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.

Wednesday, July 28, 2010

HCl Treatment Requires Awareness

After taking mastic gum (with turkey rhubarb tincture) to kill H. Pylori for about 5 weeks and l-glutamine to heal my stomach lining (and hopefully my intestinal lining) for about 6 weeks, I FINALLY resumed taking HCl supplement capsules with meals. I started with one at each meal and slowly increased that dose every 4th day by adding one capsule to the largest meal. Now I'm trying 2 capsules at each meal. However, I noticed that totally vegan meals (like peanut butter and fruit on a muffin or hot cereal cooked in hazelnut milk with fruit and almond butter) seem to need one capsule. I tried 2 with those meals and noticed stomach sensitivity (slight burning pain). However I seem to need 2 capsules to digest a sandwich with meat and a piece of fruit. With an entree fish salad with or meat casserole meal I need 2-3 capsules.

Determining how much HCl I need to digest various meals seems very experimental. However, I noticed I need even less HCl than I previously did (a year or 2 ago) when I first tried taking supplemental HCl (before I took the Heidelberg capsule test). I suspect the Mastic gum and l-glutamine healed some of the parietal cells in my stomach lining so that those cells produce more of their own HCl. Last October, when I was in Maui, I remember taking 2-4 capsules with every meal. I certainly needed more than one capsule per meal. I also was quite surprised by my Heidelberg test results. I previously thought I might have achloridia, because the HCl capsules made such a difference the first time I tried them. However, I realized that I had been taking mastic gum (which heals stomach lining as well as kills H. Pylori) for 3 weeks before I took the Heidelberg test.

I've observed that my cravings and appetite have changed the longer I've taken HCl. I suspect that my cravings for sweets were entirely related to emotional eating. After I learned to examine my feelings, beliefs and thoughts to prevent my 'feel bad, eat sweets' autopilot reaction, I wanted sweets much less. However, feeling full but unsatisfied after meals still kept me reaching for a 'sweet finish' until very recently.

I didn't previously realize why taking HCl helped me not overeat. I thought I was just trying to prevent reflux, because with HCl supplements I would have acidic reflux, whereas I previously refluxed just food, with no acid. Recently I read that feeling unsatisfied after filling meals is a hypochloridia symptom. That makes perfect sense! I could eat enough to fill my stomach or even feel overly full, because my HCl production is so delayed (at least 35 minutes after I start eating), which makes my stomach empty very slowly. Furthermore without adequate HCl my body was not digesting and absorbing nutrients rapidly enough to make me feel 'satisfied'. If I restrained myself from overeating, depite feeling unsatisfied, eventually like 2-3 hours later, I DID finally feel satisfied, because my stomach DOES naturally produce some HCl, but very slowly.

Furthermore, I really pay attention to how my stomach feels when I'm eating, because I want to learn how much HCl I need to digest different kinds of meals. So I don't want to overeat more than I actually need, because then I won't know if my discomfort was caused by inadequate HCl or just too much food. Nevertheless, I know that mindful (aware) eating always helps prevent overeating. Ironically I've decided that my husband and I need to refrain from watching tv (netflix movies) during dinner for awhile. I need to pay more attention to my stomach and we need to have time to talk, more than during dinner preparation and cleanup. I noticed tonight that I ate very slowly and less than 2 cups of food seemed like more than I needed. However, I also could have needed another HCl capsule to digest my meat casserole dish.

A blog reader asked about my progress. So I want to describe how my digestion has improved. Amazingly, I feel very comfortable sitting at the table after I finish eating. I don't need to rush to the bathroom after the meal. Previously I felt so bloated and gassy or had diarrhea or just want to sit on the toilet to endure intestinal cramps after dinners. Part of those symptoms were caused by the FOS in the probiotics my previous (clueless) doctor prescribed to be taken with meals. I usually took those with dinner, so I wouldn't feel bloated and crampy all day. I could just go to bed and be gassy and bloated during sleep (obviously not very romantic). However, I previously felt a little gassy and bloated after each meal.

I recall that I often woke up with excruciating (intestinal cramping) pain early in the morning. Getting up and moving around or going to the bathroom helped me get back to sleep. However, killing the dientamoeba fragilis parasite with Iodoquinol(?) eliminated those early morning cramps. Also I stopped having lower left quadrant pain when I had bowel movements. Nevertheless, I still have that nagging intermittent lower right quadrant cramping pain, after meals for awhile, sometimes when I first get up. That pain disappears after walking or doing yoga or aerobic exercise. I'm worried that pain means I still have those d-frag critters in my intestines, because those are difficult to eliminate.

