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.
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4 comments:
Hi, I'm not so sure about Secnidazole on it's own for df. I have taken it in conjunction with nitazoxanide, furazolidone and doxycycline for 12 days and I felt clear from the bug for a few months. I believe I was clear but got reinfected and I later had treatment with diloxanide furoate, ornidazole (related to secnidazole), bactrim and doxy for 14 days. This didn't help my symptoms and I haven't bothered with follow up testing. I didn't want to go back on the first lot of treatment because furazolidone is particularly toxic and I believe has been implicated in causing cancer.
Cheers
Dermot
Ugh!! Sue, I am sorry to hear this! I hope you feel better now that you are discontinuing this med and that you can get to the root of the source of the original pain.
Thanks, Lisa. I'm still suffering painful (cramping intestinal) symptoms esp. 1-4 hours after every meal. I took the last Iodo capsule over 24 hours ago, but I still have all the side effects I had when I took that drug. Now I wonder whether these are caused by Iodo or whether the d-frag critters proliferated even more during my last 4 (possibly ineffective) treatments.
I expected to feel some relief as soon as I stopped taking Iodo. I did have much less pain after I finished the first 20 day Iodo treatment cycle. However, this time all the side effects just continued right on schedule (increasing after meals) just like when I took the Iodo capsules. Either longterm Iodo did real damage to my gut or I've got a more serious d-frag infection than when I was first diagnosed and treated almost 4 months ago. What a way to spend the summer!! SIGH
The good news is that I no longer have to eat regularly (every 3-4 hours) to take pills on schedule. So I can actually wait until I feel true hunger. I'm also not inclined to eat any more than absolutely necessary, because eating just causes more pain. The sooner I stop, the less my intestines are disturbed. So if I gained any weight during all those treatments, side effects and overwhelming fatigue, I may easily lose it during the next few weeks.
I really don't know whether I gained, because I haven't weighed. However everything fits too tight around my gut, which is still very bloated and sensitive to any pressure. During hot weather I wore loose dresses. However, since the weather cooled down, I'm back to jeans or denim shorts with fitted waists. OUCH!
Dermot:
Where were you when I was first diagnosed in May? LOL I could have used your helpful?? comment back then. Actually I've been treated with nitazoxanide (3 days), paromomycin (1 week) and more recently 2 (21 and 15 day)rounds of Iodoquinol.
I read an online study that said Secnidazole is very effective with d-frag. Maybe you didn't read that same study.
Did your doc recommend you take high dose probiotics during treatment or after treatment with all those antibiotic and/or antiparasitic drugs? I observed during my previous 7 gut infections (which never returned after treatment) that taking high dose probiotics during treatment prevented drug induced diarrhea and helped eliminate the bugs.
However, I did not take those at the right time of day, because my previous doc recommended 'with meals', rather than on an empty stomach. Taking probiotics with meals allows stomach acid to destroy some good bacteria and lower their effectiveness in the gut. So that left me vulnerable to new infections several times.
I'm now taking a 50 billion good bacteria per capsule probiotic 2x daily. I hope that prevents recurrence IF I actually eliminated d-frag during any one of those 4 treatments. I do plan to do a repeat stool test in 7-10 days after this Iodo has cleared my system. I'll know when I stop having Iodo side effects.
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