posted
Hi, I am seeking and LLMD for treatment in Lyme. I am in New York. (NYC).
My primary care physician has been very slow to accept Lyme as a diagnosis but my symptoms include terrible headaches for 2 months, Bells Palsey in face (5 days), Sharp stabbing pain in left side of neck that has kept me awake ( 5 days) Edge of tongue cannot taste / certain foods taste different (1 week) Night sweats (2.5 months 4-5 nights per week) Mild fever, in particular in evenings (100-102) (2.5 months) Chills, have felt cold even in heat of summer Skin and scalp sensitive to touch Dry mouth Constant ringing in ears (typically mild) Difficulty hearing normal Noticed that I zig zag a bit when trying to walk
Posts: 1 | From Brooklyn NY | Registered: Oct 2016
| IP: Logged |
TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
Yes, that list certainly sounds like lyme. Did you get tested for lyme? In Maryland, anyone with a diagnosis of Bells Palsy is REQUIRED by state law to be tested for lyme.
The night sweats indicate that you also have babesiosis.
And, you are having a lot of symptoms that suggest that lyme disease is affecting your nervous system. That is typical, but you don't want to let this go as it will only progress including affecting the brain.
So, some lose hearing, sight (temporarily), memory, etc. Many get insomnia and so forth.
Sorry to tell you but there is no lyme specialist that I recommend in NYC.
There are some there, but they are EXTREMELY expensive and their treatments are not that good. So, I hope you will be willing to travel to see someone good and as a bonus, it won't cost you as much for the doctor visits.
You may not be aware but lyme specialists are few and far between, and GOOD lyme specialists are rare--probably less than 10 on the east coast.
So, at least half of all lyme patients have to go out of state for their care.
Be willing to travel in order to have the best chance of getting rid of this difficult to cure disease. Tell us the states you are willing to travel to. Nobody good in New Jersey, so forget that state.
If you are willing to travel to the Washington, D.C. area, there is a good doctor here who can see you quickly--within a day or 2. Let me know if you want the name. You only have to come in person once every 3 months. The other 2 months, he will do Skype or telephone appointments with you. (Good lyme docs see/talk to their patients monthly.)
The best lyme doctors often have extremely long waiting lists or are not taking new patients at all. Others from NY are coming to the doc I recommend, and they are happy they decided to do so.
They also come from Florida, Texas, Canada, etc. So, as you can see, many are flying to see their doctor.
Contact your nearby lyme support groups to get names of who is getting people well in your area of the country. See Support Groups on the left side of the page.
And, educate yourself on this disease. This is extremely important. I suggest you start with the Burrascano Lyme Treatment Guidelines found here:
They are permanently at the top of Medical Questions section.
There is no substitute for an educated patient when it comes to this disease which is really many diseases.
If you learn something about lyme, then you will be better able to understand what the lyme doctor is telling you and why he is treating you the way he is.
Also, with some education, you will eventually be able to tell good lyme treatment from lousy lyme treatment. You have to be able to figure out if your lyme doctor knows enough to get you well. If he doesn't, it is time to move on.
So, those who study as much as they can do a much better job of finding a good doctor quickly and not wasting time and money trying to get well. There is definitely a lyme doctor learning curve!
Before I educated myself, I wasted 2 years with a doc who didn't know enough to cure me. 2 wasted years taking antibiotics that would never get me well.
You see, many doctors treat lyme disease, but few, very few, know enough to get rid of this horrendous disease for a person.
Once I switched to a Burrascano type doctor, I got well in 8 months (symptom free) and was finished with treatment in 13 months. That was over 11 years ago and I am still well and enjoying my life. I have the same life I had before lyme disease.
I stick around LymeNet just to help point people to the good doctors so they don't have to waste so much time getting to wellness.
At the first appointment, a good lyme doctor will test you for all the lyme coinfections, and he will send your blood to a lab that specializes in tick-borne diseases, not Quest or LabCorp.
So, as you can see, there is much to learn.
Here are a few points from Dr. B's guidelines:
You must attack both the regular and cyst (or other) form of lyme simultaneously--requires at least 2 different antibiotics taken together to do so.
You must test the patient for all co-infections and other physical ailments (thyroid, etc.) and treat everything the person has.
You must treat all co-infections the patient has (including babesiosis, bartonella, ehrlichia, mycoplasma, etc.) or the patient will not get well.
You must use Igenex for most of these tests--they are a tick-borne disease speciality lab in Calif.
You must use very high doses of antibiotics to kill the diseases (batericidal doses).
You must give the patient supplements, probiotics, herbs such as artimesinin if babesiosis is suspected, and require adherence to rules such as low carb diet, no alcohol, no smoking, rest, and exercise as the patient is able to do it.
You must treat at least 2 months after all symptoms have disappeared (if sick at least 1 year).
These are just a few of the important points you will see in the guidelines. If possible, you want a doc who does EVERYTHING Burrascano says to do. He treated lyme for over 25 years, and compiled what he learned so that other docs could benefit from it. He was the most successful lyme doctor on the planet. They came from every country in the world to be treated by him.
Welcome to LymeNet! We will help you here all we can.
p.s. See this recent LymeNet post regarding docs in NYC:
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.
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":
When you call for an appointment, ask if there are any cancellations or a waiting list. Patients have been able to get in sooner by doing this.
At least half of all Lyme patients travel out of state for their care. The doctor is the key to the diagnosis and for getting rid of this horrendous disease. I can't emphasize that enough - the doctor is the key.
The top LLMD, Dr. H, has written a book entitled, "Why Can't I Get Better?". It is an excellent source of information.
Also read "Cure Unknown" by Pamela Weintraub. Check your local library or buy it used on Amazon.
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 that, click the pencil/paper icon, make your changes, then click "Edit Post". Thanks.
Posts: 8981 | From Illinois | Registered: May 2006
| IP: Logged |
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!
Printer-friendly view of this topic