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Monday, July 28, 2008

Am I Lyme Literate?

I have been accused of not being Lyme literate by a lay person who has her own web site and blog. She feels I am misleading people. I don't know if it is appropriate to defend myself; but like most physicians, my ego pushes my in this direction. She claims that Lyme is transmitted by breast feeding. This makes no sense to me and I have seen no scientific evidence to support this. Lyme can not be found in body fluids and it not transmitted by the gastrointestinal tract. Infants who have Lyme probably got it through the placenta. There is science to support this. She claims that samento is a crucial part of Lyme treatment. Many patients who come to me have used this extensively. It may have modest benefits but has not cured anyone. I have no problems with patients using this as an adjunct, but to date there is no science to support its use. Mr. Buhner has written a beautiful book about Lyme. The science of Lyme infections is well described and documented. He offers herbal therapies, but no science to back up the use of these therapies. It has been reported that the Cowden herbal protocol helps Lyme patients. This is a difficult and expensive therapy. Again, it lacks scientific support. The Top Ten Treatments by Rosner is filled with mistakes and misinformation. The Marshal protocol refutes the importance of treating non cell wall, intact spirochetes. Marshal is a PhD, not a MD. His treatment was initially used for sarcoidosis not Lyme. He claims only a 30% success rate with Lyme. Plaquenil is not an anti-cyst drug as stated. The vitamin C and salt therapy is questionable and has helped very few patients. The same can be said of the rife machine. Dr. Burrascano is without question one of the best Lyme docs. he recommends a plethora of supplements. Apparently he cured himself without taking these supplements and used high doses of Ceftin. I can't list all the supplements here but they include: alpha lipoic acid, co-enzyme Q10, Carnitine, magnesium, multivitamins, methyl-cyocobalamin(which is an expensive form of vitamin B12) omega-3 supplements and a host of other supplements. If you take all these things you end up taking a medicine chest full of supplements. There is no scientific evidence to support any of things. I, my patients and family members have recovered without these things. To the best of my knowledge, Dr. Stricker and Dr. Jemsek do use these things and they are arguably the best Lyme docs in the country. I see many patients who have had their fillings removed; been tested for every parasite in the book; had saliva tests for cortisol levels; been treated with a plethora of herbs and alternative therapies, who ultimately come to me because they have not gotten better. I disagree that stage three Lyme is not curable. Many stage 3 Lyme patients have been cured or at least put into long term remission. Chronic Lyme is still outside the mainstream box. I use therapies which have some proven benefit or least are based on clear logical principals encompassed both in the art and science of medicine. Some patient have been treated with what I consider dangerous therapy like intravenous hydrogen peroxide and colloidal silver. These treatments have been given by the best known "LLMDs". These same doctors who once used the Marshal protocol now load patients up with vitamin D not understanding the immunology of this compex hormone. I see patients who have not gotten better with other docs and I am willing to take on very difficult patients. I treat patients with severe Lyme and all its known complications. I do not claim to be the best Lyme doctor. I welcome positive feedback. My intention is to write a patent's guide to Lyme from a physicians perspective. I like questions because they help me in this regard. Patients should be aware that there are as many opinions as their are LLMDs. Lyme patients need to become Lyme literate themselves and seek a variety of opinions and opinions. I have no agenda in writing this blog. I find it therapeutic and I hope it helps some patients. During an office visit I do have time to cover the vast the details of the science and controversies of Lyme disease. I hope this forum helps with the educational process. I also welcome feedback from patients which I find very helpful.


PAlyme said...

I am very appreciative of your candor regarding Lyme treatment. I would consider you Lyme Literarte. I see two Lyme Literarate Doctors. One for Cognizance problems and one for abx treament. They don't agree on everything as I am sure most MD's don't. Many of the (alternative) treatments you mention I have been recommended to do by my "Lyme Literate" physicians. I admit to being sceptical but in the interest of getting better tried many things. However I did pass on have fillings removed. I was not offered the peroxide or silver treatment. How would I schedule an appointment with you?

