaction and can now abstain from cane sugar, the reaction symptoms should subside after a few more days. Then I can assess whether the T3 supplement has more benefits than side effects.

Friday, November 26, 2010

Now I Get It

I emailed my doc this morning to ask why she no longer thought B12 deficiency caused my low white blood cell count. She told me that my last CBCs (blood test results) indicated that I WAS absorbing the B12 and folate supplements I took. However, my white blood cells still decreased. So it's now time for a more powerful immune stimulator (low dose naltrexone), which I will get on Monday from a custom pharmacy, because that supplement will be compounded. Also I'll go to my doc's clinic on Monday to get another supplement (arabinogalactan), which treats chronic infections, and a B12/folate injection to boost my energy levels while I'm waiting for the other drugs to stimulate my immune system.

I picked up my T3 supplement (liothyronine) this afternoon. So I'll start taking that tomorrow morning with my T4 supplement (and one more T3 two hours after lunch). That T3 supplement will improve all my hypothyroid problems, like fatigue, cold extremities, low immunity, regularity, etc. I'm looking forward to FINALLY resolving all my hypothyroid symptoms. I need to research why I don't easily convert T4 to T3. Maybe that's also related to Hashimoto's thryoiditis, which is linked to celiac disease ...

Wednesday, November 24, 2010

Good News, Bad News Again

I finally got a phone consult with my doc today. The bad news is that low white blood cells can mean lymphoma, specifically Non-Hodgkins Lymphoma, which is highly correlated with longterm celiac disease. The good news is that several medications can increase my white blood cell count. One drug is low dose Naltrexone, which is often used for patients withdrawing from opium addiction. No, I've never taken opiates and can't tolerate any narcotic drugs. I get very ill and vomit immediately, unless I take antiemetics to prevent throwing up. (I took antiemetics when I took Demerol for 8 weeks after hemorrhoid surgery.) However, Naltrexone suppresses Endorphins temporarily. Then, after that drug wears off within 2 hours, the body releases a flood of endorphins which stimulate the immune system to make more white blood cells. Similarly aerobic exercise stimulates endorphins and improves immunity. No wonder I feel good after walking or doing any aerobic exercise.

More bad news ... I do have swollen submandibular (below the jaw bone) lymph glands. Those were quite swollen before I was diagnosed with celiac disease and went off gluten. However they shrank over the past 6 years. Then more recently they became swollen again. Swollen lymph nodes can also mean lymphoma. So I may need to see an endocrinologist about my decreased immunity.

More good news ... my doc agreed that I also need a T3 supplement. My low Free T3 and Total T3 results (on my last blood test) were low enough to suggest that my body doesn't easily convert T4 to T3, which explains my lack of improvement on a T4 supplement. The most appropriate T3 drug (Cytomel) contains sucrose (which could be from cane sugar, one of my allergens) as inactive ingredient. However my HMO pharmacy advised me to consider the generic T3 liothyronine sodium. I checked that drug's ingredients and found none of my allergens. I told my doc about that generic choice. So she can prescribe generic T3 and save me lotsa $$$.

Hopefully I can pick up prescriptions for T3 and LDN on Friday. I'm seeing another flicker of light at the end of my illness tunnel ...

Tuesday, November 23, 2010

Here We Go Again

After another day of really cold weather, frozen streets and treacherous driving, weather people predict exactly the same for tomorrow (when I have my doctor appointment). So my doc's clinic called tonight to say that the clinic will be closed for the next 3 days (one day of inclement weather and 2 days for Thanksgiving holiday). I asked to convert my appointment to a phone conference, because my doc plans that for her appointments tomorrow. However they booked someone else in the appointment time they gave me on Monday for tomorrow. Either they put the wrong name or they actually gave away my appointment time. GRRRRRRR!!! That also means my doc does not have my file with her at home.

Again I explained that I really needed to talk to my doc asap, because I've been sick and getting sicker since I saw her last. So the clinic receptionist promised to find a time for me and fax my last 2 lab (blood) test results to my doc. Actually I have those results and can inform my doc. I could have just emailed her. However, most clinics assume patients are clueless about their condition and lab tests. So I need to wait until tomorrow morning to learn whether I can even talk to my doc on the phone.

Monday, November 22, 2010

Snow Day Cancellation

After waiting a week for an appointment with my doctor, her clinic called to tell me she would not be there today due to snowy weather. Ironically we were prepared for a 2 hour drive (one way) with studded snow tires to keep both appointments (for my husband and I). However, my doc decided to take a 'snow day'.

When I requested another appointment the receptionist offered one next week 7 days later. She didn't have anything for my husband that day. However, my husband said he could do a phone consult with his doc. Nevertheless, I told the receptionist that I had been sick with one cold after another (or the same cold?) for 3 months, because my white blood count was low and dropped lower over 2 months. So I needed to see my doc ASAP and hopefully get something to replenish my white blood cells. Magically the receptionist came up with 2 overlapping appointments this week (2 days from today) for my husband and I. I'm glad I persisted and didn't accept the 7 day delayed appointment. I'm always amazed by the appointment openings that magically appear when I persist.

Since my husband took the week off, we enjoyed walking in the snow to do errands. I'll get a head start on Thanksgiving preparations by making cranberry relish this afternoon. Tomorrow we will celebrate his birthday by seeing a movie. Then I'll make his favorite dinner (liver and onions, green beans and yukon gold potatoes).

I hope the weather is improved enough on Wednesday, because I don't want to play the rescheduling game again. Besides I expect my doctor to change my thyroid supplement prescription. I'll have to get that at my HMO pharmacy the day after Thanksgiving. Meanwhile I'm still fighting cold symptoms with massive doses of Vitamins C and D and eating anything I crave, which usually means foods high in Vitamins C and A. Today I had fresh tomatoes and lettuce on my sandwich at lunch with candied ginger for dessert. Ginger stimulates the bodies immune system. I always feel better after eating ginger, but can only tolerate a little, because it's soooo hot and spicy.

Thursday, November 11, 2010

Blood Test Results

My CBCs were all normal, except the WBC (white blood count). My naturopath doc believed the low WBC was caused by B12 and/or folate deficiency, which was caused by long undiagnosed celiac disease. However, after 2 months of taking high doses of folate and B12, my WBC went from 3.2 to 3.0. The normal range is 4.0 to 10.7. Over the past 3 years my WBC dropped significantly. That suggests multiple gastrointestinal infections, not vitamin deficiency, decreased the WBC.

The CBC good news is that my MCHC (mean corpuscular hemoglobin count) increased into the 'normal' (albeit low normal) range. So eating more iron rich foods was enough to raise that result. If raising B12 levels can increase my WBC, I suspect I will need B-12 injections, because taking supplements did not work.

I also wonder if I have some other latent bacterial infection. I tested positive for TB as a child and again in my late 20s for TB. Fortunately my lung x-rays never showed signs of TB infection. (My last lung x-ray was in late February of this year.) Nevertheless, I wonder whether carrying that latent bacteria could affect my WBC results.

My thyroglobulin antibody test (TAB) was <0.9 (normal range is 0.0 to 4.0). That score says I don't have antibodies attacking my thyroid. My thyroid peroxidase antibody (TPOab) test result was 53 (normal range is 0.0 to 60). That result suggests I have some antibodies, but within the normal range. People with celiac disease often have Hashimoto's thyroiditis in which antibodies attack their thyroid. Gluten reactions create antibodies which attack the intestines in celiac disease as well as other parts of the body for other autoimmune diseases. Because I have not consumed gluten for over 5 years, I assumed those scores would be low.

