_The Daily Times - www.delmarvanow.com - Salisbury, Md._ (http://www.delmarvanow.com/apps/pbcs.dll/article?AID=/20060911/OPINION03/609110\ 321/1014)
Letters to the Editor
Diagnosing Lyme is a complex, difficult process
RE: "Lyme on the rise on Shore, but not doctors to treat it," Aug. 7; and "Few Delmarva physicians trained to recognize Lyme," Aug. 24 Recent letters to the editor have implied physicians who don't prescribe long-term antibiotics for suspected Lyme disease are incompetent.
Nonsense. Lyme patients rarely need prolonged antibiotics. Our data on 1,500 patients show the vast majority of post-Lyme patients have an inflammatory illness that requires specific interventions following antibiotics -- not antibiotics forever. Denial or diagnosis of Lyme based on a flawed diagnostic test or no test is wrong. We often see patients both under- and over-diagnosed using clinical diagnosis alone. The pathophysiology of chronic Lyme is readily demonstrated by commercially available lab tests looking at the inflammatory basis of the illness. Be wary of results from any lab that demands cash payments. Practicing physicians acknowledge the diagnostic and therapeutic challenges posed by Lyme. The tragedy of incorrect diagnosis is measured both by disability from untreated illness and injury from over-treatment with unnecessary antibiotics, not to mention delay in proper diagnosis. Until recently, no tests could show if a patient had living Lyme spirochetes. Our paper, sent last month to the New England Journal of Medicine on use of C4a, may be a breakthrough. Consideration of "Lyme literacy" begins with rock-solid facts, not unfounded assumptions from either Lyme-naysayers or Lyme-advocates. Many other illnesses look like Lyme, but are not. Without a careful differential diagnosis of patients with complex, multisystem, multisymptom illness, we routinely see nonsense diagnoses like fibromyalgia, chronic fatigue and Lyme too, when the illness can be shown to be something else. Mold exposure leads the list of confounding diagnoses, as demonstrated by our three recent peer-reviewed publications. Some practitioners assume all patients with chronic multisystem illness have Lyme. They often prescribe intravenous antibiotics that they themselves dispense, collecting fees often exceeding $15,000 a month. Tests used to confirm such "expensive Lyme" must be impeccable. Clinical diagnosis of "expensive Lyme" must be impeccable. I was a member of ILADS, the society of "Lyme literates" for three years, lecturing at meetings of both ILADS and the Lyme Disease Association in Easton from 2000 to 2002. In 2003, I quit both groups. Throwing stones at physicians is a losing approach to thinking. Look at the Mid-Shore Lyme Disease Association in Easton; they sponsored a national meeting with top-drawer Lyme physicians in March 2006. Having Lyme disease can be a terrible problem; let fact -- not emotion -- sway the approach to the patient. Dr. Ritchie C. Shoemaker Pocomoke City
Shoemaker is director of the Center for Research on Biotoxin Associated Illnesses in Pocomoke City. -- Editor
Posted by Lymetoo (Member # 743) on :
Surprising.
Posted by humanbeing (Member # 8572) on :
Our data on 1,500 patients show the vast majority of post-Lyme patients have an inflammatory illness that requires specific interventions following antibiotics
What is the name of the study? What is the "specific intervention"?
The pathophysiology of chronic Lyme is readily demonstrated by commercially available lab tests looking at the inflammatory basis of the llness.
Two commercial labs tested negative for me, what is an inflammatory terst? My sed rates were fine...
Be wary of results from any lab that demands cash payments .
I'm more wary of the labs that are free but wrong.
Who is this man? And can he really be from ILADS?
Posted by Lyme Wolf (Member # 5463) on :
Hmmm...let's see....
"Shoemaker is director of the Center for Research on Biotoxin Associated Illnesses in Pocomoke City. -- Editor" which is a noble "not-for-profit research center". But, imagine the luck, SHARES the same address as ChronicNeurotoxins, Inc., a for profit company (not anything wrong with that per se). Except that dear Ritchie is criticizing others for "cashing in" on providing treatment to patients.
Ritchie is promoting mold exposure and other "biotoxins" as the "mysterious underlying cause of the post Lyme inflammatory process"...and coincidentally his "Center" can treat you for it! Ding. Ding.
Alas..he is no longer a member of ILADS.
