posted
I am looking for a LLD doctor in eastern PA or NJ that preferably accepts insurance. I contacted the Lyme disease association and was given the name of 2 LLD,, but one of the physicians is not accepting new patients and the other physician does not accept insurance.
Thank you
Posts: 3 | From PA | Registered: Dec 2016
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TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
It is the rare lyme specialist that accepts insurance.
And, to get someone good, you should expect to travel. At least half of all lyme patients go out of state and many have to fly to see their lyme doc.
Before you put down the big bucks to see a lyme doctor, you need to get lots of input from people who have tried that doctor. So, I suggest you make a new post asking about the doctor you are considering.
You can only give the first letter of his last name and the state he is in. So, for example, Dr. B. in Pa.
Then, others will write to you privately and tell you about him.
You can also check the lyme support groups for information about him. See Support Groups on the left side of the page.
Do a lot of asking before you pick your first doctor because the doc is the KEY to getting rid of this disease. I can't emphasize that enough. The doc is the key.
Lyme docs are free to take any approach they want to treating lyme. So, some use only herbs, some give only one antibiotic at a time (called monotherapy--it is bound to fail), some "do their own thing" (whatever they have found that seems to work best), and a few follow the Burrascano protocol which is the most successful lyme treatment protocol in the world.
With this disease, it really pays to become an educated patient. So read and reread the Burrascano Lyme Treatment Guidelines.
You will see that this is a high-dose, combinations of antibiotics protocol. When Dr. Burrascano was still treating, they came from all over the world to be seen by him.
If you want the Burrascano protocol, I can give you the name of a doc near Washington, D.C. who treats that way. You would be in good hands with him.
He does NOT take insurance. He will do telephone or Skype appointments after the first in person appointment, so you would only have to travel to see him once every 3 months.
Most people new to lyme do not make a very good choice for their first lyme doctor. Then, when they educate themselves and evaluate how they are being treated, they realize their mistake and start looking for another doctor.
The cost of the first appointment is very high because the doc spends at least an hour with you at the first appointment.
So, make a wise choice of doctors and you will not have to keep paying the high cost of the first appointment over and over again.
I don't know which lyme disease association gave you the doctor's name, but often they give you the name of the doc nearest to you. It doesn't mean the doc is really good, just that he is nearest to you. So, you really must do a lot of asking around about the doctor.
Welcome to LymeNet! We will help you here all we can.
Posts: 9931 | From Maryland | Registered: Dec 2007
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posted
Thank you for the information and the warm welcome.
I agree that selecting a quality physician is the most important aspect of getting treated for Lyme disease, and I have no problem paying for a doctor who would be effective in helping me.
My problem, is that I do not know if I have Lyme or not. I have extreme fatigue, numbness, tingling, clumsiness and urinary problems (cannot hold my urine.)
I went to my primary care physician who ran blood work and these tests came back abnormal.
Platelets 484 normal 150-379 high
Iron (Ferritin) 9 normal 15-150 low
Vitamin D 20.2 normal 30- 100 low
Hemaglobin a1c 6.3 normal 4.8-5.6 high
LDL Cholesterol 100 normal 0-99 high
Also my systolic blood pressure has been high around 150-160 diastolic is normal.
Western blot only IGM P39 came up positive High levels.
I was sent for a brain Mri which came back with diffuse high t2 signal abnormality within the globes pallidus. No high FLAIR signal within the globes pallidus.
Signal on T1 slightly hypointense. Remainder of brain parenchyma is normal. No periventriular white matter lesions to suggest a demyelinating process.
Impression: The findings may represent an unusual manifestation of dilated virchow robin spaces. The signal intensity does follow that of fluid on other pulse sequences.
Based on my blood work and MRI my physician has referred me to a neurologist. He said that I definitely do not have Lyme because only one band came up positive and his thinking is that I may possibly have MS.
In doing research I came across how Lyme and MS mimic each other. Based on my symptoms and how I feel, I believe that I may have Lyme and not MS.
