TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
There are VERY few good lyme doctors. You have to be willing to travel to see someone good. Period. In many parts of the country, the patient has to fly. And, the best ones will always have a wait. 3 months is considered a short wait for a good doctor. (And, a 1 1/2 hour drive to see a lyme doctor is considered a godsend.)
So, folks often start out with someone "lower on the totem pole" and work their way up to the best docs.
At least half of all lyme patients go out of state for their care.
I can give you the name of a good Maryland lyme doctor near Washington, D.C. who has no wait to get in. Or, I can give you the name of a top notch lyme doctor in D.C. who will give you an appointment in 2 months.
Which do you want or do you want both?
Also, you are not allowed to use doctors' names on the public board, so the names you gave will be deleted. I know both of those doctors. I believe the doctor in Maryland is better than them and the doc in D.C. is MUCH better than them.
Most folks in NJ end up coming to Maryland/D.C. for good care.
You don't have to come in person each month. You only have to appear in person once every 3 months with the good Maryland doctor and once every 6 months with the top notch D.C. doctor. They will do telephone or Skype appointments the other months and problems in between are handled by email or phone.
So, that's the way it is if you want to get better.
Let me know your decision and I will send you the info you want. If you want, I can also give you the patient reports I have on Dr. F. They are NOT good.
Welcome to LymeNet! We will help you here all we can.
Posts: 9931 | From Maryland | Registered: Dec 2007
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posted
Welcome to Lymenet! PM sent for PA, MD, & CT.
Here are some quotes from old posts about NJ:
"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 under-treated 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."
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.
Read the books written by the top LLMD, Dr. H, titled, "Why Can't I Get Better?" and his new one, "How Can I Get Better?". They are an excellent source of information.
Read "Cure Unknown" by Pamela Weintraub. Get it at 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
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Thank you for the information. I will start looking into some of the docs hopingandpraying sent info on.
I am located just outside of New York City...are there any top LLMD's in or around the city?
It looks like Dr. H who wrote "why can't I get better" is about 2 hours from me, but with his new book it is probably difficult to get in to see him.
I tried to contact the support groups I came across in NJ, but it looks like they have disbanded.
I have seen under my skin and also understand why most LLMD's don't take insurance. I am at the point where I need the right tx and would pay anything to feel better.
Even just trying to find a doc that will do the Igenex testing in my area has been unsuccessful.
Also, my husband is pretty disabled so traveling real far becomes a difficult feat for me.
I like that some docs will only require a face to face every 3 or 6 months. That would probably work best for me.
Please send the info on the docs. I need to make a commitment to see someone who can treat me properly...I don't want to feel like this anymore.
Posts: 12 | From NJ | Registered: May 2017
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The top LLMD, Dr. H, is not taking new patients and had a very long waiting list, from what I've been told.
Posts: 8981 | From Illinois | Registered: May 2006
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TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
There is nobody good in NYC. Sorry.
Posts: 9931 | From Maryland | Registered: Dec 2007
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TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
If you want the names of the docs I recommend (only required to come in person once every 6 months and once every 3 months) you MUST write back to me on our private message thread.
Just type in the "Quick Reply" box below my message to you about Dr. F. in NJ and ask for the doctors I recommend.
Once you get used to writing back and forth in the private message system, you will see that it is easy.
I am happy to help you, but I do not have room in my private message mailbox for numerous individual private messages to the same person. Sorry!
Posts: 9931 | From Maryland | Registered: Dec 2007
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posted
ok, thank you. Sorry my brain isn't working right. I have an MRI scheduled for later today. It feels like my brain is damaged.
Posts: 12 | From NJ | Registered: May 2017
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TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
Well, perhaps something will show up on the MRI. When they did an MRI of my brain, I was happy that it showed abnormalities.
Finally, I had some proof of something physical going on.
Lyme causes inflammation in the brain which interferes with blood flow, so the low blood flow makes us feel brain damaged.
Fortunately, when you get good lyme treatment, the inflammation goes away and you have your normal brain back again!
It happened to me, praise God. And, after many years of lyme, it made my girlfriend actually "stupid." Her brain just would not work, or worked so slowly you would have thought she was 90 years old instead of 60.
But, once she got to one of the doctors I recommend, she got her normal brain back again.
I have seen it over and over with my friends. They are so happy to have a normal brain again.
So, do not worry, and post the results of the MRI when you get them.
I had 3 UBOs (unidentified bright objects) in my brain. The report said that they were likely areas of hypoperfusion (low blood flow).
