Re: Lyme research

[Guest guest]

And we used to treat syp with mercury till proper trials were done.CE Grim MDThere is considerable research. Because I am not familiar with all of it does not mean it doesn't exist. There was enough research presented at the IDSA hearings that they felt it necessary to suppress much of it. To me, that is near criminal. Treating Lyme makes as much sense as treating syphilis. Treating syphilis makes sense and is supported in the literature. Here's something to start with: http://www.pacificfrontiermedical.com/pdfs/37.pdf "... a history of longer duration of symptoms or antibiotic treatment was associated with longer treatment times to achieve improvement and cure. These results support the use of longer courses of treatment in the management of patients with chronic Lyme disease."http://www.ncbi.nlm.nih.gov/pubmed/9233665?ordinalpos=1 & itool=EntrezSystem2.PEntrez.Pubmed.Pubmed_ResultsPanel.Pubmed_SingleItemSupl.Pubmed_Discovery_RA & linkpos=1 & log$=relatedarticles & logdbfrom=pubmedhttp://www.ncbi.nlm.nih.gov/pubmed/20052487?itool=EntrezSystem2.PEntrez.Pubmed.Pubmed_ResultsPanel.Pubmed_RVDocSum & ordinalpos=6 http://www.ncbi.nlm.nih.gov/pubmed/8852456?ordinalpos=1 & itool=EntrezSystem2.PEntrez.Pubmed.Pubmed_ResultsPanel.Pubmed_SingleItemSupl.Pubmed_Discovery_RA & linkpos=2 & log$=relatedarticles & logdbfrom=pubmed http://www.ncbi.nlm.nih.gov/pubmed/8006888?ordinalpos=1 & itool=EntrezSystem2.PEntrez.Pubmed.Pubmed_ResultsPanel.Pubmed_SingleItemSupl.Pubmed_Discovery_RA & linkpos=4 & log$=relatedreviews & logdbfrom=pubmed Here's one that concludes that 90 days of treatment for chronic Lyme doesn't help anything. I would be willing to argue that 90 days is but a mere drop-in-the-bucket. This research proves that 90 days means nothing, and it proves nothing but that. http://www.ncbi.nlm.nih.gov/pubmed/11450676?ordinalpos=1 & itool=EntrezSystem2.PEntrez.Pubmed.Pubmed_ResultsPanel.Pubmed_SingleItemSupl.Pubmed_Discovery_RA & linkpos=1 & log$=relatedarticles & logdbfrom=pubmed Here's another that cites another "90 day" study.http://www.ncbi.nlm.nih.gov/pubmed/12118171?ordinalpos=1 & itool=EntrezSystem2.PEntrez.Pubmed.Pubmed_ResultsPanel.Pubmed_SingleItemSupl.Pubmed_Discovery_RA & linkpos=5 & log$=relatedreviews & logdbfrom=pubmed I wonder how many lives have been lost from stupid research like this. It took 3.5 years for my niece to get well. The problem with me is that this is my last chance. I am considerably better than months ago. I am eternally grateful to my doc in CA that he tested and re-tested until he found it. He didn't stop with the first superficial test. Too many do one simple test and if it is negative, rule out Lyme. That's what happened to me 21 years ago. The tests have a high rate of false negatives but a low rate of false positives. There are no accurate tests. Val

[Guest guest]

Medicine is not a static science. They used to treat ulcers with milk,

too! My husband was hospitalized

twice, two weeks at a time, with an ulcer.. They gave him Valium, Riopan, and milk.

Then he got pneumonia. Two

weeks of antibiotics and he has never again had a problem. That was 30 years ago. Thank God, the good doctor who made the

discovery did not buckle under the pressure and ridicule of mainstream

medicine.

Val

From: hyperaldosteronism

[mailto:hyperaldosteronism ] On Behalf Of Clarence Grim

And we used to treat syp with

mercury till proper trials were done.

[Guest guest]

“Ever

notice how the IDSA did not announce or acknowledge the 1,600 page

peer-reviewed scientific evidence of ILADS? “

http://www.lymedisease.org/news/lymepolicywonk/389.html

Val

[Guest guest]

This explains the issues much

better than I can

__________________________________

Testimony before the IDSA

hearing committee

by Lorraine , JD, MBA

California Lyme Disease

Association

Under the antitrust

settlement agreement, the panel is charged with determining whether each of the

recommendations in the guidelines is medically, scientifically justified in

light of all of the evidence. Any contested recommendation will require a 75%

super majority vote by this panel to stand.

