posted
Went to see my LLMD for a follow up for my abdominal issues.
In the past few weeks, after labs and CT scan, I was told by an ER and a clinic doc that my entire colon was inflamed.
I had taken doxy in late April and ended up in the ER with dehydration after severe diarrhea and abdominal pain.
Anyway, I am STILL distended enough to look pregnant, and still have abdominal muscle pain and skin tenderness, to the point where the waist of my pants hurts.
Still have soft stools, belching, gas. My arms, legs, and butt have lost weight, but the belly is out to there!
Am on gluten-free diet, and gabapentin for the pain.
So my LLMD now feels that I may have some paralysis of part of my intestine!
He didn't have anything specific treatment-wise to offer me, other than what I'm already doing. He said it may take weeks or months to get better!
He did not want to give me more abx right now.
I am already TIRED of this whole thing! I'm getting really hopeless about it: am I going to continue to walk around looking like I'm expecting and holding a heating pad to my abdomen?!
What the heck is this, and what can I do about it?
-------------------- "The only thing we have to fear is fear itself..." Posts: 17 | From New Jersey | Registered: Apr 2013
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TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
I would go to a great gastrointerologist if I were told what the ER and clinic doctor told you.
Lyme docs specialize in lyme. You need someone who specializes in the colon. See what treatment a specialist recommends.
If the gastro is stumped, then it truly could be lyme causing paralysis of part of the intestine. If that is what is going on, it will definitely cause gas, bloating, and abdominal pain.
But, hopefully a gastro would have some treatment for intestinal paralysis also.
I was bloated and held a heating pad to my abdomen for 3 months when I went to a lousy lyme doctor and got candida (yeast) in my intestines from his treatment (and not told to use probiotics or eat a certain diet, etc.)
By reading the Burrascano Guidelines, I figured out what was wrong and asked the lyme doc for Diflucan. That solved the problem. Plus, I started to take probiotics on my own.
With this illness, it really pays to be an educated patient.
My lyme doc was treating me for irritable bowel! None of his meds helped me at all. All I needed was the yeast killed.
So, if you have not already done so, I strongly suggest you read and STUDY the Burrascano Guidelines to get an education in the disease that you have. It will help you so much.
Just keep reading it and reading it. Look up the medical terms so that you understand what is being said.
You will also learn what good lyme treatment looks like. That will let you know if you are getting good treatment.
With this disease, you can't just get yourself to a doctor and sit back and wait for the magic to happen. You have to get very educated and involved and do all that Burrascano requires the patient to do.
Then, you have the best chance of getting past this problem and moving on with your treatment.
glm1111
Frequent Contributor (5K+ posts)
Member # 16556
posted
Really sounds like a parasitic infection to me. Parasites/worms are now considered the number one co-infeftion of Lyme disease.
Often overlooked, misdiagnosed and left untreated. After 4 yrs of abx, the only thing that helped me was antiparasitic herbs and salt/c. Many here are having good results with pharma
antiparasitics such as Ivermectin. Google parasite symptoms.
Tammy N a lymenet member has had great success treating parasites with a Dr. K. ART practioner. She is from your area and the practioner is outside of Philly. I would PM Tammy for the names.
Gael
-------------------- PARASITES/WORMS ARE NOW RECOGNIZED AS THE NUMBER 1 CO-INFECTION IN LYME DISEASE BY ILADS* Posts: 6418 | From philadelphia pa | Registered: Jul 2008
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And when I was on IV Doxy, after about 2 months, I don't know if it was the Doxy or the herx, but something shut down my colon (no BM's for a MONTH!!!) and I had to go get a series of colonics and stop the Doxy to get my colon to work again.
-------------------- -Razzle Lyme IgM IGeneX Pos. 18+++, 23-25+, 30++, 31+, 34++, 39 IND, 83-93 IND; IgG IGeneX Neg. 30+, 39 IND; Mayo/CDC Pos. IgM 23+, 39+; IgG Mayo/CDC Neg. band 41+; Bart. (clinical dx; Fry Labs neg. for all coinfections), sx >30 yrs. Posts: 4166 | From WA | Registered: Feb 2011
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posted
I have gastroparesis as well as intestinal motility disorders. Find a really good gastroenterologist to figure out what if any motility issues you may be having. It can be difficult to manage at best.
Posts: 10 | From Massachusetts | Registered: May 2013
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He's the GI that actually biopsied samples of children's colons and found Lyme.
My kid suffered with "Crohn's" for 5-6 years before I figured this out and after reading his paper.
We traveled from MD to NJ just to meet him and he agreed that Lyme and parasites were her problem. He spent many hours with us going over her ENTIRE file that I had. And we are talking a 3" ring binder full!!!!
Her scope done here in MD showed entire colon friable also.
Flagyl and clindamycin helped bring me back my child! she also pulsed zithro and her gut handled these with any GI upset.
Doxy is nasty on the gut. We all had issues with it.
Also always take S. Boulardii and lots (tons!) of probiotics. If you can afford it, use Custom Probiotic Six Strain Probiotic Powder until you are feeling better (probably just one Jar) and then use Perque Digesta Guard Forte 10 thereafter. These two items have helped us tremendously with the gut.
Until this past year she followed the SCDiet which really helped to keep her off the crohn's meds. Hard but it was worth it:
since you are already doing grain-free, it probably would not be hard for you to try.
I wish you a fast recovery,
-LAXlover
-------------------- LAXlover Posts: 371 | From Northern Baltimore Area | Registered: Apr 2010
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Catgirl
Frequent Contributor (5K+ posts)
Member # 31149
posted
That doesn't sound fun. Doxy is so hard on the gut. I wonder why I take it sometimes. It distends my stomach at night (look pregnant) and gives me lots of gas (yeast). I have to take more probiotics on it.
Don't get discouraged. Everyone above gave great advice. UP your probiotics (seriously). The worse thing I did was not take enough of them. IMO, docs don't have a clue about how much to prescribe. I have been up to 400+ billion cultures per day before.
Hang in there! :)
-------------------- --Keep an open mind about everything. Also, remember to visit ACTIVISM (we can change things together). Posts: 5418 | From earth | Registered: Mar 2011
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Razzle
Frequent Contributor (1K+ posts)
Member # 30398
posted
These published articles support the concept that Lyme itself can cause abdominal distention & pain:
Mormont E, Esselinckx W, De Ronde T, et al. Abdominal wall weakness and lumboabdominal pain revealing neuroborreliosis: a report of three cases) Clin Rheumatol, 2001; 20(6):447-450.
Krishnamurthy KB, Liu GT, Logigian EL. Acute Lyme neuropathy presenting with polyradicular pain, abdominal protrusion, and cranial neuropathy. Muscle Nerve, 1993; 16(11):1261-1264.
posted
OK -- I have alot of homework to do, and I agree that I have to be my own advocate!
My LLMD is a great guy, really did well with me the first time around, but at this point it seems he is not going to be much help
He treats Lyme, not GI problems so much (even if they may be related).
I have to check out all of these articles and re-read the Burrascano protocol (which I also did well with, first time around).
AND I am now looking for a really good gastroenterologist!!!
Thing is, I HATE doctors (not personally, just having to go to them).
Having been through a barrage of them with 13 years of undiagnosed Lyme, I am so paranoid that they may start with the "just relax, sweetheart! It's all in your head!" stuff that I got all those years.
Diet seems to be helping, which is a very positive thing!
-------------------- "The only thing we have to fear is fear itself..." Posts: 17 | From New Jersey | Registered: Apr 2013
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So what kind of "diet" are you now eating?
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