My other thyroid results were both good and questionable. My THS was much lower (after taking Levoxyl for 2 months), going from 3.71 to 0.797. However my free T4 did not increase much (from 1.09 to 1.19), even though I've been taking a T4 supplement. The 'normal' T4 range is 0.9 to 1.8. My total T3 was 66, which is lower than the normal range of 70 to 170. My free T3 result was 2.09, which wasalso lower than normal range of 2.4 to 4.4. Those T3 scores make me wonder whether my body has difficulty converting T4 to T3. Perhaps that difficulty explained my lack of significant improvement after taking a T4 supplement for 2 months.

I made an appointment with my doc to discuss my low results. I especially want to ask whether B12 injections will increase my WBC and prevent my chronic respiratory infections. I get cold symptoms (sore throat, runny nose, fatigue) every afternoon. I also want to discuss the low T3 scores.

Friday, November 5, 2010

CBCs and Thyroid Function Retests

After reminding my naturopathic doc that I need signed order to get blood tests at my local HMO clinic, I received her order for the following tests:

CBC
TSH
FT4
T3
FT3
TAB
TPOAb

I need to recheck my CBCs, because my previous test showed low WBC (white blood count) and low MCHC (mean corpuscular hemoglobin concentration). I suspect those have increased after eating high iron content foods for 2 months and recovering from that parasitic infection which can cause low WBC.

After taking a T4 thyroid supplement for almost 2 months, I want to know whether that changed my TSH and free T4 scores. I requested some T3 tests because I'm not doing as well as I expected with a T4 supplement. (50mcg wasn't enough to resolve all my symptoms, but 75mcg was too much and caused hyperthroid symptoms.) So my doc ordered the free T3 and total T3. Those should tell her whether I have difficulty converting T4 to T3. If so, I may also need a T3 supplement.

The TAB (antithyroglobulin antibody?) and TPOAb (thyroid peroxidase antibody) tests look for antibodies which cause Hashimoto's thyroiditis. That autoimmune condition is linked to gluten intolerance and celiac disease. I suspect those tests will be negative because I strictly followed a gluten free diet for 6 years. So I may not have any thyroid antibodies. However, my failure to improve (esp. regularity and immunity), while taking a T4 supplement, made me wonder if I have something else going on (like Hashimoto's or T3 deficiency).

I plan to get those tests done next week. However, I'll request a lab tech who doesn't usually puncture veins when drawing blood. I'll especially decline a blood draw from the person who punctured 2 of my veins in September. I had a large bruise for over a month and sensitivity (throbbing pain) in those veins for almost 2 months.

Sunday, October 31, 2010

Halloween Soup and Brownies

In honor of Halloween I made an orange soup for dinner (with brownies for dessert). In the spirit of this holiday I will take a break from reporting my health challenges to describe how I cook creatively with 13 food allergy restrictions (my 7 and my husband's 9 with 3 shared allergies). Here's my recipe (which I created just for Halloween):

PUMPKIN/BUTTERNUT SQUASH HALLOWEEN SOUP

Cook in large soup pot with 1/2-1 quart (as needed) Imagine Chicken broth:

1 larged chopped onion
2 cups shredded carrots
2 cups sliced/chopped celery

Add 1 quart pumpkin puree (saved, blended and frozen from last year's pumpkin).

While the vegies and puree are simmering (stir regularly), add:

1 gallon bag or one large bunch of chopped, fresh Kale (I used green Kale from our garden);

1 teaspoon basil, 1 teaspoon sage, 2 teaspoons tumeric, 2 teaspoons cinnamon, 1/2 teaspoon Garam Masala, 1 teaspoon cloves (or cardamom), 1 teaspoon onion salt;

Cook till kale is tender, then add 1 quart of Imagine Butternut Squash soup (gluten, dairy, soy, cane sugar, vanilla, nutmeg free). Simmer 10 minutes stirring regularly until soup thickens. Then add:

3 - 5oz cans white meat chicken, flaked (so there are uniformly sized pieces);

Stir and simmer for 1-2 minutes and serve. (Simmer longer for thicker soup.)

My husband rated this soup a 'Hall of Fame' recipe. This recipe made 10 servings (my husband had a second bowl and we froze 7 individual 'petit pan' servings for future meals.) We were both too full for more than a sliver of the brownies I made for dessert. If anyone is interested I'll post the exact amounts of ingredients for this recipe for the Black bean brownies, which are also gluten, dairy, egg, soy, cane sugar, vanilla and nutmeg free. I recall the ingredients included (but would need to look up exact amounts):

BLACK BEAN BROWNIES (w/o amounts of ingredients)

Mix together: Dutch cocoa, quinoa flour, baking soda, salt, cinnamon, stevia, chopped cashews

Blend for 3 minutes: 1 can black beans (drained and rinsed), Spectrum naturals shortening, Agave

Add blended wet ingredients to dry ingredients. Pour into glass 9x9 pan lined with parchment paper sprayed with outdoor grilling Pam (doesn't contain soy lecithin). Bake 325 degrees for 35 minutes. Cool before removing from pan.

(These brownies are very 'fudgey' with a dark chocolate flavor.)

Friday, October 29, 2010

Resumed 50mcg Levoxyl

Although my doc recommended I resume taking Levoxyl at the 50mcg dose yesterday, I still had tachycardia and mild chest discomfort the previous night. So I also abstained from Levoxyl yesterday. Because I had no palpitations or discomfort yesterday, even when walking updhill, I decided to resume taking 50mcg this morning. I now have slight palpitations and feel comfortably warm.

I also had cold symptoms yesterday and felt cold all day. So I took extra vitamin D at lunch, which decreased my cold symptoms. After taking 6000IU of vitamin D yesterday and sound sleep last night, I have no cold symptoms today. However, I suspect both low levels of vitamin D and less thyroid made me susceptible to respiratory infection. Now that I know what causes my vulnerability, I can easily take more Vitamin D when I experience mild cold symptoms and back off when I feel well and get consistently sound sleep for awhile.

I still have one extra 'half' of the 50mcg tablets. I may take that tomorrow morning if I continue to experience tachycardia tonight, rather than taking another 50mcg tablet. Continued tachycardia would suggest that my blood volume of Levoxyl is still too high. So taking a 25-30mcg portion of Levoxyl will decrease my blood level of Levoxyl to return to 50mcg level.

Getting the perfect dose of Levoxyl is rather challenging. I suspect I would have gradually experienced less hypothyroid symptoms, if I would have just continued the 50mcg dose for another few weeks. However, I became impatient after seeing little improvement after 4-1/2 weeks. So according to my doc's recommendation, I increased the dose to 75mcg. Within 3 days I had overdose symptoms. So I now believe that 50mcg would have been enough if I just waited longer, because 75mcg was too much.

Experiencing intermittent constipation related to taking vitamin D supplements made me wonder whether 50mcg of Levoxyl would actually resolve my regularity problem. However, after taking 75mcg for 3 days I had diarrhea, which was the other extreme of my problem. So hopefully balancing the vitamin D with enough magnesium and continuing the 50mgc dose of Levoxyl will resolve my regularity problem.

Tuesday, October 26, 2010

Still Have Overdose Symptoms

After another night of tachycardia making sleep difficult, I decided to totally abstain from Levoxyl until my cardiac related symptoms of Levoxyl overdose disappeared. Feeling my heart beating so hard (and fast) that I can't sleep is scarey to say the least. I had intermittent mild chest pain today along with tachycardia. However, that seemed to decrease as the day passed. I'll know whether I still have tachycardia after I go to bed.

Meanwhile my doc never replied to my email. That's perplexing, because she initially told me to tell her how I was doing after a few days. However, I thought my initial overdose reaction was due to taking more than 75mcg daily, when I took the larger tablet halves with the regular tablets. I believed taking a bit less would even out the total amount in my body. I didn't realize that continuing to take less than 75mcg would increase the levoxyl to the point that I would have nonstop overdose symptoms.