As usual, "Steere clear". We have another "Bum Steere".
Keep on, keepin' on...
-Lyme Wolf
Posted by bettyg (Member # 6147) on :
for other folks who can't comprehend/read how this one copied to our board....Bettyg
quote:Originally posted by lou: The Daily Times - www.delmarvanow.com - Salisbury, Md._ (http://www.delmarvanow.com/apps/pbcs.dll/article?AID=/20060911/OPINION03/609110\ 321/1014)
Letters to the Editor
Diagnosing Lyme is a complex, difficult process
RE: "Lyme on the rise on Shore, but not doctors to treat it," Aug. 7; and "Few Delmarva physicians trained to recognize Lyme," Aug. 24
Recent letters to the editor have implied physicians who don't prescribe long-term antibiotics for suspected Lyme disease are incompetent.
Nonsense. Lyme patients rarely need prolonged antibiotics .
Our data on 1,500 patients show the vast majority of post-Lyme patients have an inflammatory illness that requires specific interventions following antibiotics -- not antibiotics forever.
Denial or diagnosis of Lyme based on a flawed diagnostic test or no test is wrong.
We often see patients both under- and over-diagnosed using clinical diagnosis alone.
The pathophysiology of chronic Lyme is readily demonstrated by commercially available lab tests looking at the inflammatory basis of the illness.
Be wary of results from any lab that demands cash payments.
Practicing physicians acknowledge the diagnostic and therapeutic challenges posed by Lyme.
The tragedy of incorrect diagnosis is measured both by disability from untreated illness and injury from over-treatment with unnecessary antibiotics, not to mention delay in proper diagnosis.
Until recently, no tests could show if a patient had living Lyme spirochetes .
Our paper, sent last month to the New England Journal of Medicine on use of C4a, may be a breakthrough.
Consideration of "Lyme literacy" begins with rock-solid facts, not unfounded assumptions from either Lyme-naysayers or Lyme-advocates.
Many other illnesses look like Lyme, but are not.
Without a careful differential diagnosis of patients with complex, multisystem, multisymptom illness, we routinely see nonsense diagnoses like fibromyalgia, chronic fatigue and Lyme too, when the illness can be shown to be something else.
Mold exposure leads the list of confounding diagnoses, as demonstrated by our three recent peer-reviewed publications .
Some practitioners assume all patients with chronic multisystem illness have Lyme.
They often prescribe intravenous antibiotics that they themselves dispense, collecting fees often exceeding $15,000 a month. Tests used to confirm such "expensive Lyme" must be impeccable.
Clinical diagnosis of "expensive Lyme" must be impeccable.
I was a member of ILADS, the society of "Lyme literates" for three years, lecturing at meetings of both ILADS and the Lyme Disease Association in Easton from 2000 to 2002. In 2003, I quit both groups .
Throwing stones at physicians is a losing approach to thinking. Look at the Mid-Shore Lyme Disease Association in Easton; they sponsored a national meeting with top-drawer Lyme physicians in March 2006.
Having Lyme disease can be a terrible problem; let fact -- not emotion -- sway the approach to the patient.
Dr. Ritchie C. Shoemaker Pocomoke City
Shoemaker is director of the Center for Research on Biotoxin Associated Illnesses in Pocomoke City. -- Editor
I just started reading Dr. S's MOLD WARRIORS book, 2005, last night after reading about it here on the board for at least 1 yr. It was loaned to our city library from Santa Barbara, Calif. Thru our sources available, only 15 public libraries have Ritchie's book.
He found he had huge MOLD ALLERGIES as well so became an expert in this field many years ago. Bettyg Posted by klutzo (Member # 5701) on :
My holistic doctor had never heard of Dr. Shoemaker, but nevertheless kept telling me my Lyme was gone, but I had major mold and yeast problems. He used AK to determine this.
So, I insisted on another Bowen, and though my serial dilution had gone down from 1:128 to 1:32, that is still plenty of Lyme. Of course, I guess Dr. S would say that is a lab that requires cash, therefore worthless.
I have read "Mold Warriors". My confusion comes from the fact that I aced his Visual contrast test for neurotoxins, yet I have documented brain damage that is rated severe, and two positive Lyme tests. In addition, I have major neuro-herxing sx. Somebody has to be wrong here.
