There are differences of opinion among the good docs, presumably because so much is unknown and they are treating empirically. No textbook on this yet.
It seems to be that there are differences of opinions even the within the ILADS community of doctors, which to me makes sense. I think all doctors have their own opinions.
So rather than drive myself completely crazy, I've decided to see Dr. D and follow his treatment keeping in mind where he differs (vitamins, coinfections....).
I figure I can always switch if I don't feel it's working.
He started me on Amoxicillian because I'm weaning my baby, but I know he plans to give me the same two drugs that you mentioned.
Did he tell you why two, how they work together and how they are different?
I have a list of questions for him. Did you have time to ask your questions?
The Biaxin and Plaquenil combo was among the absolute best for me - I made a lot of progress on it and felt better in general while on it. Everyone is so different, though, I think sometimes it's a trial and error to see what abx will hit the particular strain of Lyme that you have.
I started to have some "good" Herxes on it and didn't feel I could afford to Herx that much while in school, so we went to amoxy (it was "gentler" for me) -- now I actually want to talk with him about getting back on the Biaxin / Plaquenil.
Yes, there is research that says the Plaquenil makes the abx more effective -- changes the pH balance in the cells.
I read that many other LLMDs follow his protocol on this.
I too did not know what to make of his view on supplements, but I decided to stick with his opinion and see if it helped. I have improved greatly on his protocol. I think there just isn't a consensus on many issues even w/in the community of experts.
He did instruct me to eat a lot of good foods, so I would get nutrients from the foods. And I once tried an experiment. He said esp. not to take B vitamins, but I heard B vitamins can really help; so I tried taking them. Who knows if it was psychological or not, but I really did feel worse.
However, everyone is different!! I myself don't know what to make of that view, but decided to do what he asked while under his care.
His office is often backed up, I know. Whenever I start feeling annoyed about waiting, I tell myself that he keeps taking new patients -- he does not turn people away. And with the few number of good LLMDs, I am thankful for that. He is so overworked, but I feel like we all really need him. I wish he were training another doctor to work under/with him.
Sometimes we get "support group" type conversations going in his office!!
Best of luck with the protocol! Sending you warm wishes to beat this disease soon!
Lisa
thank god we have researchers, his protocol just didn't work for me, that's all..
lisa
I forgot to mention that he said I could take calcium supplements and vitamin D.
He never asked me to sign a research consent form so I'm not sure he uses my responses for research. A doctor relative says a Dr must have you sign a consent form before you are part of any research.
My understanding from a long talk we had was that he really does think that adding certain supplements will increase the activity of the 'keets. He has training as a microbiologist.
I'm supposed to see him again in late May. Anyone in the office give a holler and say, "Is Henson in the office today?" LOL! We have had some good talks in the waiting room in the past.
Best of luck to you! Many good wishes to everyone. We must beat this disease!
It makes sense to me that if Lyme causes us to be low in B vitamins, and C and whatever, that we'd better be supplementing.
If you're already low in these vitamins and you deprive yourself further, how can you expect your body to get well?
------------------
oops!
Lymetutu
Lyme is an immunosuppressive disease and so our immune systems are already compromised...IMO I'd take the vitamins anyway!
nan
Unfortunately when people start stating opinions as facts, things get very confusing.
1st. Dr D. does allow you to take certain vitamins. My dr. spoke with Dr.D and from what I understood is that; Dr. D chooses meds that will increase the Alkalinity in cells where Lyme lives, in order to kill the spirochetes... so only vitamins that would not increase the acidity of the body were okay to use.
I took many supplements with dr.d's okay, ..I took Lutien, Bilberry, Vit.A, Vit E, and other vitamins/antioxidants to help restore and revive my immune system and increase my bodies alkalinity.
So you can take vitamins, just email Dr. D or ask your doctor to speak with him about which ones he would okay you to take.
