quote:Originally posted by sofy: Their was a similar discussion, not long ago, about my Dr, Dr. K, in Ct and his full name was used in the heading and no one said anything.
lymebrat
Frequent Contributor (1K+ posts)
Member # 3208
posted
Hi Sofy,
As many here will tell you, I think a great deal about Dr.D. He saved my life!
When I first went to see him , I was at my wits end..I was told the pain was in my head, told I was "cured" of lyme..
I couldn't walk on my right leg, I could barely use my right hand, I was stuttering, having memory problems, I was extremely exhausted, i spent most days on the couch taking Vicodin for the pain..just so I could make it through the day.
Them I met Dr.D. He took my hand in his and assured me that "it" was not all in my head and that he would do his best to get me better..
He even had a nice heart to heart with my husband about how sick I was and what he could do to help out..
That was 4 years ago.
Today I consider myself as "cured" as one can be with Lyme. I have been off all meds since April 2004 and am doing very well.
And the best part is that I am happy again..I have the energy to play with my children again and I'm the kind of mom, I always wanted to be for them.
Dr.D has a special place in my heart... he believed me when no one( including my family) else did...
He has always fit me in for emergency visits, he emails me within hours of receiving my emails... and he has always treated me with the utmost respect and has given me top quality care.
So I guess one could say that Yes, I do go to Dr.D and yes, I do think he is a good LLMD...lol
~LymeBrat
P.S... don't worry about posting his name. I did that once as well And I was told that as Dr.Donta is one of the leading researchers for Lyme Disease and that his name and articles are on this site, that it was okay to use his name..
lla2
Frequent Contributor (1K+ posts)
Member # 2364
posted
I know some have had good luck. but when i went to see him 2 years ago, had i stayed with him, I htink I'd be dead right now. He 's a wonderful man and researcher, but he gives the same meds to everyone to back up his research..he woulld not and did not treat nor test me for coinfections. YOu'll notice his articles NEVER mention coinfections at all...and never say that pcrs are effective. (that's the only way to test for coinfections and he doesnt' believe they're effective!!)\
I began to have seizures that he could not explain, and he did not want to test me for bartonella even though it's the leaading coinfection in RI, and 85% of hte ticks carry it! I went downhill fast after that...
I made the decision to leave him when i started to have trouble walking and talking with the seizures etc...i went to another llmd who began immediate treatment of bart of babs adn tested me for both. I was highly positive for both!
I"ve gotten treatment for everything including lyme and now i'm off abx and on some alternative treatments and doing great! about 95% better now....but I lost 8 months of my life, adn 8 months I could have been getting better instead of worse....it took 2 adn 1/2 years to get better because of the time I lost...
so you've heard the good and the bad...you have to decide for yourself....that's what it's always about anyway..no one dr. is good for everyone...
but for me, dr. d was not good...I needed to move on to a dr. who would test and treat my coinfections...maybe enough got sicker without coinfection treatment so he finally started doing it??? I don't know. I know a gal in my support grouop who is permanantly disable and in a wheelchair because of his non testing at the time and non treatment of coinfections....
am I bitter..yes...I got a lot sicker over the 8 months I was with him, and I still have to take meds for my seizures , just in case...so yes, I"m bitter...but I also consider myself blessed that people on here told me about ohter llmds that i could go to at the time....I made a choice that was RIGHT FOR ME...
you have to do the same ....no one can make it for you...
Lisa
[This message has been edited by lla2 (edited 12 March 2005).]
[This message has been edited by lla2 (edited 12 March 2005).]
Posts: 4713 | From saunderstown, ri Usa | Registered: Apr 2002
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lymebrat
Frequent Contributor (1K+ posts)
Member # 3208
posted
I agree, the choice is 100% up to you sofy!!!
All I can say is, had I listened to the nay Sayers here, who told me that Dr.D would not test or treat co-infections and would only give me tetracycline....., who knows where I would be today???
But I trusted my instinct..I met with the man and I thank God every day that I made the choice to see him.
I began seeing Dr.D in April of 2002 and I WAS tested for coinfections... TWICE and I was given Levaquin for the Bart.
I was never given Tetracycline..I was on Biaxin, Plaquenil, Minocycline, & Levaquin, a combination of antibiotics that saved my life.
I have been off ALL meds since April 2004 and I am doing very well...
I can only speak for myself, I am a current patient of Dr.D's and can tell you that in my case, I was tested and treated for coinfections....
I wish you luck no matter who you decide to go to..the goal is to get well!!!!
henson2
Frequent Contributor (1K+ posts)
Member # 463
posted
Hi,
I'm a patient of Dr. D. and I am very happy with him, too. He did test me for the co-infections. He also saved my life, after I'd gone for more than 5 years misdiagnosed.
We've done many different Oral abx, and I was on IV Claforan for a while, too. I found that if I tell him I want to try something, he is openminded. But he also tells me what he really thinks, and it doesn't always agree with other LLMD's conclusions.
But that is the problem, we know so little about Tick Borne Diseases; even the experts sometimes have different opinions. One has to just keep trying different things until the right comb works. Choose someone and stick with them for a while, give their protocol a chance.
posted
you know, I guess I don't completely understand this policy, at least WRT Donta. Maybe they don't want unwanted advertising. But it's not like the bad guys don't know about Dr. Donta. In fact, they're such worms I'm sure they have a masterlist somewhere of most of the LLMD's out there...it's the LLMD local docs, who tangentially treat lyme when it happens with extended abx that really need protection. Don't get me wrong, I'm not arguing with the policy, I'm just curious about some aspects of it.
lla2
Frequent Contributor (1K+ posts)
Member # 2364
posted
what if you had needed mepron for babesia? I KNOW he wouldn't have treated for that..what would you have done then? you're one of hte lucky ones that didn't need babs treatment...many of us did...
and you're right ..it should always say dr. D...unless we have express permission to say a full dr. name like we do with dr. jones...But we do have a right to express opinions and there are always going to be good and bad opinions..there are always good adn not so good things to say about every doc...even the best lllmds have some naysay-ers on this board....
no one is saying that..go with what you feel you need to do after you get all the info..it's your body and your decision...youll find what works for you..and if it doesn't..THEN change...many of us have from all different doctors many times over again! THat's what great about patients choice!
Lisa
Lisa
Posts: 4713 | From saunderstown, ri Usa | Registered: Apr 2002
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Foggy
Frequent Contributor (1K+ posts)
Member # 1584
posted
We all have different conditions and reactions to treatments are idiosyncratic. I spent close to a year with him and made little progress. I could barely get out of bed let alone drive.
Another LLMD said testing for chronic Babs is also notoriously unreliable. Remember, many of us had multiple bites decades ago. My symptoms screamed Babs. I was one of the "Unlucky ones." I had chronic Babs and he wouldn't treat me with Mepron. I also have metals problems that were not addressed.
I switched LLMDs and was treated for Babs Bart, and metals with a host of individual meds tailored to me. I made more progress in 3 months on Mepron, Septra, and a Macrolide than the aforementioned year. For me me the proof was my reaction to my individualized treatment.
[This message has been edited by Foggy (edited 14 March 2005).]
Posts: 2451 | From Lyme Central | Registered: Aug 2001
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