I hoped that 20 days of Iodoquinol killed those parasites. However, after rereading my posts about my symptoms before and after other treatments (Alinia and Humatin) I wonder if that pain means I still have d-frag. SIGH Nevertheless, I told my doctor that I would keep taking high dose probiotics (which really improved my digestion and regularity) and keep increasing my HCl supplements while I watched the lower right quadrant pain. If it continues, I will order another stool test, but I DREAD antiparasitic drug treatments. The side effects are HORRIBLE to say the least.

Sunday, July 18, 2010

Symptom Update

I wrote the following letter to my new doc to report my current symptoms (or lack thereof):

A few days before I finished taking Iodoquinol for the d-frag parasite, I finally realized what caused my ongoing cramping pain. I noticed the discomfort increased after meals and decreased slightly before the next meal. So I researched Iodoquinol side effects and discovered that some sites actually listed abdominal cramping as a side effect. That was more specific that the general 'stomach pain', which I read on other websites. After I finished the Iodoquinol capsules, that cramping pain lingered through the next 2 days and began to diminish on the 3rd day. After 72 hours I felt almost no cramping pain. So I'm sure that symptom was a Iodoquinol side effect.

I've also noticed that I no longer bruise easily. I was in a bicycle/pedestrian accident a week ago, where I fell onto the concrete sidewalk and suffered several bumps and scrapes. Previously I would develop many bruises from such a fall. However, this time I didn't develop one bruise. I suspect the new high dose (50 billion bacteria per capsule) probiotics and the way I'm taking those (on an empty stomach) has finally increased my good bacteria to a normal level or at least high enough to make enough vitamin K so that I don't bruise as easily. I haven't developed one bruise since I started taking those probiotics.

I was previously advised to take probiotics with meals, which I now realize could have diminished the potency of those probiotics. Maybe that partly explains why I developed one gut bug infection after another, even though I took daily probiotics and even high dose probiotics after each antibacterial drug treatment. I also took probiotics when I took the HCl capsules (with meals), which may also have diminshed the probiotics' protency.

I still have some, infrequent intestinal discomfort, more like a charley horse than a cramp, when I take the probiotic capsules in the morning as well as before bed. I'm taking high dose probiotics to prevent another gut bug infection. Since I no longer have Iodoquinol side effect pain, I'll try skipping the morning probiotic capsule and observe whether I have any daytime abdominal discomfort. If that daytime discomfort continues, I may consider retesting for parasites, parasites, etc. However, I hope the Iodoquinol killed all the d-frag critters. I don't want to endure yet another painful treatment.

I'm still taking glutamine 2x daily and look forward to beginning HCl capsules next week. I seem to already have improved digestion (almost no gas or bloating now), perhaps because I have higher levels of good bacteria from taking the probiotics properly.

Wednesday, July 14, 2010

Iodoquinol Side Effects

For the past almost 3 weeks I have suffered intestinal cramping pain that increases after meals and decreases slightly just before the next meal. I did not consider Iodoquinol, because my initial side effects of nausea and stomach discomfort disappeared when I took that drug mid meal, rather than before or after meals. I also had intestinal pain symptoms from the d-frag parasite before treatments. However, that pain was more localized (either left lower quadrant after bowel movements or right lower quadrant after meals). More recently I experienced bloating and diffuse intestinal pain (all over my lower abdomen), which almost disappeared overnight and then began immediately after every meal.

At one point I blamed that pain on the amount vitamin D I had been taking. After I stopped the vitamin D supplements and relied on daily walks in the sunshine for Vitamin D, I suspected my new probiotics caused the pain. However, I usually took the probiotic capsule before bed, not with meals.

I wrote my doctor and told her about that cramping pain symptom. She explained that was caused by "die off" from the d-frag parasite. However, I've NEVER experienced 'die off' symptoms while treating candida (a fungus) with Nystatin or while treating cryptosporidium (another parasite) with Alinia. I experienced initial side effects of Nystatin, which disappeared after a few days. I also experienced painful side effects from Alinia. However those did not disappear until after the 3 day Alinia treatment.

Ironically I didn't recall reading that Iodoquinol caused intestinal cramps. What I read was 'stomach' pain. I thought that meant the burning discomfort I could get if I didn't take Iodo with food. I never considered that medical websites would use the word 'stomach' to mean abdominal or intestinal area. How misleading! I know many people don't know the difference between their stomach area and their intestinal area, but I expected medical websites to differentiate those areas.