2nd. I am so tired of hearing that Dr.D treats all patients with Tetracycline..this statement is simply untrue. The fact is that I have been his patient for 4 years and he never had me on tetracycline. And I have many other friends who see Dr.D and they were never on Tetracycline either.
That said, I do know a few people who he did prescribe tetracycline to, as it was the drug they needed to help with thier particular symptoms..but it isn't the "only drug" that he uses with Biaxin and Plaq. I was on Mino.
3rd. I was never told my treatment was for research purposes, nor did I sign a paper to that effect. And most importantly, I was never treated like a research figure. Dr.D treated me as an individual, not a research paper and thanks to him, I am alive today.
True Dr.D is one of the worlds leading researchers for Lyme Disease, and in my opinion the Lyme Community is darn lucky to have such a dedicated LLMD on our side doing this extensive research to help us find a cure for this disease.
But I think it is unfair and untrue to say that all his patients, myself included, are all treated the same for "research purposes"... I know I was treated as an individual and received excellent care.
And 4th. Just to clear the air, another untruth that has been told many times on this board, is that Dr.D never tests for co-infections. Well the FACT is that I was not only tested once for coinfections, I was tested twice. And I was prescribed Levaquin. So the fact is that he obviously does test for Coinfections and he treats it as well.
............................
I am a current patient of Dr.D's and am only telling you what he has done for me. I am telling you facts about how Dr.D is treating his patients today, not years ago....
If once upon a time he did things differently, I have no first hand knowledge about that to write about. I can only tell you how he is treating me, a current patient.
But I do know that for over 3 years I have continued to see these same untruths posted by people who no longer go to Dr. D,..... even though myself and many others have stated time and time again that these things are no longer true.
I have had Lyme disease for over 15 years, I was diagnosed in 2000 when I was reinfected. When I started seeing Dr.D, I was all but paralyzed on my right side, I could barely walk, I couldn't write, my memory was awful, I stuttered, mixed up my words, I was in chronic severe pain,... I spent most days on the couch or in bed on pain pills to help me get through the day and the worst pain of all, was that I had a 4 year old son and a 2 year old daughter who had a sick mommy who wasn't able to play with them. And here I am 4 years later...off all meds and doing wonderful. I have my life back, I am working again, and most importantly I am a healthy happy mom to my now 8 year old son and 6 year old daughter. They now have a mom who is able to play with them!!!
Thanks to one man, Dr.D.!!!!! So he must be doing something right! LOL! 
okay now that I got that off my chest I can answer Ibelieve's post..
I have been a patient of Dr.D's since April of 2001. I was on Biaxin and Plaq and these did help me a great deal, but as I was still having neuro issues, he added Minocycline as well.
Today I am happy to report that I am doing very well. About 95% better and have been off ALL medications since April of 2004...1 YEAR!!!
Wishing you wellness,
~LymeBrat
[This message has been edited by lymebrat (edited 08 April 2005).]
i have heard some really great things about dr. d.
i responded very badly to plaq/biaxin (not under dr. d) but that has been the saving grace for others.
dr. d probably is the foremost respected researcher on treating chronic lyme in the US.
dr. b has done more empiric work than dr. d but hasn't done, or rather published, any theraputic trials for the medical community to review.
[This message has been edited by zipzip (edited 08 April 2005).]
this comes from three (3) very well respected llmds to my ears..I did NOT make this up..ths is the only reason I passed this along. THey also told me that he is an excellent researcher, however, will not go outside the norms for his meds to treat with cephloporans, or other macrolides than biaxin etc....
he has a very strict tx protocol and sticks with it..it works very well for some..but not for others...i for one got very very sick on his protocol because he wouldn't treat my babesia...
luckily someone without babs might do well...my vits were also very out of wack by the time i left him , adn i had to do iv vits to get them back on track...I was a messs...
this is just my experience, adn what I got from the mouths of three Very experienced adn 'well respected' llmds...it is not conjecture....
doesnt mean he can't help some people...he has , adn will continue to do so.
