Questions & Looking for LLMD in NC (Near Charlotte OR the Triangle Area)

Hi all,

Can anyone recommend me a LLMD in North Carolina? I currently live in Charlotte, but I go back to the Triangle Area every 3 weekends or so to visit my parents so I am willing to see a LLMD there also.

I started having severe knee pain on September 9th and over the next couple of weeks more joints and muscles started to ache/cramp up. Eventually I developed chest pain, so I finally went to my family doctor on September 28th and was tested for a couple of autoimmune diseases (Lupus, RA, Sjogrens, etc) and given a 12 day trial prescription of Prednisone just in case. All of the tests came back completely normal, and I was referred to a Rheumatologist who I will be visiting at the end of October.

After my prednisone trial ended, my joint pain still bothered me. I felt really alarmed because I suddenly developed a stiff neck and pain in my spine so I turned to Dr. Google (haha). I had a half-healed rash from an unknown bug bite and I initially thought it was unrelated to my joint pain, but Dr. Google helped me put the bite and the joint pain together and I figured I had Lyme. On October 12th, I tried to call to make a same day appointment with my family doctor to test for Lyme. The receptionist on the phone gave me attitude and said "Um, we don't test for Lyme here", and I was like "Y'all don't have the connections to send a tube of blood to a lab that will test for Lyme??? What kind of practice are y'all running?? " Whatever, she let me make an appointment anyway since I insisted I wanted my doctor to look at my bug bite. When I got into the office, my doctor looked pretty skeptical because all I could really show her was this huge, but very faded blotch on my foot with a gnarly dried up scab in the middle. Luckily, she agreed it would be a good idea to rule out Lyme disease so she ordered these two tests from LabCorp: "Lyme Ab/Western Blot Reflex" and "LYME, WESTERN BLOT, SERUM".

On Thursday (October 15th), she contacted me and wrote "Your blood work shows that you have tested positive for Lyme disease. I believe it is the early stages, so can treat with an antibiotic called Doxcycline. You will need to take it for 28 days. Will recheck levels in 2 months to see if resolved." Right now I'm on 100mg of Doxycycline twice a day, do y'all think that is a high enough dose? Is 28 days long enough to really knock this out of my system? Also, is my joint pain supposed to resolve sometime within those 28 days of antibiotics or after the 28 days? Should I test for co-infections? Also, how do I know this wasn't a false positive? I tested negative for IGG and only had 2/5 bands, but I was positive for IGM and I had 2/3 bands.

I know I'm extremely lucky to begin treatment only a month after my symptoms started, but I definitely think it would be a good idea if I could also consult with a LLMD. I just have a lot of questions and I want to make sure I'm being treated correctly; I don't want any long term complications. If you guys have any LLMD recommendations, that would be awesome.

Also as a final note, I will periodically update this thread so that the folks who are directed to this thread by Dr. Google will have something to read/learn from.

Post Edited (Gummo) : 10/17/2015 2:54:24 PM (GMT-6)

Thanks kyo07, I just sent you an email

Also, when you have a moment, you might be interested in reading through the "New to Lyme?..Start here!" thread at the top of the page. It's full of good information - symptom lists, info on probiotics, detoxing suggestions.

Detoxing is crucial when treating for lyme disease. You need to do several daily (not once in a while).
So, when reading through the aforementioned thread, pay particular to that section.
Effective detoxing will help with the worsening of symptoms that happens during treatment. This is caused from the bacteria die-off producing endotoxins. Detoxing will help flush out the toxins.

Also, taking probiotics is a must - especially if on Pharmaceutical antibiotics. They will kill not only the bad bacteria, but the good bacteria. We need to replenish that..by taking the probiotics - again daily

I hope you find this forum to be helpful - and supportive.

I was given 5 days because shortly after onset of symptoms I developed a streaky rash behind my ear with spots on my face. I thought maybe I had shingles. Went to urgent care and they gave me steroids.

Gummo - don't beat yourself up over the steroids. You didn't know better!

You now have a LLMD to get properly treated...so focus on moving forward now.
Yes, steroids are bad when you have LD, but you are off them now - it was short term..it's okay. Just concentrate on getting better now..

@Girlie thank you for the reassurance :)

@Kyo07 I asked her about upping the dosage and whether we should be testing for co-infections and she dismissed both ideas saying they weren't necessary.

I will be seeing a Rheumatologist on Monday, and my family doctor said I should show him my western blot results & ask him about the dosage and the co-infection testing. If he approves then she will comply with his recommendation.

My ankle, back and shoulders are still killing me. I hope that even if the Rheumatologist isn't lyme friendly, then he will at least help me asses the damage (permanent or can heal with time) and provide a solution for temporary relief.

One thing no one commented on was the "will recheck levels in 2 months to see if resolved".