However, I today I reread several sites which listed Iodoquinol side effects. Several actually said 'abdominal CRAMPS' or lower abdominal pain, rather than stomach pain. So finally on the last day of taking Iodoquinol I realize that drug caused those debilitating intestinal cramps during the past 2+ weeks. I don't consider that 'die off'. I consider that a drug side effect. So I'm very glad that I only have to take one more Iodo capsule with dinner. Hopefully tomorrow morning I will begin to experience less and less pain. I've taken the new probiotics long enough to not experience much bloating or pain. I just hope Iodo killed all the d-frag critters.

Insight from Doctor Vent

After writing my previous treatment history and doctor vent post, I now understand why I hung on for so long to a doctor who didn't really care whether I got well. I have difficulty letting go of bad relationships. After such an abusive childhood with my mother, I considered my first husband a big improvement. He didn't yell at me all the time. He didn't hit me all the time. However, I missed all the signs that he controlled me, threatened me and used me. Likewise my last doctor was a big improvement over my HMO doctors who labeled my gut symptoms as 'IBS' and gave me an IBS diet sheet (which included foods I later learned were my allergens). So I ignored my feelings that my doc really didn't care about me, that he just treated my symptoms without looking for causes of my ongoing problems, and that he really didn't know how to treat my problems.

Tuesday, July 13, 2010

Treatment Update and Doctor Vent

I recently answered an email from a friend who asked how I was doing, but doesn't read this blog. My reply summarized what I've experienced healthwise during the past year. So for others who don't want to review all my old posts, I decided to post part of my reply to that friend:

Because you don't read my many blog posts about my health issues (since April), I'll try to briefly update you. You probably remember that I spent last summer and fall fighting the C-diff bacteria. In January another stool test showed I had achlorobacter (another bacteria). I treated that for 2 weeks with caprylic acid (a botanical antibiotic), but never really felt 'normal' for very long afterwards. By April I had obvious cramping intestinal pain. At first I suspected soy (one of my allergens) in makeup, shampoo, foods, etc. and found soy free substitutes for everything which contained soy. However my cramping pain continued.

So I took another stool test in early May. I usually wait 3 weeks for results of those tests. By late May I learned I had another bacteria (Helicobacter Pilori, which causes stomach ulcers) PLUS another parasite, dientamoeba fragilis, which is difficult to kill because it burrows into the lining of the intestines, which caused my cramping pain. Per usual, my doc was not available when I got my test results. So I had the weekend to do some online research about treatments.

I learned that most traditional docs treat H. Pylori with 2 different antibiotic drugs and an acid blocker drug. I did NOT want to follow that 'traditional treatment, because more antibiotics make me vulnerable to more bacterial infections and I already thought I have low (not excess) stomach acid, which makes digestion difficult. So I looked further and discovered 'mastic gum', an herbal treatment which is VERY effective against H. Pylori. I also researched treatments for the d-frag parasite and learned that Iodoquinol (drug) is most effective.

So I emailed my naturopath doc (who sells me those stool tests) and told him I preferred to take mastic gum and iodoquinol. He discounted the importance of treating H. Pylori when he said, "Many people have H. Pylori without ever having symptoms". I told him I'd had burning stomach pain for about 4 months, an ulcer symptoms. He okayed the mastic gum, but suggested I use Alinia for the d-frag parasite. I had not read anything about alinia being used for d-frag, but I had used alinia for another parasite (cryptosporidia) in 2008. I knew it was a 3 day, horribly painful treatment, but effective for crypto. So I agreed to try Alinia for d-frag and continue my mastic gum for the HP bacteria.

My cramping pain symptoms returned soon after suffering through 3 days of Alinia. I wanted to try Iodoquinol, but by then I had learned that Alinia contained soy (one of my allergens), which caused all the painful side effects. So I checked the Iodoquinol ingredients. Those included a form of dairy (another allergen). So I told my doc that I couldn't take Iodo because of the dairy, but would try Humatin (which is actually an antibacterial drug, NOT an antiparasitic drug). However I had heard that drug could successfully treat d-frag. So I took Humatin for 2 weeks. My cramping pain only slightly decreased during that treatment and got much worse after I stopped the treatment.

