Tuesday, June 29, 2010

Good/Bad Health News

Since my husband generously shared his cold germs with me, I've had a very sore throat, cough, sinus congestion, runny nose and headaches. I anticipate overcoming this congestion and breathing normally again. Nevertheless, I know the cold's progression by watching my husband's symptoms appear and subside. At least I didn't lose my voice like he does occasionally. That would be very uncharacteristic for me. LOL

Meanwhile I'm still taking my morning and bedtime cocktail of glutamine powder with turkey rhubarb tincture drops dissolved in a cup of water with which I take 1 or 2 mastic gum capsules to fight the H. Pylori bacteria and heal my stomach. I've heard that glutamine can also heal intestinal damage from celiac disease. I look forward to that benefit, because I frequently experience intestinal cramping pain. Occasional moments of freedom from cramping pain are rare and far between.

I can't really tell whether the Iodoquinol is killing my dientamoeba fragilis parasite. However, I've progressed through side effects of nausea, dizziness and headache. Now I'm in the chronic diarrhea phase, which could continue as long as I take Iodoquinol (3x daily for 20 days). Actually I prefer diarrhea to constipation (which pathogenic gut bugs often cause me), but either condition exacerbates hemorrhoids.

The GOOD NEWS is that I found (through a friend's recommendation) a reasonably priced, high dose probiotic which does NOT contain FOS (fructooligosaccharides). FOS is a 'prebiotic' which supposedly feeds the good bacteria in the intestines. However, FOS also causes bloating and flatulence. Any bloating causes me to have cramping intestinal pain, perhaps because my gut never completely healed from many years of undiagnosed celiac disease damage. Older adults often do not completely heal even after years of gluten abstinence.

Originally I worried that a probiotic which did not contain FOS would not be as effective at increasing good bacteria, because I've taken probiotics WITH FOS (and suffered the side effects) for years. I heard that people adjust to probiotics and don't feel the bloating, cramping pain after adjustment. However I've NEVER adjusted. Lower dose probiotics cause less bloating, but I still experience those side effects. Nevertheless, I assumed I had to endure those side effects in order to increase my good bacteria. Fortunately, I was wrong.

I asked both my new doc AND my old doc (via email) about the necessity of FOS in probiotics. Both said "not necessary". My new doc does not recommend taking any FOS, maybe because she appreciates the extent of my intestinal damage at this point and the severity of pain I experience from any bloating. I also read that we can consume enough prebiotics from higher fiber carbs in our diets without taking FOS. Foods like garlic, leeks, onions, asparagus, artichoke, berries, kale, bananas and legumes all have indigestible fiber which feed the probiotic (good bacteria). I GROW kale, onions and berries in my garden. I eat at least one of those foods daily.

After receiving encouraging advice from my doc, I ordered the new probiotic online. It offers 50 billion viable good bacteria per capsule. A bottle of 90 capsules costs $40. I will take a higher dose (2 capsules daily) after I treat the parasitic infection, because antiparasitic drugs can destroy good and bad microbial intestinal critters. After taking any antimicrobial drug I take a week of really high dose (127 billion viable cells) probiotic to restore all the good bacteria I may have lost in treatment. I know that some of the good bacteria survive, because taking high dose probiotics reduces the severity of drug induced diarrhea. Since I'm now suffering that diarrhea, I look forward to receiving and taking the new probiotic. I now take a lower dose (8-12 billion live cells) probiotic 2x daily, but that has FOS which increases my pain. I anxiously await the arrival of my new probiotics.

Eating wise I'm FINALLY learning to stop eating when I feel full and not have another bite until the next time I'm definitely hungry. After the Heidelberg capsule test, which showed my stomach produces a little stomach acid after 30 minutes, I can no longer could rationalize eating past full, because I don't digest the food. So now I just eat very slowly to wait for stomach to begin releasing acid. If I don't feel satisfied, when I feel full, I still quit eating, because I know after 1-3 hours, I will feel satisfied. If I overeat past full, I experience intense pain 1-3 hours later. Currently my stomach hurts after eating 'just enough'. I suspect that's a side effect from Iodoquinol, which lists 'stomach pain' as a common side effect.

