Whipple's Disease & long term abx

[Ricobord]

I just watched a recording of the TV show Royal Pains, and it featured a large animal vet who is sick with symptoms very similar to Lyme or Lyme + Bartonella (given the GI involvement).  It turns out he has a rare infection called Whipple's Disease that is associated with exposure to soil and animals.

I hadn't heard of it so I looked it up. It is an intracellular bacterium related to mycobacterium (which includes TB), and it requires 1-2 years of antibiotic treatment with tetracyclines (doxy is one choice), penicillin, or sulfa drugs. One site even recommended an initial treatment of IV ceftriaxone (Rocephin) followed by at least a year of oral meds.  It says the relapse rate for less than a year of treatment is 40%.

This is very similar to the treatment ILADS recommends for late stage Lyme.  Why is this treatment considered "too dangerous" to give to Lyme patients, but nobody bats an eye at this for TB or Whipple's?   If this is okay for these other dieases, patients should be informed of the risks and offered a choice.  I imagine the vast majority of patients would take a low risk of long term abx problems rather than live with their Lyme Disease.

[mojogal]

Rico, could it be that nobody takes us seriously and therefore we are just not even thought of for this treatment by the majority of medical professionals. Let's face it, this illness is not a money maker for main stream docs, takes a lot of time and effort and even then if we have co-infections, unlike TB and Whipples, our treatment could go on for years.

[mkh9]

I agree.Since they now know that Lymes (B. burgdorferi) hides out in the lymph nodes and tricks the immune system etc. They know it is hard to treat this organism and it is evasive. I think doctors are slow to change (hard headed). It took them years to believe H. pylori caused ulcers and they finally came around .Same with Herpes simplex it hides out in nerve cells. It is an ongoing treatment with Herpes as well. HIV hides out in T lymphocyte cells. But some people are cured or kept at bay. That is not to say that some people are eventually cured of Lymes disease either...
mkh9

[JackieCalifornia]

Which antibiotic is used depends on whether the bacteria in question are susceptible to it -- nothing strange about that.

[mkh9]

I don't know perhaps they think that Lyme patients are more immunocompromised? Do lymes patients get whipples too? I'm not sure I understand why Lyme patients should get the antibiotics recommened for Whipples? I think that whatever works should be given but the treatments are similar so why is there reluctance to try something new? The medical commuity has certain guidelines they stick to so they won't get sued and so they won't do undue research on people. I think if they had signed consent I don't see why they can't do it. Let me know if I'm off center about what you are trying to say.

[JackieCalifornia]

I suspect the bias arises from the apparent misconception that B.burgdorferi (the bacterium that causes Lyme) is killed very quickly by antibiotics and has no tricks up its slimy little sleeve to evade antibiotics.

Standard treatment for TB is 18 months of antibiotics, and I've seen it prescribed here in the US without any concern that treatment was too lengthy.

This situation indicates to me that the work of persuasion and education required is to document the longevity of Bb and its slow reproductive cycle.  Perhaps that would get the attention of the IDSA-types.