I realize that I need a better lab like Igenex to do my testing for lyme. My results were thru Lab Corp.
I feel that I am at a crossroads. If I continue with a neurologist I am sure that I will have to undergo more testing like an EEG, spinal tap etc.
Just as if I continue on with a Lyme literate doctor I will need better blood work and possibly other tests.
The reason that I asked about a LLD that accepts insurance, was that I was trying to avoid paying thousands of dollars only to be told that I don't have Lyme and then have to continue on with a neurologist.
I was given three names by the Lyme foundation. Dr R in PA who is not accepting new patients Dr B in PA Dr G in NJ mixed reviews?
If anyone has any advice for me I would appreciate it. I am so confused right now and I am trying to make the next correct step.
Posts: 3 | From PA | Registered: Dec 2016
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posted
Welcome to Lymenet! Poster "TF" gave you some very good suggestions and information.
PM sent with some information.
I would get evaluated by a LLMD (Lyme-literate doctor) to find out what is going on. Non LLMDs have no clue about this horrible disease!
Lyme Disease is a clinical diagnosis made by a Lyme-literate doctor (LLMD) based on medical history, symptoms, test results, etc. You should be tested through IGeneX Labs in Palo Alto, CA. They specialize in tick-borne diseases.
Btw - my son had one band positive on the unreliable ELISA test, but several more on the IgeneX one. He has had Lyme for sixteen years now. I was told by one of the top LLMDs that one band is enough to have Lyme.
Posts: 8981 | From Illinois | Registered: May 2006
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TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
My strong advice to you is to go to the lyme specialist. You should pursue lyme first because of the Western Blot result that you got.
Band 39 is specific only to lyme disease. So, to get a positive there means you have lyme. See this quote:
"39: Unknown what this antigen is, but based on research at the National Institute of Health (NIH), other Borrelia (such as Borrelia recurrentis that causes relapsing fever), do not even have the genetics to code for the 39 kDa antigen, much less produce it. It is the most specific antibody for borreliosis of all."
This quote is from a lyme specialist. He explains the Western Blot for the layman here:
The post is called Western Blot explanation. It is always at the top of Medical Questions forum under the title "Important Info on Lyme and Cos."
Once you read this complete explanation, you will understand why you MUST have lyme to get this result.
Burrascano also says that if a person has band 39 on the Western Blot, then he has lyme. See this quote:
"Western blots are reported by showing which bands are reactive. 41KD bands appear the earliest but can cross react with other spirochetes. The 18KD, 23-25KD (Osp C), 31KD (Osp A), 34KD (Osp B), 37KD, 39KD, 83KD and the 93KD bands are the species-specific ones, but appear later or may not appear at all. You should see at least the 41KD and one of the specific bands. 55KD, 60KD, 66KD, and 73KD are nonspecific and nondiagnostic." (page 7)
If your test was done at Quest or LabCorp, that is why you didn't have more positive bands. These labs don't do a very good job at lyme Western Blots.
Before I got educated, I went to the neurologist as my primary recommended. I went through the spinal tap and other neurological tests (MRI of brain, etc.). When the tap was negative for lyme, the doc treated me as a mental patient.
This is the common story. So, pursue lyme and if a really good lyme specialist says that you do NOT have lyme (which is not going to happen), then and only then go to the neurologist.
I don't know if you know it or not, but neurologists follow the Infectious Diseases Society stand that lyme is RARE (meaning VERY rare) and EASILY cured with 2 weeks or 28 days of antibiotics. So, the neurologist will do all his tests and then treat you for MS or as a crazy person. We have all gone through this.
All the lyme specialist will do is interview you paying attention to your many symptoms, look at your Western Blot test, and give you a trial course of antibiotics to see what happens.
The course of meds will tell the tale. Then, you will have your answer.
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. The entire clinical picture must be taken into account, including a search for concurrent conditions and alternate diagnoses, and other reasons for some of the presenting complaints... . .
