Topic: Verry worried-Collitis/colonoscopy and how Lyme fits into this
merrygirl
Frequent Contributor (1K+ posts)
Member # 12041
posted
Well I went to see a GI doctor today (not so LLMD). He was pleasant enough of a guy. He reviewed my Labs/fecals CT etc. He reccommended a Colonoscopy, which I agree is a good idea.
I should give a little more background. It may be TMI and I am sorry. I have had chronic severe diarrhea for over a year and a half. I believe that the diarrhea was before Lyme (at least as far as I know) I never really thought too much about it. I am not sure why, maybe I got used to it. Well I have had enough!
My fecal tests have shown everytime (over 20 tests) that I have WBC in my stool as well as lactoferrin (sp?). Parasite neg/salmonella neg etc etc
The GI doc pretty much said that the fact that those tests are so positive that he could almost gaurantee something is wrong in my colon.
From what I understand about some of the conditions that he suspects or is looking for, the treatment includes or that is suggested steroids and immunosupressants, which I know is contraindicated for Lyme.
I know this is premature as I have no idea what they may/maynot find.
What am I supposed to do if my colon is really screwed up and the steroids or something like this will help the GI problems, but hurt my Lyme?
As a side note when the docotor brought up the Lyme stuff, I was like here we go again!
He looked at my 2nd western blot. He started to explain IgM in a very basic drawn out way for a real lay person and I said you mean IgM. He was shocked and said how did you know that?
I said because I know alot about Lyme. He said well your IgM is negative. I said well the band 23 is specific for Lyme, but if you look at the WB from 2 weeks earlier I was CDC positive, which by the way is for surveillance purposes and not for a diagnosis.
He was surprised that I knew what I was talking about and he agreed and said nothing else about Lyme unless I asked how things in relation to Lyme would come into play. He had no problems with my Lyme treatment.
He said that some GI issues can make you have arthritis and FUO and a lot of other stuff that I have going on.
My dilemma that I am sure some of you must have had to deal with is what if steroids/immunosuppressants would help a severe colon problem, but make my Lyme worse?
I don't really know what to make of it. I know I have no idea what they may find if anything, but I want to start the thought process and have some sort of game plan if the situation arises.
Maybe it is a GI issue now, but what if another issue comes up and I need some of the Lyme contraindicated treatments?
It must come up with my fellow Lymies so I need help, advice experiences as my anxiety level is very high! I wish I could trust what doctors have to say.
Thanks folks- Melissa
Posts: 3905 | From USA | Registered: May 2007
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JimBoB
Unregistered
posted
What ever you do, do NOT take any Cipro. IT can and will destroy your colon. It did mine and many others.
posted
Well....don't worry ahead of time. [easy for me to say!]
Have you tried completely eliminating gluten from your diet for several weeks or months??
Not all tests for gluten are accurate....sound familiar??
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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merrygirl
Frequent Contributor (1K+ posts)
Member # 12041
posted
It is hard not to worry. LOL.
I really don't understand the gluten thing..
Can some one send me some links about it.
I am the type of person who would need an example menu to follow.
I dont think gluten has been brought up to me at all by 3 of my doctors,
Can being gluten intoerance cause so much inflammation? Like having White blood cells in stool?
Posts: 3905 | From USA | Registered: May 2007
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You have to eliminate anything with wheat, barley, oats and rye.
The hardest part is processed foods. Very few processed items are OK....or at least not guaranteed OK even if the label doesn't SAY "wheat."
Go to the site above and find the discussion board. They are a GREAT resource....kinda like Lymenet!!
For now, eat proteins [not processed] and vegetables.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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Dawn in VA
Frequent Contributor (1K+ posts)
Member # 9693
posted
Have your stool samples been checked for C. dfficile? It has both sn active and a spore cycle. One of the classic symptoms is unruly diarrhea. My grandmother had it and had constant diarrhea until she was treated (a while...). I've heard it's usually contracted via hospitals (transmissible) or develops after taking too many/a long course of antibiotics.
Interesting sidenote: Flagyl is actually one of the drugs used for treatment (there is another they combo it with but I can't remember what it is).
-------------------- (The ole disclaimer: I'm not a doctor.) Posts: 1349 | From VA | Registered: Jul 2006
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sixgoofykids
Honored Contributor (10K+ posts)
Member # 11141
posted
Have you been checked for bart? In my recent reading on bart symptoms I saw that GI problems can be present with bartonella. That is the case with me.
I have a Klebsiella and Citrobacter overgrowth and none of some of the beneficial bacteria despite massive probiotics.
Actually, Cipro is effective against K. and C. so I was put on it this summer for 20 days. It was the first time in years that my bm's were normal! Once I came off the Cipro, I steadily declined in all ways for two months.
My LLMD diagnosed me with Bart based on that and my ongoing cognitive issues. Cipro hits bart, which is why I felt so much better on it ... plus it went after the GI bugs.
I started more probiotics, oregano oil, uva ursi, and plant tannins for the GI trouble because they didn't want to keep me on something like Cipro long-term. It had all been working until I started Bart treatment ... now the constant diarrhea is back ... I'm thinking it's a herx.
I'm negative for parasites, C. Diff, etc.
It's not a bad idea to have a colonoscopy to check and be sure all is okay up there, but I definately wouldn't start on meds that will hurt the Lyme. I chose not to let the GI doc keep looking after he found nothing during my colonoscopy/endoscopy ... they will look for stuff as long as you keep paying them.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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map1131
Frequent Contributor (5K+ posts)
Member # 2022
posted
merry, I have a niece which I have no doubt in my heart and mind has lyme disease (4yrs). Known tick embedded and removed 4 weeks prior to strange illness. Several months ago after a colonoscopy was dx with colitis.
