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» LymeNet Flash » Questions and Discussion » Seeking a Doctor » HELP FINDING DOCTOR

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Author Topic: HELP FINDING DOCTOR
PISCESGIRL18
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Hello I live in eastern suffolk county, NY and I am looking for a doctor to test and possibly treat my 17 year old daughter for Lyme's disease. Any help would be appreciated. and as soon as possible since she is going off to college soon. thank you
Posts: 4 | From SUFFOLK COUNTY NEW YORK | Registered: Apr 2013  |  IP: Logged | Report this post to a Moderator
hopingandpraying
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The best Lyme-literate pediatrician is Dr. J in CT. When you call to ask for an appointment, ask for cancellations or if they have a waiting list.

PM sent with his contact information.

Check the online state Lyme groups at:
http://health.groups.yahoo.com/group/NewYorklyme

The LI Lyme Association is at:
http://health.groups.yahoo.com/group/L_I_L_A/

Maybe they can help you.

Some more resources for you:
www.lymenet.org/SupportGroups/UnitedStates/NewYork/LILA.shtml
www.lyme-aware.org
www.empirestatelymediseaseassociation.org
www.ilads.org
www.lymediseaseassociation.org

Once you get some names, write a new post in "Seeking a Doctor" to ask for personal references. This way, you will find the right doctor to give the correct treatment.

[ 04-04-2013, 03:43 PM: Message edited by: hopingandpraying ]

Posts: 8824 | From Illinois | Registered: May 2006  |  IP: Logged | Report this post to a Moderator
PISCESGIRL18
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Ok thank you so much - I will look into these. money, travel and insurance are factors so i'm not sure about the CT doctor but I will look into it anyway. thanks.
Posts: 4 | From SUFFOLK COUNTY NEW YORK | Registered: Apr 2013  |  IP: Logged | Report this post to a Moderator
hopingandpraying
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You're very welcome - glad to help.

Most LLMDs do not take insurance because of the politics surrounding this horrible disease and its complex treatment.

Read poster TF's explanation, "Why Lyme Doctors Don't Take Insurance"
http://flash.lymenet.org/scripts/ultimatebb.cgi/topic/2/15615?#000005

Posts: 8824 | From Illinois | Registered: May 2006  |  IP: Logged | Report this post to a Moderator
TF
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Because lyme doctors are so expensive, few and far between, and have long waiting lists, I suggest you try to get your daughter tested for lyme by your primary care doctor using Quest or LabCorp.

Ask for the Western Blot. Do not agree to any other test. The doc likely will want to do the ELISA test and then, if it is positive, will agree to do the Western Blot. Do not agree to that.

The ELISA is wrong at least half the time, so it is a useless test. Some doctors will do the Western Blot without you even stressing that you want it because they know this about the ELISA. Perhaps you can call your doc and get agreement that he will do the Western Blot for you before you make the appointment.

Then, be sure to get a copy of the test result, even if the doc says it is negative. Often a so-called negative test is actually significant according to a lyme doctor. Any positive band on the test can be significant and can be a strong indicator of lyme disease.

Also, to educate yourself on this complex disease, I strongly suggest you read and study the Burrascano Lyme Treatment Guidelines found here:

http://www.ilads.org/lyme_disease/B_guidelines_12_17_08.pdf

The more you understand about this disease, the better you will be able to advocate for your daughter. The Guidelines will also tell you what good lyme treatment looks like.

Be sure to look at the list of symptoms on pages 9-10. These things will all help you come to the conclusion that your daughter most likely has lyme disease. The more sure you are that lyme is a good possibility, the more you can feel confident in spending the time in travel, the money, and the effort of going to a lyme doctor for diagnosis and treatment.

Just know that no test is 100% accurate, so even if the lyme test comes back negative, she could easily still have lyme. A lyme doctor knows this and knows he must go by symptoms and medical history to make the lyme diagnosis.

You will read all about this in Burrascano. See, for example, page 7, that says none of the tests are definitive. However, if you get a positive lyme test, you can be pretty sure that this is the diagnosis. It is the negative result that is often incorrect.

Here is a quote about the ELISA being useless:

"The suggestion that two-tiered testing, utilizing an ELISA as a screening tool, followed, if positive, by a confirmatory western blot, is illogical in this illness. The ELISA is not sensitive enough to serve as an adequate screen, and there are many patients with Lyme who test negative by ELISA yet have fully diagnostic western blots. I therefore recommend against using the ELISA. Order IgM and IgG western blots- but be aware that in late disease there may be repeatedly peaking IgM's and therefore a reactive IgM may not differentiate early from late disease, but it does suggest an active infection. When late cases of LB are seronegative, 36% will transiently become seropositive at the completion of successful therapy." (page 7)

If you don't already know, lyme is embroiled in a major medical controversy and has been for nearly 30 years. One camp (the majority of doctors--all mis-educated by the Infectious Diseases Society of America) believes that lyme is RARE and is EASILY treated.

But, the doctors who have had lyme themselves and become lyme doctors know that the exact opposite is true. Lyme is worse than an epidemic and is extremely difficult to cure.

To learn about this controversy, you can watch a video made by a Boston TV station a few years ago. It is here:

http://www.youtube.com/watch?v=s3_JwDPqGAg&feature=youtu.be

Welcome to LymeNet. You have come to the right place to find a doctor who can treat your daughter for lyme disease. We will help you all we can.

