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.