Re: Anyone know of a LLMD near Plymouth or Boston, MA?
Hi Lymesgal,
Sorry to hear that you are sick. Most people have to travel a long way to see a reputable LLMD. I have read that Dr. Chandra Swami in Hermitage, PA is an excellent LLMD. Is that really far from you?
I live in New York and there are only 3 LLMD's in the entire state of NY where the Lyme Disease Rate is one of the highest.
Re: Anyone know of a LLMD near Plymouth or Boston, MA?
Thanks for the info, Denise, I appreciate it! I figured I would have to travel further than MA. PA is kind of far for me. I have the names of Dr. Horowitz and a Dr. Steven Bock. I read Dr. Bock's website and it sounds great. Have you went to either of these doctors or heard anything about them? Again, thanks!
Re: Anyone know of a LLMD near Plymouth or Boston, MA?
Hi again Lymesgal,
I have heard very good things about Dr. Horowitz from other members, never heard anything about Dr. Bock, maybe he is new?
No, I didn't go to any of these doctors, I went to a doctor here on Long Island who knew a little (not a LLMD) here on Long Island who put me on Doxy for almost a year but it wasn't enough as I am coinfected with Lyme and Ehrlichiosis. So I relapsed because he didn't give me a second antibiotic.
Then because of my financial situation, I couldn't afford to see a LLMD (I wanted to see Dr. Burrascano who is on Long Island), but he wasn't taking a new patients at that time and I realized I couldn't afford him anyway.
Long story short: Someone on this Site mentioned a book written by Dr. David Jernigan, his family became infected with Lyme and he cured them so I bought his book and started following his protocols and thanks to my lucky stars, it is working and I feel so much better!!
Re: Anyone know of a LLMD near Plymouth or Boston, MA?
Hi Lymesgal,
Although I'm very new here(I just posted yesterday my story),I'm going to see Dr. Samuel Donta.I will see him Dec,2.I booked with him in July! I pray that he is indeed a LLMD as I've been told by some.He is in Falmouth and Boston.I will let you know as soon as I see him if he is a LLMD and will give you a full report.
Re: Anyone know of a LLMD near Plymouth or Boston, MA?
Hello, Mesmall! Thanks for the info., and I hope that he can help you! Good Luck! I would love to hear how your appt. goes and if it goes well I will probably book an appt., too! I've not heard of anyone else around here, so lets cross our fingers! I have an appt. on Dec. 20th with a Dr. Alonso in Fall River, she supposedly treats for lymes disease but is an Infectuous Disease doctor. You never know til you go see them, I've not had good luck so far. Let me know how everything goes, I wish you well!
Re: Anyone know of a LLMD near Plymouth or Boston, MA?
Hi Mesmall! Just wondering how you were doing since you've seen Dr. Donta? I hope you are doing better. Thank you so much for giving me Dr. Donta's name, I finally got into see him about two weeks ago. I've been waiting since November, he's very busy. He told me I had chronic lymes disease and had not been treated with enough antibiotics. He put me on Biaxin and hydroxychlor--did he put you on the same thing? I was so so relieved to hear a doctor finally say he was going to help me with my Lymes--instead of acting like I was crazy or something! Thanks again, Mesmall, and best of luck to you.
Lymesgal
Re: Anyone know of a LLMD near Plymouth or Boston, MA?
Quote:
Originally Posted by deejavu
I live in New York and there are only 3 LLMD's in the entire state of NY where the Lyme Disease Rate is one of the highest. Denise
Hi Denise,
I asked the American Lyme Disease Foundation for a referral for an LLMD in New York city. They sent me 9 names! Are you familar with their service and how reliable they are?
Re: Anyone know of a LLMD near Plymouth or Boston, MA?
Morning Prema,
I'm not awake yet
Anyway, yes, I am familiar with that association as I found them when I was searching for doctors and they mailed me a large envelope full of information and one of the pages had a list of doctors.
