I'm seeing a new Primary Care doc today, can't afford a LLMD what do I ask for?

No, you do NOT want to ask for an Infectious Disease doctor!
The differences between them and ILADS docs are massive:
ILADS vs IDSA:
www.clinicaladvisor.com/controversy-continues-to-fuel-the-lyme-war/article/117160/

archinte.jamanetwork.com/article.aspx?articleid=226373

www.ncbi.nlm.nih.gov/pmc/articles/PMC2901226/​

If you get the feeling - or just feel brave enough - see if the new doc will treat you. Take along a copy of ILADS treatment guidelines ( www.lymenet.org/BurrGuide200810.pdf ) and a copy of this:
www.ilads.org/ilads_news/2015/ilads-treatment-guidelines-are-now-summarized-on-the-national-guideline-clearinghouse-website/

None of the co-infection testing is great, but there are a few labs that are better than others, depending on which infection is being tested for. I'm sure that others that have experience with this will be along soon to post about the different labs to use.

Hi tickonboard -

Difficult question. ;) But I'll do my best to offer some thoughts:

ID DOCS
No, I would not see an ID doc - even in CA. ID docs are notoriously un-lyme-friendly. Nearly all follow the IDSA (ID Society of America) Guidelines for lyme, which has been horrifically negligent in effective diagnostics and treatment of lyme and coinfections.

You probably know this but for anyone else who might be reading: millions of Americans either have no idea they have lyme because of uneducated MDs and poor etiology/testing, are currently misdiagnosed or are being mistreated, and many are suffering needlessly due to these archaic and dangerous guidelines.

SO... if in the rare event an ID is an ILADS member, she might be one of the rare enlightened ID LLMDs - but we would need much more of a view into her diagnostic and treatment approach, etc to determine that.

LYME COACHING
I haven't tried this but it seems promising as a way to get immediate help and for interim support - although surely limited in actual treatment.
www.lymecoaching.com/#!schedule-a-call/c1gzt

LLMDs
You might be better off seeing an LLD and at least get through the diagnostic stage and a recommendation for tx - and then take this info to your PCP.

Email me and I can share contact info for my LLMD - she operates a 501.c3 and MIGHT be able to see you (I think she has to see a certain number full-paying patients so that she can see others who need more financial support. And she doesn't do phone consults.

She had a nurse working with her, who is now with a DO and her rates are obviously much less and there are certain things she can and can't prescribe as a nurse but she is VERY Lyme literate and can definitely help you with some components of your protocol, or at least offer you help - certainly with testing.

YOUR PCP
1st appt: One strategy is to get treatment started w/ a true LLMD and then see if your PCP is willing to oversee it - working with you. Some MDs also agree to work w/ your LLMDs (which is another reason to start w/ an LLMD even if it's only for the diagnostic stage). Ask what they are willing to do - they might need to get to the point of knowing what kind of tx you want before committing.

I'd start first by explaining that you might need a couple of appointments to get through your issues (suggest 2 for myco, 2 for bart - probably better to start treatment in a staged way, too). Share that you believe are caused by infections from a tick bit and that you cannot afford a specialist but that there are a few things you're hoping he can help with and a lot you can do on your own.

There are some things you can try to get your PCP to do. It might be easier the less he/she has to try to file with insurance. And some MDs are clueless how to do anything w/out being told by insurance company how and what to do. Some things you can do on your own, too.

MYCO
2nd appt: Maybe start with Mycoplasma and cover why you think you have this infection. Beforehand, I'd learn what you can about how Mycoplasma presents, the symptoms and your potential exposure. Present a succinct (1-page) description of your sx that you feel can be attributed to myco, their frequency, intensity.

The myco test is simply bloodwork your MD can order. Of course, all of this could possibly be simplified with starting w/ LLMD first.

3rd appt: Also share the desired treatment you're seeking - maybe a couple options and clearly state what you're asking the MD to do for you (test, then treat w/ ____). This will help give him/her direction and some place to start.

You can also share treatment resources and I'm sorry, I'm not sure what they would be - I'm not sure if ILADS includes anything on myco.

