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.