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Sunday, February 21, 2010

The eye of the beholder: a specialist

Published studies do show that chronic Lyme improves with long term antibiotic therapy.

Donta, 1997, Boston University published a study of 277 patients with chronic Lyme disease.
He reported that patients frequently did not improve for several weeks. After 2 months 33% of patients had improved, after 5 months, 61% had improved. He claimed 20% of patients were cured, 10% did not improve, and 70% showed some improvement. The duration of the study was for 1 to 11 months. He concluded: CONTROLLED STUDIES NEED TO BE CONDUCTED TO VALIDATE THESE OBSERVATIONS.

In 2003, Donta published a study on the use of Biaxin, Biaxin with Plaquenil and Plaquenil alone.

Cameron, 2008, published a double-blind placebo controlled clinical trial.

He replaced the term chronic Lyme disease with Lyme disease with persistent symptoms (LDPS). He found a 46% improvement of subjective quality of life in treated patients and vs 18% in non treated patients. He concluded: WORTHY OF FURTHER STUDY.

Clarrisou et al, 2009, Med Mal Infect, published: Efficacy of long-term antibiotics in patients with a chronic Tick Associated Poly-organic Syndrome (TAPOS
Investigators keep inventing new terminology for the same disease. Why?
A cohort of 100 patients was followed. The study showed favorable results in subjective symptoms. The authors point out flaws and limitations of their study but recommend: RANDOMIZED, DOUBLE BLIND STUDY.

The number of patients studied in all of these studies was significantly higher than the number of patients studied in the 3 NIH sponsored studies. This has mostly to do with study design and patient selection limitations.

Hopkins-Harvard-Yale-IDSA-CDC: Where are you?

Those folks are sticking with the "Best science."

Problem: best science supports these conclusions (fatigue, qualitly of life) if you take another look at the Krupp and Fallon outcomes. A patient suffering with Lyme and chronic fatigue recently told me: " Hell, I would gladly go on 3 months of IV Rocephin if it only helped with fatigue."

I asked an esteemed professor(infectious disease) from Hopkins about his success with severe neruo-syphilis He told me with pride that he has treated it, (it is rare these days)--the penultimate expert. I asked him about patients with severe brain damage. "When the squash is gone there is no squash." Good answer. Even patients with persistent vegetative states have been shown to frequently have significant neurological and cognitive activity.

Patients with neuroborreliosis have recovered. SPECT scans, PET scans have improved. Patients with neuro-syphilis-dementia (general paresis) have been treated with only penicllin. These patients pathologically have blebs and cysts in their brains, similar to those seen in patients with neuroborrelosis. As stated, there are not many of these patients around anymore. There have been no studies since TUSKEGEE. How would neuro-syphilis patients do if they were treated with other therapies, including IV Flagyl? Not studied

How about this:

Why don't we let psychologists and psychiatrists evaluate cognitive functioning, radiologists evaluate objective, radigrophic signs of improvement and neurologist evaluate for evidence of neurological improvements. How about listening to our patients as well? I know--a novel concept.

Why does a professor of of infectious disease medicine, with little or no knowledge of these other fields, tell us about squash, a "fancy" designation for brain?-- what are his qualifications to tell us that chronic Lyme disease--including neuroborreliosis does not exist?

I went to medical school, internship and residency.
We made round, sometimes with esteemed attendings: we were intimidated: they knew everything, we were abysmally ignorant. We were ready to be chastised; we were swine waiting for pearls to be cast to our feet. I remember, Super-star attendings--Power, honor, prestige: with it comes a sense of infallibility--after all, you are the last word, the highest authority. You have to be self assured. Perfectly understandable. That is why I became a generalist, not a specialist. It is understandable. Nonetheless: sometimes you are wrong, dead wrong.


glytzhkof said...

With regards to the conclusion: "...the effective therapy was Biaxin and Plaquenil - these results support the hypothesis that lyme borrelia reside in an acid endosome". Is it correct that the Salt / C protocol also alkalizes the body? I know a few hard-hit Lyme sufferers who absolutely swear by this protocol.

I completed Biaxin and Plaquenil a few months ago, and I am indeed the best I have been for years. However, the bloodwork is starting to tilt the wrong way again, so I guess the treatement ended too early. I am considering trying the Salt / C protocol instead of antibiotics because I may not be able to get enough antibiotics prescribed, and besides I have taken so much antibiotics that trying Salt / C may be a viable alternative, but I am concerned about the safety of ingesting so much salt.

Unknown said...