I understand his questioning of long-term ABX. There are problems from it, as we all know. I don't understand his antagonistic attitude towards the very people he depends upon for his (very nice) living.
Klutzo
Posted by treepatrol (Member # 4117) on :
I just emailed Lyme Docs at aol ILADS the artical.
I feel like hes just another traitor Posted by Larkspur (Member # 5131) on :
Very suprising for me too. I wish all these folks could work together. I got exposed to mold about a year 1/2 ago, so my LLMD (ILADS member) put me on his cholestyramine/actos protocol; in me it turned on an inflammatory response that caused my leptin resistance to become much much worse as well as develop parasthsias in my feet (I'm convinced it was the CSM protocol) Thanks Ritchie!
Posted by dontlikeliver (Member # 4749) on :
Very interesting.
Posted by sometimesdilly (Member # 9982) on :
Hmm.
I wonder what Dr. Shoemaker has to say about those of us who were "lucky" enough to have a bull eye, all the lyme symptoms in the book, live in a properly endemic area, etc- so rather DEFINITELY have lyme even if an ELISA was neg, and thus receive the standard radically insuffiencent lyme treatment, and hmm, STILL HAVE LYME 4 YEARS AND LOTS LONGER THAN THAT LATER?
Yes, I sure would call any doctor not willing to treat me with long term abx incompetent or ignorant at best, and a coward at worst (along the lines of my PC duck who after every test known to mankind said to me, i don't have a clue what you have, but I KNOW it is not lyme,
And after she had not one but 2 LLMD's let her know HEY YOU IDIOT, THIS LADY HAS LYME!!! her response was that lyme tests were too controversial, and she just couldn't possibly have anything to do with any part of my treatment.
Hmm. I think i'm going way off topic here. Actually, I think i'm.... RANTING. Nevermind. Sorry. Won't happen again...
Dilly
Posted by TerryK (Member # 8552) on :
One LLMD (a member of ILADS) told me that he doesn't believe in much of Shoemaker's theories but he does think that the neurotoxin protocol can be helpful for lyme patients.
Terry
Posted by dontlikeliver (Member # 4749) on :
We've already got a Camp A and Camp B, we certainly don't need a Camp C (mold-camp) also I don't think. The fighting is bad enough as it is already.
Posted by PinchotGail (Member # 5066) on :
Ditto, what you said Klutzo, Cave and Lyme Wolfe......good points!!!
Gail
Posted by Michelle M (Member # 7200) on :
I can understand him believing that mold is a problem for some people. Maybe that's even the problem instead of lyme for some people. However, he's painting the entire lyme community, AND lyme doctors, with a mighy big brush.
What I'd like to know is, can he READ???
Without even being a glorified doctor, I have personally read dozens and dozens of research articles documenting the persistence of borrelia burgdorferi following antibiotic treatment.
We are talking multiple rounds of treatment. Not just speculating here, or going on anecdotal evidence, but getting Bb in cultures, biopsies, and such. NOT just talking about the person still testing positive following treatment, we're talking about the freaking bug is still there. Undaunted. Possibly having tea.
But wait.
We're supposed to believe, all of a sudden, that none of this is actually true. All of these documented studies are horsefeathers! We've been fleeced. Our LLMD's are ripping us off; all the borrelia are dead ALREADY, fer cryin out loud --!!! Don't believe those studies!!! Believe ME! BUY MY STUFF!!!
I'd like to see more of this "study." Probably it consisted of people who didn't have lyme to begin with, or weren't sure WHAT they had.
Mold exposure is a real problem and I don't mean to seem to minimize it. But to basically say that chronic lyme disease doesn't exist at all, and that all LLMD's are simply out to bilk us robs him of all credibility.
I used to find his writings of great interest. I am sad to have to relegate him to the 'tunnel vision' heap and weigh his opinions accordingly.
Michelle
Posted by Nebula2005 (Member # 8244) on :
My latest "LLMD" (and soon to be ex-)fancy-shmancy and outrageously expensive "research physician" prescribed cholestyramine and Welchol for me to take to clear the "biotoxins".
I have never felt this bad in the 17 or so years since THE bite!!!
After giving the world one of the greatest gifts of modern times, the Theory of Relativity, Einstein spent the rest of his life looking for a "unifying theory".
