Wednesday, January 21, 2009

History lessons

I appreciate the comments of my readers. No, I am not suffering like Semmelweis. And I am not fighting the struggle alone.

In 1847 Viennese Physician Semmelweis was ridiculed for suggesting that attending OB physicians wash their hands between patients. He was subsequently called the "Savior of mothers," when deaths from "childbed fever" plummeted.

In 1862 Pasteur suggested the germ theory of disease. His ideas were met with ridicule for years to come.

In 1979 and 1981 Warren and Marshall discovered a bacteria in the stomach. They suggested that the bacteria (Helicobacter pylori) was pathogenic- and that it was associated with peptic ulcers amongst other things. Colleagues, who knew better, dismissed these ideas as nonsense.

Of course, all of these paradigm shattering physicians and scientists, who advanced our knowledge and medical practice in quantum leaps, are now highly revered heroes of history.

After years of rebuke, Warren and Marshall were given long overdue credit; they were awarded the Nobel Prize for Medicine in 2005.

The question is: Are the "Lyme Wars" just another iteration of the paradigm wars described by Thomas Kuhn in his famous essay "The Structure of Scientific Revolutions?" Or, is this particular process different, in some fundamental- perhaps Orwellian way? This is a debate I will not enter.

Many others have vivisected the Klempner study and other purported pillars of the IDSA view point. The notion that this single- highly flawed study should be allowed to discredit the work of hundreds of scientists and physicians is mind boggling, to say the least. As I have noted in the past, it is difficult to wed medicine and science. The practice of medicine has always given equal weight to the art and the science of medicine. Bench top, basic science research is clear. The basic scientific facts as they have been uncovered, offer unwavering support for our contentions. Clinical science is murky at best and is always open to criticism.
This blog is not science. It is a collection of fact, theory and clinical vignettes sent out into the ether of cyberspace, perhaps the equivalent of a modern day message in a bottle. I suppose my motive is similar to that of any other author who scribbles a note on a piece of paper and then sends it out adrift in the sea; perhaps by chance, It will be found, read by the right person- and make a difference.

It seems clear to me that documentaries, books and scientific assemblies offering compelling, and at times horrifying information, have thus far failed to scratch the armor coat of the other side.

I do believe that history is critical. We must never forget its lessons, as we move forward each day, with the knowledge that we are doing the best that we can.

I will veer off the subject of my blog for a moment. I am awestruck and brought to tears of joy at this incomprehensible moment in history. I could never imagined that I would live to see the prophetic vision of one of my personal heroes, Martin Luther King, become reality, as I now watch a black American take the highest office in the land, perhaps the world.

As always, the people can make a difference. The medical community will not accept the truths of Lyme disease until it is forced down their throats by a grass roots movement coming not from doctors like myself, but from ordinary people- like you.

15 comments:

R said...

I agree. Grassroots. Local representatives, officials, newspapers. Just sharing stories and information, not expecting immediate results. I think it will and does add up to making a difference. I called local paper and an article was written and made it to two papers as one was affliated with the other. My state representative has contacted me twice. Will it make a huge difference today? No. It hasn't. But it will eventually. My national representative was approached by two local young women which led to a Lyme forum, which led to his support for the federal lyme bill 741 and a public stand on our behalf. Little efforts make a difference and will be the backbone of change.

I am excited about Obama as well. But I don't think he will be addressing this issue any time soon. And congress will put it off and movement will be slow until a threshold is met and we make that happen one step at a time.

What about Beachamp? Once Pasteur was accepted, didn't he die admitting that Beachamp was right? It's the terrain as well as the bug. Doesn't take responsibility away from bug extermination, but makes me think about all the other factors at hand that lead to a healthy internal environment, although I am too questioning all the supplements.. when needed and if. And makes me wonder about the acceptance of any one "stand" of truth. Eventually "interests" come in and shut down further investigation no matter who comes out on top?

I appreciate your open mind and questionings.

Staris said...

Is anyone familar with Wikipedia? While there is some legit information and it will of course need to show both sides for now - it also could use some new information on chronic infection and a more sympathic tone to this side of things. Its obvious thte IDSA folks have gone pretty far with things.

In todays day and age - many people get their initial information on a new topic from that website.

I'd be happy to do the writing but when it comes to technical matter not very good. Does anyone know HTML and the wikipedia process and/or how to footnote within wikipedia? Would like to work with someone who does.

snake1979 said...

I appreciate this site. I am currently taking a new Protocol for this new Bacteria from Fry labs. I had a Port a Cath put in and I begin IV Sodium EDTA and IV Zithromax. Does anyone have opinions because in this 6 week protocol, some are being cured...no kidding.