Lisa
[This message has been edited by lla2 (edited 11 April 2005).]
Regarding Biaxin(or any macrolide abx) and Plaquenil, are there gender differences in response?
Women might do better than do better than men on this combo?
Judging solely from this thread, one female does excellent, and one male has a negative experience. No formal tally done for this thread. But I thought there might be something here.
I'm male, and I once did a short course of plaquenil and,doxycycline. While on this, I experienced very blurred vision, so I stopped it, having read the literature on
its effect on the eye.
Has anyone read of associations between plaquenil and:
1. Ethinicity? I'm part descendant from that cartoon character 'Hagar The Horrible', and German. My light brown hair turns red in the sum.(recessive red hair gene)
2. Race?
3. Genetic Tissue Types?
3a. Hla-DR2?
3b. Hla-DR4
3c. Other tissue type markers
4. Eye color? I have very deep blue-colored eyes.
5. Hair color?
How about other abx, or abx combinations, and possible correlations with respect to the questons above?
I think that by knowing these associations and responses to medicines would better help towards a positive response.
What do you think?
Thanx pq
[This message has been edited by pq (edited 08 April 2005).]
[This message has been edited by pq (edited 08 April 2005).]
[This message has been edited by pq (edited 08 April 2005).]
quote:
Originally posted by lla2:
i for one got very very sick on his protocol because he wouldn't treat my babesia...Lisa
Ditto, and I didn't make any progress until I went to another LLMD and added Mepron to my regimen. I also have metals problems that had to be adressed. Every case is different, but you got to do what works for you.
That said, I'm appreciative of his skills and hope we will all benefit from his research.
[This message has been edited by Foggy (edited 08 April 2005).]
quote:
Originally posted by lla2:
...my vits were also very out of wack by the time i left him , adn i had to do iv vits to get them back on track...I was a messs...Lisa
groovy, maybe you missed this part
they made this mistake with me, and I was very very sick..like a herx... so take it slow and easy if you add in vits...and start boosting your immune system..it willl kill off more keets and you WILL feel sicker..take it slow ok?
Lisa
[This message has been edited by lla2 (edited 08 April 2005).]
Thank God for doctors who are dedicated!
I too feel very fortunate to have such a wonderful Doctor. He is very caring & reassuring and understands Lyme a lot better than I do and certainly better than almost any other Doctor.
He understands what I am going through. I think he is recommending what he feels is best for me. I feel he is treating me as an individual not as a statistic. He listens very carefully and asks a lot of questions.
I absolutely do not feel he is making recommendations because they are part of his research. I do however hope he will continue his research.
I have never had to wait for my appointment. He was exactly on time and took lots of time with me and never made me feel rushed.
I doubt he gets many breaks in his very busy days. I hope he gets vacations so he won't burn out. He works very hard and cares a lot about us.
He does vary his treatment depending on the time of year because of sun-sensitivity. Last summer was hell for me on Doxy. I'm glad he's taking me off the tetra before I instantly fry in the sun again.
I'm switching to Plaquenil & Biaxin in early May and hoping for the best.
hatsnscarfs
and yes, he IS good about answering emails....has he tested you for babesia yet??? about 80% of the ticks in Mass, ct adn RI carry babesia ....are you aware of that ?
just keeping you informed...trying to get you to see that he always uses the same pattern with EVERYONE...everyone's lyme is NOT THE SAME>>>some have babs and need treatment and will get much sicker without it...I DID>>PLEASE be careful..
that's all.
[This message has been edited by lla2 (edited 11 April 2005).]
Some people- with Felty's or Reynaud's are already on the cusp of B deficiency - and some abx can send them over the edge - then they get mouth ulcers, cracks in the corners of the mouth - or extreme tiredness..
This can be a problem for some people when witholding B vits during abx therapy- especially when on drugs like Hydroxychloroquine which deplete them even more.
So I think that's a topic for the patient and the Doc if any of the symptoms crop up.
