Welcome to MedHelp -- sorry you are ailing, but glad you are taking action.
The split in the medical community about Lyme is like no other ailment I have heard of, and you have run smack into it. Most MDs look to specialty groups for rules of the road in diagnosing and treating patients -- just as a Porsche mechanic will look to a group focussed on Porsches to get the best advice on how to do a tune up properly.
The difficulty with Lyme is that it is a relatively new disease, not recognized or widespread until recent years, and the senior docs practicing in the infectious disease specialty area are still stuck on what they learned decades ago: that Lyme is rare and easy to cure with a few weeks of doxycycline. More recent research and recognition that Lyme has spread in epidemic fashion has not changed the senior docs' thinking, and it is these senior docs who set diagnostic and treatment protocols/approaches in their field.
Do you recall what it was like when AIDS was first recognized as something other than a disease that only gays and Haitians would get? Viruses and bacteria don't care who they infect, and the medical community knows that about AIDS, but not yet Lyme. Human nature is to be stubborn.
Insurance companies are also on the side of the Lyme deniers, because it is their nature to be cautious about spending healthcare dollars and to not participate in over-treating patients.
Things are changing slowly, but with the senior infectious disease MDs and the insurance companies lined up against a more progressive view about Lyme, there is not much way to convince a doc who isn't willing to do his/her own reading. I also suspect that docs can be threatened to be dropped from the list of approved docs by an insurance company if the doc is found to be 'overtreating' for something like Lyme.
Don't mean to sound all gloomy and conspiratorial here, but it's just the way it is. In some states, the state medical board is in on the act, and it's impossible to find a doc to treat Lyme aggressively (meaning more that a couple weeks of doxycycline).
So. That's the politics of the situation. Now -- what to do? The internet is your friend -- you are in Colorado, yes? I'm not up to speed with how hidden Lyme docs are in Colorado, but if you search
colorado lyme disease association
you may not find a group with that name, but you'll find other leads. You can also email to
contact [at] ILADS [dot] org
for a referral to a Lyme doc near you. ILADS is the International Lyme and Associated Diseases Society, the main voluntary group for MDs who recognize Lyme for the trouble that it is. It may take several tries to find a compatible doc, but it's worth doing, and more to the point, Lyme doesn't go away by itself.
So the short answer is, you probably won't be able to persuade your current doc to treat you aggressively or to test for other infections the Lyme ticks also carry about half the time (and which often need different meds) -- the split in the medical community is wide and deep. Thus quietly finding a new doc to treat you for Lyme is what I would do.
The rule of thumb here is NOT to post LLMDs' names in public, to avoid having them get brought up on charges by unfriendly docs who disagree about how serious Lyme is. We need all the LLMDs we can muster, tho you will see some names get posted -- I just avoid doing so when possible except for those docs who have 'outed' themselves loudly and in public, such as serving as president of ILADS as my doc did.
About your test results, the different factions in the medical community read the results differently -- the nonLLMDs use a standard that was developed some years ago and intended for epidemiological tracking of the spread of Lyme disease, not for the diagnosis of individual patients. To keep the data pure, the epidemology tracking confims a case of Lyme only when a large number of test bands are positive -- which utterly ignores the fact that a Lyme infection tends to suppress you immune system, and it is the immune system reaction that the standard Lyme tests look for.
Result: you can have a low result on the standard tests but still be very much infected. (ILADS docs usually use a different test that looks for Lyme bacteria DNA in your blood, not for your immune system reaction, which can be absent even in a raging Lyme infection.)
A doc should also consider what co-infections you might have that the Lyme ticks brought with them ... and nonLLMDs often don't think those big thoughts.
Please let us know if we can help -- best wishes to you -- you can beat this -- I did, and so have many others.
PS about convincing your primary doc -- it's a difficult and sometimes impossible task because if the doc is lined up with the IDSA standard of lyme being hard to get and easy to cure, not much will change the doc's mind.
You may be able to find another doc in your insurance plan who is more broadminded, but if not, then your insurance may reimburse partially anyway. Your Lyme doc may know of some friendly docs who are in your health plan, but maybe not -- can't hurt to ask.
Exploring local Lyme groups online or in person may be helpful.
Ditto what Jackie said. It's almost impossible to get a mainstream doctor to believe you have Lyme and they never co-infections, which I just found out I have another one. Making 3 in all plus Lyme. This makes things more complicated.
Herxing itself, while uncomfortable and annoying, is not necessarily a bad thing to be avoided .... Herxing is the result of the bacteria dying off and releasing toxins into your system. It takes a few days for the body to process all the garbage, and then you start to feel a bit better again. It's a cycle, so it will continue to happen as long as the antibiotics are doing their job and until the bacteria are all dead and gone.