There aren't any levels to check. The test is a qualitative test not a quantitative test. There is also no such thing as a false positive. If you test positive then you were definitely exposed. Treating with antibiotics won't change the result.

If you caught it as early as you think, then the IGG would be negative because it takes a few months to show. The IGM takes about a week and then fades away after 6 to 8 weeks. This information comes from the Igenex website under Lyme Disease then Western Blot. There is also information in at least one of the links found in the "New to Lyme?" thread. There you can find information about which bands are specific to Lyme. If you have any of the bands that are specific to Lyme then you have Lyme.

So if your doctor retests after a month or two of antibiotics, you would expect the IGM to be negative. That doesn't mean it is eradicated. You have to treat for one to two months after you are symptom free as Girlie said.

If I messed any of this up, someone please correct me.

There are a couple of holistic practices in Raleigh that treat Lyme and there is an LLMD in Chapel Hill. Based on the time it took for me to get an appointment with her I don't think you could get in before the December appointment you already have. There is another MD in Raleigh, but as far as I can tell he's a crook. There are lots of red flags on his website. When I mentioned his name to my pcp, she made me promise never to see him. He has been in trouble with the state medical board several times.

Happy that you caught it early,
Kim

gkamom said...
There are a couple of holistic practices in Raleigh that treat Lyme and there is an LLMD in Chapel Hill.

I am planning to see the Chapel Hill LLMD in December :)

Right now, my primary care physician has me on 200mg doxy per day for 28 days and I am currently on day 12. My joint pain has not gotten better or worse, but my muscle twitching has increased dramatically.

Today, my Rheumatologist suggested that I STOP taking the Doxy on day 14 and switch over to 500mg Azithromycin for 10 days as a trial. If I show no improvement then he will put me on IV antibiotics. He admitted he wasn't familiar at all with the disease and he even asked his assistants to make photocopies of the guidelines Dr. Burrascano wrote (I printed it out and brought it to my appointment just in case).

I read in Dr. Burrascano's guidelines that oral Azithromycin alone is not effective. Now I have three questions:

Is it safe for me to stop taking Doxy to switch to Azithromycin as he suggested?

Is it safe for me to try taking the 200mg Doxy and 500mg Azithromycin together?

Am I better off just ignoring his Azithromycin suggestion and finishing my 28 day Doxy regiment?

Yes Gka, That's the other LLMD I mentioned, and he certainly has crook-like aspects.

I would try the LLMD in Chapel Hill. She's probably your best option Gummy.

The next best option is the DC area.

Margaret

She's a very good doctor when you're in the room with her one on one.

But she's got two strikes against her: One is, she has Lyme herself, and has to take sick days, plus, most likely has trouble staying organized. The second is that she is completely swamped with patients. A number of counties in NC are becoming endemic, and she's the only good LLMD (basically) in NC.

She needs to hire more people, but for some reason she hasn't. It probably takes all her energy just to deal with what's going on. Ok, she says she's much better, but the last time I called, her office assistant said she was home sick, and was having to take it, "one day at a time."

So, as far as follow up, or contacting her in an emergency, forget it.

She's not that careful checking drug interactions, and she put me on such a low dose of thyroid meds that I got really sick.

Having said all of that, she really knows her stuff regarding Lyme.

If you stay on top of things, and you can work well with the office assistant, I think she could be really helpful. I know people who have gotten a lot out of their visits with her, one of whom is in remission.

If you end up in the ER for some reason, don't count on being able to reach her.

Sorry if that sounds strongly mixed; she's dealing with forces that are beyond her control.

Margaret

Thank you teragram and gardener20 for your comments, I do appreciate your honesty.

And gardener20, I am so sorry to hear this happened! The waiting time for the appointments have been so difficult, I am sorry you are having to go through it yet again.

Thankfully I have a back up scheduled in MD, but was trying to avoid the additional travel that I have already done. But looks as though it may be in my best interest to continue traveling north to MD. My heart was actually set on the doctor in MD, but I am just worn out and the additional traveling will be challenging.

Best of luck to ALL of you during these times! And thank you again for the responses.

Gardener, I was seeing an LLpsychiatrist in the Chapel Hill area, and she warned me about the sick days the LLMD takes. She told me I should always call the day of the appointment to make sure it was still on.

However, I don't think you should have waited another two months, seeing as you were scheduled to be seen that day. The LLMD and office assistant should have taken that into consideration.

Kittykat, just curious, but whom are you seeing in MD? You can just post doctor's initials if you want.

I'm going to be scheduling an appt. with someone who has offices in MD and VA, but I'll be seeing her in MD.

As I said before, I just wanted to confirm that some of her patients really do get better.

It's a shame when doctors get so swamped, but her situation is also complicated the the fact that she has Lyme. I think she could handle things better if she had a lower patient load.

Margaret

Hello teragram, the doctor I will be seeing in Rockville MD is Dr. D. J.