Hi Everyone, I'm in desperate need of finding a good LLMD in Long Island (preferred) or NYC. I've seen 2 Infectious Disease Docs & have conflicting opinions - One Doc says I do have Lyme / Erhlichiosis & the other one says no. I've already taken the 3 weeks of Doxy with not much relief. Please help, I'm confused & dont know what to do...I'm always exhausted & in constant pain. Any info would be greatly appreciated. Would also love to hear from "Ticker" on what she has to say .... THANKS !!
How long have you been sick? What dose of Doxy did you take? Was it only prescribed for three weeks? How long have you been off of it?
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
Testicular pain/pelvic pain
Unexplained menstrual irregularity
Unexplained milk production: breast pain
Irritable bladder or bladder dysfunction
Sexual dysfunction or loss of libido
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
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 Many doctors do not understand Lyme and treat with outdated protocols. Lyme needs continuous aggressive treatment. Often, infectious disease doctors are not the best to see for Lyme disease.
Besides Lyme and two types of Ehrlichiosis, ticks can also transmit other co-infections including Babesiosis, Bartonella, and Mycoplasma. Many 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. Were you tested for all of these?
There are three Lyme doctors in NY who come highly recommended: in Armonk, Hyde Park, and Manhattan. Which is closest for you?
Be aware of the Jarisch-Herxheimer Reaction (herx). Often, when people who have Lyme take antibiotics, their symptoms become worse or they get new ones. When the antibiotics kill the bacteria, toxins are released making them feel sicker. It can be very scary when it happens, but it is a good sign the antibiotics are working. Although it can vary individually, many people experience this at the beginning of treatment and every three to four weeks.
During treatment, it is a good idea to document your symptoms daily. One way to do this is to list the three main symptoms you have each day and a numerical rating of their severity, from 1-10. Over time when you review this, you can see when your herxes occur and how you are responding to the meds.
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. I also recommend the book "Everything You Need To Know about Lyme Disease (2nd edition)" by Karen Vanderhoof-Forschner.
THANK YOU Ticker for responding !!
I have been reading a lot on this message board & you are filled with such great info ! … To answer you questions…I’ve only been sick since July 1, 2007. It started with flu-like symptoms (horrible aches/pains & lethargy, ear aches, high fevers, sore throat & swollen painful glands). Went to Doc & dx with Strep, Tonsillitis & Otitis Media (also developed exudate on tonsils), took Z-pack, no improvement. Went back to Doc, took 10 days of Avalox, tonsils & ear infections got better, but still had the rest. Went back again, Doc did blood work to rule out Mono & Lyme. Results were:
Mono: Positive for recent & past EBV infection (not current ??)
Lyme: Western Blot (From Enzo Lab)
B burgdorf IgG - Absent / Negative
B burgdorf IgM - Present / “Indeterminate” for p23
Doc said sounds like Lyme based on symptoms & complaints, but can’t confirm based on 1 band, so she put me on 400mg of Doxy/day for 3 weeks & sent me to an Infectious Disease Doc who did more tests:
Lyme (ELISA) – IgG, IgM Negative (North Shore LIJ Lab)
Ehrlichia – IgG & IgM Positive
(told it was done at a “specialty lab” Valencia, CA)
Doc said it’s very unusual to be positive for both IgG & IgM, it may be a mistake or my proteins are interacting in an unusual way together (??), so she wants to repeat the labs in 1 month because if its truly positive for Ehrlichia the numbers will increase dramatically (don’t have the exact numbers , she is sending me copy).
Now - I’ve been done with the Doxy for about 5 days. Fevers & swollen glands are gone, but still have unbelievable exhaustion & aches / pains every day. If I stay home & do nothing, it’s tolerable, but if I go out to do errands during the day I come home with a sore throat, achy joints & want to crawl into bed. I’m going crazy because I don’t know what to do or what’s really wrong with me – If anything. All I know is that I’m not my normal self. I’m normally a very active person - run around all day long at my job & go to the gym on a regular basis – But since this all started I haven’t been able to work or go to the gym at all !! P.S have also been experiencing many of the symptoms you listed.
About the Lyme doctors in NY - Manhattan is the closets for me, so if you could give me 1 or 2 names I would greatly appreciate it. Sorry this is so long, but what do you think Ticker ???
It is good that your infection is early. Early infections are the easiest to cure.
Do you have a copy of the Western Blot you had done?
I have been positive on both the Igm and the IgG Ehrlichiosis test. Were you tested for both types--HGE and HME? Being co-infected can make the symptoms of each infection more severe.
400 mg of Doxy is a good dose, but three weeks is never long enough treatment, especially when you are still having symptoms. You need further treatment. Three weeks of treatment is not long enough. From what I understand, an infection caught within two weeks of the bite should be treated with a minimum of six weeks of the proper dose antibiotic. The antibiotics kill the bacteria when they are reproducing, which is estimated at four weeks. Six weeks of treatment will cover one growth cycle. If symptoms are still present, further treatment is warranted. A longer infection needs longer treatment.