After not hearing from my doc by late this afternoon, I called to leave a voicemail message with her assistant. I told her that I had stopped taking Levoxyl because I had pretty obvious overdose symptoms. I also said I won't resume taking Levoxyl until I was certain I no longer had cardiac related symptoms (tachycardia, chest pain, difficulty breathing, etc.).

24 HOURS LATER: My doc's assistant called me tonight. She relayed my message to my doc who said I should stay on the 50mcg dose. She also told me to resume taking that tomorrow. I suspect her assistant didn't clearly understand my message. I experienced 72 hours of scary tachycardia and chest pain. The first night I hardly slept at all. The second night I feared I would die in my sleep from a heart attack. Last night I took awhile getting to sleep, but slept soundly thereafter. I still had obvious tachycardia today even while sitting still. My heart sped up even more during exercise for the past week. At least I didn't have trouble breathing while walking today. So perhaps the hyperthyroid symptoms from Levoxyl overdose are decreasing now.

Nevertheless, I read that Levoxyl leaves the body very slowly. When I stop taking Levoxyl, it reaches its halflife (half as much thyroid supplement) after a week of not taking that drug. At 75mcg I overdosed. At 50 mcg I had few side effects. So I need to reduce the level of Levoxyl in my blood by 1/3. I suspect that will take 4-5 days of not taking any Levoxyl. I took nothing for the past 2 days after taking 50mcg the previous day. So I'll abstain from Levoxyl 2 more days and pay close attention to my cardiac symptoms (esp. tachycardia and chest pain). If those symptoms disappear after 2 more days I'll try taking 25mcg (one of the 50mcg splits). If I don't react strongly to that, I'll resume taking 50mcg on day 6. I'll also call my doc's assistant to reiterate how seriously I experienced overdose symptoms during the last week I took 75mcg daily. I certainly won't resume taking 50mcg tomorrow, while I still have tachycardia.

Monday, October 25, 2010

75mcg of Levoxyl Is Too Much

While taking approximately (more or less) 75mcg of Levoxyl for the past 10 days, I've experienced intermittent overdose symptoms of tachycardia (which interferred with sleep), slight chest pain, and breathing difficulty when walking uphill. I probably should have cut back sooner, but I thought that increased dose helped regularity. Eventually I realized I still depend on magnesium for regularity, esp. when taking vitamin D.

I emailed my doc last night and took only 50mcg of Levoxyl this morning. However, Levoxyl takes awhile to leave the body. If I still have OD symptoms tonight, I'll take less tomorrow. My doc may advise me to temporarily stop taking Levoxyl. I'll share her reply when I hear from her.

Monday, October 18, 2010

Levoxyl OD Symptoms

After 4 daily doses of 75+ mcg of Levoxyl, this morning I developed obvious overdose symptoms, including diarrhea, abdominal cramping pain, rapid heart beat, difficulty breathing and chest pain. I welcomed the diarrhea after weeks of intermittent constipation and hemorrhoid pain. However diarrhea also exacerbated my hemorrhoids. Then when I walked uphill I began to experience tachycardia, breathing difficulty and chest pain. I'm not overweight and have never experienced chest pain with breathing difficulty. So I immediately realized I had Levoxyl overdose symptoms.

I understand how I developed those symptoms. After my doc advised me to increase my 50mcg dose to 75mcg daily, I cut 4 of my 50 mcg tablets in half. However some of those didn't split exactly in half. The first day I took one of the more perfect halves for an additional 25 mcg plus my regular 50mcg tablet (or a 75 mcg total). However, the next two days I took the larger halves of pills which split unevenly. After not noticing much difference with an exactly 75mcg dose, I decided to see if just a bit more caused any symptoms. Obviously my overdose symptoms told me I'd taken more than I needed for 2 days. This morning I took a more evenly split half for closer to 75mcg. However the effect of Levoxyl is cumulative. So my Levoxyl overdose symptoms didn't manifest until today.

So tomorrow morning I plan to take one of the smallest 'crumbs' from the uneven splits for a total of less than 75 mcg, unless I get more symptoms tonight, like insomnia. If I still have OD symptoms tomorrow morning, I'll cut back to my original 50mdg dose to reduce the total accumulation of Levoxyl in my body. Then I will return to 75mcg or less again. If I experience more OD symptoms, I'll tell my doc that 75mcg is too much.

THE NEXT DAY: As planned I took the smallest part of the split pills with my regular 50mcg Levoxyl tablet. I have no symptoms today ... no diarrhea, no rapid heartbeat (after that symptom made sleep difficult last night), no pain. I hope this means I can resume taking exact 75 mcg doses and experience some benefits (like normal regularity, warmer body temp and energy), rather than overdose symptoms.

Thursday, October 14, 2010

Increase Levoxyl

After 4-1/2 weeks on Levoxyl (T4 thyroid supplement), I still didn't notice any marked improvement in energy, body heat, but mostly regularity. In fact I've gotten more constipated while taking high dose probiotics with FOS, which I thought would increase intestinal motility. So last night I emailed my doc and asked her when I should expect decreased symptoms, because I haven't improved at this point.

My doc told me today to increase my Levoxyl dosage from 50 mcg to 75 mcg daily. Since I already filled my prescription this month for the 50 mcg dosage, I had to cut some of those pills in half to take 75 mcg each day. I hope that helps. I'm really tired of irregularity despite high dose probiotcs, magnesium, high fiber diet, mucho fluids and absolutely no bad gut bugs to cause constipation. I also decided to cut vitamin D back to 2000 IU daily (from a previous 6000 IU daily when I had a bad cold). Vitamin D uses the magnesium, which could decrease the amount available to affect regularity.

My doc also asked me to tell her how I'm doing early next week. That request makes me wonder whether that extra 25 mcg will make an obvious difference after 4 days. If not, then we may need to test my free T3, which was not tested. Some people have difficulty converting T4 to T3. So supplementary T4 doesn't resolve symptoms. They actually need a T3 supplement. or a combination T3/T4 supplement. I should know after 4-7 days whether 75 mcg of Levoxyl is enough to resolve my symptoms.

Friday, October 8, 2010

Phone Chat with Doc

Yesterday I talked to my doc about my latest stool test results and my current gastrointesinal well being. She was pleased that my test showed no new gut bugs. In response to my questions about the 'parasite taxonomy unavailabled', she explained that the Metametrix test is so sensitive that it can isolate bits of almost anything. So the test could have just identified an insect or part of an insect from any organic produce I eat.

She also encouraged me to continue high dose probiotics to improve my good bacteria levels. She told me to take my HLC Synbiotic Intensive probiotics with FOS before bed or on an empty stomach, rather than with meals, as the package label directed. Accordingly I could absorb more of the probiotic, without interference from stomach acid, which could destroy some probiotic cells.

Unfortunately I forgot to ask her about taking a TPOAb and/or T3 blood tests for Hasimoto's antibodies and T3 levels. However she did advise me to retest my thyroid levels in November or December. Since my HMO only tests TSH, I'll need another blood test order from my doc. So she can add those additional tests then.

Wednesday, October 6, 2010

Latest Stool Test Results

I received my Metametrix Lab DNA Microbial Ecology stool test results yesterday. The good news is I have NO NEW GUT BUGS!! The bad news is I STILL have that "parasite taxonomy unavailable". The results also said: A taxonomy unavailable finding likely indicates an ingested protozoan and not a human parasite. It does not indicate treatment unless patient symptoms and other inflammatory markers are consistent with parasitic infection." My 2006 test results explained 'taxonomy unavailable' as: "Glfx will detect DNA from all commonly reported organisms in microscopic parasitology. In addition, any dNA present from yeast/fungi or protozoa will also be detected. These are reported as positive, taxonomy unavailable."

