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Old 09-06-2007, 02:35 PM   #1
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my doctor doesn't believe me and I have PROOF!!

Hello!
I am new here. I have been sick for about 2.5 or 3 years now and sent to every specialist under the sun chasing MS and a million other things. I came to the conclusion that I have Lyme and went to see a friend of mine who is a nurse. She did my bloodwork last week and here are some of the results so far:

CD57 result was 36 (normal is 60 - 360)
HHV-6 was 1:80 (equivocal)

I brought this information to my doctor while we await the Western Blot results.

She didn't know anything about CD57 and dismissed my theory! I had already started oral antibiotics prescribed by the friend's employer (amoxicillin and probenecid) and have had the classic "herx" reaction. I also explained this to my doctor - she looked at me as if I was completely bonkers!!

I know that CD57 is used as a way to confirm a clinical diagnosis. Am I wrong??????

Last edited by selfdiagnosed; 09-06-2007 at 03:32 PM.

 
Old 09-06-2007, 03:33 PM   #2
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Re: my doctor doesn't believe me and I have PROOF!!

Did any of you have low CD57's? Does your LLMD check these #'s?

 
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Old 09-06-2007, 03:59 PM   #3
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Re: my doctor doesn't believe me and I have PROOF!!

I'm sorry that your doctor doesn't believe you. I recommend that you go to a Lyme Literate Medical Doctor (LLMD). A lot of doctors don't know much about Lyme Disease, so even if we try to convince them, they don't always have enough knowledge about it to make a diagnosis. Which state do you live in? I would love to recommend a LLMD that is around your area.

Since you responded to treatment, then it is very likely that you do have Lyme.

I don't know the answers to your other questions, but I just wanted to tell you to not be discouraged. Some doctors are jerks and seem to not want to help us, but there are good doctors out there and you will find them. Always believe in yourself, and never give up. Good luck to you!

 
Old 09-06-2007, 04:59 PM   #4
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Re: my doctor doesn't believe me and I have PROOF!!

Quote:
Originally Posted by AquaticChic33 View Post
I'm sorry that your doctor doesn't believe you. I recommend that you go to a Lyme Literate Medical Doctor (LLMD). A lot of doctors don't know much about Lyme Disease, so even if we try to convince them, they don't always have enough knowledge about it to make a diagnosis. Which state do you live in? I would love to recommend a LLMD that is around your area.

Since you responded to treatment, then it is very likely that you do have Lyme.

I don't know the answers to your other questions, but I just wanted to tell you to not be discouraged. Some doctors are jerks and seem to not want to help us, but there are good doctors out there and you will find them. Always believe in yourself, and never give up. Good luck to you!
Thanks for the advice and encouragement.
I live in Upstate NY about 2 hours north of NYC.

 
Old 09-06-2007, 05:52 PM   #5
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Re: my doctor doesn't believe me and I have PROOF!!

Hi I agree with Aquatichick...you truly need to see a doctor that "specailizes" in Lyme Disease. I would post a new thread aksing for a doctor nearest you. There aren't very many doctors that want to take on Lyme disease. It is a very political disease. And many doctors don't want to risk losing their license, beings patients need to be on long term antibiotics. And many of us do not show positives so doctors need to go on clinical symptoms.

Get to a LLMD as soon as you can. It truly will make all the difference in your recovery. It is not a disease to mess around with...

I don't now much about the CD57 test. But I do remember others saying a low number means you have lyme. I'm sure other's will chime in ...

Good luck to you!! Hope you find answers soon!


 
Old 09-06-2007, 06:13 PM   #6
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Re: my doctor doesn't believe me and I have PROOF!!

Hi selfdiagnosed, welcome to the board!

I am sorry you have been sick for so long. A low CD-57 is indicative of Lyme.

What dose of Amoxicillin are you taking?

Below is a Lyme symptom list. You can have any combination of symptoms.

Unexplained fevers, sweats, chills, or flushing
Unexplained weight change--loss or gain
Fatigue, tiredness, poor stamina
Unexplained hair loss
Swollen glands
Sore throat
Testicular pain/pelvic pain
Unexplained menstrual irregularity
Unexplained milk production: breast pain
Irritable bladder or bladder dysfunction
Sexual dysfunction or loss of libido
Upset stomach
Change in bowel function-constipation, diarrhea
Chest pain or rib soreness
Shortness of breath, cough
Heart palpitations, pulse skips, heart block
Any history of a heart murmur or valve prolapse?
Joint pain or swelling
Stiffness of the joints, neck, or back
Muscle pain or cramps
Twitching of the face or other muscles
Headache
Neck creeks and cracks, neck stiffness, neck pain
Tingling, numbness, burning or stabbing sensations, shooting pains
Facial paralysis (Bell's Palsy)
Eyes/Vision: double, blurry, increased floaters, light sensitivity
Ears/Hearing: buzzing, ringing, ear pain, sound sensitivity
lncreased motion sickness, vertigo, poor balance
Lightheadedness, wooziness
Tremor
Confusion, difficulty in thinking
Difficulty with concentration, reading
Forgetfulness, poor short term memory
Disorientation: getting lost, going to wrong places
Difficulty with speech or writing
Mood swings, irritability, depression
Disturbed sleep-too much, too little, early awakening
Exaggerated symptoms or worse hangover from alcohol

It is very important to see a kowledgeable doctor. Many doctors do not understand Lyme and treat with outdated protocols. No test is completely reliable, and results can vary by lab. Do you know which lab is doing your Western Blot?

