LymeNet Flash: Dr. D (Cape Cod), supplements and probiotics

This is topic Dr. D (Cape Cod), supplements and probiotics in forum Medical Questions at LymeNet Flash.

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Posted by tickedntx (Member # 5660) on :

My mother is being treated by Dr. D. I know his treatment is controversial and I would have preferred that my parents see someone else, but his office is close to their home on Cape Cod, he is willing to guide their treatment long-distance while they are in FL for the winter since they were dropped by Dr. C in Temple Terrace, and he is a very kind man, so he really is their only/best option.

Prior to starting treatment a couple weeks ago with Biaxin and Plaquenil, my mother was taking a multi-vitamin and a B Complex vitamin. He told her to stop those, but he didn't suggest that she add anything else. He didn't even recommend probiotics.

I have read that there are only certain supplements that Dr. D instructs his patients not to take. Obviously, the multis and B vitamins are two of those.

- Can anyone tell me what other supplements he instructs his patients not to take?

- Any that he does suggest but may have forgotten to tell my parents about?

- What is his position on probiotics?

Thanks in advance to anyone who can help,
Suzanne

Posted by arg82 (Member # 161) on :

Hi Suzanne,

I believe he instructs his patients not to take any supplements. He doesn't give instructions for taking acidophilus but I do believe he thinks his patients should be taking it. So, I think your mother will need to figure out her own dosages and timing for it. Some people here could probably suggest good brands (I get one from my doctor's office called Co-Biotic) and how often to take them (I take two pills three times a day).

Peace and healing,
Annie

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Posted by sofy (Member # 5721) on :

sorry for the triple posts, there is no delete

[This message has been edited by sofy (edited 10 August 2005).]

Posted by sofy (Member # 5721) on :

quote:
Originally posted by sofy:
I just saw him for the first time.
I saw another doc for over a year and took a ton of supplements and didnt get one bit better so I have nothing to loose following his protocol for a while.
He said no vitamins, antioxidents like the coQ10 I was taking and vit c is a no no.
I had osteopinia so have to take supplements for my bones so I will be taking calcium, magnesium , zinc, copper boron and vit d and k.
I had a terrible time finding one that didnt have vit c or b in it but finally found one and ordered it.
He was ok with those supplements and the probiotic I take. No doc ever told me how to take probiotic. I tried a zillion of them until I found Primal Defense and it works for me and Im sticking with it.
I wish your mother well.
He didnt say anything but I do follow a very healthy diet so that I get all my vitamins thru food. Lots of fresh organic greens etc.
I also take vegetable digestive enzymes with each meal to be sure Im using what I eat.

Forgot I also take a tablespoon of fresh ground milk thistle and flax every day and he said that was ok

Posted by sofy (Member # 5721) on :

Posted by Lyddie on :

I and my family have been using Dr. D for 4 years now. He is controversial on the issue of coinfections, but noone disputes his expertise w/Lyme. Unlike most LLMDs, he is still in the insurance system and so must be more conservative. He is a great place to start, and I still feel he is a great doctor for us. Two of my kids have finished treatment w/him and I have improved a lot. So don't feel badly about your parents seeing him!

I think your question shows the kind of shaky trust we can have in the doctors we have. I truly think it will help your parents if you can project confidence in Dr D, at least for now. A feeling of trust and hope and confidence can help healing, in my opinion.

Okay, so...Dr D is fine with probiotics, but like many won't go into it. Get the kind that is refrigerated. We get Ultra Flora Plus forma chiropractor's office, and send away for Custom Probiotics (they are online), but there are good cultures in probiotics in health stores, which we used to rely on. Try and rotate so you get a variety of bacteria. I think 10-15 billion live organisms/capusle is good. Yogurt helps too!

Dr. D won't suggest supplements. He will tell you not to take anything that the Lyme bacteria can feed on. But if you e-mail him with questions about specific supplements, he will tell you which ones are okay. He is flexible! The B vitamins are the biggest no-no.

At first, try and trust him and go with his suggestions. E-mail him about supplements that might be allowed. And go ahead and buy some probiotics. Dr. D. won't knw much about them, but a good health food/natural medicine store will.