Clarrisou et al, 2009, Med Mal Infect, published: Efficacy of long-term antibiotics in patients with a chronic Tick Associated Poly-organic Syndrome (TAPOS
Investigators keep inventing new terminology for the same disease.) Why?

I'll venture a few possible answers:

-Because "Lyme" has acquired such bad connotations?

-For the sake of accuracy?

-because "borreliosis" does not cover many of the other tick-borne infections that are part and parcel of this illness?

-because although you need to define your cohort as people who have a history of tick-bites, nobody knows for certain which organism/s plays the central role in the major symptoms some of the patients suffer, eg is babesia a co-infection of borrelia or vice-versa?

-because you need to convey the multi-organic nature of TBIs that have got untreated for years?

-because other pathogens are probably involved? Viruses (seen the recent XMRV research), parasites (helminths, nematodes etc)

I'm sure I could find many other "becauses" as to why "Lyme" is not a name that is well suited to describe the illness we suffer from.

Don't you think we need to move away from the topological reference? Steere coined the term "Lyme" and he described it basically as "a knee-disease", I think finding an alternative name might make it easier for all to move away from the sterile and detrimental controversy.


Lyme report: Montgomery County, MD said...

Beautiful-articulate words. NO.

XMRV, HHV6 etc. Distractions.
In my practice few patients have a history of tick bites--this is NOT a dependable feature of the disease. And that is not what this "sterile" debate/war is about.

Chronic Lyme does not have a "bad reputation." It is the name given to the alternative paradigm. Which are fighting so hard to validate. When you start giving it different names you generate confusion and a loss of focus.
"What are these crazies takling about?"
Let's stick to one name. This is a paradigm war-- a bloody war-- a take no prisoners kind of war.

Post-lyme versus chronic Lyme.
That is the issue. That is th crux of the debate.

We live in a sound bite world. The more complicated you make the discussion, the more fringe you sound-- setting yourself up for certain failure.

Nematodes? You sound like a nut(even though you could be right).

People: you don't get it. Your precious LLMDS are a vanishing breed. How many new doctors are throwing their hats onto the stage?
Why would they risk their livelihoods? Risk your career, why? Dr. Jones won't live forever. Dr. Burascanno has already retired.

New pieces of legislation, such as that introduced into the House of Delegates in MD, intoducing new pro-Lyme legislation, were slammed by political forces within a loose-fractured community where egos rule the day (everybody's a doctor) and the young are served up for breakfast.

KISS: Keep it simple stupid.
It is chronic Lyme disease!

bluesdoc said...

First, thank you so much, LymeMD for your contributions here. I'm an MD with late Lyme and have gone through a deeply morbid struggle in my efforts to get well, guided lately by some of the heavy hitters in the realm, but for too long I was calling my own shots and grossly underestimated what it would take to get better/well. But that's another subject entirely.

Given Donta's success with Biaxin + Plaquenil, and what we know, or at least believe about cyst forms, might a better approach be B + P + Tinidazole? Or is the Biaxin + Tinidazole polypharmacy an issue?

As I do get gradually better, I'm consumed with my considerations about practicing again. I was a boarded ER doc for 25 yrs, but because of Lyme and a wicked respiratory hypersensitivity to germicides, I've been 'retired' for 12 yrs. Because of personal economic meltdowns, I will have to go back to work when my disability is up at age 65, in only 17 months. So, re: Lyme doc scarcity, I've thought a lot about whether or not to do Lyme medicine, and almost every fiber in me screams NO!!!! It's too damn difficult. I'd never want a patient as challenging as me! And I'm no crusader, vis a vis liability with medical boards, etc. On the other hand...???

gale said...

I am aware that this is probably not the proper place to post this.
However-any new thoughts on the identity of what you found to be orngaisms in white blood-cells?

Robin123 said...

Re the self-confident authority persona of doctors mentioned here, I'd also like to add that I have experienced the same attitudes in almost all medical professionals I saw over the years for unknown Lyme.

For example, almost all chiropractors were sure of themselves, even though they all turned out to be wrong in missing my Lyme disease. I'm not going to blame them if they didn't know about the disease. But to have the humility to say "I don't know what's going on with you" - that would have been nice.

Physical therapists - same thing. No awareness, no curiosity, no creative interest in figuring out what might be wrong.

Bodyworkers, each with their specialty, that's what they do, all they look at, pronounced me done when they finished with their various bodywork.

And I wasn't. I hadn't even started, given 2020 hindsight.