Consideration should be given to tick exposure, rashes (even atypical ones), evolution of typical symptoms in a previously asymptomatic individual, and results of tests for tick-borne pathogens. Another very important factor is response to treatment- presence or absence of Jarisch Herxheimer-like reactions, the classic four-week cycle of waxing and waning of symptoms, and improvement with therapy." (page 7)
How you respond to antibiotics for lyme is a "very important factor" in making the diagnosis as the last sentence of the quote above tells you. This is still how lyme must be diagnosed, even in the year 2016!
So, unfortunately, since lyme is not easy to diagnose, you need to get to a very good lyme doctor so that the opinion you get from him is more likely to be correct.
Everyone who is just starting out needs to know this.
Regarding the docs you are mentioning, I would say that you would be much better off going to the lyme doc I recommend (near D.C.) than any of the docs you have named.
I could give you patient reports on the docs you are considering. I have many patient reports, so I can tell you that you definitely don't want Dr. G.
The doc I highly recommend will do appropriate testing at the first appointment (Western Blot and tests for coinfections also) and will also look at your blood under a microscope (very rare) and tell you in a few weeks what his finding are.
You only have to come to the office once every 3 months. You can do telephone or Skype appointments the other months if you don't want to travel.
People from upstate NY, Ohio, Pittsburgh, Ontario, New Mexico, Texas, Florida, etc. are traveling to see him.
His price is not as high as Dr. G (she is VERY expensive) and follow up appointments are very reasonable.
Let me know if you want the name. And, if you write to me privately with the full name of Dr. B I can tell you if I have any info on him.
To send a private message, just click on the envelope icon above my post. We can use doctors' names in private messages.
Glad you found LymeNet. Now, you can avoid a lot of unnecessary and dangerous, expensive tests. Wish I knew then what I know now! I stick around LymeNet just to help folks like you.
I got rid of lyme, babesiosis, and bartonella over 11 years ago by going to a doctor who followed the Burrascano protocol.
I am still totally symptom free and I have the same brain and life I had before lyme disease. It took me at least 10 years to get my lyme diagnosis. I will never forget those 10 LONG years going from doctor to doctor. Hoping I can spare you any more searching.
You would be in good hand with the doc I am recommending.
p.s. With an a1c of 6.3, you are a diabetic. If you follow the Burrascano diet, it will be a perfect diet for a diabetic. See pages 34-35. It is the anti-yeast diet.
When you are on high-dose combinations of antibiotics as Burrascano recommends, eating sugars will cause yeast (thrush)/candida. Hence, the requirement to eat a very low carb diet when treating lyme and coinfections.
Keep asking questions here. Read the Burrascano list of supplements.Starts on page 28. Take vitamin D to treat your low D. You may want to take an iron supplement for your low iron. Take magnesium definitely. Ask the lyme doctor about the high platelets. He may be able to explain what is going on with you there.
Nobody gets just lyme. So, you most likely have babesiosis and bartonella also. Everyone in our area (Maryland, Pa, Va.) gets all 3. It is the most common lyme presentation nationwide. These ticks commonly carry all these dieases.
Study the Burrascano Guidelines. Then, you will be better able to understand what the lyme doc is telling you and what he is doing. Plus, you will be better able to help yourself.
With this disease, there is no substitute for an educated patient.
posted
I'm looking for LLMD who treats adolescents in NJ or Philly area. Appreciate any recommendations.
Posts: 6 | From pa-nj | Registered: Jan 2017
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Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
Francot & Kchand,
If you go to www.MarylandLyme.org and look at the menu on your left you will see DOCTOR REFERRALS.
You can find Lyme treating health care professionals there, listed by state. It also has links to help you find alternative doctors, chiropractors, specialists in Morgellons and MTHFR.
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 good labs, links to find a naturopathic doctor, acupuncture and oriental medicine doctors too.
Also, here is a "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.
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/
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