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I'm looking for a new LLMD......

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Posted 9/23/2009 6:47 PM (GMT -5)
Hey everyone!

It seems that i've been backsliding lately. I'm not really sure why. I've been on the cowden protocol for about 1 month. It's been about 6 months sinse i've tried any abx. I'm thinking about seeing a new LLMD. I need some advise on who to go to.  I have thought about going to Dr. J. in SC but it would be so expensive. Anyone seeing him? What about Dr. M. in AL? Please e-mail me any info. that you have. Thanks  

Posted 9/23/2009 7:07 PM (GMT -5)
georgiagirl,

Did you ever email Ticker for help finding a doctor? If not, I can give you her email. She knows of the best doctors pretty much in every state.
Posted 9/25/2009 8:52 AM (GMT -5)
Thanks CajunGrl, I will e-mail her.
Posted 9/25/2009 7:22 PM (GMT -5)
Dr. F in Maryland, if you have an opportunity to travel to the Washington, DC, area.  Has both local patients and patients from around the country.  Mayo Clinic-trained Doctor of Internal Medicine who has been practicing for 43 years.  I have COMPLETE faith in him.  I assume the forum rules preclude posting full names of doctors, and I can understand.  I just signed up today, so I am a noob to the these forums.  Please PM me if you want details about his practice.  The first physician in 12 years that had any answers for me.  He also discovered a thyroid nodule during a routine physical exam not had been missed by everyone else preceding him (at first believed to be cancerous, but thank God it was not).  Anyway, the man is a genius.  He has given me some hope (however faint it may be now) that in time and with the proper treatment, my symptoms will improve.
Posted 9/25/2009 7:59 PM (GMT -5)
LymeinMD,

Welcome to the forum! I'm glad you found a good doctor. You kind of sound like me with the nodule story except an endo found mine. My previous doctors never found anything and I could feel them in my neck.

Anyway, if you need help with anything, just let me know.
Posted 9/25/2009 8:27 PM (GMT -5)
Lyme in MD, thanks so much for the info. I will keep that in mind. Keep in touch here and let us know how your doing.
Posted 9/25/2009 9:27 PM (GMT -5)
I have LLDr. in Tampa FL. Just email me directly for his info.
Posted 9/25/2009 9:49 PM (GMT -5)
I go to the one in Tampa too. He is a great doctor!
Posted 9/25/2009 10:47 PM (GMT -5)
Thanks for the welcome, gang. BTW, I am Igenex IgG+ for Lyme and babesia, and likely bartonella (determined by a lab in Arizona my Lyme doctor uses). Just found out today from my neurologist that I also have "small fiber peripheral neuropathy" that he believes was caused by a combination of Lyme and EBV (I had a terrible bout with mononucleosis in 1997, which also marked the onset of the widespread chronic soft tissue pain I have today). He said it is as if my body is unintentionally attacking my central nervous system by trying to fight some sort of underlying infection. He mentioned steroids as an affordable treatment initially, but IGIV has produced the best results. Not keen on giving my body more medication on top of Synthroid, Cymbalta, Wellbutrin, Ritalin, Mepron, Azithromycin, Bactrim, and Ambien.

Dr. F told me last year that my treatment would be complicated by the presence of EBV (my EBV titer was over 4000, 40X what is considered borderline "high"). He also said Lyme is an incredibly smart organism, and can find a way to bury and mask itself deep in your immune system while "feasting" off of the host (me). He believes the Lyme was lying "dormant" in my body (I was asymptomatic for years, or at least I thought I was), but made my immune system vulnerable to EBV, which was the triggering mechanism for the Lyme (and chronic muscle and joint pain). The pieces of the puzzle are finally coming together, but the resulting picture is not a pretty one. But I know I am not alone, and at 41, I am not about to throw in the towel just yet.
Posted 9/26/2009 8:34 AM (GMT -5)
Lyme in MD, I also believe that I have small fiber peripheral neuropothy, but I have not gotten that diagnosis yet. Maybe I should see another neuro. it's been 2 !/2 years. I have had numbness, tingling, heaviness, and weakness in my hands and feet since I got sick. Will this ever go away? How does IVIG work? Who does that? I am going to an allergy/ immunologist on thur. to test for viruses, allergies, etc..... I hope it won't be a waste of time. She is 2 1/2 hours away in Agusta at MCG.
Posted 9/26/2009 8:40 AM (GMT -5)
jelainep, I have herd that your doctor uses mostly IV abx. I'm not so sure that i'm ready for that again. Is that true? How would I get a picc line anyway living so far away? Just wondering how that would work? How often would I have to go ? Thanks
Posted 9/26/2009 11:49 AM (GMT -5)
Georgiagirl::::: Maybe you just need to stop eating OKRA and you will be O.k.!!!! he- he!!
Posted 9/26/2009 8:44 PM (GMT -5)
georgiagirl,

I see the same doctor Jelaine does. Yes, he does believe in using IV antibiotics especially in patients with chronic Lyme, but if you don't want to go that route I'm sure you can do oral antibiotics. In my opinion, I think the IV antibiotics puts a big dent in those nasty bacteria and gets you feeling better faster. 1bitten2xshy sees him too and told him she did not want to be on IV so he started her on oral antibiotics. Later, when she wasn't getting better, she got a mid line.

