posted
I've been on Doxy and Rifampin for a year and a half for lyme and ehrlichia.
Over the past 2 weeks, my GI issues are going nuts.
It started off feeling like a stomach bug, but from there I went into what just felt like constant gas pain. Lots of belching, some flatulence, but the pain never went away.
I'd get hungry, but whenever I eat, no matter what I eat, I feel nauseated and have the pain again. So I went on liquids for a day or so. Also went off the abx for almost a week.
Started feeling almost normal again over the weekend, so I started slowly eating again, and started back on the abx.
Had a lot of weirdness issues yesterday--light-headed, spaciness, heart palps, vision, so not sure if that was something of a herx or what.
Last night the stomach issues came back again, and I'm kind of in the same boat again.
Wondering if my body is just sick of abx or if something else is going on. I don't see my LLMD till next month, but I do want to ask him about the possibility of going off the abx for a while and trying something else.
Any advice? THoughts?
Posts: 303 | From Pennsylvania | Registered: Jul 2010
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17hens
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posted
Yeast?
-------------------- "My flesh and my heart may fail, but God is the strength of my heart and my portion forever." Psalms 73:26
bit 4/09, diagnosed 1/10 Posts: 3043 | From PA | Registered: Dec 2009
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posted
Maybe worth getting a stool test for yeast and cdiff. Are you on a good probiotic?
Posts: 341 | From NY/FL | Registered: Apr 2010
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TX Lyme Mom
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Don't overlook the possibility of celiac triggered by Lyme -- since 40% of the population carries the gene for celiac, although only 1% of the population ever actually develops celiac (the auto-immune form of gluten intolerance).
Celiac experts postulate a variety of "triggering factors" -- including a variety of infections (bacterial or viral) -- to explain why celiac occurs in only 1 out of the 40% of individuals who carry the gene for celiac.
A number of LLMDs are now starting to screen their Lyme patients for celiac &/or gluten intolerance, especially among those patients who do not improve or who relapse after antibiotic therapy.
Surprisingly, not all of the symptoms of celiac are necessarily gastrointestinal symptoms either because gluten can trigger cerebral &/or other neurological symptoms, in addition to GI symptoms -- such as brain fog, depression and fatigue, believe it or not!
There is a very logical explanation for how Lyme can trigger or activate latent celiac in someone who is genetically predisposed to it. Borrelia's cell wall is composed of lipoproteins which are low molecular weight neurotoxins similar to Clostridia toxin, according to research by Donta and Cartright, who hold a patent on Borrelia's neurotoxin.
An illustration in an article on celiac in Sci. Amer. shows how such a neurotoxin can interfere with "tight junctions" in the GI tract, allowing incompletely digested macromolecules of proteins (such as gluten) to enter the general circulation and trigger an autoimmune reaction. Here's a link to the Sci. Amer. article with its excellent colorful illustrations, authored by a celiac expert. (Scroll down to find the illustrations near the end of the article.)
According to articles by Ritchie Shoemaker, MD who has written a lot about neurotoxins, these neurotoxins are extremely difficult for the body to eliminate because they are reabsorbed from the colon, along with other fatty acids, because that's what the colon is designed to do -- ie, to absorb fats and other nutrients before elimination. Thus, these LMW neurotoxins tend to be recirculated repeatedly via the enterhepatic loop. Therefore, it is easy to understand why so many Lyme patients find that they have developed celiac or gluten intolerance as a result of chronic Lyme.
Many neuro-Lyme symptoms disappear, along with the GI symptoms, when one learns about all of the hidden sources of gluten and learns to avoid them. Even weird symptoms like heart arythmias (such as atrial fibrillation) have been known to disappear after a few weeks on a GF diet!...Not to mention getting rid of really bad GERD and gall bladder pains, too.
If you have a true gluten intolerance, then it's not enough simply to avoid only the obvious sources of gluten because even a minor exposure to gluten can be enough to trigger symptoms for several days. Thus, it can be very confusing and frustrating to try to avoid wheat because there are so many other hidden sources of gluten in our diet, especially in processed foods.
