An 18 year old female with an 11 year history of complex multisystem Lyme disease recently had an upper endoscopy for the evaluation of persistent unexplained gastrointestinal symptoms.
Biopsy samples taken from the stomach and duodenum were sent to Clongen labs for PCR analysis. The samples were tested for Mycoplasma fermentans, Borrelia burdorferi, Babesia microti and Bartonella henselae. These specific tests were chosen by Dr. Ray Jones. This patient is new to me and has recently requested that I contribute to her case.
THE STOMACH TISSUE PCR TESTED POSITIVE FOR BORRELIA BURDORFERI!
Looking for Lyme by PCR has been difficult because it has not been clear which tissue should be biopsied. Here is a case demonstrating the persistence of the Lyme bacteria in gastric mucosal tissues after 5 years of continuous antibiotic therapy.
This begs the question: Should gastric Lyme be treated differently. Perhaps the acid environment enhances survival of the organism. Drawing from the H. pylori experience, it may be helpful to treat with high dose proton pump inhibitor therapy in addition to combination antibiotics.
Here we are sailing on uncharted waters.
11 comments:
Very curious- what did the many years of antibiotics include?
Of note- Brorson noted bismuth activity in his in-vitro series (the same one that gave us metronidazole for cysts, ect) and suggested its possible usefulness in GI Lyme.
Why would the stomach be a sheltered environment for Lyme? For H pylori - yes. For Borrelia?
Reguardless- the standard triple therapy makes sense if you think about its components.
Did the patient have positve ELISA and WB for Bb? Was a PCR test done for h Pylori? What antibiotics were used?
It makes sense as stomach muccosal tissue is a source of macrophages and Bb has been found to survive in macrophages.
Positive Lyme WB: Nearly all bands present.
I presume the GI doc tested for H. pylori- I have assumed that the standard biopsies are accurate. Perhaps this is not so.
I have never seen a PCR for H. pylori ordered.
We skip ELISA for the most part due to poor sensitivity- I believe do to a high cut off point. If you look at the description of initial Lyme ELISA results described by Barbour you can see why its interpretation was confusing. A committee chose the positive set point based on the prevailing belief that Lyme was rare and that cross reactivity was common in the general population.
Docs who treat a lot of Lyme patients go straight to the WB.
The fact that numerous WB positive patients (the specific test) are negative on the ELISA (the sensitive test) proves that the two tier approach has no validity.
My daughter's stomach biopsy tested positive for Bartonella. Dr. Martin Fried in NJ has done a lot of research on this, perhaps he has a specific protocol for GI Lyme?
Doc...
You may want to do some research on Whipple's Disease. Possibly that might offer some insight into persistent long term GI tract infection and treatments.
The powers that be say its OK to treat Whipple's with years of antibiotics. If you didn't treat it with years of antibiotics, they know the patient would eventually get a neurological infection and die. In fact, there have been cases where people were treated for years with Whipple's and still went on to relapse and have neuro symptoms.
Its a completely different kind of slow growing bacteria (Tropheryma whipplei), and I am not a doctor, but I truly do not think that the LLMD community looks at the comparison to Whipple's enough. Maybe it is apples and oranges, but it is beyond me that the powers that be can recommend years of antibiotic treatment for this disease, because the bacteria is slow growing and can be sequestered in the GI tract and nervous system, but that we are having such an issue with BB when the conditions are similar.
No one ever brings this up when the IDSA talks about long term antibiotic treatment. I mean, after all, I am sure you cannot judge constant improvement in clinical studies with whipple's either....yet they know stopping at 3 months would be deadly.
Yet LLMDs never play this card and I don't know why.
lyme4achange,
Probably the reason noone brings up Whipple's disease is because I think it really is a rare disease. Hubby has been tested for it by G.I. biopsy 3 times I think and also by bloodwork I think. Anyway, as far as I know none of the gastros he has been to have ever seen a case of this disease.
Whipple's disease or celiac disease is actually very common.
Possibly I didn't explain myself correctly.
My point is not about whether 1 or 5 bazillion people have had whipple's disease.
The point is, it is completely acceptable in the mainstream to treat whipples with long term antibiotics...years and years worth...because it is a slow growing bacteria that is sequestered in the GI tract and neurological systems.
It is perfectly acceptable to treat a common sinus infection, that has fast growing bacteria, until it is gone...often with a few rounds of zithromax or 20 days of a ceftin like ominicef, simply because antibiotics have a hard time penetrating the sinuses.
So, BB is a slow growing bacteria...that sequesters itself..and even may have hiding capabilities and the ability to go into a dormant non-dividing state. Yet it is not acceptable to treat for prolonged periods of time.
After having read transcripts frm hearings and articles and so on and so forth, I never see this comparison being made and yet it is basic logic.
It is my belief that unless it is caught very early, that we do not currently have an antibiotic that will "cure" BB out of the body. It seems that people on oral antibiotics onnly keep it at bay.
That is because we do not really know which drug to use, and we do not know for how long or at what dose....or even if we have one that will actually work when the bugs are in a non-dividing state.
When people come off IV, they relapse in time in so many cases of late lyme. Then there are those of us who aren't candidates for the IV drugs being used.
I don't know what to think but I do know that when there are diseases, such as whipple's, out there where long term antibiotics are used for the same exact rationale (slow growing sequestered bacterias) that should apply to lyme, its not about which is more common.
Many other bacterial infections are known to be very difficult to control. The Q fever bacteria can be chronic and require 4 years of antibiotics. H. pylori is difficult to eradicate and frequently recurs in the face of of triple drug therapy. Tuberculosis treatment typically requires three drug combinations for a minimum of 6 to 9 months. It is widely held that other chronic intracellular bacteria like CPN are virtually impossible to eliminate. Lyme-Bb bacteria are not unique. It is interesting that the Whipple bacteria causes a diseases which in many ways is similar to that caused by LD.
Hello! My baby ate an engorged tick from my dog, who has lyme. He ate it today. My doctor says that lyme does not survive stomach acid, and not to worry. Is that wrong?? Should I ask for a round of antibiotics, or one dose of antibiotics? My baby is 9 months old.
Just thinking about it some more -- is the lyme in the stomach tissue somehow protected from the stomach acid? Because the tissue has a barrier against the stomach acid, right? Is it possible that lyme bacteria are killed when it comes in direct contact with the stomach acid?
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