LLMD in/near St.Louis,MO

Dr. C. doesn't have an appt until May, so another doctor would be great. Thank You.

Post Edited By Moderator (Girlie) : 8/27/2015 3:39:32 PM (GMT-6)

Hi mtherrell-

Just a heads up, many LLMDs or LLNDs have relatively long waiting lists.

In the event you cannot get in to see someone else sooner, you can get on Dr. C's appointment wait list/cancellation list. I called to get an appt with him last December and was told it wouldn't be able to get in until July, but was put on the wait list. Low and behold they called me the end of Jan, and I was able to get in to see him the Feb 3. Still not an immediate appointment, but considered myself pretty lucky. In the meantime, I started Doxy as prescribed by my PCP.

Dr. C was able to pick up where my PCP left off with the next antibiotic in his protocol.

I just had a follow up appointment with him yesterday and I have made some pretty big strides so far. He is very thorough, kind, and open minded. I have heard nothing but good reviews from others and I would personally highly recommend him.

Good luck!

Because you had a tick attached and symptoms developed...you should really accept that you have lyme disease.
Your test was negative - which lab was it? Was there any information - was it a Western blot...if so were there any positive bands?

I didn't have a hard time with the lyme disease diagnosis...as I was ill for over a year...and had sooo many symptoms. Nothing showed up in lab work...so I didn't really have a diagnosis....other than menopause...but that didn't explain most of my symptoms.
I cried tears of happiness when I received my Igenex postive test ....as I now had a diagnosis...and it is treatable.

You need to follow through with seeing the LLMD. Good advice about keeping the appointment...while you look for another one...you may get in on a cancellation.

The bulls eye rash is a symptom of lyme...and you should have been diagnosed with lyme disease.

So, embedded tick, bulls eye rash, symptoms consistent with lyme disease...what more do they want???
Any intelligent Dr. should know that the test results aren't accurate/reliable. - unless they've been living under a rock.
(Sorry...I just can't believe the ignorance)

10 days of doxy 100 mg twice daily is not sufficient to treat even early stage lyme disease...sorry!


You have early disseminated lyme disease (bulls eye rash plus other symptoms)

From Dr. Burrascano's Lyme Treatment Guidelines:

EARLY LOCALIZED
-
Single erythema migrans with no constitutional symptoms:
1) Adults: oral therapy
-must continue until symptom and sign free for at least one month,
with a 6 week minimum.

EARLY DISSEMINATED:
Milder symptoms present for less than one year and not complicated by immune
deficiency or prior steroid treatment:
1) Adults:
oral therapy until no active disease for 4 to 8 weeks (4 - 6 months typical)

Wow, so sorry you had to deal with all that. Glaringly obvious signs of lyme and they STILL can't treat you properly!

I had a little bit different journey to a diagnosis. My husband pulled a tick off my back spring of 2013. No bulls-eye, no immediate symptoms. Things started to go downhill very slowly thereafter, but everything was subtle.

For instance, I worked out constantly and had a meticulous diet but could not lose the last 15 lbs from pregnancy a few years prior. I always seemed to be able to explain it away (oh, I had a cookie this week, blah blah blah). Then it was night sweats for weeks, which I thought was hormonal.

A few months later, weird hive like rash all over my upper body that lasted for 5 weeks. Maybe I ate something I had a reaction to? Then I came down with low grade fever that lasted a couple of weeks, but blood work could not find anything. Viral infection? Then my hands started to swell up with redness and pain in my finger joints. My husband said it looked like I had been hitting the punching bag. The worst then was the debilitating fatigue, brain fog, and irritability. The accumulation of all this began to concern me. I began to look into adrenal and thyroid issues, but again, all labs were "normal".

I finally had my PCP run every test under the sun. Sure enough, Lyme came back CDC positive. That was Dec 2014, so it was a year and a half from the time I was bitten until I had a diagnosis.

When you call Dr. C's office, ask them if you need the Western Blot. You may not need it to be treated by Dr. C if you have medical records indicating the bite, bulls-eye, and lyme symptoms. It would certainly save you money, and half the time the tests are inaccurate anyway. The test does not look for the lyme bacteria, but for your body's immune response to it (via antibodies). If you haven't have the appropriate immune response, then the test cold be false negative.

In the meantime, I would see if you can find a functional dr or family dr who is willing to treat with more Doxy until you can get in to see Dr. C. Girlie is correct, 10 days is not even enough if they had prescribed it right after the bite. 30 days immediately after a bite at a minimum. Sometimes, that isn't even enough. Treatment is all very individual.

Good luck to you!

Thank you all for the help and support. It helps knowing someone knows how I'm feeling!

Traveler, I sent you an email.

Post Edited (mtherrell) : 8/28/2015 6:04:40 PM (GMT-6)

mtherrell, I was told about the same expert you're speaking of, I think. this one is in Columbia. I've tested positive for RMSP for both tests. That was back in May. I never heard back from anyone so I asked my Internist late July and he put me on Doxy for a month. I've been sick for so long, and also was diagnosed with Fibro way back in '85 I don't know what's one thing or the other or if it's all RMSF, as I've had problems with ticks everywhere I've lived in the last 30 years.

Anyway, I am still running fevers below and above 100 nearly every day on top of the overlapping symptoms but my Internist is hesitant to go further with the protocol list. So because 'C's name was at the top of the sheet, he wants me to go to him. It's 2 hours away but I'm desperate, so they made a call for me.

I just got a call from 'C's office that they don't normally get referrals, and wondered why they'd gotten this one, so I explained that I'd tested positive, had a month of Doxy, and my Internist's reluctance.
She said they don't take any insurance. I replied I'm on Medicaid because of being on disibility. (naive of me to think Medicaid was any better than any other insurance)

She says there is an hour and half initial consultation that is $500 cash. She didn't need to say more. I thanked her for the call and hung up.

I have to budget a $700 a month check, no way can I come up with that much cash for just a consult.

I guess it's time to get my affairs in order.

I think that's awful.