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I decided to go ahead with the hydrogen breath test because I am back to my status quo of D day in and day out despite my clean diet. I passed. The nurse called and said I do have elevated methane levels so they eant to do an upper endoscopy along with a colonoscopy to further investigate before proceeding with treatment. That may not happen until October. So frustrated!
I started Lugol's iodine but it doesn't seem too promising and I am hesistant to take too much because I can't find any information about how it could effect someone without a thyroid.
I get why they want to hold off on treatment but I had perfect Normans while being treated for Lymes. I want that back and don't want to wait.
They'd like to check for other causes like celliac. Been there done that. Been GF since 2011- not likely.
Just going on a rant........
Deb
"Do not follow where the path may lead. Go instead, where there is no path, and leave a trail.
-Ralph Waldo Emerson
2007 CC
2013 thyroid cancer- total thyroidectomy
2013 Hashimoto's - numbers always "normal"
2017 Lyme's Disease
I take Lugol's iodine. The person I get it from said to take two drops for every Ioderol capsule. Not sure if rhis information helps you or not. I take it because it is very inexpensive.
Good luck!
I read an account of someone who claims to have elimated her SIBO with it. One drop the first week, two the second, three the third week and she was good.
I tried three drops yesterday and got a mikd sore throat. Not sure what that indicates but doesnt seem good.
I don't need to get myself in trouble by gradping at straws.
Deb
"Do not follow where the path may lead. Go instead, where there is no path, and leave a trail.
-Ralph Waldo Emerson
2007 CC
2013 thyroid cancer- total thyroidectomy
2013 Hashimoto's - numbers always "normal"
2017 Lyme's Disease
Not sure if it's good news or not but I'm starting metronidazole today....not thrilled about another antibiotic but I'm sick of waking up at 3:30 in the morning to start my morning rounds of WD.
Happy to know that there is more to my D than MC alone.
Deb
"Do not follow where the path may lead. Go instead, where there is no path, and leave a trail.
-Ralph Waldo Emerson
2007 CC
2013 thyroid cancer- total thyroidectomy
2013 Hashimoto's - numbers always "normal"
2017 Lyme's Disease
Hi Deb,
So is the medtronidazole for SIBO?
You have been through so much with your thyroid and MC! Pretty discouraging to start your day at 3am with multiple rounds of WD! I have no words of wisdom...just words of comfort and empathy for what you're going though and hope for answers for you that end this nightmare!
Sunny
"It is very difficult to get a man to understand something, when his salary depends upon his not understanding it. "
Upton Sinclair
The only positive thing right now that I'm taking from this is that I am dealing with a piece of the puzzle that could lead to remission. Albeit a difficult thing to treat, there is still hope. I've soley been focusing on MC and thyroid and now there is more.
My GI hasn't said what it could be but I also can't get in until late September. I was told the SIBO test was negative but the methane levels are elevated. I'm not sure what that means as far as SIBO. I am hoping to see if this antibiotic provokes Norman to stop by again. Apparently this is not bacterial, from what I've read. I'm learning about archaea- that seems to fit my description. My biggest concern is even if the week long course of antibiotic works.... then what? I go off... It comes back.
I will have to look at my diet again and see if there is anything more I can eliminate. More learning on non-MC foods that may not be good for me. There is also a natural protocol to starve out the archaea but I haven't found dosing guidelines and don't want to run blindly into supplements.
Deb
"Do not follow where the path may lead. Go instead, where there is no path, and leave a trail.
-Ralph Waldo Emerson
2007 CC
2013 thyroid cancer- total thyroidectomy
2013 Hashimoto's - numbers always "normal"
2017 Lyme's Disease
Hi again!
I had never heard of archaea so I've been reading about it...that it produces methane gas and....survives at 130-140 degrees! Autoclave sterilization would not destroy it!
So I'm guessing ur doc is giving U this antibiotic for archaea? This is really interesting...hope it will help!
I thought of you at 3:30 am yesterday (when I was busy reacting to blueberries ) and thought of you and wondered if you were up too ....hope not!
Sunny
"It is very difficult to get a man to understand something, when his salary depends upon his not understanding it. "
Upton Sinclair
Deb,
Chris Kesser had a new blog post today about unanswered questions about SIBO ....that treatment efficacy is often quite low & recurrence rates are high.......he challenges a few " truths"...,,,,"when 90% test positive with breath tests that should raise eyebrows". and SIBO is not always the cause of our symptoms....
It was quite an eye opener for me...I got so many different opinions from various doctors on SIBO , I didn't know what to believe!!
"It is very difficult to get a man to understand something, when his salary depends upon his not understanding it. "
Upton Sinclair
I've maintained all along that our gut biome and whether or not any of the bacteria in our gut produce hydrogen, or methane, or laughing gas, or whatever, is determined by our diet and the efficiency of our digestion (unless we interrupt the process with an antibiotic). SIBO is similar to IBS, it exists only in the minds of medical professionals who see it as an opportunity to make a lot of money by taking advantage of people's fears. Virtually everyone has SIBO when their MC is active, and it resolves when their MC is controlled.