At that point I was very angry at my doctor, because he wasted my time and $$$ treating me with Alinia, which did not work. I also feared that I would spend another 6 months fighting d-frag, because my doc didn't aggressively treat d-frag, just like he did last summer with the c-diff bacteria. I was tired of having a doctor who seemed to treat my infections very conservatively after I had them for at least 2 months and had severe symptoms. Most of all I didn't want to keep treating one gut bug after another, paying for more stool tests, more drugs, more probiotics to replace all the good bacteria which the treatments destroyed. My doc was just treating the symptoms (gut infections). I wanted to find and treat the CAUSE of my infections.

I always suspected I had low stomach acid, because I never tasted acid when I threw up. Food tasted the same coming up as it did going down. I never had to make myself throw up. I refluxed food all the time. If I binged, I could just drink a glass of water and throw up. I only tasted acid if I threw up in the middle of the night 6 hours after dinner. Last year I took Hydrochloric acid supplements to improve my digestion. Those helped until this year when I had burning stomach pain and actual acid reflux. I suspect the H. Pylori infection caused my stomach/reflux symptoms.

So I thought low stomach acid allowed me to get all those intestinal infections, because my stomach acid didn't kill the 'bugs' before they reached my intestines, like normal stomachs do. Since I had lost all respect for my doc, still had d-frag and was not digesting well at all, I decided to visit a clinic which tests for stomach acid production and see a new doc who could find the cause of my gut bug history.

On June 23 I went to the 'Tahoma Clinic', where I took the Heidelberg capsule test for stomach acid production. (My blog describes more details of that test.) That showed I have 'hypochloridia' (very limited production of stomach acid). During the test I produced a little acid AFTER 30 minutes. With food in my stomach I probably take well over an hour to begin producing acid. Then I saw my new doc. She liked my idea to take mastic gum for H. Pylori and told me to add turkey rhubarb drops to a solution of glutamine which I drank 2x daily for 2 weeks to heal my stomach. I continue glutamine, which also heals intestinal damage, for a month.

Together we looked at her 'gut bug treatment' manual for the most effective treatment for d-frag. As I believed, Iodoquinol was the best. However, I told her I couldn't take Iodo, because it had a dairy ingredient. She told me I could get that drug compounded WITHOUT the dairy ingredient. So she called a prescription into my HMO pharmacy.

As usual my HMO pharmacy screwed up. They actually misplaced her prescription request. Then I learned they charge much more for compounded drugs (custom orders). So I called around and found a pharmacy which charged such a reasonable price I couldn't believe it. My husband picked up my Iodoquinol compounded WITHOUT dairy on the way home the day after I saw my new doc and I started the 20 day treatment.

I did okay with the Iodo after I adjusted to initial nausea and dizziness side effects. However, I usually take probiotics with any drug treatment which could kill my good bacteria, but I was running low on probiotics, which I bought from my previous doc. I did NOT want to depend on his clinic for ANYTHING. I never wanted to go back to him, especially after I learned that I could easily get Iodoquinol (the most effective drug for d-frag) compounded without dairy. I don't know why he didn't tell me that. So I asked an online friend who had a parasite infection history where he got his probiotics. Then I ordered some really high dose probiotics for a reasonable price from an online source.

I also learned from that new probiotic company that if you want probiotics to replenish good bacteria destroyed by drug treatments, you need to take probiotics on an empty stomach, not with meals. For the past 4 years my previous doc told me to take probiotics with meals. The probiotic company said that taking probiotics with meals helps digestion of the meal, but not as much probiotic reaches the intestines. So for the past 4 years I've been taking probiotics the wrong way to fight recurrent gut bugs, thanks to my clueless doc's advice. No wonder I took all those probiotics and still got new infections one after another.

However taking the new probiotics on an empty stomach allowed me to put much more good bacteria in my stomach than I had ever before taken. Most probiotics will initally cause bloating and sometimes cramping pain until your intestines adjust. After a few days of those new probiotics I had so much bloating and cramping pain that I just wanted to lay on the floor and watch tv all afternoon. Nevertheless, I wasn't sure whether the probiotics or vitamin D (which my new doc recommended I take) or the Iodoquinol (which can also cause stomach pain) caused those symptoms. So I cut waaaay back on Vitamin D and took only one probiotic daily. Slowly I have adjusted to the new probiotics, but I still get cramping pain without as much bloating now.