Sometimes it's hard to tell the difference between a Herx and the simple effects of one or more infections (since Lyme comes with co-infections about half the time ... 'bonus' diseases the same Lyme ticks can carry).
Do report the Herxing to your doc, so the doc can factor that in to your treatment regimen and how fast to go. Too much Herxing is not good for various reasons, and the data about your experience is important for your doc to have so s/he can gauge what's going on inside your body. As you already know, Lyme is a tricky witch, and the docs need feedback from you about how you feel for how long after taking what meds. You are part of the feedback loop, and you're the only part of it that can talk.
So it's not wimpy or wrong to tell your doc your reaction to the treatment ... in fact, you NEED to tell your doc how you feel for how long etc. i was lucky to have little annoying herxing, but others have a lot of it. The doc can fine tune treatment so that you are not overwhelmed by the side effects.
It's like cleaning out the house or the garage: do what you can reasonably do room by room, rather than taking everything out and piling it on the front lawn at once. Overwhelming your already taxed body is not necessary or good. A measured approach is more effective and certainly more tolerable.
Let us know what the doc says, okay? Best wishes to you --
Whether herxing comes from antibiotic use or non-antibiotic 'detox' meds/supplements while clearing out the trash, I would think it can have a similar irritating effect to the body. So I see an antibiotic herx vs a detox herx as the same function, and thus a distinction without a difference.
A Herxheimer reaction is, per wiki, 'a reaction to endotoxins released by the death of harmful organisms within the body'. Whether the reaction is caused by endotoxins released through the use of antibiotics (which are chemicals) or through the use of herbs or other non-pharmaceutical medicinals (which are also chemicals), the fact is you are having uncomfortable symptoms that are more than your ailing body is able to deal with currently. If it's an allergic reaction to something you are taking, that needs to be dealt with too.
Don't just soldier on -- please call your doc and report your symptoms and reactions so adjustments can be made to your treatment. Amateur websites are not meant for such things.
It's been at least a few days now that you are suffering, so please ... call your doctor. Only your doc can tell you what is going on, how serious it may be, and what to do about it. Please!
On your question about how to convince your GP that you do have Lyme, you might try to find some articles on Google about how the failed LymeRIX vaccine from the 90's used bands 31 and 34 for the vaccine. They were the most common Lyme antibodies seen early in an infection (aside from band 41, which is nearly universal, but also triggered by other spirochetes).
But since vaccinated patients would be positive on these two bands, the CDC wanted a test interpretation for surveillance purposes that wouldn't show a false positive in vaccinated patients. These 2 bands were left out of the test interpretation because they didn't want to count vaccinated patients who tested false positive.
Unfortunately, a few years later, this criteria, developed for statistical sampling and tracking purposes, was decreed by the IDSA to be the new diagnostic standard. The vaccine failed and was pulled from the market (the lawsuits from sickened patients is still in the courts) and yet the IDSA and CDC never revisited the test criteria to add those 2 bands back in.
You have those 2 bands, 31 & 34. I believe 39 and 58 are also very indicative of Lyme.
But even if you can get your GP to prescribe you some antibiotics, and you start getting better, you'll still probably have to get to an LLMD to finish your treatment. If you don't treat for a couple months beyond the resolution of all symptoms, you'll most likely relapse. Unfortunately, doctors are taught to prescribe only a month (maybe two in extraordinary cases) and that your remaining symptoms will resolve within a year. Then, when you get sicker, they insist your Lyme was already cured and now you must have something else.
Once you start treatment, try not to interrupt it. It takes longer to treat you and more difficult as it's the tougher bugs that get left behind in incomplete treatment.
I agree with mojo -- and with your doc. I've heard it phrased that IND means 'not negative' -- not a strong positive, but that there is something (Lyme) triggering the weak positive responses that should not be ignored.
From a website focussing on Lyme (truthaboutlymedisease [dot] com), here are what those bands indicate.
['Bb' is an abbreviation of Borrelia burgdorferi, the formal scientific name for the Lyme bacteria.]
38 -- cross-reactive for Bb
(meaning it might be Lyme, or might not)
39 -- a major protein of Bb flagellin; specific for Bb
(meaning this is definitely a piece of the Lyme bacteria's little whip-like tail, and that nothing else would make this band positive)
58 -- unknown but may be a heat-shock Bb protein
(meaning maybe it indicates Lyme, maybe not)
From what I read, I also agree with your doc and with mojo, that IND [indeterminate] should be counted as a positive for Lyme. It's not 'nothing'.
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