I recently was diagnosed with Lyme Disease, all the necessary bands lit up on my WB test -- even for CDC standards. I can't find a doctor who will treat Lyme who takes insurance or vice versa. I have attended the support groups and wrote to lyme sites. I've called about a dozen docs / RNs / PAs within a 2-hour radius who are on their lyme literate lists but still looking for someone closer. Any suggestions would be more than welcome.
SEE "TF's" REPLY ON THE ABOVE LINK. PERFECT EXPLANATION!!!
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96223 | From Texas | Registered: Feb 2001
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TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
My recommendation for you is that if you want to get rid of this horrendous disease, get the very best lyme doctor you can afford.
Do not make location or insurance the criteria. If you do, you will likely never get well.
If you want the names of some great lyme doctors in Maryland and D.C., let me know. They have gotten rid of lyme disease for people I know. You generally see the lyme doctor monthly. The D.C. doc will do telephone appointments after the first in-person appointment. That saves you on travel.
This is what I learned after over 10 years around this disease: Many doctors treat lyme disease, but only a FEW know enough to get rid of it for a person.
I know a few such doctors.
I had undiagnosed lyme disease (plus babesiosis and bartonella) for at least 10 years before a doctor figured out what I had. Still, I eventually found a lyme doctor who cured me. It has been 8 years since I completed my treatment and I am still symptom-free, living a normal life.
That is what I desire for all lyme sufferers.
If you have not yet read and studied the Burrascano Lyme Treatment Guidelines, I strongly suggest that you do so. This document will teach you about the disease that you have and it will tell you what good lyme treatment looks like.
Before I took this document seriously, I wasted 2 years taking antibiotics with a doc who didn't know enough to get me well. Two wasted years! This is a very common story among lyme patients. This doc was local and he took insurance and a lyme support group recommended him to me.
Don't spend years trying to get well. Get to a top notch doctor and get rid of this disease and get on with your life.
A great lyme doctor will NOT take insurance (VERY few exceptions) and will have a long wait time to get in. Word travels fast in this community. Folks flock to the doctors who have success.
Ask around a lot before you spend big bucks on a lyme doctor. I can give you patient reports on many of the lyme doctors here on the east coast.
I wish you the best. The doctor learning curve can be tough and most people don't make a good first choice. We will help you here as much as we can.
Posts: 9931 | From Maryland | Registered: Dec 2007
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posted
Lymetoo and TF, thank you both for your quick responses. I am interested in every doctor recommended and will cash in my 401K to pay for this on my own. I want to do whatever it takes and do it right. So any docs you send my way are more than appreciated. I am calling them all, weighing the factors. I need to get someone within a couple weeks because my initial 30 days of Doxy will run out in two weeks. It was given to me by the ortho when he saw my knee was the size of a mellon. Thank you! SH
Posts: 83 | From Sarasota, Fla | Registered: Apr 2013
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Please break up your posts into 2-3 sentence paragraphs, as there are people on Lymenet who cannot read large blocks of text due to neurological problems from Lyme. Thanks.
Posts: 8982 | From Illinois | Registered: May 2006
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TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
I sent you a couple of names that would be the best based on your location.
I suggest you go to a walk-in clinic for doxy for your knee. You will have to not mention that you were already given some doxy by another doctor. Go to more than one walk-in. This way, you may be able to get enough doxy until you can get in with a good lyme doctor. That will take at least 2 months, being optimistic.
The other choice is to go to a lyme doc who is low on the totem pole and get treated just until you can get in with the doc you really want. People have to do that all the time. You work your way up to the best doctors.
Hopefully lyme support groups can give you names of such docs in your area. See Support Groups on the left side of this page.
Take very seriously the warning about staying out of the sun while on doxy. Sun screen will not stop the chemical burn you get if you go in the sun while on doxy.
People have to wear gloves while driving because the sun will burn the hands through the windshield. The burn is so awful that nasty isn't a good enough word for it. You don't get red. You get little bumps and feel like your hands are in a blowtorch.
Also, you MUST take doxy in the middle of a full meal or you will have bad reflux, indigestion, hearburn, etc. which can become vomiting. Eat half a meal, take the pill, and eat the other half. That is what the lyme docs recommend.
Also, there are foods you have to avoid while on doxy. Take all this seriously so the doxy will work the best for you. It is all on the package insert.
Lyme docs avoid giving doxy in the summer due to the chemical burn. But, until you get to such a doctor, that is what you will be given.
posted
Thank you all for the tips and advice. It's much appreciated as a newbie.
You mention staying out of the sun on Doxy, but is that true for the sauna, too? I want to do everything to detox but don't know if I should do the sauna.
My Doxy instructions say to take at least an hour after my last meal and two hours before eating, so I've been taking it on an empty stomach. If taking it with food is okay, I'm all for that!
I was able to get in with a highly recommended (by my state's lyme group) LLMD who's a member of ILADS on June 7th, so that means another month on the Doxy until I see him, I guess.
From what I'm reading, though, I'm just chasing the spirochetes into hiding so I'm worried that 2 months on doxy without doing anything to attack the biofilm / cysts and co-infectors is going to make it harder to treat in the long run.
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