Despite all my current symptoms and treatment reactions I feel more hopeful than I have in many years that I can eventually feel healthy and have healthy digestion. I know that low stomach acid caused my chronic intestinal infections. I know I can heal my stomach and intestinal inflammationthat caused chronic pain. After I heal the stomach lining (with glutamine) I can begin taking HCl supplements to improve my digestion. Because my stomach produces SOME of its own acid, the HCl may stimulate it to make more of its own acid eventually. I can see the light at the end of the tunnel. It's a lighted sign that says "healthy digestion"!!! LOL

Wednesday, June 23, 2010

Hypochloridia

The Heidelberg capsule test was fun! After fasting 15 hours and no fluids 4 hours before testing, they gave me a bit of water to swallow the capsule, which was tied to a very thin thread. I still felt the thread, but got used to it. They gave me a radio transmitter thingy to wear around my neck (close to my stomach), which transmitted the results to a big screen, where I could watch how quickly my stomach produced acid after each of 5 biocarbonate 'challenges' (bicarb disolved in a tiny bit of water). The first time I had a normal recovery (from alkaline to acid in less than 20 minutes). The next 2 were closer to 30 minutes and the last 2 were shorter, but still abnormally slow. So I produce stomach acid, but more slowly than normal.

I suspect the mastic gum treatment for H. Pylori helped increase my acid production. However, I can't take HCl acid supplemental capsules to normalize digestion, until AFTER I heal the H. Pylori stomach damage (and kill the HP). So I'll continue with mastic gum, plus turkey rhubarb root tincture and glutamine. I can take those all together at the same time.

The dientamoeba fragilis battle rages on. My previous doc (I'm NEVER going back to him!) prescribed Alinia, which is never used for d-frag, for 3 days, which didn't work. Then he prescribed Humatin for a week, which didn't work. So now I'm sicker than ever (constant gut pain and bloating) with less good bacteria. My new doc showed me in her 'bug treatment' manual that iodoquinol (my first choice before my previous doc recommended Alinia) is the most effective for d-frag. However, I didn't want to take iodo, because its 3rd ingredient contains lactose (I have casein allergy and get bad 1-2 week reactions). So my new doc told me a compounding pharmacist can prepare the iodo w/o lactose. Hopefully my local HMO pharmacist can prepare a lactose free iodo and I can resume fighting the d-frag critters soon (for the next 20 days). OH JOY! Another summer spent suffering side effects from drugs and symptoms from bad bugs. GRRRR!!!

Nevertheless I'm overjoyed to find this new doc who is part of a real CLINIC with many doctors who are all trained and managed by Dr. Jonathon Wright, who wrote "Why Stomach Acid is Good for You". I also learned that my previous doc charged me for the whole DNA Microbial test ($340) 4x, when I only needed the gut bug section ($160). He always bragged about trying to save his patients $$$. So untrue. Anyway I'm very pleased with my new doc, who is very experienced in parasites, gut bugs, food allergies, gluten intolerance AND stomach acid deficiency problems.

I still need to endure treatment for d-frag and H. Pylori, before I can resume taking HCl. Nevertheless, hypochloridia (rather than achloridia or no stomach acid production) means I can eventually stop using HCl and have normal digestion. WHAT IS THAT???!! LOL The last time I experienced anything close to normal digestion was when I was taking supplemental HCl and controlling c-diff with vancomycin, during my last Maui visit. Low stomach acid, food allergies and gut bugs ALL impair digestion.

Monday, June 21, 2010

Heidelberg Capsule Test

I finished the Humatin (to kill the dientamoeba fragilis parasite) last Thursday afternoon. 4 days later I STILL have lower left quadrant cramping pain, especially after meals, and lower right quadrant pain after bowel movements. I suspect I still have the d-frag critters in my intestines. However, I have also been taking a daily high dose probiotics (127 billion live good bacteria) since Thursday evening. Nevertheless, I will just endure the gut pain until after my appointment on Wedenesday (June 23) for a Heidelberg capsule test for stomach acid production.

