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JOEMAC 08-06-2006 06:41 PM

Some advice and oppinions needed
I have been having some health issues for about 2 years now that I cant seem to find an answer for. These symptoms are; dizzyness, lightheadedness, floaters in eyes, fatigue and stiffness in my neck. I have been to an ENT, a neurologist, and my regular doctor and have had an MRI and blood work done to no avail. Someone recently told me that my symptoms match some of the symtoms of Lyme disease although I dont ever recall being bitten by a tick (but I do have a house in the Pocono Mountains). I have a few questions for you guys and girls. The first one is although you cant diagnose someone over a computer, do you think it is possible that I could have Lyme disease? Another is I was planning on making an appointment with my Dr. and ask him if I should have a Lyme titer done, should I make an appointment with him or try and find a LLMD in my area and go to him? The last is if I should just go to an LLMD, does anyone know of one in the NYC/central NJ area or how I go about finding one. Thank you and I look forward to your advice.

ticker 08-06-2006 07:05 PM

Re: Some advice and oppinions needed
Hi JOEMAC, welcome to the board!

Many people are bitten by ticks without knowing it. They are tiny and inject a numbing agent so you cannot feel them on you. Ticks are everywhere. I believe that NY has the highest number of Lyme cases in the country.

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
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
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. Besides Lyme, ticks can transmit several co-infections including Babesiosis, Ehrlichiosis (HME & HGE), Bartonella, and Mycoplasma. Many people who have Lyme are co-infected, and 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.

No test is completely reliable and results can vary by lab. It is my understanding that the ELISA or titer is the least reliable and the one most doctors run first.

In my opinion, you should see a Lyme doctor for an evaluation. This will likely save you time, money, and aggravation in the long run. In NY I know of doctors who come highly recommended in Armonk, Hyde Park, and East Hampton. Would you like one of their names? Is NJ closer for you?

Hang in there okay? Don't give up, you will find out what is wrong.

TINUVIEL 08-06-2006 09:23 PM

Re: Some advice and oppinions needed

Welcome to the board.

Second to everything Ticker said, that is excellent advice. And I definitely agree, go straight to the LLMD, I wish I had done that from the very beginning.

There is an excellent book by Karen Vanderhoof-Forschner, 'Everything You Need To Know About Lyme Disease and Other Tick-Borne Diseases'. It is very informative and easy to follow and is very helpful.

sleeperwoken 08-07-2006 08:30 AM

Re: Some advice and oppinions needed
Absolutely yes, go to an LLMD. Good luck, I hope you get some answers soon.

JOEMAC 08-07-2006 12:02 PM

Re: Some advice and oppinions needed
Thanks everyone. Ticker NJ is closer to me than some of the places you mentioned. If you have any names in Jersey I would love them. Thanks again.

JOEMAC 08-07-2006 03:32 PM

Re: Some advice and oppinions needed
OK so I had an appointment with my regular Dr. today and even though everyone agreed that I should go to an LLMD I went to this appointment anyway. I already had them squeeze me in an felt bad cancelling so I just went anyway. I told him that my symptoms were still lingering and I got the same run around. Probably stress, anxiety, sinus', everything that I've heard before. I asked if he thought it could be Lyme disease and he said he highly doubts it. He wants me to go for blood work and included a Lyme titer. I think I am going to take everyones advice and go to an LLMD. Titer if you or anyone else have any names that you can give me in NJ or the Staten Island area I would greatly appreciate it otherwise the ones you mentioned in those other areas would be great. Thanks.

ticker 08-07-2006 04:07 PM

Re: Some advice and oppinions needed
Hi JOEMAC. The doctors I know of in NJ who come highly recommended are Dr. Emilia Eiras in Jackson and Dr. Leslie Fein in West Caldwell.

I hope you can see one soon. Keep us posted okay?

JOEMAC 08-07-2006 05:13 PM

Re: Some advice and oppinions needed
Thanks ticker, both of those dr.'s are less than an hour away from me. I will call one of them tom. and try and make an appointment. This may sound stupid to those who have Lyme but part of me actually hopes I have it just so I have an answer to the symptoms I've had for the last 2 years. The other part of me hopes that I dont have it because of the horrible stories I have read about the painful recovery. I am getting married in Nov. and it really bothers me that I may not be well enough to enjoy it. Anyway thanks for the help and I will keep you updated.

Pearlscale 08-07-2006 05:51 PM

Re: Some advice and oppinions needed
I would like to welcome you also. I am sorry that you are ill and the run around you seem to be getting.

We have all been there. A LLMD is the one to decide if you could have lyme. They will base the diagnosis on more than just blood test. Blood test can be negative or indeterminate and you still have lyme. I hope you get an appointment soon.

Keep us all posted. (and Congrats on the uncoming marriage)


ticker 08-07-2006 07:17 PM

Re: Some advice and oppinions needed
Hi JOEMAC. You will be in good hands with either of these doctors. I believe that Dr. E. may be less expensive, but I am not sure.

We can all understand wanting a diagnosis to validate what has been going on. Although it is not easy going through treatment, you can get better.

Congratulations from me also on your marriage! Don't worry, you will have many good years.

Keep us posted on your progress okay?

JOEMAC 08-08-2006 12:51 PM

Re: Some advice and oppinions needed
Thanks again for the kind words. Should have asked earlier, do these dr.'s take insurance or do I have to pay out of pocket? I work for the City of New York and we have very good health insurance.

ticker 08-08-2006 02:08 PM

Re: Some advice and oppinions needed
Hi JOEMAC. Unfortunately, most Lyme doctors do not take insurance because often they do not get reimbursed. Most people pay up front and submit the bills for what their company will reimburse. Hopefully your company will cover a large percentage.

JOEMAC 08-08-2006 03:53 PM

Re: Some advice and oppinions needed
Thanks Ticker. I called and made an appointment with Dr. Eiras for Sept. 12 and the girl on the phone told me that they dont except insurance. She told me they were going to send me some material to read over and some stuff to fill out. Any idea what costs I will incure during the initial visit? I know all Dr.'s are probably different but I dont want to go there expecting one thing and getting another.

Pearlscale 08-08-2006 05:07 PM

Re: Some advice and oppinions needed
You might call the doctor back and ask what the estimated charges will be.

6Blues 08-08-2006 05:29 PM

Re: Some advice and oppinions needed

I see Dr. E. My first appointment was about $200.

Glad you are seeing her - she's thorough and very professional. She has a lot of experience treating Lyme.

Try not to worry about the wedding. Lyme is curable. You will feel better someday.

Peace and health to you and your fiancee'.

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