Posted by prconn (Member # 7113) on :

I agree your parents are in great hands. Dr. D does not offer false hope or pie in the sky.

He does not sell supplements in his office. You not leave his office with empty pockets.

He was one of the most sincere and caring person I have met in my life.

The only supplements he has issues with are the B's and C's.

His background is not only infectious disease he is also a bacteriologist. I have a feeling he would have insights into what feeds Lyme.

He has also been agreable to test for coinfections.

I have just never seen the point. How would treatment change?

Take care and peace.

[This message has been edited by prconn (edited 10 August 2005).]

Posted by SForsgren (Member # 7686) on :

I am a big fan of Custom Probiotics as well and talk about them on my site at www.BetterHealthGuy.com. The direct site is www.CustomProbiotics.com.

Scott

Posted by tickedntx (Member # 5660) on :

Thank you to all for your replies and reassurances.

prconn said: >> He has also been agreable to test for coinfections. I have just never seen the point. How would treatment change?

My mother has already tested + for Babesia and Ehrlichia, so testing is not the issue. Treatment would most definitely change, certainly for Babesia, which is a protozoan and requires anti-protozoans such as Mepron. I believe that there are also medications specifically needed to treat Ehrlichia, including Doxycycline, which my mother has not (at least yet) been given.

It is helpful to know that it is specifically the B's and C's which are of concern.

Posted by Mathias (Member # 5298) on :

I would be curious as to why he is concerned about B and C's but mostly the B's.

They are good for the nervous system and both of my LLMD's have recommended them.

Posted by tickedntx (Member # 5660) on :

Matthias:

As I understand it, he says that these vitamins feed the bacteria.

It is a catch 22. We are likely deficient in these nutrients both because the bacteria are consuming them and our immune system is using them. So what to do? If we take them, there's more for the ketes. If we don't, our immune system grows weaker.

At the moment, I'm doing six months of supplementation to see how I do. Then I will stop and see what happens.

No easy answers, this.

Posted by Foggy (Member # 1584) on :

[QUOTE]Originally posted by prconn:
[B]He has also been agreable to test for coinfections.

I have just never seen the point. How would treatment change?
Take care and peace. [QUOTE]

I concur with tickedntx.

The point was HUGE in my case. I tested negative for Babs, yet had all the clinical signs of Babs. I made zero progress for close to a year until I switched LLMDs and was treated with Mepron and a macrolide for Babs.

This treatment from another LLMD got me out of bed after being bedridden for months. Babs treatment gave me some of my life back and for that I'm very appreciative.

[This message has been edited by Foggy (edited 11 August 2005).]

Posted by lla2 (Member # 2364) on :

you need your vitamins. Read dr. B's protocol. he's the expert...you need b's and c's to strengthen your immune system. Dr d just does'n't want them to interfere with his research .

you need to be tested adn ASK to see the results of coinfection testing...it is totally different treatment, and most llmd s say you will not get rid of lyme until coinfections are treated.

dr. d is a sweet man adn a great researcher. HE was my first llmd, adn I wanted to stay with him because he took insurance..but i went steadily down hill because of his no supplement , no treatment for coinfection rules...

Had i stayed with him any longer than I did (7 months, ) I think I would be dead or in a wheelchair at the minimum now...coinfections are nothing to wait on for tx.they can give you seizures, paralysis etc..even death...

don't go with niceness...go with the best tx. get a second opinion . the longer you wait the longer those keets have time to burrow into your cns and brain...for lifetime of problems.....

I know...just my opinion...but my suppport group is full of his patients who left..some in wheelchairs etc....

I wish you the best on your road to recovery. I've never been one to hold my tongue re: dr. d. Do a search on here adn see all the controversy..it's not good.

Lisa

Posted by Lymetoo (Member # 743) on :

You also need B's to keep the yeast at bay.

Candida elimination: http://flash.lymenet.org/ubb/Forum1/HTML/021412.html

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Do not take anything I say as medical advice. I am not a doctor, but I DID stay at a Holiday Inn Express!
oops!
Lymetutu

Posted by hatsnscarfs (Member # 6562) on :

I'm seeing Dr D. too. He is the most capable, reassuring, caring and knowledgeable Dr. I have ever seen in my life. He is a "first choice" LLMD IMO.