Besides Lyme, ticks can also transmit several co-infections including Babesiosis, two types of Ehrlichiosis (HME & HGE), Bartonella, and Mycoplasma. It is estimated that 60% of people who have Lyme are co-infected. It may affect treatment choice and progress. It is important to be tested for these by a Lyme reputable lab such as IgeneX in Palo Alto, CA.

I know of three Lyme doctors in NY who come highly recommended: in Armonk, Hyde Park, and Manhattan. Would you like one of their names?

It is also important to learn as much as possible. I recommend reading Dr. Joseph Burrascano's 2005 Diagnostic Hints and Treatment Guidelines For Lyme and Other Tick Borne Illnesses (on-line). He is one of the top Lyme doctors in the country, and many Lyme doctors follow his protocols. He discusses the CD-57 in these guidelines. I also recommend the book "Everything You Need To Know about Lyme Disease (2nd edition)" by Karen Vanderhoof-Forschner.

Hang in there okay? Good help is available.

Last edited by ticker; 09-06-2007 at 06:14 PM.

 
Old 09-06-2007, 06:21 PM   #7
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Re: my doctor doesn't believe me and I have PROOF!!

Quote:
Originally Posted by jojo View Post
Hi I agree with Aquatichick...you truly need to see a doctor that "specailizes" in Lyme Disease. I would post a new thread aksing for a doctor nearest you. There aren't very many doctors that want to take on Lyme disease. It is a very political disease. And many doctors don't want to risk losing their license, beings patients need to be on long term antibiotics. And many of us do not show positives so doctors need to go on clinical symptoms.

Get to a LLMD as soon as you can. It truly will make all the difference in your recovery. It is not a disease to mess around with...

I don't now much about the CD57 test. But I do remember others saying a low number means you have lyme. I'm sure other's will chime in ...

Good luck to you!! Hope you find answers soon!

Thanks! Yes, basically my doctor said that she didn't want me to sue her if the treatments went wrong and I developed an antibiotic resistance or superinfection!!! How shallow! I should sue her for not treating me

 
Old 09-06-2007, 06:27 PM   #8
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Re: my doctor doesn't believe me and I have PROOF!!

Hi Ticker - I am going to highlight my symptoms on your list here:

Also, I would like the name of a doc in the NY area for sure!
I am taking 500mg amoxicillin 3 x per day right now, and going in tomorrow to see my friend's doctor to get started on I.V. antibiotics. We are using that 33 pg report by Dr. Burrascano to guide us for now until I can see a LLMD.

Lab Corp is doing my bloodwork - we did test for bartonella and it was negative. My EBV was high as well as the ESR too.

THANKS!!! Glad I found this board

Unexplained fevers, sweats, chills, or flushing
Unexplained weight change--loss or gain
Fatigue, tiredness, poor stamina
Unexplained hair loss

Swollen glands
Sore throat
Testicular pain/pelvic pain
Unexplained menstrual irregularity
Unexplained milk production: breast pain
Irritable bladder or bladder dysfunction
Sexual dysfunction or loss of libido
Upset stomach
Change in bowel function-constipation, diarrhea

Chest pain or rib soreness
Shortness of breath, cough
Heart palpitations, pulse skips, heart block
Any history of a heart murmur or valve prolapse?
Joint pain or swelling
Stiffness of the joints, neck, or back
Muscle pain or cramps
Twitching of the face or other muscles
Headache

Neck creeks and cracks, neck stiffness, neck pain
Tingling, numbness, burning or stabbing sensations, shooting pains

Facial paralysis (Bell's Palsy)
Eyes/Vision: double, blurry, increased floaters, light sensitivity
Ears/Hearing: buzzing, ringing, ear pain, sound sensitivity
lncreased motion sickness, vertigo, poor balance
Lightheadedness, wooziness
Tremor
Confusion, difficulty in thinking
Difficulty with concentration, reading
Forgetfulness, poor short term memory
Disorientation: getting lost, going to wrong places
Difficulty with speech or writing

Mood swings, irritability, depression
Disturbed sleep-too much, too little, early awakening

Exaggerated symptoms or worse hangover from alcohol

 
Old 09-06-2007, 06:31 PM   #9
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Re: my doctor doesn't believe me and I have PROOF!!

Hi selfdiagnosed. I suggest getting tested at IgeneX in Palo Alto, CA. It is important to know if they are present because many Lyme doctors believe the co-infections need to be treated first for Lyme treatment to be effective. This was true in my case.

1500 mg of Amoxicillin is not strong enough for Lyme. I believe the recommended minimum dose is 3000 mg daily.

The Lyme doctors I know of in NY who come highly recommend are Dr. Bernard Raxlen in Manhattan, Dr. Richard Horowitz in Hyde Park, and Dr. Kenneth Liegner in Armonk.

Good luck!

 
Old 09-07-2007, 03:07 AM   #10
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Re: my doctor doesn't believe me and I have PROOF!!

Hi Selfdiagnosed- I am glad you found this board too. I think most of us here are in the self-diagnosed category and THEN we find a doc who knows something about Lyme. You are so fortunate to find a doc willing to treat you based on Dr. Burrascano's guidelines! I actually wrote a paper on the clues in my diagnostic path that should have indicated Lyme to docs (who were chasing MS) but were not identified. I have shared with a neurologist who just finished her residency and I am hoping we will have another doc in MA who will recognize Lyme when they see it.

You might also want to try Dr Steven Phillips in Wilton, CT.
Best of luck!

 
Old 09-07-2007, 06:04 AM   #11
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Re: my doctor doesn't believe me and I have PROOF!!

Self.... I see Dr. Bernard Raxlen in NYC.... Saved my life... the best

 
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