Dr. Shoemaker's theories are based on some very good science. But he's stuck on proving HIS unifying theory, that is, any illness can be blamed on exposure to and inability to clear biotoxins.
He must be very frustrated that the ILADS won't jump in and agree with him.
Oh, the stubborness of the medical mind. Impossible for any of them to get out of their own clever and well-defended boxes.
It's hard not to lose hope.
Posted by seibertneurolyme (Member # 6416) on :
Has anyone done the C4a test which Dr Sh says will prove if you still have an active Lyme infection?
Bea Seibert
Posted by SForsgren (Member # 7686) on :
I've done it and was on the high side of the normal range. Though I don't like the recent comments that were made and do find Dr. S to be rather arrogant, I do think that his work serves a purpose and that mold and biotoxins are often overlooked by people with Lyme disease and should be considered much more fully.
Posted by johnlyme1 (Member # 7343) on :
The thing that I see over and over again that really distubs me is how they generalize and simplify this disease into a "Lyme" only problem. What about co-infection complictions! Yes, if a person has only lyme, it might be easier to get rid of. They forget that once one has been bitten by a tic, what is the licklyhood that it only has lyme in it - how foolish. If one was to truely to compile the data of co-infection involement, even against CDC criteria for lyme, and see how many had co-infections involovement, the stats would be stagering I would think.
Posted by SForsgren (Member # 7686) on :
Agreed on the co-infection retort. Problem ? Go ask a nurse or Doc in your local ER what babesia is and I'll bet 60% can't answer it.
Posted by lou (Member # 81) on :
My guess would be more like 1% would know what babesia is. And that would be for lyme endemic states too.
Posted by CSTPA (Member # 10112) on :
Dr S doe snot mention in his letter to the editor that he requires a visa card payment inorder to take his online vison test from his website, which my doc had be do before and after questran.
I guess we should not trust his test since we have to pay cash up front
C.S.T.
Posted by Truthfinder (Member # 8512) on :
VERY GOOD POINT, C.S.T. (Although he was careful to specify ``labs'' that require cash payments.)
Dr. S. may have been forced to change his viewpoint because his ``clinical studies'' weren't showing the glowing results he wanted them to.
I can only cite one case that I am aware of that I read about last year.
One really ill woman traveled 4,000 miles to see Dr. S. He gave her hope. He found all kinds of things wrong with her, including Lyme. He put her on his protocol. She did well in the beginning, but then began to have problems, and then started feeling worse again.
When it became evident that she was not doing well on Dr. S's protocol, he stopped making contact with her and then quit returning her phone calls. Essentially, he fired her as a patient without even the courtesy to tell her so.
So, when I read about his ``data on 1,500 patients'', I have to wonder exactly WHO gets included in his ``study''. Everybody, or just those who can prove his theories?
Dr. S. may be a brilliant guy. But like Allen Steere, I suspect that finding the truth is far less important than promoting his current beliefs.
And thanks for making this article readable, Betty!
Tracy
Posted by dontlikeliver (Member # 4749) on :
It's sad how some people seem to 'mold' (no pun intended) the picture to fit their agenda, which it seems is what he's done also from reading the above.
Posted by dontlikeliver (Member # 4749) on :
Oops posted to wrong thread
Posted by riversinger (Member # 4851) on :
While I agree that Dr. S's letter to the editor is greatly lacking in tact, I think it is a shame to throw out what is useful about his work.
Two local doctor's offices are finding many long term patients are responding very nicely to Dr. S's complete protocol. Not everyone, but a nice size group. I am currently collecting data to help see who most benefits. Some of this data will be sent to Dr. S, to support his theories, or not.
It is a shame that there is intolerance happening on both sides of this divide, because each has necessary and useful information to provide.
FWIW, I have been having regular C4a tests done for the last year. It seems to correlate somewhat with my CD-57 tests. My last test was 27,100, with a normal range of <700. My CD-57 is below normal. According to Dr. S, this would indicate ongoing infection, especially in the presence of my other labs that he uses, and my HLA type.
I have responded well to CSM and Actos, but with an active infection, I have an ongoing, endless supply of new neurotoxins. Obviously, for me, both treatments are necessary. With only abx, I was on a fast downhill slide. Without it, things also get worse. I wish the two sides could get together and talk!!