That 'taxonomy unavailable' (TU) bug first appeared in my May 2009 test results (along with my C-diff diagnosis.) At that time my ND dismissed the TU bug as 'probably something I ate before the test. However, that TU parasite result continued to appear on every stool test since May 2009 (1/10, 5/10 and 9/10). If the TU bug really came from something I accidentally consumed, I would have to continue eating those bugs since May 2009. Obviously I need to ask my current doc about that TU bug.

I'm also concerned about my low levels of facultative anaerobes (good bacteria). My lactobaccillus and bifidobacter levels are much lower than they were in January of this year. Granted, I took antiparasitic drugs for almost 3 months to kill the D-frag parasite. However I also took probiotics during and after each drug treatment. Nevertheless, I did begin taking a new probiotic during and after my last drug treatment. I thought that probiotic would be better absorbed and more effective. It had 50 live cells per capsule, which I took on an empty stomach first thing in the morning and just before bed.

However, my good bacteria levels were higher when I was taking a different probiotic (with FOS, which causes bloating and gas) just before meals. I'm really confused now. So yesterday I purchased another 7 day probiotic (with FOS) treatment with the product I previously took. I also called their company to ask why they suggested I take that probiotic before meals, rather than when I first get up (at least 30-60 minutes before meals). They explained that food helps neutralize stomach acid. So less of the good bacteria are destroyed by stomach acid. That's logical.

Nevertheless, I already have low stomach acid and must take acid supplements at the beginning of meals. If those acid supplements destroyed the probiotics, my previous test results for lactobacillus and bifidobacter should have been lower. Instead my most recent results were low. Also those results came from a stool test taken a month after I ended antiparasitic treatment. Other tests were taken several months after treatments had ended. So maybe my current good bacteria levels are higher than they were when I took that latest test.

I have an appointment for a phone consultation with my naturopath. I hope she knows more about those TU bugs and why my good bacteria levels were so low. I also intend to ask her when she wants me to retest my blood levels for vitamin D, CBC (which includes white blood cells and mean corpuscular hemoglobin concentration), TSH and Free T4. Although I've felt slightly warmer and more energetic (possibly due to less anemia and recovering from a badcold), I haven't noticed obvious improvement from thyroid supplementation. Fortunately, I no longer have irregularity. However, I do have more cramping abdominal pain. I wonder if the TU critter is causing my abdominal cramping pain??

Sunday, October 3, 2010

No Obvious Improvement

After 3 weeks of taking Levoxyl (50 mg daily), I haven't noticed any really obvious improvements in regularity. I still need the same amounts of all my supplements (magnesium, vitamins B, C, D, E, HCl and probiotics) plus lots of fiber and fluids for any degree of 'regularity'. However I also now have slight bloating and fecal urgency (feeling like I have to 'go' all the time). I thought after 3 weeks of thyroid supplement I would have less impaired regularity symptoms, not more. I've read that Levothyroxine slowly builds up in the body. So improvement symptoms slowly appear. However, I expected to get better, not worse, regularity-wise.

I still feel warmer and more energetic (possibly due to improved thyroid function), but I didn't mind feeling tired and needing more clothing layers as much as I disliked irregularity symptoms. I also suspect that my current intestinal symptoms mean I have another gut bug infection. My doc said my stool test results won't arrive for another week. So I won't know whether these symptoms mean I need more Levothyroxine or another drug to kill new gut bugs. Right now I feel hopeless about ever feeling healthy again.

Monday, September 27, 2010

What Cold??

When my husband asked me tonight, "How's your cold?", I replied "WHAT cold??" I had no sinus or throat pain today and only slightly runny nose, which felt more like allergy than respiratory infection. I also felt a LOT more energetic (and WARM) than I have in a long time. As I mentioned in my previous post, 2 weeks of Levoxyl (thyroid supplement) could also have influenced my feeling warmer, more energetic and 'regular'.

Unfortunately I also experienced some abdominal pain, which could mean another intestinal infection. However the pain moves from one side to the other (ascending to descending colon), which seems more related to my other symptoms of fecal urgency and softer stools, the kind of symptoms I get before having diarrhea. Improved regularity is definitely a (desired) side effect of thyroid supplement. Nevertheless, I could do without the gut cramps. Maybe that's just a passing symptom, like my intial slight headache and nausea while I adjusted to Levoxyl. I read that I would begin to notice improvements after 2-3 weeks of taking Levoxyl. I hope all these new symptoms mean that I'm heading toward normal thyroid function.

Friday, September 24, 2010

Respiratory Infection Update

This cold certainly tried my patience. I've endured sore throat, sinus congestion and then sinus infection, which slowly healed over the past 10 days or so. While trying to eat more iron rich foods to treat anemia and increase my energy, I also took extra folate and Vitamin B12 to treat anemia linked to low white blood cells. I also significantly increased my consumption of Vitamin D (from 2,000 to 6,000 IU daily, as my ND had originally suggested) after reading exactly how Vitamin D fights infections. I haven't experienced any vitamin D 'toxicity' symptoms, while taking that 'therapeutic dose'.

I can't really tell whether the Levoxyl has improved my low thyroid symptoms (fatigue, cold extremities, dry skin, etc.) because my cold symptoms are similar to low thyroid symptoms. However, I haven't had any constipation no matter how little fiber or fluids I consume. That's a welcome switch, which I attribute to improved thyroid function. I won't really know whether the Levoxyl changed all my low thyroid symptoms until after my cold disappears. Nevertheless, after 2 more days I will have taken Levoxyl for 2 weeks. I've read improvement signs become more obvious after 2-3 weeks. So I hope I'll feel more energetic and just plain healthy during the upcoming week.

Thursday, September 16, 2010

While Waiting to Feel Better ...

I developed yet another upper respiratory infection (cold?) after several days of extreme fatigue. Now I have very sore throat, runny eyes and nose as well as extreme fatigue. I've taken Levoxyl for 3 days and haven't really seen any obvious signs of improvement.

Meanwhile I've rearranged my morning juice, breakfast and supplement schedule to accomodate the thyroid meds. I can't eat breakfast for at least an hour after taking the morning Levoxyl. Then I can't take my regular vitamins and mineral supplements until 4 hours after I take Levoxyl. I previously took Vitamins C, Bs and Magnesium (and also zinc when I struggled with colds). Then I changed to only taking supplements at lunch and dinner (which reduced the supplement daily totals).

Shortly thereafter I got severe constipation (impacted stool severity) and a really bad sore throat. I don't know which I hate worse ... the cold or the constipation!!! Of course, I'm taking thyroid to reduce my vulnerabilty to infections and improve regularity. However, most patients don't see obvious improvements in energy, regularity and/or infection resistance until 1-2 weeks after beginning thyroid. I want to see those improvements YESTERDAY, if not before!! LOL

Monday, September 13, 2010

My Super Sleuth Naturopath

My HMO primary care doc didn't even want to discuss my blood test results. She considered all my results within normal limits. However, she had not received the CBC results which showed low WBC (white blood cells) and low MCHC (mean corpuscular hemoglobin concentration). Nevertheless, my naturopath wanted me to discuss those results in person, rather than exchange more emails. My blood test results gave my naturopath many more clues about why I experienced 8 gastrointestinal infections in the past 4 years, as well as why I feel so tired now.