Posts: 9931 | From Maryland | Registered: Dec 2007  |  IP: Logged | Report this post to a Moderator
PISCESGIRL18
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Wow! Thank you so much for all of this information. She was diagnosed with Costochondritis (severe inflammation of the rib cage cartilage) four years ago and that may very well be the diagnosis and what we have been researching and treating her for, but lately i have this nagging feeling that maybe we are all missing something, maybe the symptoms are really the symptoms of Lyme. I don't know. I thank you for all of your wealth of information and I wish you only the best of health. Thanks.
Posts: 4 | From SUFFOLK COUNTY NEW YORK | Registered: Apr 2013  |  IP: Logged | Report this post to a Moderator
TF
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Yes, people with lyme can be diagnosed with costrochondritis. But, why would she have costrochondritis?

Lyme can be the cause. Lyme causes severe inflammation. It is this that causes pain in the ribcage, the joints, everywhere.

So, good for you for thinking lyme. You really want to find the underlying cause.

If she has other symptoms, especially in other bodily systems (eye, ear, digestive, breathing, muscular, etc.) or brain/memory type symptoms, then you will know that this is actually lyme disease.

Please see that Burrascano says over and over that if lyme is a possibility, the patient should NOT take any immune suppressant medications (steroids, prednisone, etc.). If she has lyme and takes these types of medication, they stop the immune system from fighting the lyme at all and it can go wild, get deeply entrenched, and cause permanent damage.

So, you will have to question every med that she is given to treat her condition.

See these quotes from Burrascano:

"More severe illness also results from other causes of weakened defenses, such as from severe stress, immunosuppressant medications, and severe intercurrent illnesses. This is why steroids and other immunosuppressive medications are absolutely contraindicated in Lyme. This also includes intraarticular steroids." (page 4)

"More evidence has accumulated indicating the severe detrimental effects of the concurrent use of immunosuppressants including steroids in the patient with active B. burgdorferi infection. Never give steroids or any other immunosuppressant to any patient who may even remotely be suffering from Lyme, or serious, permanent damage may result, especially if given for anything greater than a short course. If immunosuppressive therapy is absolutely necessary, then potent antibiotic treatment should begin at least 48 hours prior to the immunosuppressants." (page 12)

"If treatment can be continued long term, then a remarkable degree of recovery is possible. However, attention must be paid to all treatment modalities for such a recovery- not only antibiotics, but rehab and exercise programs, nutritional supplements, enforced rest, low carbohydrate, high fiber diets, attention to food sensitivities, avoidance of stress, abstinence from caffeine and alcohol, and absolutely no immunosuppressants, even local doses of steroids (intra-articular injections, for example)." (page 20)

Many of these quotes are in BOLD type in the document to emphasize the importance of what is being said about steroids.

Of course, if the patient cannot breathe, then a steroid may be REQUIRED to avoid death! But, don't let her take steroids just for costrochondritis! Those who have taken them have really suffered as a consequence. It makes lyme extremely difficult to treat and cure.

I hope she has not yet taken such drugs.

Perhaps God has directed you to this forum and given you the idea to research lyme disease! Good for you.

I had undiagnosed lyme disease for at least 10 years before a doctor thought to test me for lyme disease. Still, I got well. I completed my treatment 8 years ago and I am still symptom-free, enjoying my life. I still hang around LymeNet to help point folks to those few doctors who know how to get rid of lyme for a person.

Many doctors treat lyme, but only a very few know how to cure it. That is what I learned in the 10 years I have been studying this disease.

Posts: 9931 | From Maryland | Registered: Dec 2007  |  IP: Logged | Report this post to a Moderator
hopingandpraying
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My son got the "Costochondritis" diagnosis among others as well. Turns out it was Lyme and co-infections!!

A Mother's instincts are usually spot on! Run with it and don't turn back!

Get your dear daughter in to be evaluated and treated by a Lyme-literate doctor (LLMD). Don't waste your time and money with anyone else! Been there, done that!

It took 6 YEARS just to find out what was wrong with my son, all sorts of diagnoses, and the typical, "It's all in his head" one!! He has now been ill for 13 years.

Btw - 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. Thanks.

Posts: 8824 | From Illinois | Registered: May 2006  |  IP: Logged | Report this post to a Moderator
PISCESGIRL18
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Okay thank you both. I can't seem to find a Lyme-literate doctor on Long Island. The two that I called didn't accept insurance or wouldn't treat 17 yr old.

I read part of the link sent to me by TF and it said to ask for Western Blot blood test. So I was thinking I will just ask her pediatrician for script.

So the link said to get a copy of blood test and bring to Lyme-literate doctor. If anybody knows of LI doctor please let me know. Thank you.

Posts: 4 | From SUFFOLK COUNTY NEW YORK | Registered: Apr 2013  |  IP: Logged | Report this post to a Moderator
hopingandpraying
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Sent you some more suggestions.

Read "Cure Unknown" by Pamela Weintraub and view the DVD, "Under Our Skin" for free on www.hulu.com.
You can probably find the book and video at your local library or pick up a used copy on Amazon.

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TF
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Lyme literate doctors are few and far between. Lyme literate doctors who treat people under age 21 are like trying to find a needle in a haystack!

So, you must be prepared to travel. And, they won't take insurance. That's why I gave you the start out advice above.

I can send you names of 2 good docs who will treat your daughter, but they are NOT on Long Island or close to it. And, the wait to see them is considerable. The nearest one (in NY state) is very, very difficult to get an appointment with.

About half of all lyme patients have to go out of state for their medical care. For children, virtually every parent is taking their child out of state. There are just so very, very few lyme docs who treat children.

Let me know if you want the names of the docs I recommend for your daughter. I can give you prices, waiting time, etc. also. It is VERY expensive.

Posts: 9931 | From Maryland | Registered: Dec 2007  |  IP: Logged | Report this post to a Moderator
   

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