He told me to avoid supplements particularly Bs & C saying they feed the Lyme and his patients seem to do better when they avoid bs & C. He encouraged me to eat a healthy diet including lots of fresh vegetables.

I'm making a lot of progress on his protocol and am getting my life back.

I emailed him a few months ago to ask if I should start taking magnesium &/or coQ10. He said he would prefer I didn't. He did say my current supplements: Primal Defense (probiotic)milk thistle & fish oil are fine.

hatsnscarfs

Posted by tickedntx (Member # 5660) on :

Thanks, hats, and everyone. I understand that this doctor is controversial, that he has really helped some, and not others.

At this point, I need to feel that they are in capable hands because there's not a thing I can do about it. They are not well enough to travel off the Cape.

If she is not making progress by next spring, I will probably need to move back up there so I can take her to another doc, and otherwise make sure they are doing the right things.

I'm hoping it won't come to that.

Posted by prconn (Member # 7113) on :

Hats I have got to agree with you. I too am seeing progress.

I did try to start a vitamin regiment a few weeks back and had a real relapse within a week. I learned my lesson. It was as if I had never been treated all over again.

btw Dr. Donta is now retired and only works 2 days a week. In our conversations I am not a part of any type of research. If one is they would need to sign a release.

Maybe more folks should hold their tongues. I have not seen any other docs with miracle cure rates.

As for being dead or in a wheelchair. LOL. 7 months is a very short treatment period. It appears your treatment continues with another for over 29 months.

I think Lyme can make us all a bit frustrated with the slow progress involved with recovery.

We are all struggling to cope with a miserable illness.

Attempts to cause paranoia or second guessing is just plain cruel. When folks are already sick both physicaly and mentally.

What works for one may not work for another.

If one does any research on Lyme they will quickly discover Dr. D has been a pioneer in the diagnosis, treatment and true insight into Lyme and how it functions. Attempts to discredit him are simply unfounded.

Take care and peace.

[This message has been edited by prconn (edited 11 August 2005).]

Posted by tickedntx (Member # 5660) on :

prconn:

Thank you for your post. While I do appreciate hearing both sides of this story, it is difficult to deal with the alarmist approach of people who do not agree with Dr. D's approach.

I do, though, understand why someone who felt that they became worse in a doctor's care might respond that way. It's the same reason why some people who do well with a specific treatment conclude that that is the only way to go for everyone.

I had stopped supplements last November to start the Marshall Protocol. Two weeks after I started my current treatment regimen, I had two really, really good weeks. Feeling so encouraged, I decided to splurge and spend the money to start most of the supplements recommended by my doctor. Within days, my really, really good weeks were over.

Of course, I can't say that it was the supplements because, at the time, I knew that I was not likely to continue to feel that way, recognizing the normal course of ups and downs with Lyme treatment. When my current supply of supplements run out at the end of the year, I'll try going without them for a while and see what happens.

Prconn, when you felt worse after resuming supplements, which ones had you started?

I may see if I can get my mom to take a few things, other than B's and C and anything else that Dr. D asks his patients not to take.

Posted by Lymetoo (Member # 743) on :

To anyone taking beta blockers....you need to also be taking CoQ10.

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Do not take anything I say as medical advice. I am not a doctor, but I DID stay at a Holiday Inn Express!
oops!
Lymetutu

Posted by mtgebrkr (Member # 7631) on :

My doctor tests Vitamin B 12 levels and mine was dangerously low. Low levels of B12 can cause dementia and a host of other problems as well. My doctor says that they see quite a few Lymies with low B-12 levels. Even if it is possible that chetes may be feeding off the B and C's, I am still taking them.
I started with B-12 injections and now take oral B12 and B6 in a formulation giving to me my doctor called Methyl Protect from Ixymogen labs. I saw an increase in energy and during the summer I did not get bit my any mosquitos (they dont like the smell)
So far this fall, I have been exposed to all kinds of bugs by my nephews back in school, and I have not caught any of them yet. Without the supplements, I used to catch everything and hang on to it for weeks with a sinus infection.