BART
4th appt: Bart is also tricky because tests are also unreliable. You can also ask your LLMD to order a Fry Labs test (although you might also check to see if you can order it on your own) - it's in the $400 range and won't be covered by insurance but it covers the "bart-like organisms" and I think it's more helpful (and are treated same ways as bart).

You may need the PCP's help to get tested and for abx but you can treat w/ herbs on your own. You can email me for sources for the herbal tinctures that are sometimes for purchase only w/ practitioner's info.

Getting started is the toughest part and we can help so just take one step at a time. I hope this is helpful -

-p

Post Edited (Pirouette) : 6/9/2017 11:47:07 AM (GMT-6)

Just wanted to mention that THE Dr. J. is an ID Dr. But he is also lyme literate...


(Do we need to only post initials for him? He openly advertises)

Girlie said...
(Do we need to only post initials for him? He openly advertises)

Not really, but it can be very confusing for people new to Lyme as to which doctors can be openly mentioned and which ones can't for their own protection. I think it's best to keep it to all doctors can only be mentioned by initials so that less 'mistakes' happen. We need to keep every LL doc we can get our hands on!

Consider self treating and use the pcp for routine blood work and med he will be happy to give anti anxiety and anti deppression...maybe pain...they get paid to script these .if you want abx i suggest ordering online .quest and labcorp are almost useless as they will only test antibody to two bart species .i had to see my pcp 10 time before she would order these .i hope the best for you . Until your partner will treat .confide here talk about it with others who get it hold hope and keep going..bvt and rife is the cheapest most effective tx and i am comparing to iv oxidative and iv abx and herbs .imo

Search for an integrative or functional doc in your area. Some take insurance. My GP is an integrative med practice that takes insurance. They don't treat Lyme but have been amazingly supportive of my treatment.

If you can't find one of those, you may want to look for a D.O. Generally speaking, they tend to be a little more holistic than regular MDs. Not all of them, but a lot.

The doctor I saw said she could only send me to a infectious disease doctor and that she cannot treat me Medi-cal is very limited but I'll look for others. I totally broke down in her office sobbing, this has been going on for so long, it sucks feeling like no one can help.. I hope I find the right person soon. I really appreciate everyone's help on here anyway, I'm so happy I found this forum it means the world to me thank you

tickonboard said...
Thank you for your suggestions! What is a D.O doctor?

Yes. It's a Doctor of Osteopathic Medicine. Here's a good explanation from the internet. BTW, I agree with the others. I would steer clear of Infectious Disease specialists too. Most completely deny Lyme.

"If you see a primary care physician for your general healthcare, there’s a chance you’re seeing a D.O., not an M.D. While both degrees mean your doctor is a licensed physician, their training differs slightly and each has a unique perspective on care. As Brian Krachman, D.O., an internal medicine specialist at Piedmont Physicians Group, explains, “A D.O. is an osteopathic physician, while an M.D. is a medical doctor, an allopathic physician.”

According to the American Osteopathic Association, doctors of osteopathic medicine regard the body as an integrated whole, rather than treating for specific symptoms only. Allopathic medicine, also referred to as “Western medicine,” treats disease symptoms using remedies such as drugs or surgery.

Physicians with a D.O. are licensed in all 50 states to practice medicine and surgery, as well as to prescribe medications. The education for both degrees is similar and both are required to complete accredited medical residencies.

One major difference is D.O. programs place an emphasis on primary care. “Most D.O.s are in internal medicine, family practice, pediatrics, OB-GYN and general surgery,” says Dr. Krachman. “We spend a lot of time with people. The emphasis – which we call primary care now – is on people.”

Osteopathic medical schools also require additional classes – between 300 and 500 hours – on the skeletal system and the interactions of your body with diseases. Dr. Krachman says there may be slight personality differences between physicians with each degree, as D.O.s often address medical conditions from both a medical and lifestyle perspective. D.O.s place an emphasis on getting to know a patient’s lifestyle, family and unique concerns, which better informs their medical treatments."