Lyme Disease Clinic

[Rawleigh]

Does anyone have a recommendation for a doctor or clinic that specializes in chronic Lymes disease? My wife may have it and we are looking for specialists. Doctors are not as used to treating late stage Lymes down here in Virginia. Thanks in advance.

[bob lico]

Yes the best in the country is at stony brook university hospital at stony brook ,long island ny.this is also the researth center for the the usa.unfoutunately the deer tick is the size of pencil tip and very differcult to detect.i am ok but cousin's wife,nieces live with it but the doctors controll it even during pregnancy.contact them immediatly! My two nieces both receive there masters with this dreded desease. Making then so tired they. Could hardly say awake in class but doctors put this in check and they live a normal life now.

[MarkS]

Rawleigh I know this is a stupid long way for you but this is a common affliction in Wisconsin. We have one of the best guys in the nation in our little neck of the woods. 5 minutes from my door and you are welcome to stay with us if your search brings you my way.
http://www.ratemds.com/doctor-ratings/1 ... ca-WI.html

If nothing else you can always chat on the phone with him. He may have some insight?

[TailhookTom]

Note, if you happen upon a Physician bearing the same last name as mine, since he's my older brother he should have the same last name, RUN for the border. The last I spoke with him he was moving from CT to VA and is a "specialist" in Lyme disease. Keep in mind although he was a respected, board certified anesthesiologist - he retired on disabilitly due to nerve damage from dog bites on his hand, he and his wife opened a bio-identical hormone therapy treatment for Lyme disease. My physician, who was a resident with him, commented, "oh, so he's practicing voo doo medicine now, what a shame he used to be a good guy."

So, proceed at your own risk.

Tom

[bob lico]

Both of the young ladies were bitten by dear tick while they vacation at the Shelter Island house which has deer running back and forth in back yard. Sometimes the deer tick bite does not show the tell tale red circles .like i said very hard to find on your body especially in hair. Must get immediate clinic care before " venom" spreads. Eastern Long Island has a large deer population with ticks thus the stony brook clinic and research center.

[Rawleigh]

Thanks to everyone for their input. Part of the problem is that she tests negative for Lymes, but still has the symptoms of late stage Lymes. Pain, stiffness, tiredness, burning sensations on her skin, the list goes on and on. A Rheumatologist has seen her and said that he cannot help her. The problem with the negative test is that most infectious disease doctors and the insurance company won't recognize it as Lymes. She has taken Doxycycline earlier this Summer and the symptoms abated some. She is taking it again right now. As I understand it this taking of antibiotics earlier could have masked the disease from the standard tests.

There seems to be lots of contradictory information out there about Lymes that makes it hard to glean the true facts. I am assuming that doctors north of the Mason-Dixon Line would have more experience with it. I will look into your recommendations.

[Joseph Fikentscher]

I was told that I had Lymes back around 1980. They treated me with antibiotics and turned me loose, however they said that I would test positive for the rest of my life. Always wondered if that was bunk or real, or should I still be taking something.

[MarkS]

I too was treated for it once even though I tested negative the Dr was pretty convinced I had it. it was very early and we never gave it a chance to present symptoms other than the aching joints. I have no further symptoms or side affects. It is my understanding that it often tests false negatives.

Which of course begs the question, why do we call it a Lyme's test?
All the best.

[TailhookTom]

Mark:

I believe the initial research indicated that it manifested in the Old Lyme, Lyme area in CT. I'm no conspiracy theorist, but Plum Island is in eyesight of Old Lyme.

Tom

[bob lico]

I am with you tom. The government fu-ked up .personally saw what happen at Brookhaven lab .hmmm lets put some uranium 232 on this table in the middle of the woods to see what after effect a nuclear bomb would have on the forrest.we will put a 6' fence around to protect experiment-------------- opps the deer jump over the fence into the experiment area. Oh boy we have to find the deer with the radioactive liver------- NOT

[White Bear]

Been there, done that! Four times with the Doxycycline therapy which seems to have mitigated the symptoms each time, but then again I keep getting bitten. As has been explained to me, once you have acquired the spirochaetes, your body never rids itself of the bacteria - it merely goes into hiding until a weakness in the immune system allows another flare up. Beyond the Doxycycline, if necessary, the next treatment is usually a prolonged session with IV Rocephin (Ceftriaxone) which does the same but on a higher level. The fabled "bulls eye rash" is usually found in only something like 20% of persons with Lyme Disease and the present tests (ELISA) are not very accurate as they report many more negatives than they should. The Western Blot test is better, but some are having trouble getting it covered by insurance. As an anecdotal aside, my mother while in her nineties, suffered from many symptoms similar to those of Lyme. All testing returned negative until a time she was in hospital for a cardiac event and suddenly spiked a 104+ fever for no apparent reason. Following that, her Lyme test returned positive and additional Doxycycline therapy abated the symptoms. Lyme, unfortunately, is widespread in our area, is misunderstood and misdiagnosed by the majority of doctors, and receives only a fraction of the research that should be accorded a disease of its severity. I'll second Bob Lico's endorsement of Stony Brook University Hospital as a good place to get as close to the root of the problem as is presently possible.

[Navatech]

Lyme, unfortunately, is widespread in our area, is misunderstood and misdiagnosed by the majority of doctors, and receives only a fraction of the research that should be accorded a disease of its severity.

There's more money in getting men with ED a "boner"... Furthermore, the pharmaceutical industry thinks that as treatment already exists there will be less of a ROI as (the way they see it) it's a doctors (diagnostic rather then treatment) issue...

Off topic, have you ever thought what a 20' container of "blue" or "yellow" diamond shaped pills is worth?!... Some of the major pharmaceuticals have been using my products to secure their containers... Keep in mind that as far as they're concerned, any breach of the container or even losing chain of custody of the product completely invalidates the product...

A few years ago two containers loaded with TEVA products arrived at their destination with bags of sand instead of cartons of product... TEVA refused to ransom the loads and the perps couldn't get rid of the stuff after TEVA publicized the batch numbers... Eventually the load was recovered and destroyed...

[gplume]

Rawleigh-

I have to reply to this one. I grew up in Lyme Ct, and the Murrys who were as I understand it the first people diagnosed with the Lyme disease were our neibors. Needless to say I also test positive, and have dealt with symptons for many years. Eventually most have went away, but some still linger. I had arthritis symptons for many years, fatigue..ect. It killed my HS sports career as i had constant joint swelling. Eventually it all went away, but it was a long road.

Anyway, large doses of antibiotic are supposedly the best bet. There are a lot of experts out there. From my recollection, Allen Steere was head Dr. In terms of research on Lyme. Perhaps you can google him to get more info.

I read the Lab 257 story about the connection of Plum Island to the disease. Very possible this is a govt experiment that ran " amock"...connection is very plausible. Book is a little sensational, but the chaper on Lyme is interesting.

Anywy, i was never treated. Had symptons for many many years, but now, 40 + years later, no permenant damage.(that i know of).

I guess, not much help on the here and now, but non the less wanted you to know you are not alone.

Giff

[TailhookTom]

Giff:

I didn't know you grew up in Lyme, CT I lived in Old Lyme for many years. Dunne's Lane, which was off of Library Lane. Small world. We have a summer house that we bought 15 years ago in Old Lyme Shores. I've had many friends suffer with Lyme disease, some recovered better than others. I too test positive, however, I attribute my aches and pains to old age, over weight and DUMB when it comes to what I think I can still do!

Tom

[gplume]

Tom-
Small world indeed. I lived on joushua town road in Lyme. Visited/lived in Old Lyme during my parents divorce. Main street old lyme. Nice place.

Br
Giff