I am concerned about the older people with Lyme due to the fact that as you get older, your body does not absorb the B's as well. Its also possible that Lymies are having problems absorbing the B vitamins as well for some reason either neurological or muscle absorption is decreased due to Lyme, not sure.
Can't argue with research, but if my antibiotics are working, I hope I am killing my B bloated chetes!

Posted by Red Deer (Member # 8006) on :

FYI

Recently spoke with Helping Our Women in Cape Cod and a Dr. D//// from Falmouth came highly recommended. Don't know if this is your parents Doc or not....

Red Deer

Posted by tickedntx (Member # 5660) on :

Hi Red Deer:

A lot of people have done very well with Dr. D. Some have not. He does things differently than most of the other LLMD's.

If you want to be sure we are talking about the same Dr. D, email me and I'll let you know his full name.

Posted by bpeck (Member # 3235) on :

I pulsed my abx.
I also stopped supplements while I was on abx..
My Doc and I were conflicted as which way to go when I started abx- and decided to go with the no-supplements while I was on the abx -

There was an exception though-
I took C while I was on Mino (and didn't have any staining problems) mainly because the literature supported C with Mino.

Barb

Posted by henson2 (Member # 463) on :

Hi, Suzanne,

I will be biased bec. I feel he is helping me so much. He tested me for the co infections; he supports my taking probiotics (I take Jarro-dophilus) (spelling?) -- one that was recommended to me by a nutritionist and AIDS counselor who seemed to really know his probiotics.

I did "cheat" sometimes and go ahead and take supplements such as B vitamins, or a multivitamin. I do not know if it was the power of suggestion or not, but I actually did feel worse on them.

I think every person is so different, and every bacterial strain potentially so different, and every person's response to it so individual, that I think much of it is trial and error for a while, finding the right abx protocol for that person.

He was willing to be aggressive with my treatment when I needed it (IVs, etc). He is open to my questions. I have felt very safe in his care and am improving again (the reason that I didn't for a while being that my school requirements made me want to avoid all Herxes altogether, so I took myself off abx for a while. i.e. my own non compliance).

I think since so much is still unknown, one has to put one's faith in an LLMD for a while, and follow their protocol. I do understand his protocol didn't work for all, but i think that could be true for almost any LLMD who is learning their way around a patients' kinds of expressions of the disease. (?)

Oh - He told me I could definitely take calcium and D.

I had tried Coq10 (spelling?) and even DHEA but did not feel better on them.

I tend to ply him with questions and he provides answers that make me feel comfortable and confident about his knowledge.

I don't believe he does any research on me. I did not sign any consent form to do so, and he really listens to how the disease is changing or expressing itself in me and we talk accordingly about what abx to do or try. (I don't feel like I get a cookie cutter protocol. The Biaxin and plaquenil helped me a LOT for a while, but then didn't, so we talked about all the options he thought would be useful for the expression of the Lyme I was having.

He's helped me a lot, so I'm biased.

In a way, aren't ALL the LLMD's "controversial"? That's precisely the problem. They know WAY more than the usual medical community (i.e. the ducks, quack quack!) but they do not all agree among themselves. I think it's a reflection of how much remains unknown, even now, as we make more strides forward.

Keep us posted as to how your mom is doing, ok?

Wishing you all the best.

[Smile]

Posted by tickedntx (Member # 5660) on :

My dad tells me that she is doing better, sleeping 10 hours per day instead of nearly 24, so that is a big improvement.

She has severe short-term memory problems, but we believe that is from a fall she took last summer.

Thanks to everyone for your input.

Posted by Red Deer (Member # 8006) on :

Hi,

Yes, same Dr. named by Prcon's reply. I would be interested in hearing of your experiences with this Dr. I lived on the Cape for 10 years. Probably got infected there with all the dog walks, wild cranberry/blueberry/St Johnswort and uva ursi gathering in the National Seashore.

I have decided to TRAVEL FOR TREATMENT as NJ is just barbaric...I go to the Cape several times a year anyway.

By the way you do not have your personal mail enabled on this bulletin board for posters to reply to!! [hi]