I live in MA also and I couldn't find any specialists. There is a Dr. Steere in Boston but from what I have heard from others on this board, they say not to go to him. How long ago were you diagnosed and have you been treated at all?
Out of curiosity, what part of the state are you from?
sorry, just saw your other thread. You haven't been diagnosed with a positive lyme test but you are on Doxy. I took Doxy, the same dose you are on and after a week I was feeling much better. I still have, on a daily basis, the physical symptons but a lot of my neurological symptoms aren't bothering me anymore. I still have horrible ringing in my ears and I have lost 50% of the hearing in my left ear but all in all, I do feel better.
My husband has started to get very sick so we are now waiting for results on his bloodwork. He has worked outside most of his adult life and I have pulled ticks off of him a few times so it's possible. Of course, he is in denial but I hope he is right.
Hi, I responded to your other post also, but I don't know if you saw it. I do not know of any Lyme doctors who come highly recommended in MA, but there is an excellent one in Wilton, CT. Would you like his name?
I found him! His name is Dr. Donta in Falmouth.After 18 months of searching and chasing symptoms,I found a LLMD! Took me 6 months to get in to see him.He described why what I was taking was ineffective( IV,Low dose doxy,vitamins etc.) He also told me NOT to take b complex or vitamin c as the lyme feeds off it!!! I will now start Biaxin and planequil for 4 months and am stopping all vitamins.will keep you informed.
I am glad you found a good doctor. I sometimes wonder how the doctors opinions can vary so much though. I am seeing Dr. Crist in Missouri (I drive all the way from Dallas) and he wants you to take as much Vit C as you can tolerate up to 15,000mg. He says when you get diarrhea to back off a little. He says it works as a detox agent. he has been treating lyme for many years and has treated over 1,000 patients. It sure does make you wonder though how these 2 doctors have such different attitudes on treatment.
Were you tested for all the co-infections ticks can transmit: Babesiosis, Ehrlichiosis (HME & HGE), Bartonella, and Mycoplasma? Many people who have Lyme are co-infected, and it may affect treatment choice and progress. Many Lyme doctors believe the co-infectins need to be treated first for Lyme treatment to be effective. I had the eye twitching you described in your other post. In my case, it was from Ehrlichiosis. I think it may be in your case too because you said when you were on the Doxy, the twitching improved. From what I understand, Doxy is the best med for Ehrlicihiosis.
I feel I need to say a couple of things for you to think about. I have heard that Dr. D. does not test for co-infections and believes his protocols (either Biaxin/Plaquenil or Tetracycline) will treat all of them and this is not true. Also, Dr. Burrascano is one of the top Lyme doctors in the country and he emphasizes the importance of taking vitamins and supplements, so I cannot understand why this doctor tells patients not to take them (I had heard this about him years ago). Healthy food has all of these vitamins also, and it is important to eat well.
You may want to consider getting a second opinion. If you do, there is an excellent Lyme doctor in Wilton, CT and several in NY. If you would like any of their names just let me know.
Hi Mesmall! Sounds like you had a nice visit with your doctor in Falmouth. Glad you got to see a LLMD. He obviously listened to you and didn't make you feel bad about the visit. That's great! I hope you start feeling better soon! Good luck to you!
Dr. D's reasons for stopping b-complex was because he said thats the only compound that Lyme can't make,and I don't want to feed it.As far as the vitamin c,he explained that the Lyme needs an acidic environment to thrive and the vitamin c supplement feeds it also.He has nothing against fruit juice or fruit,just not high doses of it.He described the Lyme bacteria as like something hiding in a drawer in my house(my body).The planequil changes the ph so that we can bust open the drawer and kill the bug inside (biaxin).All he sees all day is Lyme patients and he uses these particular drugs because those are the ones that have been successful with his patients.I'm just glad I found someone who even agrees that I have Lyme!We're going to try these drugs for 3-4 months and see how I do.If I still have symptoms,will use something else.Right now,my only symptoms are the muscle twitching occasionally,and the eye twitches for about 5 minutes after I take a shower.I did take Doxy for 2 months before doing IV rocepherin for 4 weeks.I do think that these drugs took away the neck,knee,shoulder pain,but Won't be cured until the twitching stops.Right now I'm grateful to have antibiotics at all so I will try his protocol and see how I do.He didn't say to stop all vitamins,just the multi and b complex supplements.So now we have a different regime to compare (stopping the b and c that is).Lymesgal I would still like to know how your appointment with Dr. A goes,please report back ok? I guess if this doesn't work,I'd like to have backup dr.'s to see.
I like that your doctor explained to you about the Vit B & C. I still don't know why our doctors differ on this point but will ask at my next visit (2/21/06). I am also on the plaquenil/biaxin but rotate it with clindamycin/quinine every 10 days. I feel I finally herxed at the 4 week and 1 day point and stopped meds per the doctor 'til it passed. I am now back on the biaxin/plaquenil and this combo really kicks my butt. My arms seem weaker as do my legs which is my biggest problem. And I have this horrible taste in my mouth. How are you doing on the combo? I keep telling myself no pain no gain but definitely not fun. My husband gets real concerned but I just send him back to Dr. C's paperwork that states all I am going thru is good and means the meds are working. I am all but resigned to the fact that I won't see much improvement for 6 months and hopefully then it will get better. Of course Dr. C may change my meds to other combos at the 2 month point as he is known to do this so he is covering all bases (co-infections). I guess maybe his theory is you don't want the lyme to get too comfortable with any one drug. Keep me posted on how you are doing.
I know exactly what you mean about the "mettalic taste".My Dr. warned me about that and said to drink OJ or orange drink with it.I seem to get the weird tast a couple of hours after taking the meds and it gradually dissapates.I eat lots of altoids.Although I'm off the supplements,I'm still drinking the eissac tea,which is supposed to strengthen the immune system as well as heal many other things.We'll see!
Can't help you with Dr.'s, but there are lot's of people on this board that can and I'm sure will jump on with good info. I just wanted to say welcome, though I'm sorry you have Lyme. You have come to a good place for info and support.
I too am perplexed about the vitamin C. One Dr. I checked out (before we went to Dr. J's) felt that vitamin c in an IV was the best way to treat Lyme! Wow, now that is about as opposite as one can get. Shows how much even the LLD still don't know.
Do you have Lyme disease? It is very improtant to see a knowledgeable doctor. Besides Lyme, ticks can transmit several co-infections including Babesiosis, Ehrlichiosis (HME & HGE), Bartonella, and Mycoplamsa. 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.
Dr. Steven Phillips in Wilton, CT comes very highly recommended. I believe he used to be in Ridgefield. I hope you can get an appointment soon.