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Old 06-26-2007, 02:52 PM   #1
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LLMD in Massachusetts?

Unless I missed it, I didn't see any reference to LLMDs in the Boston area. Anyone have a positive experience with one?

A rheumy gave me a blood test last year for Lyme, which came up negative, and he doesn't seem to think any other testing is necessary even though I have a lot of the symptoms for Lyme.

Thanks...

 
Old 06-26-2007, 03:29 PM   #2
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Re: LLMD in Massachusetts?

Hi ennio, weclome to the board!

How long have you been sick? 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

When Lyme disease is a possibility, it is very important to see a knowledgeable doctor. Many doctors do not understand Lyme and treat with outdated protocols. No test is completely reliable, and results can vary by lab. Lyme needs continuous, aggressive treatment.

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 only know of one Lyme doctor in MA, and I do not recommend him. In CT, Dr. Steven Phillips in Wilton comes highly recommended.

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. He is one of the top Lyme doctors in the country, and many Lyme doctors follow his protocols. I also recommend the book "Everything You Need To Know About Lyme Disease (2nd edition)" by Karen Vanderhoof-Forschner.

Last edited by ticker; 06-26-2007 at 03:32 PM.

 
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Old 06-26-2007, 06:02 PM   #3
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Re: LLMD in Massachusetts?

Thanks for the info, ticker!

I've had symptoms since 99 or so, and seemingly on an annual basis I get a new muscle or joint ailment that never goes away in spite of physical therapy and other treatments.

I was diagnosed with fibromyalgia, which may be correct, but I want to make absolutely sure it's not Lyme even though my blood test was negative. My doc says all he can do is repeat the test, but after doing some research have come to find that Lyme almost never gets the thorough testing it should.

Thanks for the referrals!

Last edited by ennio; 06-26-2007 at 06:08 PM.

 
Old 06-26-2007, 07:35 PM   #4
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Re: LLMD in Massachusetts?

Hi ennio. I think it is a good idea to be evaluated for Lyme. Many people who have Lyme were first diagnosed with other diseases including CFS, Fibromyalgia, MS, and ALS.

No test is completely reliable. It is my understanding that the ELISA or titer is the least reliable and the one most doctors run first. Is this the test you had done? It would be better to be tested at a Lyme lab such as IgeneX.

 
Old 06-29-2007, 03:11 AM   #5
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Re: LLMD in Massachusetts?

Hi Ennio
I don't know where you are located in ma but there is an llmd specialist in hampton nh seacoast lyme center Dr Don McNeel He has been very good through my Lyme ordeal You might want to check it out
Good luck Ryebeach

 
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Old 06-29-2007, 08:54 AM   #6
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Re: LLMD in Massachusetts?

Thanks for the referral! Through one of the Mass. Lyme support groups I got a name of a doctor, Leon Hecht, up in Portsmouth NH. He says he does the Igenex and Western Blot tests, so that's better than the negative blood test I had before.

 
Old 06-29-2007, 02:51 PM   #7
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Re: LLMD in Massachusetts?

Hi ennio. I am not familiar with this doctor, but if he uses IgeneX and tests for co-infections, that is a good start.

When is your appointment? Good luck! Let us know how it goes okay?

 
Old 06-29-2007, 03:45 PM   #8
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Re: LLMD in Massachusetts?

It's in about 4 weeks, ticker. I could have gone earlier, but just from personal experience, the insurance red tape always takes longer than they say when it comes to out of network referrals.

I will update the thread after my appt. I spoke with the doctor for about ten minutes and he wasn't arrogant and actually listened. A doctor!

 
Old 06-30-2007, 06:17 AM   #9
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Re: LLMD in Massachusetts?

How refreshing right? A doctor who actually listens!

 
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