Lyme report: Montgomery County, MD said...

I do not give my name on this blog. I can be reached by Barbara at ILADS. I am the only ILADS member in Germantown MD. I did not write this blog looking for new patients. I give the site to my established patients. But I am always willing to take new patients. I don't like the term LLMD because many people have misconceptions about this term. When I read Gary Wormser's guidelines I was impressed that he was Lyme literate. I just think that all of his conclusions are wrong.Doctors disagree about this disease for a wide variety of reasons. I would prefer to differentiate between doctors who treat Lyme as a chronic infection and those who do not because they believe the disease does not exist. The term LLMD seems arrogant and probably turns many physicians off. One of my pimary missions is to educate physicians. The few of us who take this disease seriously cannot deal with this disatrous epidemic.

Elne Clare said...

Just was pointed this way from one of your patients.

It's good to see a doctor that takes the time to learn and question the lititure on Lyme Disease and treatments. As a person who has been told I have Fibromyalgia and never able to afford extra test for the chance it may be due to a tick bite while younger I found it's been my job to educate each new doctor I get at the teaching Hospital were they are finishing their education. It can be frustrating but also rewarding when they leave knowing that due to me, they have a better understanding of treating chronic pain.

As child I spent hours in the woods near where I lived in Friendship Heights and Columbia MD. I only stop taking hikes in the woods after I became ill. Finding some of the other people on other sites had lyme, I'm interested in the link between them. I do know I had a viral infection, (Fifth's) no more then 2 weeks before I develop pain in my legs 11 years ago.

Lyme report: Montgomery County, MD said...

Fibro is a tough one. Viral infections frequently trigger quiescent Lyme. Parvovirus B19, Fiths disease has symptoms which closely mimmic Lyme. Other viral infections including HHV6 and EBV may also be an issue. Some of my Fibro patients are responding well to Chamydia pneumonia therapy, which is complicated. I try not to spend a lot on tests if the patient cannot afford them. I think the high cost of Lyme therapy by many docs is out of control.

Unknown said...

I just finished reading this post. I disagree some of your points. I was diagnosed as Lyme eight months after the bite. I think I blong to the third stage.

When I started the treatment, I remember I had very sensitive itching skin. Probably 2 weeks after treatment started, my right upper eye lips was twiching. A few days later, my facial skin became very dry and cracked. My corner of lips and lips have some kind of .... I really don't know the word. I wish I have medical dictionary with me. Anyway, I learned I need VB supplement and I tried. This was almost most miracle moment for me during these six month. After taking one pill of VB, on the next day, the twitching, the corner of lips and lips symptoms were gone. The dry cracked skin took a while, probably 2 or 3 month for my facial skin return to normal state.

Regarding the Magnesium, what I know is I had lots of sharp, shooting pain around my knees at some point. Both of my knees are inflamated. After I add my Magnesium Supplement, I did not have that server shape shooting pain any more. And it helps with my bowl movement.

Lyme report: Montgomery County, MD said...

I don't have all the answers. Herbal therapy may be very good. I don't have any evidence to support its use. Stage 3 LD probably takes some time to develop. When a patient has a tick bite it frequently reactivates old Lyme disease. Most tick bites are not noticed and most patients with Bb infections have few or no symptoms.

dogdoc said...