Tomorrow I finish my Iodoquinol treatment for d-frag. I'm fairly certain that killed all the d-frag critters, because I don't have the same kind of cramping pain I had before I treated that parasite. The recent symptoms are more all over, bloating induced cramping pain. If the Iodo caused any of the recent symptoms, that should subside as well. Best of all I can FINALLY resume taking HCl capsules to increase stomach acid, speed up digestion, eliminate feeling overly full with small amounts of food and start absorbing more of the nutrients from foods I eat. My new doc actually suggested that I wait 4 weeks before starting HCl. So if I have any burning pain with the HCl, I will stop immediately and wait another week.

Soon after seeing my new doc, My husband developed a really bad cold, which he shared with me. Both of us were coughing with stuffy noses and bad sore throats for the first week. The cough stayed for more than another week. We both still get occasional coughs.

Just when I felt healed from the cold and still suffered probiotic side effects, I was hit by a bicyclist on a sidewalk yesterday. I was running for a traffic light, when she came around a corner and hit me. I didn't see her, because I was watching the traffic light. I just felt an impact and then realized I was lying on the sidewalk with multiple scrapes and bruises. She was sooo apologetic. When I realized nothing was broken, I got up and walked to a nearby store with a bathroom where I cleaned and bandaged my wounds. At least now I have 'counter' pain which distracts me from the intestinal cramps caused by the probiotics. LOL

I really haven't vented much of my frustration with my previous doctor. I used to blame my gut bug history on low stomach acid. However, I now blame that previous doc for giving me bad advice about how to take probiotics (which kept me buying more probiotics AND more stool tests from him after I got new infections). He also sold me complete versions of the stool test for $340 twice yearly for the past 6 years, when I only really needed one section (about $150 worth). I also blame him for not aggressively treating the more dangerous infections like c-diff and d-frag.

I'm so glad I found a doc who is more knowledgable about the gastrointestinal system and naturopathic treatment. My old doc tried to use both traditional and naturopathic methods, but didn't know enough about either. He was also too busy trying to advertise his clinic and sell his books to care about patients with continuing problems. He also discounted my symptoms as 'stress' related 2 years in a row when I really had cryptosporidia (a dangerous parasite) and c-diff (a lethal bacteria). I am never going back to him, but I want to tell him why eventually. Right now I just want to get well and never get another bacterial or parasitic or fungal infection.

Monday, July 5, 2010

OOOOPPPSS!!!

Today was my 11th day of taking Iodoquinol to kill my dientamoeba fragilis parasite. I had noticed less cramping lower left quadrant pain recently. I've also slept in several days (which I needed to recover from a bad cold), because excruciating gut pain no longer wakes me up at 5am. Yet somehow I forgot to take my Iodo capsule at breakfast. I usually put the capsule on the lid of the bottle before the meal. Then about halfway through the meal I take the capsule with food (actually well sandwiched between layers of food) to prevent stomach pain. However, I noticed when I set out vitamins before lunch that the Iodo capsule was STILL sitting there.

Since I read that if I miss a dose I should just take the next dose if I remembered close to the time of the next dose, I took what should have been the morning capsule with lunch. I'm rather irritated at myself for missing that dose. I want to get rid of this parasite with the Iodo treatment. After all, Iodo is my third different drug for this parasite. I actually don't think the other 2 drugs are suitable for treating d-frag. Alinia was my previous clueless doc's first choice of treatment for d-frag. Perhaps, if he would have prescribed a longer treatment period, Alinia might have worked. However Alinia is never prescribed for d-frag treatment. My first choice had been Iodo, but I went along with my doc's choice, because I assumed he knew something I didn't. Now I think he didn't really consider what drug is considered the most effective. He was just guessing.

In hindsight, I wish I could have requested Iodo compounded w/o lactose, rather than requesting Humatin, after Alinia didn't work. However, I didn't realize drugs could be compounded to avoid allergens. I can't understand why my previous doc didn't mention compounding. I really wonder how much experience he has with prescribing drugs to treat intestinal bugs. I wonder how much of my history of recurrent gut infections was influenced by his discounting my symptoms, which deterred me from requesting tests, and then his prescribing the treatments for mild infections after I had each gut infection for at least 2 months by the time he received my test results. GRRRRRRR!!!

Nevertheless, missing one dose just means I'll take that last dose at the end. I'll take 3 evenly spaced doses, rather than 2 on the last day. My parasite symptoms have decreased slightly, but not enough to for me to feel 'well'. So I'm glad to continue fighting d-frag for another 10 days.