So I made an app't with one of the them (Dr. Cunha Burke) who claimed to be a Lyme Doctor and it was one of the worse experiences I ever had.
Dr. Burke told me that anyone with Lyme and it's coinfections are cured after 2 weeks of Doxy! Duh!
This was after I had relapsed from 8 months of taking Doxy. He said to me that I was cured and I could hardly walk at that time.
With my brain-fogged mind, I started asking him questions about Lyme that I had already researched. He didn't know anything! So being me, I gave him and his partner an education about lyme disease and I was never even billed!
I can't say this for sure, but I think that association works with the CDC which you know is soooooo outdated.
Just because this doctor didn't know squat about Lyme, doesn't mean the other doctors are not lyme literate.
Let me know what happens.
Are you feeling okay? How is your treatment going?
Re: Anyone know of a LLMD near Plymouth or Boston, MA?
Hi Lymesgal,
I'm so glad to hear that you got in with Dr. Donta.It took me 4 months to get an appointment to see him too! I put myself on doxycycline through the vet until I could see him!Funny,they treat a dog for months,but my Dr. wouldn't give me antibiotics for more than 3 weeks! Now,my sons dermetologist just put him on doxy twice a day for the rest of his teen years for acne!!GO FIGURE!
Dr. Donta also put me on the Biaxin/hydroxychloroquine combo as you.He explained to me that in order to kill the lyme,you need to bust open the cell wall with the hydroxychl;oroquine,then the Biaxin kills it.He also told me to get off all supplements.The lyme likes an acidic environment and I was feeding it lots of vitamin C which is NOT good.I know alot of people on this board take lots of it,but I stopped.He also told me that the only compound lyme can't make is B complex,and I was feeding it that too!!Many people take B complex because their deficient,but thats because the buggs are stealing it.When I started taking the combo meds,I had pain under my rib cage towards the middle.It felt like a kidney stone.Alot of my aches and pains came back too.I got discouraged when the nerve under my right eye started throbbing again constantly.After 3 months,it stopped,so I gotta beleive I'm making progress.I'm going to see him Saturday for my 4 month evaluation.I'll tell you what he says. Let me know how your progress is.Don't be afraid if all kinds of weird symptoms start happening.It happened to me and I had many moments of doubt,but I really think I'm getting better!!! We're so lucky to have found this Dr. I wanted to cry when he told me I have Lyme and I will get better!! After chasing symptoms for 2 years and being diagnose with fibro and other uncurable diseases!!! Keep in touch!!
Re: Anyone know of a LLMD near Plymouth or Boston, MA?
Denise,
Dr. Burke wasn't on the list. The one name I wondered about is Dr.Thomas Argyros. His title is Director Lyme Disease Center in NYC. Ever heard of him? I fear that the bunch of them probably only do antibiotics.
I am still on my alternative treatment. Haven't noticed anything yet but I'm sure it takes more than just a few weeks, especially since I've had this for 13 years! I was inspired by you saying you could now exercise without any problem. I used to be very athletic and have very much missed not being able to exercise.
Are you in NYC? If so, enjoy this beeeeutiful day!
Re: Anyone know of a LLMD near Plymouth or Boston, MA?
Hi Prema:
I tried to use the names given to me by the LDF. It was a waste of time. None of them were lyme literate. They had probably attended a seminar or something and that is how their names ended up on the list. This was my experience in my area. Maybe it is different in NYC.
Re: Anyone know of a LLMD near Plymouth or Boston, MA?
Quote:
Originally Posted by frango
Hi Prema:
I tried to use the names given to me by the LDF. It was a waste of time. None of them were lyme literate. They had probably attended a seminar or something and that is how their names ended up on the list. This was my experience in my area. Maybe it is different in NYC.
Frango
Thanks Frango,
That was my take as well, which is why I haven't called any of them, but just thought I'd check it out here.
Re: Anyone know of a LLMD near Plymouth or Boston, MA?