My advice is get to a Lyme doctor as soon as possible and get tested for all the co-infections. The sooner you get proper treatment the better. Getting proper treatment early in the infection may reduce the chance of long-term complications.
There are some excellent Lyme doctors in NY. The ones I know of in NY who come highly recommended are Dr. Bernard Raxlen in Manhattan, Dr. Richard Horowitz in Hyde Park, and Dr. Kenneth Lienger in Armonk. I hope you can see one soon.
Ginger... I also live on long island.. and there are a few other on here as well.. I had pretty much the same symptoms as you.. been doing this for almost 3 years now.. I have a great LLMD in NYC.. A few others on this board use him as well.. I must say he saved my life.. Dr. Bernard Raxlen... call asap because it takes a little while to get an appointment.. Also I have hit every doctor on long island and NYC trust me when I tell you he is the only one that will give you proper treatment.. let me know if you have any questions.
Hi Ticker & Kelly 5907 !!
Thank you both for responding. Nice to meet you Kelly! Sorry I haven't responded sooner, but I've had a couple of bad days...Anyway, thanks for the advice, once again, Ticker. Hopefully Tuesday morning I will be able to make an appointment with someone good.
Kelly - I'm so sorry to hear you've been dealing with this for 3 years - how horrible! I tried to make an appointment with Dr. Raxlen, but the office said he does not see patients, only does research with people ?? very confusing. Have you heard this ? Have you seen him recently? Maybe I will try to call again on Tuesday. Well, I hope you guys are having a GOOD day !
Talk to you soon !
Ginger.. You must have contacted another Dr. Bernard Raxlen.. He is definitely still taking patients.. Ill be going next week.. My opinion he is the best.. he is on TV alot as well.. From my research over the years there are only 2-3 good LLMD's in New York state.. let me know what happens
Last edited by moderator2; 09-03-2007 at 02:09 PM.
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KELLY – Yes ! By the way… I actually did contact the wrong doctor – I guess I had gotten Dr. R’s & another Dr’s number mixed up…How stupid of me… I’ve been doing things like that a lot lately. Anyway, I’m calling the correct number for him in the morning! Thanks once again. Ginger
Last edited by moderator2; 09-03-2007 at 02:50 PM.
ginger... good luck... let me know if you make the appointment.. one draw back to LLMD's is they dont usually take insurance.. im not sure if you are aware of that.. alot of insurances will reimburse you something though.. believe me its a small price to pay to having your life back.. feel better
Hi Kelly - Thanks for the info on the insurance, yes I have heard that they dont usually take insurance, but at this point i dont care. I just want some answers.
My ID Doc (#2) called me this AM to tell me that my Ehrlichia test came back. She said "You have been exposed, but the tests are borderline Negative & you have already taken the Doxy, so you should be fine" & that was that - Good-bye. Well that wasn't very helpful to me - what does that mean ?!?!
But I do have some good news ! I just got an appointment at Dr. Raxlen's office TOMORROW !! The only thing is that it's with his PA (Carolyn), Dr. Raxlen didn't have an appointment until the beginning of October. I took the appointment out of desperation because I just want to know why i'm still feeling so horrible after taking the Doxy & to find out once & for all if I really do have Lyme &/or Ehrliciosis & plus I MUST go back to work soon!!
Do you think I should go see his PA ?? I just dont want to wait another month to find out some answers...Let me know what you guys think - Thanks.
I would take the app. No doubt. I'm sure the PA consults with Dr. R, I saw a gyn like that. The nurse pract. saw me but consulted with the Dr. When things were hairy with my test results the Dr. had the final word and say. The nurse Pract. was great they worked closly together. The 2 are usually on the same page. Good luck. mc
Ginger.. Forget the ID doctors.. I went to 3 and it got me know where.. Now, Iam so happy your going to Dr. R's office... Carolyn is great.. I have talked to her on the phone alot.. She works hand and hand with Dr. R... Bring all of your paper work with you.. Did you have a positive test yet?? Im sorry if you told me already.. Im sure you are like me and have alot of paperwork, I brought everything.. If they feel you need to be treated they will treat you aggressively.. I have the Picc line and it is great.. I never want to take it out.. You will feel such a weight lifted leaving the office.. they are so amazing there.. They will take alot of blood and send it out to different labs.. Iam so happy you are going... Tomorrow will be the first day on your road to recovery..I have been out of work since april and I go back in December.. I cant wait.. I would go back now except my job wont let me work with the picc line.. but I feel well enough to go back.. Write me when you get home and let me know how it goes... GOOD LUCK !!!!!