I am in need of a LLMD that can help my 14yo. She has been sick since September and we thought she had mono but turns out she never had it. So she had bloodwork a few times, western blot came back with "present abnormal" on 5 different Igg and 1 Igm and primary dr never even told me about the results I had to find them on my own after asking for copy of bw. We've seen a neurologist who tested her for tick borne illnesses and she tested positive for Ehrlichia. She sent us to an ID dr who said he was convinced she did not have Ehrlichia. But wanted to run one more blood test to confirm. He also said that there was no way she was positive for lymes and the "present abnormal" were false positives. we are desperate to find a dr that will look at her symptoms and bloodwork and knows that the blood tests are not always accurate. TIA
Posted by hopingandpraying (Member # 9256) on :
Welcome to Lymenet! PM sent for PA, MD & CT.
Stay away from Infectious Disease Doctors (IDSA). They believe one dose of antibiotics is enough and don't believe in chronic Lyme. Patients end up getting sicker.
Here is a link for you to read about "Two Standards of Care":
"There are NO good LLMD's in NJ. NJ is a wasteland of bad docs. I can tell you from years of experience, unless you go with an established doc (of which there are only a few on the east coast) you will get undertreated and continue to relapse.
PLEASE TAKE MY ADVICE. NJ is a bad place for ticks and a bad place for tick doctors."
"The LLMDs in NJ are not very good based on patients' experiences. People start with them then end up going to see other LLMDs out-of-state."
"Over the years, the folks in New Jersey have said that the best Lyme doctors are not there."
"I strongly suggest that you be willing to travel outside of New Jersey to get good treatment."
"There are Lyme doctors in the area you have named, but I don't recommend any of them. To get a good Lyme specialist, you will have to be willing to travel. At least half of all Lyme patients go out of state for their care."
Your dear daughter needs 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.
Posted by Melissanovella (Member # 49931) on :
This is very sad... the reason I joined this site today is to find a Lyme literate doc in NJ. I am from South Jersey, where lyme is rampant. When I got my first doxy prescription filled at the CVS two years ago, she said she had seen the number of scripts for this antibiotic quadruple during that summer. I seriously do not know what to do. I know this might sound a bit off topic, but I am close to completing my doctorate of nursing in informatics... I am truly about to become a nurse practitioner so that I can treat lyme disease... IT IS DESPICABLE that we have to suffer for many years, and be told by so many doctors THAT WE DON'T HAVE LYME DISEASE. My husband had it, both of my neighbors have it (on either side of my house), and we are surrounded by woods and deer literally run through my yard on a daily basis. I tested positive via western blot 2 years ago, got treated and felt better. Last summer found another tick on me, and my doctor gave me one pill (doxy) saying that it is effective when you first find the tick, to only have to take one pill. ???? A year later, I have migratory arthritis, which randomly causes me pain in either my knee(s), pelvis, ribs, ankles, hips, etc. It is especially terrible AFTER I exercise (which I have done 3-4 times per week for years. I am truly at my wits end... and am getting a repeat Western blot (my doc actually thinks its lyme because of the migratory joint pain), but am afraid that it will come back negative. Ok, sorry for taking too much space typing this.... the point I was trying to get to is that SOMEBODY NEEDS TO HELP IN THE NJ AND PA AREAS -- as lyme is endemic here.
Posted by Melissanovella (Member # 49931) on :
This is very sad... the reason I joined this site today is to find a Lyme literate doc in NJ. I am from South Jersey, where lyme is rampant. When I got my first doxy prescription filled at the CVS two years ago, she said she had seen the number of scripts for this antibiotic quadruple during that summer. I seriously do not know what to do. I know this might sound a bit off topic, but I am close to completing my doctorate of nursing in informatics... I am truly about to become a nurse practitioner so that I can treat lyme disease... IT IS DESPICABLE that we have to suffer for many years, and be told by so many doctors THAT WE DON'T HAVE LYME DISEASE. My husband had it, both of my neighbors have it (on either side of my house), and we are surrounded by woods and deer literally run through my yard on a daily basis. I tested positive via western blot 2 years ago, got treated and felt better. Last summer found another tick on me, and my doctor gave me one pill (doxy) saying that it is effective when you first find the tick, to only have to take one pill. ???? A year later, I have migratory arthritis, which randomly causes me pain in either my knee(s), pelvis, ribs, ankles, hips, etc. It is especially terrible AFTER I exercise (which I have done 3-4 times per week for years. I am truly at my wits end... and am getting a repeat Western blot (my doc actually thinks its lyme because of the migratory joint pain), but am afraid that it will come back negative. Ok, sorry for taking too much space typing this.... the point I was trying to get to is that SOMEBODY NEEDS TO HELP IN THE NJ AND PA AREAS -- as lyme is endemic here.
Posted by dbpei (Member # 33574) on :
I just sent you a PM.
Posted by hopingandpraying (Member # 9256) on :
Melissanovella - Welcome to Lymenet!
So sorry you are going through this, but what you have said is the sad and frustrating reality for Lyme patients.
I know you are new to Lymenet, but you should write a new post instead of adding to an existing one because most don't re-read old posts. That way, more people will see it and respond.
Also, you need to break up your posts into 2-3 sentence paragraphs, because 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.
PM sent with names for PA, MD & CT.
Posted by desertwind (Member # 25256) on :
Hello, I live in Morris County NJ and grew up in Bucks County, PA.
I have seen every supposed LLMD in NJ. Finally after many years of sub-standard treatment I finally went to one of the top LLMD 's in the country and have made great stridesite. PM me if you would like more information. DW