What I'm saying is that I experience that practically all medical professionals are too sure of themselves. Maybe it's to sell their services. But be careful when you start believing only what you know. It might completely be missing the boat, so to speak.

LYMEMJ said...

Nelly go hate somewhere else!
you state that this Dr. is not able to handle complex? Ay Mamita, you don't know what this Dr. Handles everyday! More than complex, and the ability to listen, to treat, to write, to share. Oh, forgot: and the compassion...
Nelly maybe you can write, and obviously still fight, but cannot hear any objection ah? you go to hurt the person just to defend your point of view? The "simplistic" Doctor is on our side, ha!!!!
I am so hurt by this illness,
I'm happy knowing this doctor is there, at least trying to help with so much effort and knowledge!
Good brings good!
Sorry Nelly, need to smile more!

Lyme report: Montgomery County, MD said...

Dear Nelly,

A friend read my blog and comments and recommeded I clarify things. I never meant to disparage you personally. I don't think you are a nut. The contrary is true. I was trying to make a point. I appreciated your comments. This forum sometimes is a place for debate.

In truth, I do not disagree: in general, there is a lot more to this disease than meets the eye.

I have talked about various parasites, microfilaria, curved parasites, dumbell shaped organism and others, all seen in the blood of patients suffering with tick borne disease. Willie Burdorfer described worms in the gut of Ixodes ticks when he discovered the Lyme spirochete.

There is probably more about the disease that we don't know than we do know. It is a disease associated with immune suppression. Numerous co-infections, many for which we do not yet have a name for.

The rest of world does not believe that Borrelia persists after 3 weeks of doxycyline. We are trying to get laws passed which state this and having poor success.

When we start talking about complex, mutifacted paradigms--we might just as well be talking about little green men on mars-- as far as the mass of doctors and the general population is concernedma(hence the "nut" comment). Sometimes when one is so immersed in the intracies of the disease and its discussion it may easy to loose this perspective.

My point really is that when each researcher and practitioner gives the syndrome different names it becomes hard for outsiders to connect the dots-- these researchers are all writing about the same thing.

I just want the rest of the world begin to accept-understand: what we are talking about is real.

Never meant to offend. KISS is for those who know nothing of the disease, not for folks like you.

higherorbital said...

Bluesdoc: Do it! We need more doctors in the Lyme World who know exactly how dangerous this disease is. You've lost a considerable portion of your professional career to this illness. I'm not a doctor, but if I hadn't've had this illness for such a long time I might've been. I just lost the years 2007 - 2011 to the illness. Completely. As in, I can't remember a lot of that time.

The Medical Community is criminally absent on this issue. We need more good folks like you on the fornt lines. Too many have been marginalized for challenging a flawed hypothesis - which, incidentally, what I thought science was about.

higherorbital said...

BTW the effective protocol for Lyme encephalopathy IS Biaxin and Plaquenil. It is still incredibly slow-acting, but it gets the job done eventually. I was in such a hole I can't even believe I am alive.

Biaxin alone doesn't do it, or doesn't do it quickly enough to be clinically measurable. Amoxicillin made things worse. Rocephin made things worse. So did doxycycline. The Biaxin + Plaquenil combination is the only thing that works.

Unknown said...

I was born with dandy walker varient.Didn't know it until 2007. I had normal functions, no stent
When I got in my thirties I was having unonvluntary muscle mobements, smoking cigarettes, did drugs
My main drug was alcohol
Went to rehab, wemt back on Valium. Got the west Nile virus there. Left arm and leg went lump. But befote that I was around lots of birds under Bush when I was drunk. Series headache I was crying. Blood pressure went sky high and at that time I could take meds.morphine and hydrchlorithyadidr. After rehab worked as makeup artist former cosmetolgist. I quit my parents needed me. I come from bad genes. I got bit by unspecified insect and event into temporary paralysis. Had anaphactoid reaction to protonic a PPI
Kept growing more sensitive to meds. Almost everything. I have been cystic almost everywhere. Thrtr is so much igenex came up with 41kda and 34 positive and tje rrst of antibodies haf doubled stars or asyericks mecy to them. I have ttied eberything. I mow habe addictions cigs valis, anorexia, palms and dolrs butn. I was doing coffee enemas and saw my true skin pimply like chiken skin and family is now getting sick. My name is Becki amd could someone please calle. 8163918975
I am seeing neirologist that knows about dandy walker syndrome amd jas patjologist there and then i hope he will connect me to the rigjt doctor
I am a true believer in Jesus Christ and God. I habe ben praying and he has put me on right track.up w