Above all my ND recommended that I begin a low dose thyroid medication. Over the past 12 years my TSH levels have been rather high. In 2002 the normal TSH range was changed from .5 to5.0 to .3 to 3.0. However, my HMO didn't revise its normal range. So they continued to ignore my TSH levels which have slowly risen from 3 to 3.71 over the past 12 years. That's not dramatic, but I've had so many symptoms of hypothyroidism most of my life. Also my Free Thyroxine (T4) level was on the low side of normal. Over the past 12 years I've noticed more sensitivity to cold, have low basal temps, cold hamds and feet which become numb, chronic constipation, above normal cholesterol (over 200) for the past 10 years), chronic respiratory, bladder and gastrointestinal infections, loss of the outer 1/3 of my eyebrowns, ever increasing fatigue, and this year my LDL result was at the high end of 'normal'. Above all I had an autoimmune disease (celiac) which is highly correlated with autoimmune Hashimoto's thyroiditis. So those years of undiagnosed celiac disease could have also caused autoimmune thyroid damage. Even though I stopped eating gluten 6 years ago, the damage was done.

So I took my first Levoxyl (.05 mg levothyroxine) tablet this morning. I didn't experience any obvious side effects. I had a bit of a headache, but that could have been lack of sleep (I get headaches if I don't get 9 hours of sleep). I did feel a bit more energetic. However that perception of energy could be the 'placebo effect' because I anticipate getting more energy, warmth and regularity while taking Levoxyl.

In order to resolve the low MCHC problem, possibly due to iron deficiency or folate or B12 related anemia, my ND gave me a list of iron rich foods. I told her iron supplements make me constipated. So she recommended I try to eat at least 15 mg of iron daily. Surprisingly, I enjoy most of the foods on that list. Also I added a B12 supplement to my daily arsenal of vitamins and minerals.

Above all I did another microbial stool test yesterday and sent the 'specimums' (for bacteria, parasities and fungus tests) to the lab this morning. My low WBC result could come from 4 years of fighting gut bugs or from continuing to fight the parasite I began treating in June. I hope this test is negative for new (and old) bugs. I no longer have any gut pain which suggests infection. However, I'm also digesting food better because I resumed taking HCl supplements and high dose probiotics yesterday after doing the test. (I had to abstain from HCl and probiotics for 2 days before the test. I REALLY missed my HCl capsules. I felt soooo full after meals and bloated all the time. It's so nice to have my flat tummy again. LOL

Tuesday, September 7, 2010

Naturopath Appointment

My naturopath (who requested all the blood tests) asked me to make an appointment to see her in person. We've exchanged too many (over 20) emails during the past 3 months. I had planned to see her after she moved to the new office in a 'sattelite clinic', located closer to my house. However, she recently told me she couldn't move until sometime in November. So I made an appointment to see her on Thursday at the original clinic.

Unfortunately I don't plan to do the stool test (for parasites, bacteria and funguses) until the following Monday morning. I should have abstained from probiotics and HCl supplements over the Labor Day weekend so that I could do that test this morning. However, I didn't experience any dientamoeba fragilis symptoms (lower left quadrant pain) until yesterday (Monday) morning. I can only mail that test Mondays through Thursdays. So I might just as well wait until this coming Friday to start the required 3 day 'fast' from digestive supplements before I do the test.

Nevertheless, I really don't know what is causing my current lower right quadrant pain. I could still have the d-frag parasite. I could have a new gut bug. Or I could have just accidentally consumed an allergen. I'll have to wait a month after doing the stool test to receive the results. I wish that were a speedier process. SIGH

Friday, September 3, 2010

Blood Test Results

I received the last of my blood test results today (by email reminder from my HMO to check their website where my lab results were posted). All those test results were within normal range EXCEPT the CBC. I had low results for WBC (white blood count) and MCHC (Mean Corpuscular Hemoglobin Concentration).

After much online research I learned that low white blood count can be caused by (among other things) parasitic infections, amoebiasis and specifically Dientamoeba Fragilis infections. I don't know whether I developed a low WBC, because I battled that D-frag parasite for 4 months or whether I STILL have d-frag critters in my gut. I plan to take another stool test after 10 more days.

Low MCHC can be a sign of anemia, blood loss or low vitamin B6. Because I've taken B6 regularly for years and haven't given blood, I suspect anemia. I've felt more tired than usual for the past few years. I thought fighting all those intestinal infections made me more tired, but now I realize inadequate iron levels constributed to my fatigue. I know that in the recent past, when I wasn't taking HCl supplements, I have eaten less heme foods (meats) and probably not efficiently digested what I did eat. Without adequate stomach acid, the stomach can't effectively digest protein and/or absorb iron from foods. I haven't weighed enough to give blood since I was in my freshman year of college.

However, I gave what seemed like a lot of blood for all those blood tests. I also have a constant reminder of that blood draw. The lab tech punctured at least one and maybe 2 of my veins. So I have a huge, painful bruise on my left arm. Also I have a small bruise on my left upper arm, where the tech placed a rubber band device to plump the vein. My husband told me that blood banks use blood pressure cuffs, which doesn't bruise the area. Because I couldn't find a comfortable position for that bruised arm, I haven't slept well for the past 2 nights. Needless to say, I won't let that lab tech draw my blood ever again.

Although the other blood test results were within normal limits, I was surprised by 4 other results. In the lipoprotein panel, my total chloesterol was back up (from 195 3 years ago to 210 in 2010) and my LDL was near the top of the 'normal range. I never saw any previous results for LDL, because my HMO never previously did fasting tests for Lipoprotein. Also my fasting glucose was higher than I expected, although still normal.

Best of all my Vitamin D levels were normal. My naturopath insists that anyone who lives in Seattle must be vitamin D deficient. However, I walk in sunshine without sunscreen on my arms and legs on every sunny day. I also eat foods which are high in Vitamin D. After my naturopath's suggestion, I began to take vitamin D supplements. However, I only took those on cloudy, gray days.

My HMO doc wasn't concerned about any of those 'normal' results. I don't know what my naturopath, who requested the fasting tests (esp. the lipoprotein panel) will say about those results.

Wednesday, September 1, 2010

Blood, Eye and Stool Tests

After a 14 hour fast this morning I did a blood draw at my local HMO clinic for tests, which my naturopath requested. Those included lipid panel with triglycerides, CBC with ferritin, comprehensive metabolic panel, 2 liver functioin tests (ALT and AST), a Vitamin D test and 2 thyroid function tests. I was told that they would send the results to my naturopath. My HMO primary care doc should have most of the results (except Vitamin D test), when I see her tomorrow for my physical (primarily pap and pelvic exam plus any of my concerns). I plan to update that doc on my gut bug treatment history. She's rather clueless about how I could even get parasites, candida and pathogenic bacteria.

I also scheduled an eye exam with an opthalmologist at the GHC See Center on September 20, because I had burning eye pain while taking Iodoquinol. I sure hope that drug didn't affect my vision, because I don't think that could be reversed.

Today my husband will purchase a Metametrix (DNA) Microbial Ecology Profile stool test at the lab affiliated with my naturopath's clinic. I plan to do that test sometime within the next 2 weeks. I currently don't have any obvious gut bug symptoms. However, I'd like to know for certain that I eliminated the d-frag parasite and H. Pylori bacteria. Nevertheless, I won't receive the stool test results until a month after I do the test. Fortunately I feel really well. I have no intestinal pain. So I don't think I have any new nasty intestinal critters. However, with my history, I hesitate to consider myself totally recovered without seeing a stool test which is negative for pathogenic gut bugs.

I'm still taking the high dose (50 billion cells per capsule) probiotics twice daily. Those seem to have greatly improved my regularity. I'm also continuing to take the HCl capsules (one with smaller meals and 2 with larger meals) without discomfort. I know I will need to abstain from both the HCl and probiotics before I do the stool test. So I plan continue taking those for another 7-10 days, before I do the test.

Nevertheless, I'm not planning to vacation outside Seattle (like Maui) this year. Feeling well, i.e. free of painful intestinal symptoms, seems more exciting and satisfying that any vacation experience. Of course, if I receive a bad stool test results, I won't have already booked a plane flight and lodging. So I will be home for treatment, if necessary. Obviously, I still hesitate to believe I'm truly 'well'.