Hi Prema,
No, I never heard of Dr. Argyros, but that doesn't mean anything. No, I don't live in the city. I am out on eastern Long Island near the water. I am simply a nature girl!
Yes, it does take longer than a couple of weeks to start feeling a difference. I think I felt a difference from Dr. Jernigan's Borrelogen within 1 month. It's very powerful stuff!
I love exercising! If I don't do my routine to a tape, then I clean like crazy and get lots of exercise that way. I prefer the tapes but my house needs to be cleaned too and I have an upstairs, downstairs, so lots of climbing up and down.
I was so happy when I was able to add the weights to my routine and it didn't bother me. I always take a detox bath after my exercise and I feel like I am in heaven!
You will get there, it took me 10 years to get where I am, so just keep thinking positive thoughts!!
Re: Anyone know of a LLMD near Plymouth or Boston, MA?
Hi Mesmall Thank you for answering my posting, I was so glad to see you had responded back! Great news that your feeling better!
It's 4:07 am and I haven't slept a wink so I decided to get up and check the boards. I'm wide awake, my mind is racing like crazy and all I can do is just lie there. It happens quite a bit lately--no sleep at all. Does this happen to you? Then other days I'm so exhausted I sleep all the time. It's one extreme or the other, no rhyme or reason. I had to get up for work at 5 a.m. anyways, so I thought I'd stay up and write you back, it will help the time go by!
I'm real happy to hear that you are feeling better and that the Biaxin combo seems to be helping you! I was losing hope quickly because I feel horrible, I feel worse than I ever have. I feel like I did when the lymes was at it's worst, before I went into sort of a remission period. Well, thier back, the lymes is going at it again, I can feel it all over. I feel really strange, different. Maybe I am herxing on the meds? I don't really know much about herxing but I read about it on the boards. Something is going on and I feel so sick. I have no appetite and my anxiety level went way up. I find myself stopping in the middle of sentences and have no idea what I am talking about. I have to ask the other person--now what was I saying? I'll laugh it off to I'm just having one of those days but, it's embarassing. I did it 4 times yesterday at work. It's like I get this nervous, anxious brain fog and I don't know what is going on, I feel lost for words from one second to the next.
Mesmall, I DID cry when Dr. Donta told me he was going to help me get thru this, I cried because someone FINALLY heard me. Finally. He left the room and I had tears running down my face--his nurse was so nice to me. I bet they see people cry like that all the time. It's so emotional.
I've been on the biaxin combo for 8 days now. How soon did you feel bad after taking them, was it right away? Your posting was very encouraging to me, I felt soooo much better after I read it. Thanks. It's given me some hope. I would love to hear about your 4 month checkup up, please let me know how you're doing!
Well, it's now 4:47 a.m., time to get ready for work. It's going to be a loooooong day. LOL
Re: Anyone know of a LLMD near Plymouth or Boston, MA?
Hi Lymesgal,
Sorry your feeling so bad right now,but it does mean that things are dying! Did the nurse tell you you would get worse for a while and not to be afraid??? I got worse about a week after starting the Biaxin combo.My eyelids started fluttering,neck pain and clicking,muscle pains increased and intesified and I even had one night where I was shaking with chills.I called the dr. and they just said to hang in.Old symptoms came back too such as shin pain.I think your in the hardest phase right now and will start having good days soon.After the first week of hell,I had good days in between bad days.One thing you must know is to get off of artificial sweeteners if you use them!!Through my research and a kinsiologist I saw,I found that they steal your serotonin,which makes you feel real bad.When I stopped drinking diet sodas and eating the sugarfree mints the brainfog got remarkably better!!! I also walk everyday even when I don't feel like it.I always feel better after.I have a dog that needs to walk so I really have no choice anyway.I drink yogi detox tea every afternoon as well as eissac tea daily seeing I'm not allowed supplements.
I must admit,I was ready to go marching into the Dr.'s office and insist that the meds wern't working and I'm only worse,until the 3 month mark,when I woke up and the throbbing nerve under my eye had stopped!!!