Dr. S's protocol is fairly complex, and requires regular labwork to correct course. Many ofthe doctors who have tried it do not understand the whole treatment, so often have no luck with patients. I'm sure Dr. S himself has patients that don't do well. He hasn't got all the answers, that's for sure. But for those who can benefit, don't discount the possibilty this could be of help to you.
Posted by Ann-OH (Member # 2020) on :
I have known about Dr. S. for a long time, communicated with him, read his books, even advertised for him when he wanted people for a study.
Can't say this letter surprised me a lot.
But I have to say, he lost my confidence in whatever he wanted to communicate at "Nonsense."
Any doctor who says "Nonsense" is betraying a flaw, I feel.
Ann - OH
Posted by Areneli (Member # 6740) on :
Please note that Dr. S is not the inventor of this treatment. He is barely a propagator of the idea.
Cholestyramine has helped me a lot in my fight. But I used it as any other drug; without the magic rituals Dr. S advice. Just took 3 sachets per day and this did the job.
I am pretty much disappointed by his letter and guess that he was removed from ILADS for a good reason.
Posted by SForsgren (Member # 7686) on :
I agree with riversinger. I have to say that too many of us focus on just Lyme and do not consider the many other things that may be part of the total body burden. Mold is something I had never thought about until reading about and meeting Dr. S. at a conference. When I investigated further, I did find issues with mold, genetics, etc. that have led me to slightly adjust my course of investigation/treatment. In person, I didn't find him to be the nicest person, but I do think that some of his work has practical application. In fact, I just finished writing about the VCS test as a measure of biotoxins in the body. That will be published in the November edition of the Public Health Alert.
I was also disappointed with the letter that Dr. S. wrote, but I would not want to miss any potential beneficial information that may exist simply as a result of a poorly worded letter. If you have not read Mold Warriors, I do recommend it and also I would recommend only making judgements about his theories after you fully understand them. They have a place even if they are not the final answer.
Posted by Marnie (Member # 773) on :
Turncoat?
Pursuaded to join the others?
Like I've said...the TRUTHS are NOT going to come from THIS COUNTRY:
Curr Microbiol. 2006 Mar 9;
Lyme Disease Associated with Alzheimer's Disease.
Meer-Scherrer L, Chang Loa C, Adelson ME, Mordechai E, Lobrinus JA, Fallon BA, Tilton RC.
Laurence Meer-Scherrer, 37 Flammat, Aumatt,
Switzerland.
This case report discusses a patient with co-occurring neuroborreliosis and Alzheimer's disease (AD).
Although no claim is made for causality nor is there objective evidence that spirochetes are involved in AD, co-infection may exacerbate the symptoms of either neuroborreliosis or AD. Much is to be learned about the role of spirochetes in degenerative central nervous system disease.
PMID: 16528463
Much is to be learned? Who are they kidding? We're not stupid! It might take us awhile to catch on, but TGFTI.
C4A is an active/acute lyme marker...( goes UP)
Duhhhhhhhhhhhhh!
I will post more about this particular enzyme when my computer is "unfrozen".
Active infection.
[ 21. September 2006, 06:00 PM: Message edited by: Marnie ]
Posted by Lymeindunkirk (Member # 7118) on :
Maybe this doctor has Lyme and doesn't realize it. Maybe it is the cause of his present writings. Wouldn't that be ironic.
Posted by MagicAcorn (Member # 8786) on :
nonsense diagnoses like fibromyalgia, chronic fatigue and Lyme too,
Quack Quack Quack Quack Quack Quack Quack!
Posted by Truthfinder (Member # 8512) on :
Scott is probably right - we shouldn't necessarily throw the baby out with the bathwater.
But do any of us know anyone who has gotten well with Dr. S's "post-Lyme (post-abx) specific interventions"?
quote:Our data on 1,500 patients show the vast majority of post-Lyme patients have an nflammatory illness that requires specific interventions following antibiotics -- not antibiotics forever.
I'm just not sure I trust the ethics of how his "data" is gathered.
And by the way, if he doesn't believe in long term abx, WHY do we need to protect him by calling him "Dr. S."?
Tracy
Posted by treepatrol (Member # 4117) on :
He not only betray's us but himself also.
When you betray somebody else, you also betray yourself. Isaac Bashevis Singer
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