I will take that test at the Tahoma Clinic run by Dr. Jonathon Wright, who wrote "Why Stomach Acid is Good For You". They will give me the test, after I fast for 12 hours (not even water 4 hours before the test). I can't take any OTC meds 48 hours before the test. I can't take any prescription meds (acid blockers) 7 days before the test. Basically I swallow a capsule, which consists of a tiny pH sensor and radio transmitter compressed into a container which is the size of a large vitamin capsule. That is attached to a long thread so they can retrieve the capsule from my stomach after the test. I swallow a baking soda mixture which turns my stomach alkaline. Then they measure the rate at which my stomach produces enough acid to change the pH back to acidic. They may do a series of bicarbonate challenges to measure that rate.

I'm certain that I can easily fast from dinner the previous evening until after the test. Abstaining from food AND water will be more difficult, but I did that after I reacted to Percocet (prescribed for a hemorrhoid removal procedure). I didn't choose to fast. I was so nauseas that I threw up everything including water for 18 hours after taking Percocet for pain from the botched 'banding'.

After the stomach acid test, I will see one of their docs to discuss my test results, how that may have influenced my gut bug history and how to resolve any problems I have. The doc who will see me has experience with parasites and possibly celiac disease and food allergies. I may request a blood test for nutrient deficiencies, because I suspect I have B12 and iron deficiencies, which may explain my ever increasing fatigue.

Thursday, June 10, 2010

More HMO Pharmacy Screwups

My doc emailed me last night to say that he called in my prescription for Humatin (paromomycin) to treat the dientamoeba fragilis parasite. So early this morning I called my local HMO pharmacy to ask whether my prescription was ready. They told me they had NO record of my doctor ever ordering that medication. I verified the drug and my doctor's name and they again said he never called it in. I believed he had called in the prescription, but someone in the pharmacy lost the order.

Nevertheless, I called my doc and verified that he had called the prescription to my local HMO pharamacy. Then I called the pharmacy again and told them that my doc had indeed phoned in my prescription last night. So whoever answered the phone told me to hold on while she looked for my prescription order. Meanwhile I was standing in my bathroom dripping wet while the shower water was running. The best way to get someone to call you back is to call them and get into the shower. I got 3 calls this morning while trying to take my shower. Anyway I finally got tired of waiting for the pharmacy person to get back to the phone. So I hung up and finished my shower.

Then I called the pharmacy again. Fortunately the person looking for my prescription answered the phone and told me that she found it. It was 'in the back', because they didn't recognize the drug. She told me my doc had ordered 'humestin' for stomach ulcers. I know my doc ordered 'humatin' for my parasite, but the pharmacy blamed the doc, rather than blame their own personnel. So we verified that the drug was actually 'humatin' (an antibacterial/antiparasitic drug).

Then the pharmacy person had to locate that drug, because my local pharmacy doesn't carry it. The HMO drug availability site listed humatin as one of the drugs they carried. However per usual my local pharmacy did not carry it. I had the same experience with Alinia exactly one week ago. Fortunately they called me back again to say they found 22 capsules at another clinic. I told them to transfer my prescription to that clinic. So my husband could pick up my prescription on his way home (by bus) today.

So tonight after dinner I will begin yet another drug to treat d-frag. The side effects are nausea, stomach (probably intestinal) pain, diarrhea, etc. I already have the first 2 symptoms from the parasite. So I may either experience more intense pain and nausea or decreased symptoms while the drug kills the d-frag. Whatever happens, I'm looking forward to 7 more days of discomfort while I wonder whether this drug will work.

Meanwhile I'll wait for the other clinic (which reviewed my patient history last night) to call me to say whether they want to take on my case (with chronic gut infections). I won't visit that clinic until I finish 7 days of Humatin side effects and hopefully erradicate d-frag. So at the earliest I could visit that clinic a week from tomorrow. More waiting and wondering ...

Wednesday, June 9, 2010

7 More Days of Side Effects

My doc decided to try Humatin (paromomycin) to treat my d-frag parasite, after I told him I prefered that drug over iodoquinlon, which contains lactose. (I have a dairy allergy.) He thought Humatin might work, since Alinia didn't kill off the d-frag. Actually I think he didn't give me enough Alinia or a long enough treatment period. Nevertheless, I prefer a drug which doesn't contain my allergens.

