posted
I live in Romney, WV. Just West of Winchester VA. Looking for a LLMD in my area. Thank you. I have Post Treat Lyme Disease. Initial Doxycycline did not work, in fact made the follow on Western Blot results worse. Not sure where to turn at this point. I'm considering Dr R Vital Plan approach.
-------------------- Steven Martin Posts: 1 | From Romney, WV | Registered: Jan 2017
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TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
Hi Steven. So sorry the conventional medical approach to treating your case of lyme disease didn't work. It didn't work for me either.
Please know that there are 2 approaches to treating lyme disease: the short-term doxy treatment that you had, and the long-term treatment until all symptoms are gone approach.
On Lymenet, we all believe that lyme should be treated until the patient is symptom free, even if that takes 2 years, for example.
So, hopefully, you will now leave the conventional doctors and travel to see a true lyme specialist. This is a doctor who generally had lyme himself and so he realizes that lyme is not easily cured.
Such doctors often have medical practices that treat only lyme disease 100% of the time. This causes them to develop a lot of expertise in this disease. That is what you need because lyme is an extremely complex disease (actually, a number of diseases) and it is quite difficult to cure.
Lyme specialists are few and far between, so you have to be willing to travel to them. For example, I don't know any in your area. Some states have none whatsoever.
So, if you are willing to travel to see a very good lyme specialist near Washington, D.C. let me know and I will send you the name.
You only have to see the doc in person once every 3 months. The other months you can do telephone or skype appointments.
Most good lyme specialists have long wait lists--like 3 to 6 months. And, the top lyme docs are not even taking new patients. This is because MANY doctors treat lyme disease, but very few know enough to cure a person of it. So, people all flock to the good doctors.
Many people have to fly to see their doctor.
The doc I am recommending can usually see you quickly.
Also, the doxy didn't make your WB results worse. Rather, the antibiotic helped your body recognize the lyme disease and begin to make more antibodies to lyme. The WB test is testing for antibodies. So, by taking some lyme treatment, it is common to then get a more positive lyme test.
I strongly urge you to educate yourself about this disease. The best document you can read is the Burrascano Lyme Treatment Guidelines found here:
Burrascano was the original lyme disease pioneer. He also had lyme himself. People came from all over the world to see him when he was still practicing. He was the most successful lyme doctor on the planet. He wrote these Guidelines and distributed them free to U.S. doctors to teach them what he learned about this horrendous disease.
Welcome to LymeNet! We will help you here all we can. Let me know if you want the name of the lyme doc I recommend.
Posts: 9931 | From Maryland | Registered: Dec 2007
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You should write "in WV or VA" in your title so people will know specifically where you are looking. Click the pencil/paper icon, make your changes, then click "Edit Post".
You need to be evaluated and treated by a Lyme-literate doctor (LLMD). Non LLMDs have no clue about this horrible disease or its complex treatment!
A LLMD is one who has treated Lyme disease and the co-infections which come with it for many years and has gotten patients well. A good one will follow Dr. B's Guidelines, the "gold standard" for Lyme treatment.
Unfortunately, LLMDs are far and few between. You need to go where they are. None in WV.
Also most LLMDs do not accept insurance due to the politics surrounding this horrible disease. Read poster TF's explanation, "Why Lyme Doctors Don't Take Insurance":
Btw - I know you are new to Lymenet, but 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.
To do this click the pencil/paper icon, make your changes, then click "Edit Post". Thanks.
Also, you should not use your real name (if in fact you are), because this is a public forum with all sorts of people on it. Read this link about it:
Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
I just love Steve Martin! Too funny!
If you go to www.MarylandLyme.org and look at the menu on your left you will see DOCTOR REFERRALS. Or, look under the daffy dills for the link.
You can find Lyme treating health care professionals there, listed by state. Some may take insurance, some don't.
You will see some are listed as having phone or Skype follow up appointments which may help you.
The Lyme Doc site also has listings for alternative doctors, good labs and other information.
Here is the "Help For You" page that, if needed, may help with the cost of labs, provide free or reduced priced medications, grants to assist those under 25 with Lyme related costs, free cell phones and more.
I am looking for a LLMD close by. I'm originally from Mass and that is most likely where I got the Lyme. I have been to a ID dr and I got 2 weeks of Doxy. Said to me that's all he can do for me. Doesn't believe I have Lyme, etc. So I'm stuck. I only tested pos for IGM 23 and ID is using CDC guidelines. I'm not better after the 2 weeks. I need to see someone who understands.
Posts: 2 | From North Port, FL | Registered: Jan 2017
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posted
Hi Jess - you need to make your own post so people see FL in the heading. I'm sending you a private message.
Posts: 13116 | From San Francisco | Registered: May 2006
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Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
Hey Jess,
Go to www.FloridaLyme.org and you'll see DOCTOR REFERRAL in the menu to your left.
That will give you names and contact information for Lyme treating health care professionals.
The Lyme Disease Network is a non-profit organization funded by individual donations. If you would like to support the Network and the LymeNet system of Web services, please send your donations to:
The
Lyme Disease Network of New Jersey 907 Pebble Creek Court,
Pennington,
NJ08534USA http://www.lymenet.org/
UBBFriend: Email this page to someone!
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