You know a lot about Lymes and related infections. Unfortunately, "Lymes Literacy" is lumping together all types of things from standard allopathic medicine to nonmedically trained "herbalists" and everything in between. I'm afraid this is not helping the cause any. With such an awful disease and having gone to many doctors with no help, a lot of people will try anything. I have no issue with herbal supplements (except some are dangerous) or vitamen and enzyme supplements. I am just afraid of three things. First is that people will rely on these things and not go get the antibiotics they need as the cornerstone of therapy. Second is we are already risking drug interactions with the antibiotics we need to combine to get somewhere with this dz- adding a ton of herbs and nutritionals all together is a toxic interaction waiting to happen. Third is that traditional medicine turns away at the very thought of these things- that is the LAST thing we need right now. We need to get this out in a moderate, basic, acceptable way to the "regular" docs. Unfortunately, things like the last pages on supplements and diet and such in Dr B's work reduces the credibility of the rest of the work which has many excellent points and useful information. It's not to say that maybe they won't help- but you could take those things away and the antibiotics still work. If you take away the antibiotics and leave the rest, it won't treat people. I have Dr B's work in front of me- some things make some sense but in a more moderate way. A good multivitamen, good basic nutrition, enough rest, ect are good for all of us especially if we are fighting a bad dz. The essential fatty acids are anti- inflammatory, well studied, benign, and well known to be lacking in mainstream diets. Probiotics are essential with long term antibiotics. Glucosamine makes some sense to try in any joint patients- well studied, benign, and helps some people. B 12 deficiency is common in a lot of chronic dz's incl Lymes. Parenteral hi dose seems a bit overboard though. Although I must admit, 20 years ago every bag of IV fluids we hung on our critters was colored with injectable b vitamens (fallen out of favor now). I don't know. I guess I would like to see some simple mainstream guidelines published that the average dr can relate to. Its too easy to lable this whole group as out there, when that's not the case.

dogdoc said...

Not sure we have enough info on the bodily fluids thing. PCR testing in urine and other fluids (blood, csf) finds it occasionally. We have no evidence that these are whole infectious organisms however. European groups claim PCR shows in semen and breast milk, but no studies I've seen to back it up. Would be difficult to tell in utero transmission from breast feeding unless born with signs from day 1. Some Lymes docs believe in transmission between couples (hard for me in my spot to completely discredit). This organism gets everywhere in body so who knows what it exits in. Studies just have not been done to back up any position here.
Knowing about Lymes does not make everyone the same. A lot is not known and every person will make their own opinions on those. I have seen a lot of way out there opinions in the lay folks (as well as some exeptionally well researched and timely ones). Unfortunately, there is no way for average person to tell these apart. The internet it a double edged sword- it distributes information and misinformation equally!

MJ said...

Healing is a process that requires having a very open mind and a Doctor with a wider mind than your own!
You know what moves me more from your posts?
Seeing your desperation to help and the limitations medicine still has. God bless your generous heart.
About the case of patient that has no money and the insurance stopped the treatment, well, can we all make a donation?

P.S. what would you say if a patient is "treating himself" with silver due to the lack of a Doctor that dare to help him - her -me???
What ever the bug is I have, it gets debilitated with the silver. It doesn't kill it, but "controls" it? I wonder if the Bartonella could be "located" in my sinus? could that be possible? and from there has moved to other places like my heart?
God bless your enormous effort. You are making a difference and that is the one thing we all should do in life! Thank you in the name of medicine and human beings!
M. P. J.

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Unknown said...

My name is david and my wife was diagnosed with lyme(western blot) about 6 months ago but we feel strongly she has had it at least 6 years. She has had 3 sessions of oral doxy with no improvement, save a brief 3 week period where she was about 60%. Her main symptom is extreme fatigue. I am considering going to Jemsek(I think he is only lyme doctor in our state) or buying a rife machine. What would your recommendations be, any advice would be helpful. Thanks, David

glytzhkof said...

As I have commented elsewhere this may be the best Lyme-blog I have ever read.

Are you Lyme literate? I am just a layman, so what do I know? What I think, though, is that you embody the single hope we got: a skilled and experienced doctor with a firm grip on the difference between an open mind and an empty head. The very thing that is needed to clear the fog and make Chronic Lyme digestible for the medical community.

I particularly like the complete lack of "selling" in your writing - there are no product placements here. I like the fact that you are critical towards supplement and treatments that have not been proven, but that you still keep the door open - "show me proof and I will change my mind". This is what it is all about in my opinion: let's be open to possibilities, but don't waste lots of people's time and money on unproven remedies.