Lyme Literate MDs: Saviors or Charlatans?

[ActiveMSers]

LLMD: Savior or Charlatan?
Lyme literate doctors are the physicians people turn to who have suspected (but not confirmed) cases of Lyme disease, as infectious disease specialists rarely treat those without a positive test. In the US, the International Lyme and Associated Diseases Society (ILADS) lists their recommended providers while Lymedisease.org has their own list of specialists. Alas, there is no official certification or set of qualifications to become a LLMD, so it will always be a bit of a crapshoot until there is a fundamental change in how Lyme disease is diagnosed. Working on it!

https://www.lymedisease.org/find-lyme-literate-doctors/

https://www.ilads.org/patient-care/provider-search/)

[Pistachio]

Dave, while talking to the infectious disease doc (in fact, head of infectious disease in my very large, medical-based, multi-hospital city) he claimed that most infectious disease docs will treat someone with a negative test but only those who have proof of an erythema migrans (bulls-eye rash). My infectious disease doc was not buying it when I first saw him until I pulled out my phone with a picture (of the rash) I had taken 5 years previously. That seemed to be the clincher. Suddenly he was quite interested and full of questions. And, as you know, he did agree to treat me with IV antibiotics (ceftriaxone).

But I do agree, if you don't have a picture, and test negative, you are, as the idiom says, S.O.L..

[Becca from Cali]

Kudos to you, Pistachio; that's awesome!

Unfortunately I have no pic of my EM rash, so I am not believed enough by my ID doc to warrant treatment. It's so frustrating. What, they think I'm lying? Seriously, don't people have better things to do than make up stories about having an EM rash!? I wonder why a doctor jumps straight to disbelief... Aren't they supposed to take down the clinical history of a patient and use it in diagnosis? Smh.

Anyway, Dave, I fear that any doctor treating Lyme Disease IS, in many cases, considered a charlatan by other doctors. Lymedisease.org published an article about the stigma a doctor faces because s/he/they treat(s) Lyme. So while I appreciate that you give links to find LLMDs, I wish the LLMDs were appreciated by their MD colleagues, instead of being stigmatized. This has to change, of course.

Thanks for allowing space to vent. ✌️☮️

[Pistachio]

Kudos to you, Pistachio; that's awesome!

Unfortunately I have no pic of my EM rash, so I am not believed enough by my ID doc to warrant treatment. It's so frustrating. What, they think I'm lying? Seriously, don't people have better things to do than make up stories about having an EM rash!? I wonder why a doctor jumps straight to disbelief... Aren't they supposed to take down the clinical history of a patient and use it in diagnosis? Smh.

Anyway, Dave, I fear that any doctor treating Lyme Disease IS, in many cases, considered a charlatan by other doctors. Lymedisease.org published an article about the stigma a doctor faces because s/he/they treat(s) Lyme. So while I appreciate that you give links to find LLMDs, I wish the LLMDs were appreciated by their MD colleagues, instead of being stigmatized. This has to change, of course.

Thanks for allowing space to vent. ✌️☮️

I've thought about this a lot - what I would have done had I not had that picture. And, I know this might not be a popular opinion but, if I was desperate I would find a pic online and download it. I know, I know, dishonesty at its best. But seriously, what are we to do when we are literally dying away a little bit more each and every day and we can't get treatment because a doctor is holding his/her power over us because they "don't believe us" or, "don't believe in Lyme Disease". As my husband is prone to say (he's a Chiropractor)....."You don't have to believe in something for it to be true". I am thankful every day for my husband because HE believed it. And HE took my blood, and HE sent it to Germany, and HE spoke with Dr. Armin Schwarzbach about my results and the best available treatment options. He believed - not because he should believe but because he was the one who pulled the tick off of me. He was the one who first saw the rash. He was the one who has watch me with crippling fatigue. He's the one who's seen me stumble and trip due to the lesions in my brain.

By the way, something I don't know if I've mentioned before but when he spoke with Dr. Schwarzbach they both knew the deal with North American doctors not wanting be believe us and prescribe IV antibiotics. So, Dr. Schwarzbach came up with an alternative - he told us to talk our regular old M.D. into prescribing minocycline. This is easier for a doctor to prescribe as it's "just an acne drug". They routinely prescribe it for long periods of time to teenagers. I was able to bring in all my evidence and get my G.P. to prescribe me that for 3 months. It made a HUGE difference. Seven days after starting minocycline I Herxed really, really bad. Like, can't get out of bed, kind of bad. My neck and shoulders were like a concrete wall. Nothing moved or flexed. I felt loads better after taking minocycline for 90 days. But I will admit to a few lingering symptoms. The Ceftriaxone, prescribed 9 months later seemed to clear up the lingering problems. AND, after a full treatment of ceftriaxone I had a clean MRI for the first time. I just hope that the Lyme is actually gone but I have my doubts that it's a forever fix. I do still have lingering problems due to the lesions but that's not likely to change. I am working on that, though, by micro-dosing with psilocybin.

[Becca from Cali]

I've actually thought about that same thing. Since my Mom and I both got bit on our inner left leg adjacent to left knee, I asked her to send me a pic of hers, which she did, but I must've lost/deleted it because I can't find it now. (Sigh)

[AnotherDave]

My son took my wife and me to an Any Lab Test Now facility in Denver and we both had Western Blot tests done by personal request. And personal payment. Mine came back with one band "reactive" so some sign of something is in there. Doctor here in SD immediately asked "who ordered a Western Blot without a positive ELISA?" Then came, "You can't trust those kinds of labs. They're only after your money." The Marine in me took offense and responded as any officer and gentleman could. "Then order your own (Foxtrot) Western Blot and compare." She didn't know if "they" would let her order the test without a positive ELISA but she did anyway and "they" got the same result. Wow, (November Sierra). Ain't that a swift kick in the (Alpha). But one band a positive test does not make. It could be something else. She "could" not order the doxy on such "dubious" evidence. Ain't that another swift kick in the (Alpha), this time it was my (Alpha).
So we go on. One day at a time. Suck all goodness out of every moment and enjoy the Tramadol. Suck on a good Bourbon in the evening and then call it a day. Include my Benedictine Morning, Noon, Evening, and Bedtime Compline Prayer times as part of my vowed discipline, along with a nice period of "Divine Reading" (lectio divina). Life is good. Maybe I could look for some good cigars online again - that would sure (Papa)-off my wife! It seems that that's all I can do well lately! SNAFU.