Friday, August 27, 2010

Sorbitol and Sugar

The day after my first (gastrointestinal) pain free day I snacked on some prunes when I first got up. I didn't need those for 'regularity', but just wanted to enjoy the prunes before they got too dry. My husband had purchased a new tub of prunes over the weekend. I enjoyed one after dinner Monday night. So I wanted a few more the next morning. For the next 8 hours I had cramping intestinal pain and bloating.

I'm very sensitive to sorbitol, most likely because I have 'leaky gut' caused by years of undiagnosed celiac damage to my intestinal lining. Any sorbitol sweetened gum, candy, etc. can cause hours of excruciating (bit of broken glass in my intestines) pain, bloating and eventually diarrhea. So I obsessively avoid that artificial sweetner and any other alcohol based artificial sweetners, like mannitol, xylitol, maltitol, etc. All of those cause me to have painful gastrointestinal reactions.

However, I easily tolerate fruits with natural sorbitol, like fresh figs, apples (or apple juice), peaches, pears and plums. So I didn't realize that prunes contain more natural sorbitol than any other fruit. Now I know and will limit prunes to one after a full meal, rather than eat those on an empty stomach.

I already abstain from cane sugar, one of my diagnosed allergens. So I sometimes substitute beet sugar on fruit like strawberries or raspberries. However, more recently while adjusting to HCl supplements, I monitor whether I experience burning stomach pain or reflux, signs that I may have taken too much or too little HCl. I've noticed that I get reflux after eating strawberries or raspberries topped with about 1/2 teaspoon of sugar. I thought that reaction was caused by the acidity of those berries.

Although other acidic fruit, like tomatoes and citrus, can irritate an inflamed esophagus, they don't cause reflux, because they don't relax the lower esophageal sphincter (LES). So I reread the list of foods which relax the LES and cause reflux (according to Dr. Jonathon Wright, author of 'Why Stomach Acid is Good for You'). That list included SUGAR ... not honey or agave or stevia but SUGAR, processed beet or cane sugar. So the next time I had strawberries on my peanut butter and muffin, I used about 1/2 packet of Equal. I didn't get ANY reflux, despite taking HCl with that meal.

I know ... Equal is the dreaded 'aspartame', which can cause headaches and other symptoms, when used regularly. However, I don't consider 1/2 packet of Equal 1-2 times a week 'regular use'. I rarely drink aspartame laced diet pop any more. I don't use aspartame on anything else or consume any other aspartame laced foods, mainly because I rarely consume processed, packaged foods or snacks. So I plan to use a tiny bit of aspartame to sweeten strawberries or raspberries, when I eat them on my peanut butter muffin. Stevia is fine for other fruits, but seems too bitter (even the least bitter brand) for strawberries and raspberries.

Anyway, I learned yet another reason to avoid sugar: Sugar relaxes the lower esophageal sphincter and causes reflux. No wonder I could so easily throw up after I ate even moderate amounts of sweets. I never had to force myself, because the sugar sweetened food was coming up all by itself. I just decided to 'go with the flow'. LOL

Monday, August 23, 2010

Afraid to Believe It

For the past 5 hours I've experienced absolutely NO gastrointestinal pain. This is the first time in 4 months!! Perhaps the second round of Iodoquinol did completely eradicate the d-frag parasite. So what I experienced during the past 5 days was really lingering Iodoquinol side effects. Almost like magic 120 hours (exactly 5 days) after I took my last Iodoquinol capsule, the lower right sided and every other intestinal pain just disappeared.

The bloating which I experienced during Iodoquinol treatment began to decrease on Sunday. However, I suspect that was related to indigestion due to hypochlorida (low stomach acid). Iodoquinol was so caustic to my stomach that I had to stop taking HCl supplements during the second round of treatment, although I resumed using HCl with no problem after the first round of Iodo. After I stopped taking Iodo 5 days ago, I resumed taking mastic gum and continued taking L-glutamine, which previously healed my stomach from H. Pylori damage. By Saturday I no longer experienced any stomach pain. So I decided to take one HCl capsule with dinner. From then on I continued taking one capsule with each meal. Thereafter each day the bloating decreased a little more.

Also I no longer have irregularity. Perhaps the HCl helped me more effectively absorb the magnesium supplement which usually helps regularity. Perhaps the HCl just improved my digestion. Perhaps the Iodoquinol had previously caused constipation. I don't know for sure what caused that irregularity, but I'm glad it's gone.

I'm afraid to believe that I can actually experience pain free digestion. I used to get lower right quadrant pain within an hour after eating. That pain lasted until just about time for the next meal 3-4 hours later. Usually aerobic exercise like walking or yoga gave me some pain relief. However, I didn't do any aerobic exercise this afternoon. I stood processing vegies for our freezer and then emptied the dishwasher.

If I continue to improve, especially regularity-wise, I'll get my blood tests later this week (7-9 days after I stopped taking Iodoquinol). Then I can do that stool test early next week. Unfortunately I won't get the results back for another month. However, if I don't have any painful symptoms, I'm inclined to believe I'm free of gut bugs!! YIPPPEEEE!!!

Saturday, August 21, 2010

No Relief Yet

I stopped taking Iodoquinol over 3 days ago. The painful side effects and lack of improvement just became too much. I didn't know whether those symptoms came from dientamoeba fragilis or Iodoquinol. However after one 20 day cycle and another 15 days cycle of Iodoquinol, I expected to experience some improvement. Instead I felt worse each day. So I told my doc, who told me to take a break from Iodo treatment.

After I finished the first Iodo cycle, I felt better within 24 hours. However, after discontinuing that drug 5 days before the end of the 2nd cycle I did not experience any symptom relief. Today I could more easily tolerate the symptoms, but I may just have become accustomed to constant pain and bloating. Maybe the bloating and pain is a teensy bit less today. However, I still have sharp lower right quadrant pain or lower left quadrant pain plus some bloating. The pain seems to only occur on one side at a time, which is an improvement over what I experienced while taking Iodo.

So perhaps the symptoms will decrease slightly over the next week or so. My doc advised me to wait a week after stopping Iodo before taking blood tests. So I assume that drug takes a week to clear my system. Maybe that means I'll continue to experience side effects for 4-7 more days. Oh joy!! I'm so tired of cramping pain. I want to be well yesterday. I've had a few days of relief during the past 4 years, but I can count on one hand the days I've had painfree hours, but never whole days.

The good news is that I tried taking one HCl capsule with dinner tonight. I ate chicken with garlic sauce and green beans with olive oil. Hopefully that was enough protein/fats to need that one capsule. I sense slight burning. So perhaps my stomach has not healed enough from the Iodoquinol damage to try HCl yet. However, I'm tired of tasting last night's dinner the next morning. I'm tired of not digesting food well.

I'm also plagued by irregularity, despite consuming loads of fluids, fiber and magnesium. I usually experience that symptom when I have parasites, but I experience diarrhea with bacterial infections. So I wonder whether I still have the dientamoeba. At this point I don't know what to do beyond just try to get through one day at a time. 7 days post Iodo I'll do a 12 hour fast and take those blood tests. Then I'll abstain from probiotics and HCl for 3 days and do another stool test to determine if I still have Dientamoeba fragilis or maybe contracted another gut bug.

I really hope my current symptoms are caused by Iodoquinol and will disappear within a week or so. However, I've had that lower right quadrant pain for over 4 months now. At least I know that's not appendicitis, because I spoke to my HMO's consulting nurse about my symptoms. She reassured me that I didn't seem to have appendicitis. Nevertheless, I really don't know what's causing these current painful symptoms. I only have theories, based on speculation and experience.