The best lab for diagnosing gluten intolerance is:
...and the good news is that you don't even need a doctor's signed lab order to be tested there because you can collect the necessary stool sample in the privacy of your own home. The complete $369 panel is their best value because it also contains a test kit for the cheek swab genetic test for celiac.
The value of being tested is that it saves the confusion and frustration of trying to determine if gluten is a problem via food elimination self-testing, which can be very problematic in someone who has a lot of other non-GI-related symptoms, especially cerebral symptoms resulting from gluten.
However, if you want to try a gluten free diet first, then be aware that after you have succeeded in eliminating gluten from your diet for several weeks that you will react much more strongly to it when you do reintroduce gluten into your diet again. This can be a rough way to find out if gluten is a problem for you. That's why the lab testing is such a huge advantage.
Besides that, but the gluten free diet is a major commitment, and without the results of a lab test to look at as a reminder, will you have the commitment to stick to it strictly enough in order to succeed with it? Some folks can do it that way, but not everyone can do so successfully because of how easy it is to slip up unless you really know what you are doing.
Posts: 4563 | From TX | Registered: Sep 2002
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TF
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Sounds like yeast in the intestines to me. When I had it and didn't know what it was, I had constant abdominal pain from gas.
Others report getting light-headed when they eat, or "woosy."
Does your tongue have a white coating or white or yellowish spots? If so, that proves the yeast diagnosis.
You could call your lyme doc's office and ask to try a diflucan prescription to see if the problems go away. Diflucan kills yeast. If it stops or improves your problem, you have your answer.
I think it is time to switch antibiotics also. Being on doxy for 1 1/2 years is not typical at all. Sounds like you've never been treated for babesiosis and bartonella. But, most people with lyme have these infections also.
I hope you are with a top notch lyme doctor. That's what it takes to get rid of this disease.
Posts: 9931 | From Maryland | Registered: Dec 2007
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1) Yeast could be likely, ike others say. I've found oregano oil supplements to be very helpful with this. Also Saccharomyces boulardii is a probiotic that eats yeast.
2) I've had C. diff and if you get it, you'll be in the bathroom constantly.
3) A friend of mine who did IV abx for a year and a half developed pancreatitis, which is an inflammation of the pancreas. It caused her to get nauseous and throw up a lot. You might want to ask a doctor about this possibility, and the possibility of gallstones developing.
Good luck! Blackbird
Posts: 30 | From Massachusetts | Registered: Dec 2009
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posted
Gall bladder is out, so I know that's not an issue.
I went through the testing for celiac disease and I was cleared for that.
I've never had the white coating on my tongue, and I do check for that frequently.
I am on a probiotic. I've been increasing the dose on it when I go through these little issues.
I thought a year and a half on the same med was kind of odd myself. There was once when he did switch me to Amoxyl, but I had serious issues with it.
He's retesting for babs, but I don't know what we'll do if that's an issue, because I'm allergic to Zith.
Posts: 303 | From Pennsylvania | Registered: Jul 2010
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TF
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Member # 14183
posted
I was allergic to zith also, just like you, and I had babs, so my doc treated me with Bactrim DS (double strength) and pulsed artimisenin. It worked for me.
Many doctors don't know that Bactrim will get rid of babs. My doc says it takes twice as long as the combo zith/mepron to do so, but for some of us, it is the only option. I was on the Bactrim and art for nearly a year.
It has now been 5 1/2 years since I completed my lyme (and babesiosis and bartonella) treatment and I am still symptom-free, enjoying my life.
You really need to give the diflucan a try so you can rule out the most simple cause which is yeast. Use the scientific method. If the diflucan doesn't change things, then you can safely cross off yeast as a possibility. I hope the diflucan works, for your sake.
Also, taking probiotics doesn't always work to keep yeast away. The longer you are on antibiotics, the more common yeast infections of the intestines become. It becomes a constant battle to keep yeast away.
Bartonella can cause GI issues. Read it in Burrascano, from page 26:
"BARTONELLA & �BARTONELLA-LIKE ORGANISMS�- .. � GI involvement may present as gastritis or abdominal pain (mesenteric adenitis).
I know one girl whose bart acted up every time she ate. She became afraid to eat, the episodes were so bad. So, bart is definitely a possibility.