Barb
IT is difficult to sit back and watch while others are going through the same thing and not say anything. So from now one I will not.
If anyone would like further info please feel free to contact me via email...only serious inquiries will be answered. please do not write to bad mouth me, as I was only trying to be helpful . I am not here to badmouth anyone...only to give helpful information
I am not going to open this post anymore, as I cannot stand to see people heading down this same path without speaking my mind, and obviously that is NOT a good thing..and others do not want me to do that...so that's cool...
best to all on this ...
Lisa
[This message has been edited by lla2 (edited 11 April 2005).]
hmmm...i'ts april..didn't I say he'd start switching his patients to biaxin and plaquenil just about now??? what a surprise....
So, what is your point? And why is it a surprise? It doesn't surprise me at all..lol! Most doctors who know anything about antibiotics, will take their patients off antibiotics that may cause reactions due to sun sensitivity.
It is clear to everyone here that you dislike Dr.D. I am sorry you had such a bad experience. I can only share my experience with him.
He saved my life. He tested me for coinfections, he treated me for Bart. He never gave me Tetra and I was never treated like a research guinia pig.
He gave me back my life and gave my kids back a healthy happy mom..so he msut be doing something right
Best wishes
------------------
When choosing a doctor, it seems important to do research in advance and describe the kind of treatment you're looking for. That not only saves you time and money if a doctor turns out to be wrong for you, but it puts you in the strongest bargaining position. Remember, the only objective in seeing a Lyme doctor is to get well.
There are some patients who prefer the philosophy of taking weak to mid-strength drugs over a longer period of time. This approach is often found among the more established LLMDs, since that was, until recently, the only option for Lyme patients--and also, in some cases, it keeps a patient coming back to the office for longer periods of time. But that's not everyone, it's just something to be cautious about.
Right now, there are stronger and stronger antibiotic combinations available. Some of them can be TOO strong! Also, more people do seem to associate chronic Lyme with the existence of co-infections.
The biaxin/plaquenil combination honestly is in the weaker category. Maybe it's a way to check how you react, before moving on to heavier abx? If others have gotten well on this, by all means, post your experience.
I can say that three weeks ago, I was on the verge of a complete relapse of everything. On my current tough abx combo, I'm seeing lightning fast improvement. At this rate, in another month I should be able to work full-time (I have a very high stress job), even if I have to stay on these drugs for several years. Feeling well is MUCH more fun than feeling sick, so I'd suggest to anyone who can tolerate strong abx to give them a tryout.
I agree, we all need to share our good and bad experiences with our doctors. But to REPEATEDLY post untruths about a LLMD who is greatly respected by many here, and the Lyme community, isn't acceptable in my opinion.
This has been happening since I first came here. When I posted I was going to Dr.D, Lisa was one of the first to respond to my post.. to warn me to not go to him..I am truly sorry she had a bad experience and that Dr.D was not a good doctor for her..but i can't just sit back and let others think that some of the stuff being posted here are true.
The truth is Dr.D saved my life. When I first went to Dr.D I was living on pain pills and truly wondered if I'd live to see my kids grow up. He held my hands and while I cried and even talked to my husband to help him better understand what he could do to help me... He is a wonderful man and LLMD>
Now here I am 3 years later off all meds and doing amazingly well.
So I just want to get my point across, that some of the stuff that is being repeatedly posted here are untrue. And as we are a health board designed to help patients with Lyme disease, I think it could be very harmful to patients who may be considering seeing Dr.D to read these out dated statements from a patient who hasn't been to him in years.
I am a current patient. I have been tested for all 3 co infections..Bart, babs and ericl. not once, but twice. i tested positive for Bart and was treated with levaquin.
So while years ago, it may have been true that he "Never" tested for coinfecitons..it is clearly not the case today and I think it is a shame and does a disservice to the lyme community to continue to post such things.
And blanket statements about he only treats with Tetra are untrue as well. I and many others here were never given Tetra...