Seibertneurolyme said...

Snake,

Are you positive it is sodium EDTA and not calcium EDTA? I had been told that Dr F was using calcium EDTA?

jenbooks13 said...

Snake, is the EDTA taken as a biofilm buster?

Lyme report: Montgomery County, MD said...

IV Zithromax works with some patients better than Rocephin. It may clear resistant bacteria.

EDTA is a chelating agent for heavy metal poisoning.

There is no such thing as a biofilm buster. There is no basis for such a thing in medicine or science.

Robert said...

There have been some people removing references to chronic lyme and our troubles from the Wikipedia entry on Lyme in the past. I wouldn't be suprised if it was till an ongoing problem on the entry.

jenbooks13 said...

I know what EDTA is traditionally used for. I also know a number of clinicians using it along with lumbrokinase to help dissolve biofilms. So I disagree with that statement of yours as strongly as you disagree with ISDA. And there are pubmed studies on this, at least on biofilms in indwelling cathetrs; not to mention clinical reports I've heard from around the country.

Starlings Preschool said...

Snake, are you doing this at that clinic "E" in AZ? I have heard about this. What is the basis for that treatment decision? What bug is it supposed to go after? The BLO/bart?

Lyme report: Montgomery County, MD said...

Jenbooks- I don't care what you say about me, but I cannot tolerate your irresponsible recommendations.

CAM practitioners have been using EDTA to "cure" many disease for many years. There is still no evidence that it works for heart disease or any of the multitude of conditions it has been recommended for by some. Test tube evidence that it works on Pseudomonas infections, especially in plastic catheters, provides no basis for its use in Lyme patients. Do you have an advanced degree in microbiology? Borrelia burdorferi and Pseudomonas species are completely different. Virtually all bacteria have the ability to secrete biofilms. After 70 years we have learned that bacteria are treated with antibiotics. There is no evidence that biofilms have any relevance to chronic Lyme disease. Numerous mechanisms for Lyme persistence have been clearly established, need I remind you. It morphs into three forms, it resides inside cells(its major mechanism of biological resistance), it changes its surface antigens, it adheres to the extracellular matrix- just for a start.

It truly amazes me that someone who is so critical of established, relatively safe therapy- (antibiotics) is so eager to jump on the band wagon of every new CAM therapy that comes down the pike- without any scientific support.

EDTA is not benign. It causes Zinc depletion. It has been associated with kidney failure, organ failure, cardiac complications and death.

Why do you believe that poor patients suffering with the ravages of Lyme disease should be subject to experimentation every time some "LLMD" develops a new- unproven, unscientific and potentially dangerous therapy? Hurry up- let's fly and see Dr. X because his is using Y.

Yet, you are "shocked" when my patients get better with antibiotics. Just become something is CAM or natural doesn't make it better. Hemlock is natural.

It is irresponsible to recommend potentially dangerous, extremely experimental therapies, based on rumors, and your citations from Pubmed, when so many desperate patients will try anything.

Do you have an MD- a PhD?

You are not the one putting your MD license and your reputation on the line when you treat patients.

Every medical therapy carries with it risk. Physicians have taken an other with admonishes them to "First do no harm."

Chronic Lyme disease is a disaster in this country:
You are part of the problem, not part of the solution.

I have been patient, but now I have to agree with some of my readers: If you cannot make measured comments- go start your own blog.

Seibertneurolyme said...

There is much debate in the Lyme community regarding the significance of elevated mercury levels and how it relates to tickborne disease patients.

Hubby had elevated mercury which was treated before he apparently got the tickbite.

Can a patient with elevated mercury and tickborne infections get well by only using antibiotics? I think the jury is still out, but I feel both problems need to be treated.

The same could be said for elevated lead or aluminum or other metals such as nickel which are also in dental amalgams.

There is a NIH study currently underway regarding EDTA and heart disease. Don't think the study is complete yet. From what I have read this is a very "scientific" study which may provide some answers.

The current docs who are proposing EDTA are not using it to treat Borrelia or Babesia or Bartonella. It is being used to treat the mystery bug which Dr F in Arizona
has discovered. Until more data is available I don't think anyone can say with certainty whether this treatment will work.

All I know is that if the bug is the same one Clongen has found in hubby's blood 25 different antibiotics and antiparasitics so far have not worked. Personally he is having more success with selected herbs and supplements right now than when he was taking a 5 antibiotic combo. Have not done EDTA yet, but it definitely remains on the list of possible treatments.

Do tickborne disease patients have some undiscovered pathogen which forms colonies and is protected by a biofilm? I think that question is unanswered.