Wednesday, August 18, 2010

Ready to Quit

I just emailed my doctor the following letter:

"I'm on day 15 of my second 20 day treatment with Iodoquinol, which is my 4th drug treatment for dientamoeba fragilis. Before I take my first Iodo capsule with breakfast, I notice the same lower right quadrant cramping pain which I had before I began treating this parasite. After taking the Iodo capsule, I experience additional severe left lower quadrant cramping pain, intense bloating, intermittent upper left and right quadrant (sharp) pain, some nausea and increasingly intense burning eye pain. All those side effects increase as the day progresses and I take more Iodo. During the evening after taking the Iodo capsule with dinner, I feel so bad I can't sit because of cramping pain and can't lay for fear of throwing up. Each day the symptoms feel more intense. SO I NOW WONDER whether Iodoquinol is actually eliminating the d-frag critter which I assume caused the lower right quadrant pain or whether the Iodo side effects just distract me from that LRQ pain or whether the LRQ pain is really caused by an inflammed appendix, which Iodo really can't treat.

IF IODOQUINOL IS ELIMINATING THE PARASITE WHICH CAUSED MY INITIAL LOWER RIGHT QUADRANT PAIN, SHOULD I STILL BE EXPERIENCING THAT PAIN AFTER TAKING IODOQUINOL FOR 35 DAYS? I'm beginning to wonder whether the risk of Iodoquinol side effect damage is less than the risk of dientamoeba fragilis damage and whether I even still had that parasite when I began this second round of Iodoquinol. I considered whether I had an inflamed appendix, when I still experienced LRQ symptoms after completing my first Iodo treament cycle. However, I weighed the risks of Iodoquinol side effects against risks of hospitalization to remove an appendix and decided to resume taking Iodo. Now I'm really uncertain whether Iodo has done anything beyond cause painful side effects.

SHOULD I CONTINUE TAKING THE IODOQUINOL FOR THE NEXT 5 DAYS DESPITE RISKS OF SIDE EFFECTS? PLEASE ADVISE."

My doctor replied: "Take a break on this. I was really hoping for the retest before the second round. We need to make sure you still have this before continuing."

Despite my fear that I won't eliminate this !@#$%^ parasite if I discontinue the Iodo before I finish the 20 day treatment, I've had enough of side effects, feeling horrible after every meal and dreading meals because I know I will feel horrible after taking the Iodo capsule. I won't take Iodo ever again. I've read that Secnidazole is an effective one day treatment for d-frag. So I'll suggest that to my doc, IF I still test positive for d-frag in my next stool test. Meanwhile I need to wait until my stomach heals so that I can take HCl supplements and improve my digestion. Hopefully taking L-glutamine and mastic gum will heal my stomach. I noticed that taking a probiotic before breakfast as well as one before bed improved my digestion somewhat today. However, I still had acid reflux after a bland lunch.

These past 4 years of fighting gut bugs have really worn me down. I definitely need a break. If the lower right quadrant pain continues, I'll notify my traditionl doc when I see her for a physical on September 2. However, I'll also advise her of my recent history of diagnosis and treatment for dientamoeba fragilis, but I doubt she's familiar with that parasite. Many mainstream docs think that you get parasites in 3rd world countries.

Saturday, August 14, 2010

8 More Days

Obviously I'm still counting the days until I finish this Iodoquinol prescription. I'm beginning the most painful phase, the last week, when I get more nausea, bloating and diffuse (all over) intestinal pain, rather than just pain in the lower right quadrant. I recall experiencing those side effects toward the end of my first round of Iodoquinol. My doc attritubed those symptoms to 'die off' of the dientamoeba parasite. I scoffed at the 'die off' notion, because I didn't experience 'die off' with candida. However I was sick with gastro symptoms for 72 hours of Alinia (nitazoxanide) treatment for cryptosporidia parasite. I don't know whether those symptoms were caused by alinia side effects or die off. Nevertheless, the pharmacist who compounded my dairy free Iogoquinol said that bloating and all over cramping pain toward the end of the treatment period was indeed die off. I sure HOPE the d-frag critters are dying. Enough already with symptoms and treatment side effects!

After I finish this treatment on August 22, I need to wait for 7 days before I can get a blood test (comprehensive metabolic panel) which will test my liver function, among other things. My doc wants to check my liver after my past several years of taking drugs for pathogenic bacteria, parasites and candida fungus. I don't have any impaired liver function symptoms. However, I know that both flagyl (which I initially took for c-diff bacteria) and Iodoquinol can definitely impair liver function. I also know there are a few herbal treatments (including milk thistle) which can improve liver function. I just hope this 2nd Iodo treatment irradicates the d-frag critters and I survive with a healthy liver. I'm sick and tired of being sick and tired.

Abstaining from acidic foods and taking mastic gum again helped reduce the burning stomach pain I recently experienced after taking Iodoquinol. However, today I succumbed to cravings for a decaf iced coffee. I haven't had decaf (or any kind of coffee) in a couple of years, since before I first took HCl capsules for digestion. I know caffeine can relax the lower esophageal valve and allow reflux. Nevertheless, because I'm not taking HCl, I indulged today. I may pay for that 'treat' with insomnia tonight. I'm so exhausted by the heat, fighting d-frag and insufficient sleep last night.

On a brighter (or perhaps morbid) note, I found more 'Giant Microbe' souveniers in the Ye Olde Curiosity Shoppe on the Seattle Waterfront today. Last year, when I was struggling with Clostridium difficile, I found a c-diff giant microbe (soft model) at the University Bookstore. I should have also bought the Candida yeast model, but I was sooo hung up on treating c-diff, that I only bought the c-diff doll. However, today I found and bought the H. Pylori bacterium 'doll' to add to my personal gut bug souvenier collection. I checked http://www.giantmicrobes.com and found a few other familiar faces from my distant past (like HPV and TB) but no models of candida, cryptosporidia, enterobacter cloacae, klebsiella or dientamoeba fragilis. I really would like souveniers for all the gut bugs I acquired, suffered from and treated over the past 4 years. LOL

Friday, August 6, 2010

New Iodo Side Effects

For the past week I've experienced burning eye pain. I thought that washing windows with an ammonia solution caused that burning pain UNTIL I read that was a common (but potentially dangerous) symptom of Iodoquinol. I didn't have any diagnosed optic neuropathy when I started Iodo. So I didn't think I'd experience that symptom. Actually I didn't notice that symptom during my first Iodo treatment cycle. However, I've noticed that eye pain for a few days now. Fortunately saline solution eye drops relieves that slight burning pain. (Gut pain seems much worse than eye pain.)

I suffered some nausea and dizziness for the first few days on Iodo. However, more recently I've noticed much more reflux and stomach pain, especially when I take acid supplements early in a meal which I follow with Iodo. So I've decided to not take the acid supplements while I'm taking Iodo. That drug is notoriously abrasive to the stomach. My recent reflux experience influenced me to keep taking my glutamine to heal my stomach lining, but abstain from HCl unless I eat a moderate serving of protein/fat in a meal. I get too much reflux taking acid early in a vegan meal which I follow with Iodo.

I'm also beginning to notice more bloating and diffuse (all over) gut cramps now. I hope those symptoms will subside as I adjust to Iodoquinol. However abstaining from HCl supplements can also cause bloating, because I don't digest food as well. I don't know what ingredient in Iodo causes the burning stomach pain, but I know betaine hydrochloride on a sensitive (thin lining) stomach can cause burning pain. So it's another !@#$%^ if I do and !@#$%^ if I don't treatment situation. I want to kill the parasites, but I also want to prevent getting new food borne gut bugs. Nevertheless, neither do I want to damage my stomach after I spent 6 weeks on L-glutamine to heal my stomach lining. I will just observe how I react to taking Iodo, when I don't take HCl for awhile.