And sorry, but I don't see how it is productive or helping others, by making jabs at Dr.D about him switching meds in April...all good LLMD's switch their patients to other meds that do not have sun sensitivity as a side effect, in the spring.
It's just hard to sit here and read untruths over and over again about a man who is one of the leading researchers for Lyme Disease, a man who many including myself credit to giving us our lives back.
I understand we can't all like every doctor. But this is a board to help others with lyme. And I just don't see how continuing to post things that many posters have said are no longer true is helping anyone.
All I know is what I have experienced as a CURRENT patient of Dr.D's. I don't know what he did years ago, I only know how he is treating me and many others here TODAY.
Like many good doctors, I hope he learned from his past mistakes, and will continue to adjust his treatment of Lyme patients as new research and information is provided.
I respect every person here and their opinions. I am just asking that things be stated as opinions not fact, when someone hasn't seen a particular doctor in years.
And maybe I'm too emotional about all this, as my little girl is very sick again and I have to take her back to the Children's hospital.... and whe she was first sick, I emailed Dr.D and he emailed me the very same day to bring her to see him the very next day. (It took me months to get to see other LLMD's.)
But in my opinion, implying that patients of Dr.D's are guinea pigs for his research.... or saying that we only see him as he takes insurance or is close by as stated in Lisa's post, is a slap in the face to all of us who go to Dr.D.
Nothing good can come from statements such as these. IMHO
Best wishes to all.
~LymeBrat
hope you are feeling better. The Biaxin and Plaq alone worked a little for me...it was when the Minocycline was added to the mix that I started to see great improvements!
Mino is a very strong antibiotic and hit me hard. I was in bed for 11 days with a bad herx and finally had to go off of it for a while as I was so bad.
This trio is what worked for me. Along with the Levaquin for the Bart..the Lavaquin hit me hard as well and actually caused such leg pain I had to be on cruthces for almost 2 weeks, but it did the trick, so I won't complain too much.
I sure hope you find a combination that will work for you. I never thought I would get my life back, and I thank God everyday for my new found health.
Wishing you wellness
~LymeBrat
My current PCP is going to talk with Dr. D about his treatment plan for me. It was his article on Late and Chronic Lyme, which I read, that made me think lyme was what was going on with me. He hit the nail on the head with my symptoms...which I hadn't read elsewhere.
I am grateful to him for his article, and share it with others who have mysterious symptoms.
I am hopeful to be well like you too, someday.
Thanks for posting encouraging words....Tina
i"m happy from you..however there are many in my support group who are crippled in wheelchairs, and worse from his lack of treatment...makes it very difficult to keep my mouth shut...
so while i'm very happy for you and the ones he did help..there is also a flip side of hte coin...one I see every month at my support group...the faces of the ones he injured more by NOT treating them properly, and letting valuable time pass while refusing to test and treat...
i'm sorry if the truth hurts, but BOTH sides need to be told, and then each individual can then make an intellegent decision...YOu had hte chance to make one, and look how well it worked out for you...
thank god we all have our own minds to make up! usually when i see a post that wants opinions it usually doesn't JUST mean the GOOD ones....
Lisa
[This message has been edited by lla2 (edited 15 April 2005).]
"i'm sorry if the truth hurts, but BOTH sides need to be told, and then each individual can then make an intellegent decision...YOu had hte chance to make one, and look how well it worked out for you...
thank god we all have our own minds to make up! usually when i see a post that wants opinions it usually doesn't JUST mean the GOOD ones...."
yes Lisa, I agree both sides do need to be told as I stated. And it's not the truth that hurts..it's the constant posting untruths that hurt.
As I said you haven't been a patient of Dr.d's for years so you can not possibly know how he is treating his patents Today.
To continue to say he never tests for coinfections is wrong as I and others have said he does test. I was tested twice.
And I was put on Levaquin for the Bart.