I had no symptoms of bartonella, but yet I had it. I tested positive for it and babesiosis through Igenex, a tick-borne disease specialty lab in California.
Looking back now, I realize that I had some (very few) episodes of abdominal pain. So, that may have been bart in my case. I also had 2 episodes of burning on the soles of my feet during the day. Sore soles is a bart symptom.
I hope your lyme doc (if he truely is a lyme doc) has tested you through Igenex for both babesiosis and bartonella. He hasn't treated you for either of these coinfections, which is odd since Burrascano says that virtually every lyme patient has coinfections. I have also found that to be true in meeting hundreds of lyme patients.
The babs and bart treatment should be added after treating lyme for a few months. Doesn't seem to have happened in your case.
Also, Burrascano says the standard treatment for ehrlichia is 30 days of doxy. So, you most likely eradicated the ehrlichia a long time ago. Do you still have evidence of it since your doc is still treating it?
I strongly urge you to read and STUDY the Burrascano lyme treatment guidelines (link above) so that you have a better understanding of this complex illness and so you see what good lyme treatment looks like and can compare it to your own treatment so far.
The doc is the key to getting rid of this disease. I can't emphasize that enough. Lots of doctors treat lyme disease, but only a few know enough to get rid of it for you.
Posts: 9931 | From Maryland | Registered: Dec 2007
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TX Lyme Mom
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quote:Originally posted by Starfall: I went through the testing for celiac disease and I was cleared for that.
Starfall, a negative blood test for celiac does not rule it out -- especially in a Lyme patient who might have IgG sub-class deficiency since the blood tests are based on IgG and IgA.
Another potential cause for a "false negative" result on a celiac blood test would be in the case of a person how has IgA deficiency, which is pretty rare, but considering that 4% of celiacs do have IgA deficiency and that these persons would all be missed by blood testing, you can easily see why blood tests for celiac cannot be relied upon completely.
The stool and cheek swab genetic testing is the only way to be sure about it. If you do not have one of the genes for celiac, then you don't have to worry about the auto-immune form of gluten intolerance -- although you can still have ordinary gluten intolerance.
There are horror stories about persons who were tested for celiac two or more decades ago and who have suffered unnecessarily for such a long time simply because no one thought to test for the total IgA level in order to interpret the celiac lab results accurately. Bummer.
Either way, the stool test will give you a much better answer than blood testing can do. It can also identify other common food intolerances, such as eggs, soy, milk, etc.
Posts: 4563 | From TX | Registered: Sep 2002
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TF
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posted
Well, one lyme doc says that rifampin and doxy will treat bartonella. Website that says this is here:
So, it looks like you HAVE been getting bartonella treatment with this combo.
So, if this is correct, all you need now is babesiosis treatment and something to kill the cyst form of lyme. Sounds like you were never given flagyl.
Posts: 9931 | From Maryland | Registered: Dec 2007
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posted
I did have the stool test for celiac and parasites, as well as whatever else he doc was looking for at the time.
Posts: 303 | From Pennsylvania | Registered: Jul 2010
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I couldn't tell you, Lymetoo. I just know it was one of the tests my gastro put me through when he did stool samples.
Posts: 303 | From Pennsylvania | Registered: Jul 2010
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TX Lyme Mom
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Starfall, Our favorite two probiotics are Culturelle and Align. Both are available at Sam's Club now at reasonable prices.
Culturelle covers the upper GI tract, and Align takes care of the colon. However, the upper GI tract is the most important, believe it or not, because what goes on there affects the colon, too. Therefore, if you can only afford one, then start with Culturelle.
You can take a double dose of Culturelle at first for a few weeks or so, but you don't need more than that much of it because it is super high potency. You can cut back to just one a day after you get past the worst GI symptoms.
Digestive enzymes might help with GI issues and with food intolerances also. Creon is an Rx digestive enzyme, and there are lots and lots of OTC digestive enzymes on the market. Here's a link to our favorite website about digestive enzymes:
The main interest of the author of this website (Karen de Felice) is with autistic children, who tend to have lots of GI issues, but she also has a book out about enzymes for adults also. You can find both of her books at her website or at Amazon, where you can read reviews of her books by readers who have bought her books.
Posts: 4563 | From TX | Registered: Sep 2002
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