Wednesday, August 4, 2010

2 Down, 18 to Go

I thought I was doing pretty well with the Iodquinol this time. Before dinner tonight I had taken 2 days' worth of Iodo, but I didn't notice any really disturbing side effects. I did get some initial constipation, but I resolved that by taking more magnesium and then another probiotic first thing in the morning. However, I don't like to take an excess of either of those, because they cause more bloating. Nevertheless, I didn't seem to get that initial dizziness/nausea from Iodo, like I had during the first treatment, until after dinner tonight. SIGH

Maybe I drank enough ginger tea for the first day to prevent nausea. However, too much ginger tea can cause reflux and burning stomach pain, especially when combined with the Iodo. Today I drink much less ginger tea. However I snacked between meals, when I wasn't actually hungry, but rather just craving something to settle my stomach. Usually bland fruit, like cantaloupe, or peanut butter straight from the container makes me feel better. So I didn't actually get nauseas, but I felt overly full after snacking so much between meals and then eating regular meals so I could take more Iodoquinol with food. When I wasn't taking HCl with meals, I didn't get so much reflux from the Iodo. So today I cut back to 1 HCl with small meals and 2 HCl with dinner. However, my dinner must have been too small to protect my stomach from the Iodo. Now I have burning stomach pain, dizziness and nausea, all reported side effects of Iodo.

I also learned that diet 7up doesn't help with nausea from Iodo. Ginger tea is much more effective, but then I get reflux with the tea. That seems like a @#$%^& if I do and @#$%^& if I don't situation. I need to figure out something. I can't afford to get so nauseas that I throw up and lose the Iodoquinol dose. I did that once during the last treatment cycle, a day after I had just plain forgotten to take a dose. Maybe that's why 20 days of Iodo didn't completely eradicate the d-frag critters.

I'm really tired of treating this d-frag critter. I've had symptoms since April. I've been treating it with drugs which have awful side effects since June. Now I'll spend August suffering side effects of yet another drug treatment. This is the fourth consecutive summer I've spent feeling sick during the really warm days, when I would prefer to be biking, playing tennis, gardening, walking or almost anything except sitting at this computer researching gut bugs and drugs. I would recall that last summer I wondered whether I'd ever recover from the C-diff bacteria. Fortunately, I finally killed it with a pulse dose method, which I discovered online. I haven't found any miracle cures for d-frag, although I read about a one dose (one day) successful treatment for d-frag with Secnidazole. I'll ask my doc about that when she returns from vacation. Right now I just need to get through tonight without throwing up. Then I have to somehow endure 18 more days of Iodo and hope it works.

Monday, August 2, 2010

Resuming Iodoquinol Treatment

I now know understand why I thought my symptoms might be caused by appendicitis, rather than dientamoeba fragilis parasite. I read on the eMedicine (WebMD) site that "(Dientamoeba fragilis) Organisms infect mucosal crypts of the large intestine that are located close to the mucosal epithelium, from the cecum to the rectum; however, the cecum and proximal colon are usually affected." The 'cecum is the intestinal 'pocket' at the bottom of the ascending colon on (my) right side. The appendix is attached to the bottom of the cecum pouch. So cramping pain caused by parasitic infection of the cecum and ascending colon may seem to come from the appendix.

However, my lower right quadrant cramping pain (especially after eating) was soon joined by symptoms of nausea, headache, fatigue and then left lower quadrant cramping pain after bowel movements. Those were all the same d-frag symptoms I experienced initially 4 months ago and then after treatments with Alinia, Humatin and finally Iodoquinol.

I've read Iodo is the most effective drug to treat this parasite. So today I called my doctor's clinic and left several messages for her assistant, because my doc is on vacation. Then I called the pharamacy which previously prepared Iodoquinol compounded without lactose (to avoid dairy allergen reaction) to fax a prescription refill request to my doc's clinic. That may sound easy, but I spent all morning calling, leaving messages and talking to the clinic receptionist to understand their process and connect with everyone involved in that process, because my doc's on vacation.

So tonight I will begin another 20 days of Iodoquinol (3x daily). I know I will experience side effects of nausea and dizziness for the first few days. Then, when the Iodoquinol begins to kill the parasites, I will experience diffuse (all over my intestinal area) cramping pain and bloating, supposedly caused by 'die-off' toxins from the parasites. (I'm still not convinced of the 'die-off' theory, because I never experienced that with candida, which is notorious for die-off during treatment by nystatin or other antifungal drugs.) Nevertheless, I anticipate feeling a lot worse before I feel better.

I absolute hate the bloating symptom. However, that may have been partly caused by hypochloridia, because I previously took Iodo BEFORE I began taking HCl with meals. HCl significantly reduced my former symptoms of bloating and flatulence. So I may not experience as much bloating while taking Iodo. Whatever happens, I'll pay close attention to lower right quadrant colitis symptoms. If the Iodoquinol completely erradicates the d-frag, I should not experience that lower right quadrant pain after treatment.

Friday, July 30, 2010

On Second Thought ...

After ordering another DNA Microbial Stool Test through my doc's assistant, I learned I won't have the test result for another 4 weeks. Meanwhile, if I do still have d-frag parasite infection, those critters can just flourish in my gut for about 7 weeks and cause all kinds of damage, not to mention horrible symptoms. During today my symptoms went from lower right quadrant pain to left quadrant pain, nausea, fatigue and headache. So I'm fairly certain I still have d-frag.

I emailed my doc (who's on vacation) and hopes she reads my email. On Monday I'll again speak to her assistant, but I'll request another prescriptioin for Iodoquinol treatment. As uncomfortable as I during at least 2 weeks of Iodo treatment, I know that's the most effective treatment for d-frag. So far this summer looks like another summer of gut symptoms, treatment with horrible side effects, end treatment, get recurrent symptoms, resume treatment, etc., etc. ad nauseam. No pun intended. I've had nausea both with and without treatment. Thank goodness for ginger tea, which relieves nausea.

Dientamoeba or Appendicitis??

My lower right quadrant cramping pain has become more severe and constant each day. I researched appendicitis symptoms, which include cramping pain, bloating, and nausea. However, I have experienced this LRQ cramping pain since March or April this year, before I requested another stool test for parasites/bacteria. Treating the Dientamoeba Fragilis parasite with Alinia didn't decrease the pain. Treating with Humatin decreased the pain a bit, but that cramping pain returned almost immediately after I stopped taking the Humatin. Treating the d-frag with Iodoquinol seemed to decrease the pain. However Iodo had such horrible side effects (diffuse cramping pain, bloating and nausea) that I just wanted to get through the treatment. Also I had that accident, in which I suffered so many scrapes and bumps, that 'counter pain' distracted me from my gut pain. Nevertheless I noticed that LRQ pain slowly increased after ending treatment with Iodoquinol.

Before this morning I really suspected appencitis cause that LRQ pain. However this morning I also experienced lower left quadrant pain, nausea and more fatigue, which were my previous d-frag symptoms. So I've decided to ask my naturopathic doc to order that stool test to determine whether I still have d-frag or some new critter causing my symptoms. Before I can take that test, I'll need to refrain from digestive enzymes and probiotics for 3 days. I hate that requirement, because HCl supplements have really improved my digestion. Nevertheless, if I have a gut bug, I'll definitely want diagnosis with that test.

Meanwhile, I'll also consider calling my HMO (traditional) doc to determine whether I have signs (blood tests for inflammation markers and CT scans) of an inflammed appendix. At this point I still could have either problem. Inflammed appendix also causes nausea and bloating. If I could wave a magic wand, I'd like that LRQ pain to just disappear. My second choice would be to treat another gut infection. My last choice would be treating appendicitis or even removing the appendix. However, I want to know absolutely that my appendix is inflammed. I've read that most docs will remove a healthy appendix, to 'prevent future problems', even though a healthy appendix proves the pain was not caused by appendicitis.