Years later when I happened to need a brain MRI for something else, my brain was totally normal.
So, just put up with this for now and do not be concerned. We will get you to a great lyme doctor who will have you happy in no time.
Posts: 9931 | From Maryland | Registered: Dec 2007
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posted
Thanks TF. Had the MRI last night. It was tough...didn't realize I would get so panicky in a small space, but I did it.
I also had my first ever appointment with a psychiatrist because I have been getting some panic attacks because of all the health issues I have been having.
He was very nice and prescribed valium if I get a panic attack and said I could also try Effexor.
I told him I am not depressed but just want to feel better. He said it sometimes helps calming the neurotransmitters in the brain.
However, I looked up the side effects and am not 100% on board. Do you have any experience in that area?
He also wants me to follow up with a rheumatologist regarding all the autoimmune symptoms.
Posts: 12 | From NJ | Registered: May 2017
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Bartenderbonnie
Frequent Contributor (1K+ posts)
Member # 49177
posted
TF quotes " When they did a MRI of my brain, I was happy that it showed abnormalities."
To the average person, this sounds insane. But to a Lyme sufferer, it makes perfect sense.
The CDC tests are horrible, outdated, and miss more than 74% according to the newest research.
An LLMD is the answer. Good luck rueyroo.
Posts: 2977 | From Florida | Registered: Nov 2016
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posted
Thank you. I finally got through to Dr. H's office and they are not taking new patients and are not adding anyone new to their wait list either. Posts: 12 | From NJ | Registered: May 2017
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posted
The ID docs office the psychiatrist referred me to just said they don't treat chronic lyme Posts: 12 | From NJ | Registered: May 2017
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posted
How about Dr. R in NYC? someone just emailed me from a yahoo lyme group and suggested him?
Are you familiar with him?
Posts: 12 | From NJ | Registered: May 2017
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TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
rueyroo, we all know that about Dr. H. You really need to write back to me privately and get the name of the top doc who IS taking patients.
Be sure you use the private thread on "Dr. F. in NJ."
I don't agree with the valium. When I was having panic attacks from lyme, my doc gave me Xanax. I can also tell you what other lyme docs recommend in their lyme books.
A valium makes sense if a person has to have an MRI (that's what the doc gives my husband since he is claustrophobic), but not for daily use!
Please write to me privately so I can give you names, etc.
Posts: 9931 | From Maryland | Registered: Dec 2007
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TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
Forget the rheumatologist. The psychiatrist doesn't know anything about lyme. He is the last one who should advise you on what kind of doctor to see. You don't have an autoimmune problem.
And, forget Dr. R in NY also.
Posts: 9931 | From Maryland | Registered: Dec 2007
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posted
Rueyroo, Do NOT GO TO Dr. R in NYC. I went to him and had a terrible experience. He does not do any blood work while you are on a ton of antibiotics. Communication is terrible, I think patients are just desperate to see a lyme Dr, so he keep taking new patients but does not follow up. His office is also terrible. Please Listen to TF she will give you the best advice. I am very grateful she put me on the right path with a GREAT Dr.
Posts: 68 | From new york | Registered: Aug 2016
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posted
thanks Lymehope...I am leaning towards the DNP in DC.
She already sent me the new patient application. Interesting it says they use Labcorp, not Igenex.
I just really want to get an Igenex test before I go to anyone, to be sure what I am dealing with, but can't find a doc that will do the testing.
I may just order my own from Igenex and get someone to draw my blood. Hoping I can do that???
Posts: 12 | From NJ | Registered: May 2017
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posted
Hi Rueyroo Yes you Can order the test kit yourself and take it to your Dr. They don't want to do it because it is expensive. She is great. You will be happy you went to her instead of other Drs. and not getting better. All the best.
Posts: 68 | From new york | Registered: Aug 2016
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TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
You still are required to have a doctor sign the order for the tests. AND, Igenex sends the results to the doctor who signed the order, not to you.
So, you have to get a doctor involved either way. Also, it is NOT easy to find a place to draw your blood for Igenex. Quest and LabCorp will not do it in general.
And, you will likely not order the right tests. So, it is best to get a lyme specialist involved in the selection of the tests.
AND, there is no way to be sure what you are dealing with based on tests! No way!