At least that's how I see it. I'm glad to see that Chris Kressor seems to agree with me.
Tex
It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.
Sunny, sorry to hear blueberries are problematic. They are soooo good. I'm learning more than I ever wanted to know about gut biome. I agree, it seems there is no good news out there, it can be contradictory, and hard to know what to believe.
I just got done reading the same transcripts from his podcasts too.
I stopped taking the metronidazole after five pills. I called my GI today and the nurse said to discontinue if it's making me feel worse since we aren't treating an infection. Hmmm. I feel the start of a yeast infection again and am hoping with all my might that it won't develop. The antibiotic was rough on my stomach and the pain and nausea is still there. It did nothing for my WD and added to bloating and gas. I am very uncomfortable and feel worse than before. Maybe if I would have taken the full 21 pills I would have noticed improvement but I just couldn't do it.
It is interesting how my three week course of doxycycline for Lyme's produced Normans after pill #2. I thought maybe it was all on my head but now I know I wasn't wrong. While on the antibiotic my carpel tunnel improved, some of my muscles aches improved, and my issues with inflammed gums all disappeared.
Now I have burps like you wouldn't believe. I never had that before.
It seems that the only way to feel better is to not eat! And I'm not very good at that.
I now know it's possible for me to poop normal because I did not change a thing when I started the doxycycline. I continued to eat my safe foods and I felt the best I have ever felt in ten years (aside from the hemorrhoid issue and yeast infection).
So are botanicals the next best step to give a try? Tex, I dread hearing what my GI will want to do next.
Deb
"Do not follow where the path may lead. Go instead, where there is no path, and leave a trail.
-Ralph Waldo Emerson
2007 CC
2013 thyroid cancer- total thyroidectomy
2013 Hashimoto's - numbers always "normal"
2017 Lyme's Disease
They may suggest a drug that will deactivate your immune system, but they don't always work for MC. I would consider suggesting a long-term doxycline treatment, but I don't think that's a practical option.
It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.
I will agree with the no easy answers. It seems easiest to settle with the idea that I'm screwed. Terribly frustrating but there's not much I can do but keep trying. I ordered the botanical Atrantil to see if it could possibly help. The worst that can happen is that it doesn't and I've wasted more money. I've literally spent thousands over the past ten years on alternative therapies so I'm not overly excited to throw more money out the window but I have no clue what to do next. I'm sure I will be even less thrilled when my GI gets back in the office next week and is faced with the question of What Next?
I am due for my every- three- year colonoscopy (due to pre cancerous polpys every time I've had a colonoscopy). My GI wants to do an endoscopy too. So I may end up waiting until that procedure which most likely won't happen until October unless they deem me worthy of fitting in somewhere in their schedule. I'm hoping to find the botanicals effective. I'm undecided on the FODMAP diet and if I should start following that. It will eliminate many of the foods I eat but makes sense to try. But then I've read that it is not necessarily a good thing to follow long term.
I do not want to take an immune suppressant. Will my GI know that it may not work due to the MC (ans why is that?)
So far, all the drugs they push my way have made my condition worse. Lialda was an immediate nightmare and now the Metronidazole..... Entocort has never been effective but has stayed off noctural issues. Cholystyramine was useless.......Asacol, pepto- nope and nope. Prednisone- pure evil. A very long list of supplements from a handful of different naturopaths...... holy cow, NO.
The journey never ends. It's a good thing I'm stubborn.
As always, I appreciate your comments because they are why I have made progress.
It's mildly humorous that getting dx with Lymes and a little tick has shed new light on my autoimmune issues.
Deb
"Do not follow where the path may lead. Go instead, where there is no path, and leave a trail.
-Ralph Waldo Emerson
2007 CC
2013 thyroid cancer- total thyroidectomy
2013 Hashimoto's - numbers always "normal"
2017 Lyme's Disease
Some people have had at least partial success with Imuran, but all the MC Patients I'm aware of who have tried the anti-TNF drug Remicade, for example, have not been able to stop the diarrhea, though it does work for other symptoms, such as arthritis. I have no idea why it didn't work for them.
Tex
It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.
I think of you often Deb! That is strange about the antibiotic you took. Usually taking the antibiotic causes worse symptoms than the original problem.
I was treated for a positive SIBO in 2014, but not until my elimination diet did my symptoms go away. I'm right there with Tex and Gabes on SIBO.....but at that time I was up for anything.
You take care Deb and I so hope you can get some relief!
Martha E.
Philippians 4:13
Jul 2008 took Clindamycin for a Sinus infection that forever changed my life
Dec 2014 MC Dx
Jul 15, 2015 Elimination Diet
Aug 17, 2015 Enterolab Test
Dec 2015 Reflux
Sept 2016 IC
Been there done that. Been GF since 2011- not likely.