And to say he only treats with Tetra is wrong, as I and most of the patients I know who go to him have Never been prescribed Tetra.
And to imply we are all simply guinea pigs for his research is an injustice to both Dr.D and all of us who he has helped. He treats me as an individual..he cares about me and my children.
He even answers my emails on his vacations and made special arrangements to see both of my children immediately while we were waiting for appointments with Dr.Jones.
To state that he won't let his patients take vitamins is untrue as well as myself and many others have repeatedly stated that we can take some vitamins..just email him or have the doctor call and he will tell you which ones are okay.
And it's not rocket science to say Dr.D will take his patients off medications that have sun sensitivity as a side effect...any doctor worth his degree will do this.
Of course I welcome all opinions..and I respect all opinions. I just wish that when you made these statements you made sure others knew that you haven't been a patient of dr.D's for "years" and that these are your "opinions" NOT "facts"...what you post makes them sound like they are facts and that is not fair to other lyme people coming to this board looking for help..
The bottom line is that this board is to help others and I just don't see how stating opinions as facts or out dated information is going to help those who are seeking medical help.
I just got a call about a month ago from one of my husband's co workers. Her 16 year old daughter was unable to walk or talk.
I sent her Dr.D.. he saw her with in 4 days and started her on IV antibiotics ( not tetra 
) and I just got an email from the mom telling me that her daughter is now walking with the use of a walker and is now talking.
Had this woman come here looking for help, maybe she wouldn't have gone to Dr.d because of what she read here.
And this woman whom I have never met, called me crying to thank me for sending her to Dr.D.. stating that he gave her baby back to her.
So obviously it is not like I am one of the few patients whom Dr.D has helped. He is an excellent LLMD.
But like all doctors, not every patient is going to like them. And I understand and respect that.
All I ask is that you please respect me and all of Dr.D's current patients and not imply that we are somehow lyme research guinea pigs or that we go to him as he takes insurance or is handy.
Heck I take my kids to CT to see Dr.J every 3 months. I would travel across the world if I thought I need to, in order to get treated. But I am fortunate that Dr. D is only a 2 hour drive.
Anyways, I don't want any hard feeling over this. I like and respect you. And I do value your opinion and feelings.
Best wishes,
LymeBrat
so maybe it depends on what stage of lyme your in or whatever..they also were told absolutley NO vitamins whatsoever, becasue we had a guest speaker come and talk about the importance of vitamins during lyme disase etc...
anoher of my support group had been seeing him for over a year and just stopped about 6 months ago adn is now in a wheelchair adn was NOT tested for coinfections..
maybe you were lucky because you knew enought to ASK to be tested and treated etc....these others weren't so lucky.He put them right on tetracycline for 4 months, then right to biaxin and plaquenil...
And it's only been a year and 1/2 since i went to him anyway..
again, i'm happy you got better. Being an informed consumer really helped , i'm sure...I didn't know these people until they came already really sick to our support group, adn then ended up switching to new drs...sorry ....
maybe he has some people in his research ((has to have some to continue his research!) , and others he doesn't etc...
glad it worked so well for you..just presenting the other side. I really liked Dr. D, he just wasnt' going to get me well.
lisa
[This message has been edited by lla2 (edited 16 April 2005).]
I saw him recently and asked about it and some of the other antibiotics mentioned here. He said Doxycycline would take care of Bartonella. I'll probably do IV for the neuro stuff anyway.
I asked him about Mepron for Babesiosis and he wouldn't prescribe it for me. He tested me but it doesn't seem like he thinks it becomes chronic, although my symptoms point in that direction.
He's a brilliant researcher and a really nice guy. I get the feeling that if anyone in "our camp" makes a breakthrough in discovering an effective antidote, he's the man.
He helped me do a treatment of IV Claforan. I am not sure that he has all his patients do that.
I feel like Lisa has made her points and anyone who is thinking about going to him will have another viewpoint to consider.
I for one am really really happy with him.
Best wishes to everyone!