He is a very understanding and caring doctor and does listen. Has a great bedside manner too.

If you are coming from another state, you will have to have a primary physician work with him. He will send all of his instructions to your primary doctor. I live 12 hours away so this is what I had to do. I just saw him on the 8th and I don't go back to see him again until November. It all depends on what he has you taking. I started with Diflucan for a week and now I'm about to start Levaquin for Bartonella for a month, then I will have the picc line inserted.

It's all up to you and who you feel comfortable with. Get lots of opinions from different people seeing different doctors before you make a decision.
Posted 9/26/2009 9:01 PM (GMT -5)
Hello All on this Lyme's and Babesiosis area. I am not sick, but a good friend is, and I've started to do some research on the topic. I came upon this page. A couple of things I looked into. The fairly state of the art treatement appears to be discussed in this article:

The clinical assessment, treatment, and prevention of lyme disease, human granulocytic anaplasmosis, and babesiosis: clinical practice guidelines by the Infectious Diseases Society of America. Clin Infect Dis 2006 Nov 1;43(9):1089-134. PubMed

I am a psychology professor at a university, and they have this journal Clinical Infectous Diseases at the library. I will read about this there on Monday. Also, I deciphered this about Babesiosis:

"Babesiosis" is an intraerythrocytic (in the red blood cell) parasitic infection caused by protozoa (one-celled animals and the smallest of all animals) of the genus Babesia and transmitted through the bite of the Ixodes tick, the same vector responsible for transmission of Lyme disease.

Talk to you all soon. Be well, Charles
Posted 9/26/2009 9:39 PM (GMT -5)
lyme md
I wonder about this doctor F you recommend. Sounds very qualified. What is their approach?
I really want a good LLMD myself. But I am getting IV antibioitics. So I wonder if each doctors approach is much different and how?
Posted 9/26/2009 9:44 PM (GMT -5)
Ticker
I was wondering if you keep a list of the best doctors around the US or if I can email you to get that information that everyone is saying you know about.
I have some family on the west coast that would let me stay with them on and off if needed or such and also though I would really know to know who is who and what they do. Because i am going to have to find an ongoing doctor to support me soon..
Posted 9/26/2009 10:16 PM (GMT -5)
keephope,

You can email Ticker at ko_@bellsouth.net

She will be able to help you. Give her a few days to respond.
Posted 9/26/2009 10:55 PM (GMT -5)
Hey KeepHope,

Feel free to e-mail me at smoothjazzonthewav@gmail.com and I can give you specifics about his practice and approach. I am probably not saying anything here that hasn't been said here before, but each case is truly unique and that's exactly how my Lyme doctor approaches it. He is a Mayo-trained Doctor of Internal Medicine who has been practicing for 43 years, but what is refreshing is that he is an "out of the box" thinker when it comes to diagnosing and treating Lyme. You would think he would be one of these "old school" guys with merely "old school" tactics.

One comment about babesia, which I have been infected with and am being treated for with heavy duty stuff (Mepron, an awful looking and tasting liquid--looks like yellow paint, but I have jokingly referred to it as "Liquid Gold" to my wife because of how costly it is). Babesia is essentially the U.S. version of malaria. Nasty parasite. As most of you probably know, it has a history of being very deadly in Europe where spleen removal is far more common than it is here. But my Lyme doctor is getting increasingly concerned about the emergence of bartonella as a Lyme co-infection, as it seems this is one of the most difficult co-infections to identify and treat. But a new concern for me is the declining health of my kidneys (levels become a "concern"), which undoubtedly have been hit hard by filtering out all of these meds.
Posted 9/26/2009 11:50 PM (GMT -5)

I see the Dr. J. in SC that you refer to - PM me if you want more info.  I get on a plane for 2 hours and go see him -every couple of months - but he is absolutely worth it and wonderful - and thorough!!!  I've been to neurologists before and never had any doc give me such a complete exam as this doctor did!  He really knows what he is doing and I have such complete confidence in him!  And this is after leaving a different LLMD who is closer to my state in the northeast.  I have had bad brain spect scans so I wanted a more aggressive treatment.  I believe I found the right one.  My email is KristianaS2003@yahoo.com.

Kristiana

Posted 9/27/2009 10:31 PM (GMT -5)
Thanks for the sugestions! Keep them coming!
Posted 9/29/2009 7:13 PM (GMT -5)

My daughter saw Dr. C in MO and currently Dr. C in Tampa.  We really liked them both, but thought Tampa was not as "aloof" in dealing with a teenager.  Within 10 days of our appointment she got her PICC line today and is just finishing up the first dose of Rocephin.  She was on orals with MO for over a year and they didn't do anything for her.  We too take a 2 hour plane ride to see him, but it's well worth it as no one around us (Indiana) knows how to treat chronic Lyme.

Interested in how long those who had IV with Tampa Dr. C where on it?  Did you go to orals again after?

Posted 9/29/2009 11:14 PM (GMT -5)
indianaconnie,

Is Dr. C. In Tampa treating your daughter? What do you mean, he wasn't aloof? Do you like him so far?

I can't answer your question about getting back on antibiotics as I haven't even started my picc line yet but I find Dr. C. has different ways in treating Lyme and doesn't give up.
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