Many strange illnesses have happened and gone in this 4 yr period while she was away from college. But after having bowel problems and finally telling my sister that she was only having bowel movements once a month, her Mom took her to GI specialist.
Why my sister won't accept lyme I can't understand. Maybe it's because early on my niece took lots of abx and finally college drs wouldn't give her anymore. The fact that she felt better taking abx, still didn't sit right with me. I've never forced the issue with my sister. After all the doctors have told her early abx will take care of lyme, so it's not lyme.
But merry back to your colon. Tutu is right about the gluten idea. Do some serious study on it. My niece has discovered a gluten/? (sugar-free, stuff that turns to sugar) something diet that has really helped her the last few months. When she asked the GI specialist about this diet, he said he never heard of it????
I know myself after the last several months of dealing with colon issues, that I really need to go to this gluten free stuff. I don't know why I'm being so neglectful about it.
Maybe you and I could jump some big hurdles by going there?
So, so much for GI specialist? You should use this doc to rule out anything besides/because of lyme serious with your colon. Maybe you will turn on light for lyme awareness for him.
Pam
-------------------- "Never, never, never, never, never give up" Winston Churchill Posts: 6495 | From Louisville, Ky | Registered: Jan 2002
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It's absolutely amazing that GI specialists who are supposed to be knowledgeable about the GI tract are so ignorant about it. Sound familiar??
Please check out the information at www.celiac.com. Also, there's a book called: Going Against the Grain and it will explain alot about the many problems caused by gluten including inflammation, GI distress, etc..
Healing your gut is probably one of the things you have to do to get yourself really well.
Posts: 984 | From San Diego | Registered: Nov 2006
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My daughter had those symptoms for years and they went away when we treated her for Bartonella. In fact it was amazing that after years of suffering, (and thousands spent on Gastros) levaquin given by an LLMD cured those symptoms within weeks.
Unfortunately she wound up having an operation to remove adhesions and those adhesions were probably caused by the bart infection breaking through her intestinal wall.
So I think it is important to consider treating for Bartonella if you have those kind of symptoms.
Posts: 27 | From San Francisco, Ca | Registered: Apr 2007
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merrygirl
Frequent Contributor (1K+ posts)
Member # 12041
posted
Thanks for your experiences. I am hoping for biopsies to be done for TBD in addition to whatever else they may do. So we will see.
Posts: 3905 | From USA | Registered: May 2007
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luvs2ride
Frequent Contributor (1K+ posts)
Member # 8090
posted
Merrygirl,
GI issues are very much causing my joint pain. I have known this from the first day I was diagnosed with Rheum. Arthritis. I researched that night and quickly found a Leaky Gut Syndrome cause to RA. A vegan diet made a HUGE difference in my pain level. I haven't remained vegan but the vegan diet eliminated most inflammatory foods from my diet and really helped.
I also learned of infectious causes to RA. I went back to my rheumy with all this information plus my history of bacterial infections including lyme and H. Pylori. I had a recent positive lyme test too. I asked for additional testing to see if I had mycoplasmas, strep, etc. He refused and even lied telling me there was no test for mycoplasmas and if I had strep I would be sick.
All the same, I refused his immune suppressing drugs. I began low dose mino (see www.roadback.org) which is supposed to attack mycoplasmas. I began working with an alternative doctor to identify and heal gut issues. I made tremendous progress with him.
April of this year, I felt the H. Pylori symptoms coming back and a doctor prescribed the standard 2 weeks prevpac. Boy, did I flare in my joints during that 2 weeks. Still, I had my annual RA testing done during that 2 weeks and I had dropped from a high moderate to a weak positive. Rheumy declared me nearly dormant. He looked sick as he said "I don't understand a thing you are doing but either it is working or mother nature has decided to spontaneously heal you because you are nearly dormant." Oh that was a great day!
Then in May, bit again and within 48 hrs very sick with flu like symptoms, high fever and raging joints. All joints. Awful.
This time I headed to an LLMD who is also a rheumatologist. She ran a gazillion tests and I have Babesia, QFever, EBV, and H.PYLORI and TAPEWORMS.
I was really shocked about the H. Pylori because I had just had treatment. She said 2 weeks is not enough. She started me on Biaxin and Ammoxycillan in July and I am still on it. My joint pain is gone most days and barely noticeable other days.
Seems this connection was suspected and research confirmed it. I'm so angry at the first rheumy. If he would have just tested me, he would have treated this much earlier.
Now, concerning immune suppressing drugs. My new LLMD rheumy is actually putting me on Enbril once the insurance company approves it. She says I will need this temporarily while we attack the bugs. This is to keep my immune response down so I do not incur joint damage.
So, if you have to go on immune suppressing drugs just be sure your LLMD takes advantage of this time to really hit the bugs.
I am shocked your GI knows nothing about Celiac disease. You need to rule that in or out right away. You can self test by just cutting out all gluten. When you get the colonoscopy, they can biopsy some of the colon tissue for celiac disease.
The best way to avoid all gluten is eat nothing prepared or pre-packaged by others. Gluten is not in lean meats, fresh veggies and fruits. It is in practically everything else.
Any combination foods need to be prepared by you. Use corn starch for thickener instead of flour.
Good news is that healing your gut is most definitely going to make you feel better.
Luvs
-------------------- When the Power of Love overcomes the Love of Power, there will be Peace. Posts: 3038 | From america | Registered: Oct 2005
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