Another thing I did was to stop using anything with caffeine.It's a nervouse system stimulent and you don't need that right now.I felt alot better when I switched to decaf tea,much calmer.I also took a benydryl pill at night which knocks me out and clears up allergy symptoms without the sleeping pill hangover.
Hope some of these suggestions help,I will report back after my appointment this week.Stay positive,they know what their doing!!!
Re: Anyone know of a LLMD near Plymouth or Boston, MA?
Hey Mesmall,
Thanks for the info--I'm an avid Diet Mountain Dew drinker, everyday, it's about all I drink besides tea (as well as decafinated tea) and coffee. I had never heard that about the diet soda's (artificial sweetener--does that mean splenda, too?) and caffeine. I'm gonna change that right away. Your right, it can't be helping the situation. My body is loaded with caffeine!
I did call and leave a message on Dr. Donta's ans. machine today, just to let them know how I was feeling and if this would be normal. They really didn't tell me what to expect with the antibiotics but there was so much to talk about and such little time that I'm sure they forgot to tell me how bad it was going to get before it got better. I figured as much but wasn't ready for all this. I've been vomitting all morning, can't eat, I'm sick sick sick. I'm feeling like I don't want to take the antibiotics today, afraid I'll get sicker but after reading what you wrote I know I should just stick with it. They sent me home from work so I finally got a few hrs. of sleep this morning, hopefully I'll feel better as I'm able to keep food down. I just feel weak at this point. All those wormy spirochetes must be in a tizzy right now and they are surely fighting back! This buzzing/ringing in my ears has increased quite a bit, another reason for not being able to sleep well. Do you have that? It drives me nuts!
Good luck this Saturday, hope it goes well for you!
Thanks again, Mesmall! I'll look forward to hearing from you
Oh, and can you believe it's snowing right now on the Cape?! Crazy!
Re: Anyone know of a LLMD near Plymouth or Boston, MA?
HI Lymesgal,
Stay away from Splenda too!!! It's just as bad as nutrasweet.Nutrasweet is like ingesting formaldehyde chemically in your body and Splenda is like ingesting pesticides.My Dr. told me not to ingest ANYTHING made in a lab!!He scolded me for trying to save 12 calories by not eating sugar and ingesting poison!! I know that after 3 days of being off Splenda(in my tea)and diet sodas,I felt much more alert.There's alot of info on this.I read an article on the Dangers of splenda (you could google this and read up on it).
I don't think that I was as sick as you sound right now,but I had the Lyme for 2 years.You may have had it longer which is why your worse.My symptoms are muscle twitching,cramps,aches and pains like arthritis.
Hang in there and get off that diet mountain dew.You might get headaches from caffeine withdrawal,but only for a day.You may have to wean off the caffeine,but definately get off the diet stuff!
Keep in touch
Mesmall
Re: Anyone know of a LLMD near Plymouth or Boston, MA?
Hello again, Mesmall
Splenda is out of my diet from now on. I thought it was better than Equal so I switched. I will work on the Diet Dew, I know how those caffeine headaches can get, been there tried that! I've tried forever to get off of it but I'm so addicted! I'll try anything to get rid of this brainfog though. It's gonna be rough!
Today I talked with Dr. Donta's office and the nurse said to go back down to two pills/day then go back up to to 4 again after a week. She said it's quite normal because the Lymes is reacting to the drug. She said to hang in there, it should get better. You were right!
I don't know how long I've had my lymes, I suspect 3-4 yrs. but who knows? I know what you mean about all the joint pain, that has been one of my biggest problems although it has been worse than it is now. I use ibuprofin although Dr. Donta said it's not an inflammation that is in the joint, it is the bacteria that causes the pain. He talks pretty fast, I was trying to take it all in. I love Dr. Donta!!!!
So what area of the Cape are you from? I am in south Plymouth.
It's given me some hope. I would love to hear about your 4 month checkup up, please let me know how you're doing!