Maybe this one will kill the rest of the parasite in my gut. I didn't feel as intense pain or nausea after Alinia treatment as I did before treatment. However, I really don't know how much Alina side effects was due to the drug or the soy lecithin in the drug. Maybe Humatin will finish off the d-frag critter ... Maybe not. This undertreating and then changing drugs approach seems very familiar, like what my doc did a year ago for my c-diff infection. Here we go again ...

Meanwhile the Tahoma clinic staff docs meet tonight to review my patient history and decide whether anyone can resolve my problem of recurrent gastro (bacterial, fungal and parasitic) infections. I don't want to go to their clinic while I'm on Humatin, which may interfere with their test results. So the soonest I'd want to make an appointment will be a week from Friday. At this point I just want to survive a week of Humatin side effects.

Tuesday, June 8, 2010

Continued D-Frag Symptoms

I feel worse today. My cramping pain feels like a charley horse in my lower right quadrant. I felt very nauseas after lunch, although I didn't overeat or eat any food allergens. So I emailed my naturopathic doc to tell him that my d-frag symptoms are back. I told him that I either need a longer treatment with Alinia or treatment with a different drug. Per usual he's out of the office when I'm sick. So I may not hear from him until tomorrow. If he opts for Alinia, I may have to hassle with my HMO pharmacy, which carries Alinia, but not at the local clinic. More fun and games ...

Meanwhile I contacted the local clinic which deals extensively with digestive problems. The head of that clinic wrote "Why Stomach Acid is Good for You". I suspect my history of contracting one gut bug after another is related to my digestive challenges, possible low stomach acid. They advised me to fill out the (9 page) patient history form and send that. So their doctors can review my history and decide whether they could help me. I love that honest approach! Most docs will say, "Sure, come in and we'll look at you" and then charge me for multiple office visits, tests and treatments while they guess what might cause my symptoms. So even though I feel like @#$% right now, I'm hopeful that somebody can help me resolve this chronic gut infection thing.

Monday, June 7, 2010

D-Frag Update

After hassling with my HMO pharmacy, I finally got enough Alinia for my 3 day treatment of the dientamoeba fragilis parasite. My doc called in the prescription early Tuesday morning. I called the pharmacy to determine whether my prescription was ready. They told me they didn't have any Alinia at that clinic, but would contact other clinics. Later they told me they located some Alinia and would have them on Wednesday afternoon. When I went to the pharmacy on Wednesday, after an hour wait, I was informed that they could only locate 5 of the 6 pills (needed for the 3 day Alinia treatment). They weren't certain when they could get the 6th pill. One person tried to dissuade me from even beginning the treatment, because I only had 5 pills. I told her I'd already suffered painful symptoms of this parasite for over 2 months and didn't intend to delay treatment any longer.

I asked when they might get my last pill, they told me to call the pharmacy the next day. Before I called the next morning, someone from the pharmacy called me to tell me they did get that last pill, which I could pick up anytime. Of course that was after I freaked out about not having enough Alinia for a full treatment. So I picked up the last Alinia Friday afternoon and took that Saturday morning, which finished the prescribed 3-day treatment for d-frag.

During the 3 day treatment I experienced many common Alinia side effects (nausea, cramping pain, diarrhea one time). However, I also experienced my usual soy reaction (waves of cramping pain through my gut). I suspect that I didn't experience more diarrhea from the Alinia, because soy usually causes constipation. So the 2 side effects cancelled out each other and I had rather normal stools. However, the cramping pains continued after I took the last Alinia Saturday morning. So I don't know whether I still have d-frag in my gut (which also caused cramping pain) or I'm still reacting to soy.

I have not begun the 7 day post treatment probiotic program (127 billion good bacteria daily), because I don't know whether I actually killed off the d-frag. I'd hate to take all those probiotics and then destroy them with another treatment. So I decided to wait 3 days after treatment to see whether the possibly soy reaction my current cramping pain is just delayed soy reaction from the Alinia.