Hubby has numerous pulmonary nodules etiology unknown (some may be calcified) present for at least 5 of the 8 years he has been ill, at least one lesion on his liver, a propensity to develop kidney stones, and recently a lung CT found calcification of the aorta.

Is it simply a calcium/magnesium imbalance or is this some manifestation of the mystery bug found 2 times by Dr F and once by Clongen? All I know is I am impatiently waiting the ID of the pathogen from Clongen, but in the meantime I will continue experimenting with herbs, supplements, and antibiotics.

Lyme report: Montgomery County, MD said...

S- neurolyme
I don't troll blogs chat rooms forums and the like. My impression however, is that this sub-culture is a swirling mess of craziness.
There is no jury out regarding mercury and Lyme. Many LLMDs come from a CAM background. Virtually everyone tested by saliva measurements has "toxic" levels of mercury and other heavy metals. Lyme patients and everyone else have the same levels of mercury in their bodies. We live in a toxic polluted world, sorry. Luckily, our bodies are amazingly resilient. Our bodies are also full of perchlorates, aflotoxins, artificial partially hydrogenated fatty acids, PCBs, insecticides, fungicides and a million other toxins and chemicals many of which has not even been classified. Mother's mild does not pass FDA standards for human consumption because of toxic concentrations of DDT- even though the pesticide has been banned for decades. Lyme is a pathogenic bacteria. Clongen only found- non characterized bacteria because I asked them to look. It is resistant and hard to ID. EDTA is not an antibiotic. It is insane to think that a chelating agent should be used to treat a bacteria- of unknown clinical significance- which hasn't even been identified yet! I am not a CAM doctor. I like to function in a world of science and facts. I am sorry your husband is so ill. You likely do not have a scientific background. Beware of claims which sound fishy- Caveat emptor.

Seibertneurolyme said...

No, I'm not a scientist but an accountant. However, hubby's Parkinsonian tremors went away after dental amalgam removal and after mercury chelation with DMSA, DMPS, D-penicillamine and various herbal supplements. Plus his urine mercury levels returned to normal.

He had tried about 30 prescription meds previously for the G.I. and neuro symptoms so it obviously was not a placebo effect.

And no, everyone does not have the same levels of mercury in their bodies.

As a scientist you have mentioned previously that there may be certain genetic markers which are more common in tickborne illness patients. In my opinion the ability to detoxify mercury and other toxic chemicals may be one of those genetic markers.

Regardless, there are many people who do have genetic problems with the methylation pathway. Hubby fortunately only has 1 of the 2 possible defective alleles. Nutritional supplementation for him is not a luxury but a necessity due to this factor.

I have met and talked to many heart patients who have had EDTA chelation. The longer my husband is ill the more I have learned that patient experience is just as valuable as M.D. input. Anecdotal evidence may be exagerated, but usually the patients involved do not have any hidden agenda and I personally think the placebo effect is a very over-rated phenomenon.

I do enjoy reading your blog. There is so much unknown about tickborne illnesses. The case studies are especially informative.

jenbooks13 said...

I unbookmarked your blog, LymeMd. To repeatedly classify me as "cam" or irresponsible is ridiculous. I'm not even going to list the pubmed studies here and I never said I disrespected antibiotic therapy, ever. I actually talk to practicing MD's and listen to what they say. I'm glad you're helping some people but how you can post openly of a patient having a heart attack and pulmonary embolism after initiating treatment, and then say "thankfully he's no worse for the wear" (heart attack, pulmonary embolism, and I'm sure, a long period of coumadin, not a nice drug), but then start talking about zinc depletion and kidney failure in EDTA--which would suggest that a responsible MD would not monitor kidney function and test for protein in the urine before each single EDTA treatment--well what can I say?

I was curious why Fry was proposing that combo and asked a question. Are *you* curious whether Snake is reporting correct results--six week cures? Maybe that's apocryphal and maybe that's not but I sure am curious.

R.İ.P said...

since a week or so i was reading ur blog .. i loved it , so inspring so creative and i do find u a very intelligent person ..
sadly , i read this thread .. and ur attitude against two bloggers , the way u accuse them , the logic u use to disprove them or their right to comment on science or med .. u judged ppl here as idsa or mainstream med exactly judged you ..
i m sure u care it not if i read ur blog anymore or not .. i just wished u did , so u could maybe think on the mistake u ve done here .. those two blogers didnt deserve what u wrote for them .. actually maybe more importantly for the lyme wars , with all those wonderfull writings of urs in this blog , u didnt deserve what u have done lately in this thread .. what u have done really made me very sad here ..

(sorry for my english i m not a native speaker )