wow, i dont know what is harder, dealing with being ill or finding a dr.
im in nj, and the specialist i had been seeing, well, i have given up on.
i only get acknowledged if my tests show positive, even though i tell them how horrid i feel.
i have had lyme and 3 co infections and epstein barr flare ups.
i am hitting a low again, and after over 6 years of this, just like i am sure you all feel, i want my life back.
it seems though no one can hand out any info on decent doctors, and i find this highly frustrating since i had been seeing one, who other lyme pages recommended, and after much money spent on visits, i get no lead way.
it seems from reading other posts that nj and nyc really dont have anyone that comes recommended.
i am willing to travel, i can do ct, pa, mass.. please, someone give me some names on doctors who help!
i dont want a link to other pages, or message boards, i just want names... of actual doctors... who can actually help... i rescue and rehab animals in my spare time, and i need my health back for them.
ive been stuck in bed for a week now with horrid fatigue and other issues. i feel my relapse getting stronger, so please please please someone share some information!
[ 06-24-2016, 10:46 AM: Message edited by: hufflepuff ]
Posted by TF (Member # 14183) on :
The doctor that I recommend is outside of Washington, D.C. Let me know if you want the name.
There is no wait to see him.
You would only have to appear in person at his office once every 3 months. The other months he will do telephone or Skype appointments.
Also, many on LymeNet cannot read your post because it is one very long paragraph. To make it more readable for their eyes (lyme affects their eyes), break up your post into about 4 paragraphs--2 sentences or less per paragraph.
To break it up, click on the paper and pencil icon above your post. Then, you can edit it to add space.
Welcome to LymeNet, we will help you here all we can.
I do NOT recommend the NJ lyme doctors or the Philly or NYC ones. I don't know enough about CT doctors, so I can't help you there. But, I know Maryland!
I was cured of lyme, babesiosis, and bartonella over 10 years ago by going to a doctor who followed the Burrascano protocol. AT least 5 of my friends have been cured this way also. So, that is the protocol I believe in.
If you do not have positive lyme tests, many doctors do not have the courage to treat you. It is very sad. But, I believe that the doc that I recommend has the courage. He will also test you for coinfections. You could get some positives on those tests.
If you had positive tests in the past, that is likely enough for you to get treated here.
Posted by hopingandpraying (Member # 9256) on :
Welcome to Lymenet! PM sent for MD & PA.
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.
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.
[ 07-25-2016, 05:50 PM: Message edited by: hopingandpraying ]
Posted by hufflepuff (Member # 48225) on :
hi and thank you so much for replying.
the specialist i no longer want to see was an LLMD! And other lyme pages have said dr listed for my area.
Thus my heightened frustration.
[ 06-24-2016, 11:44 AM: Message edited by: hufflepuff ]
Posted by me (Member # 45475) on :
Sending you private message with LLMD recommendation.
Posted by TF (Member # 14183) on :
huffle, that is why you have to get personal recommendations for any lyme specialist you are considering.
You have to ask around a lot to find out what the doctor is like. You can't just pick a person from a list.
Some doctors "go bad" over time, some were no good to begin with, some are on lists because someone who knows nothing just was happy to not be treated like a mental case by said doctor.
So, do your homework before you pick a doctor. Ask for lots of patient input and evaluate how much these patients know. Someone who has seen a number of lyme doctors and knows how to tell a top notch doctor is your best source of information.
Posted by Lymetoo (Member # 743) on :
TF is correct!
Posted by hufflepuff (Member # 48225) on :
I appreciate your input, but that is what I am trying to do by posting on this forum... Get some personal references. I am well aware you can't pick any doctor blindly.
It's been very difficult to get some referrals.
Posted by TF (Member # 14183) on :
Contact lyme support groups near the doctors you are considering. See Support Groups on the left side of the page. Contact as many as possible.
Also, post on Seeking a Doctor asking for input on an individual doctor. Give only their first letter of their last name and the state they are in. Example: Dr. S in Maryland.
Make the title of the post Input on Dr. S. in Maryland.
It is not simple, but if you do enough of these types of efforts, you can find out about different doctors.
The easiest thing is to go to the doctor I recommend. I know who is good and I keep up with who has gone bad. I have over 6,000 emails from lyme patients, many talking about their doctors. So, that is how I get my information on who is good IN MY AREA OF THE COUNTRY.
People who give out lists of doctors for every state in the U.S. generally do NOT have much patient input on the doctors they list. They just know they treat or treated lyme. So, lists are not the best way to go. The doc could be retired, dead, no longer treating properly, etc.
We cannot respond to a general post like the one you posted here:
![[Frown]](frown.gif)