If I feel almost normal tomorrow, I will commence the 7 day probiotic treatment. If not, I need to tell my doc that the alinia didn't erradicate the d-frag. However, I don't want to take more Alinia (which contains soy). I'd consider Humatin (paromomycin), which is free of my allergies, even though people can develop c-diff after taking Humatin for long periods. I just hope Alinia did the trick. Only time (and absence of gut cramps) will tell.

Tuesday, June 1, 2010

Alinia Contains Soy Lecithin

Now I know why I had horrible cramping pain during my last alinia treatment (for cryptosporidia parasite). The ingredients include soy lecithin. However the other drug which could treat my d-frag critter (iodoquinlon) contains a 'lactose' ingredient, which means dairy. I have even more severe, long lasting reactions to dairy. I'll opt for 3 days of cramping pain from alinia with soy, rather than 20 days of cramping pain and irregularity from iodoquinlin. @#$%^& if I do and @#$%^& if I don't. So I chose the most effective (hopefully) and shortest treatment. It's always something. SIGH

Meanwhile I need to make an appointment with another local clinic, managed by the doc who wrote "Why Stomach Acid is Good for You". I suspect my tendency to get gut bugs is related to my digestive challenges, possibly caused by achloridia or low stomach acid. Normal amounts of stomach acid kill foodborn bacteria and/or parasites. People with low stomach acid are much more susceptible to those gut bugs.

I seemed to have acquired my latest critter (d-frag) after I went off my HCl supplements. However the d-frag may have caused the reflux which caused the burning pain which led me to my traditional doc, who advised me to abstain from HCl supplements. Ironically she never asked WHY I took HCl supplements or whether I had any other digestive problems. My HMO doc always looks for the quickest explanation or treatment without considering what causes the symptoms.

My naturopathic doc also seems to use the 'treat 'em and street 'em' approach. Although he tests for the sources of my gastro symptoms with stool tests (or blood tests for food allergies), he never considers why I continue to get one bad bug infection after another. My current 2 bugs are my 7th and 8th infection during the past 4 years. Two per year. This is getting old. I need to find a doc who wants to do some medical detective work and treat the cause of my chronic vulnerability to gut bugs.

More Delay

After my doc called in my prescription for Alinia to treat d-frag, I learned that my local HMO pharmacy doesn't carry that drug. So they need to ship it from another city. I can pick up the prescription tomorrow. Now that I know what I'll take, I can wait another day to start side effects of stomach pain and nausea. Wait! I already have all those side effects. LOL Maybe reported side effects of drugs are often confused with symptoms of the gut bug. I do vaguely remember feeling HORRIBLE while taking alinia. At least I only need to take it for 3 days. I sure hope that erradicates my d-frag critters. Then I'll need to follow that treatment with 7 days of high dose probiotics to prevent infection from another opportunistic bacteria.

Alinia and Mastic Gum

My doc replied to my email about treatments for dientamoeba fragilis and h. pylori. He said he prefers alinia (nitazoxanide) for d-frag, because that parasite is difficult to eliminate and alinia is very effective. Also he said that many people have h. pylori, but no symptoms, and that I could try mastic gum. I've already had peptic ulcer (caused by h. pylori) symptoms. I didn't tell him I've already taken 3 doses of mastic gum and feel a bit better (no burning pain after eating). I still feel nauseas if I eat more than very small meals. However, that could also be caused by the parasite.

In my reply to my doc's email I said I preferred a shorter, more effective treatment which may make me very sick (like alinia) to a longer, milder, perhaps less effective treatment (like iodoquinolin) for d-frag. I certainly don't want to spend the next six months (and all summer) feeling crappy while I treat d-frag with ineffective drugs (like last summer with c-diff).

So I plan to pick up a prescription for an antiparasitic drug for d-frag later this afternoon. I'm prepared to feel sick for a few days, but I don't know yet whether I'll need a longer treatment for d-frag. Maybe I'll adjust to alinia after a few days. I only took that drug for 3 days to treat cryptosporidium. Some people adjust to drugs side effects after a few days. Maybe I'll get lucky if I need longer treatment. Always the optimist ... LOL