"DIAGNOSTIC HINTS Lyme Borreliosis (LB) is diagnosed clinically, as no currently available test, no matter the source or type, is definitive in ruling in or ruling out infection with these pathogens, or whether these infections are responsible for the patient's symptoms." (p. 7)
No test is totally reliable. Lyme is a clinical diagnosis. That means that a clinician (a medical professional) must make the diagnosis based on the criteria that Burrascano goes on to mention.
Many folks get negative lyme tests but they still have lyme. Tests miss about half of the people with this disease.
The tests do NOT look for the lyme bacteria. Rather, they look to see if your body has made antibodies to lyme. If they see enough antibodies, then you end up with a positive test result.
But, as you can see, the test cannot say you have lyme. All it can say is that you were once exposed to lyme bacteria and your body responded by making antibodies to lyme and these antibodies are still in your blood.
Here is where Burrascano says that:
"When reactive, serologies [meaning blood tests that look for antibodies] indicate exposure only and do not directly indicate whether the spirochete is now currently present." (p. 7)
A Western Blot is a blood test looking for lyme antibodies or other antibodies. Not everyone makes antibodies to lyme because lyme has many tricks to hide from the immune system. Often, in fact, the sickest lyme patients are the ones who get the negative lyme test results.
So, it takes a knowledgeable lyme specialist to diagnose you with lyme. The more expertise the specialist has, the more you can rely on the diagnosis.
Often, the diagnosis is based on your symptoms alone. Then, once you do a trial of lyme medications, if you herx or improve, you know for sure that you definitely have lyme.
So, now you know that the lyme tests are all pretty lousy. So, now you may not want to pay $700 for a complete lyme and coinfection panel from Igenex.
The DNP will often say testing is unnecessary because she will treat the negative result anyway.
If you go to the DNP in DC, you can ask to have Igenex testing. She will sign it for you. She is easy to get along with and will go along with most of what a patient wants to do. She treats you as an equal and does not dictate to you and require you to obey her.
So, unfortunately, you generally have to go to a lyme specialist in order to be diagnosed. Many people want a positive test first, but not everyone gets that.
The lyme support groups may know of a place that will draw your blood for Igenex testing. You could try contacting your local ones.
posted
Thank you...As I mentioned I am struggling with neurological symptoms. I go back to the neurologist for the results of my MRI this Friday.
The take home EEG 2 weeks ago made me feel like I was going to pass out.
I also have Hashimoto's disease which is a thyroid disorder, so there remains the possibility that this can be autoimmune related, which in rare instances can effect the brain.
The more I read, it seems as if all these diseases (including Lyme) and a multitude of other viruses can cause encephalitis (inflammation of the brain) which can cause all the symptoms I am experiencing. Is neurological Lyme a form of encephalitis?
I really want to go to DC but part of me is worried about having an episode while traveling. These episodes seem to come on rapidly and triggers seem to be bright lights, stress and changes in heat.
My husband will go with me, but he uses a wheelchair and we are waiting for his wheelchair to be repaired which may take a few weeks.
In the meantime, I want to be proactive and do something positive to try to support my health/immune system and just wish I had more definitive answers and test results.
Posts: 12 | From NJ | Registered: May 2017
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TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
Yes, lyme gives the patient a mild form of encephalitis. I had it and all of my friends with lyme had it also. I am surrounded by people with lyme disease where I live.
If the doc in D.C. stops taking new patients, then you will have to travel a little farther to the next best doctor in my area.
So, travel will be required either way. But, more travel if you don't get in with the DNP. The other doc requires you to come in person every 3 months.
Also, the DNP DOES order Igenex testing. See the answer to the question: How much will the lab work cost: "Even if you have insurance, the tests we will order from the specialty lab, IGeneX, will need to be paid for up-front by credit card."
I would hate for you to miss the chance to get in with this top notch doc.
Believe me, EVERYBODY wishes they had a definitive answer and test results before going to a lyme specialist, but it rarely works that way. Rather, the patient suspects lyme based on symptoms and then eventually goes to a lyme specialist and nearly 100% of the time the lyme specialist confirms the lyme diagnosis.
This disease is not rare. Rather, it is an epidemic. So, when a person sounds like they have lyme, they generally do.
Posts: 9931 | From Maryland | Registered: Dec 2007
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TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
Also, the DNP always allowed a patient to sign a form saying that they wanted treatment PRIOR to getting the test results back.
If you want such treatment, you could leave your first appointment with her with medications!
The other doctor will do no such thing. So, if you have to go to the other doctor, you will not receive medications for about 1 month after your first appointment.
Posts: 9931 | From Maryland | Registered: Dec 2007
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