Guidelines that restrict

clinical judgment and deprive patients of treatment options should not exceed

their evidence-base. A recent JAMA article describes the authority-base for

evidence-based guidelines as evidence-based, not opinion-based. This

authority-base stops where science is unknown, because opinion, even expert

opinion is not science. Accordingly, this panel must determine whether the science supporting each of the

guideline recommendations is complete and adequate or whether the science is

emerging and, incomplete, and subject to legitimate dispute--to

distinguish what we know from what we don’t know.

Science and Lyme disease is

limited, uncertain, and emerging. Here are just two examples: first, there are

no good biological markers for this disease and according to neurologist Israel

Steiner, this means that clinical treatment trials in Lyme try to solve one

equation with too many unknown variables and makes every attempt to address

clinical questions in the realm of PLD doomed almost by definition to leave

unanswered the very definition of the disease, its diagnostic criteria, its

pathogenesis, optimum treatment durations, research endpoints, and the role of

persistent subjective complaints – and aren’t these the same issues

that we’re here to discuss today? And won’t they necessarily remain

open until we have a good biological marker for this disease?

Second, the emerging science

on strains is expected to alter how we diagnose and treat this disease.

According to Dr. Alan Barber, identification of the strain a person is infected

with could help guide therapy and some strains may call for longer courses of

antibiotics. Any isolate of Borrelia

burgdorferi from a patient would mean a

diagnosis of Lyme disease.

Consider this, there are over

100 strains in the United States that have been identified so far, yet none of

the clinical treatment trials have taken strain variation into account. And

strain variation may explain why some patients test positive for Lyme disease

and some do not. And it may also explain why some patients respond well to shorter

term courses of antibiotics and others require more extensive treatments.

Despite these unknowns--and I

have raised just two--the IDSA guidelines extend well beyond their

science-base. Guidelines should not restrict clinical judgment unless known

science so dictates because uncertain science requires clinical flexibility and

because the risk of getting it wrong based on opinion is too great when the

patients are suffering.

Guideline panels for other illnesses

defer to clinical judgment and provide treatment options where science is

uncertain, where

different treatment options exists, where treatment outcomes are variable, and

where the quality of life implications are significant. For example, prostate

cancer guidelines offer four treatment options, watchful waiting, radiation,

surgery, hormone suppression; and other examples include breast cancer,

ischemic heart disease, back pain, and hormone replacement, to name a few.

These guidelines assume that

research studies should precede any clinical treatment of patients, but this

puts the cart before the horse because patients need care today and because

evidence gaps are abundant in medicine. More than half of all medical treatments have not been

validated by clinical trials and stopping treatment pending research

would simply shut down most medical care in the United States today. Because of

this, guidelines must default to treatments that reflect individualized medical

judgment, not no treatment.

So, what is our goal? What do

patients want? We want

guidelines that accurately reflect the state of the science and that are open

to emerging science. Scientific evidence in Lyme disease is uncertain.

Different diagnosis and treatment options in Lyme disease do exist. Treatment

outcomes in Lyme are highly variable and quality of life trade

offs in Lyme are very significant. Accordingly, the Lyme guidelines

should be revised to accurately reflect the state of the science and the

uncertainty there – to acknowledge legitimate scientific controversy

regarding the diagnosis and treatment of this disease, to permit flexibility

and clinical judgment, and to provide treatment options to patients who are

trying to restore themselves to functional lives.

[Guest guest]

One of the best studies that stopped the milk diet was one done at Duke I think in which they actually gave acid or milk and found there was no difference.Also they froze stomachs for about 2 years until a randomized trial which was going on when I was at Duke in which the tube went down the throat and the cold water went down but not into the stomach filling balloon vs into the balloon. But by the time the study was completed the compancy had sold about 10000 machines. Great theory in the dog lab but did not work in humans.I will be happy to work with your Drs to design a proper trial to test the effect of the treatment of chronic Lyme.What one will need is the criteria on how you judge if a patient is better or not and then a placebo to give to 1/2 the subjects who agree to be in the trial. We will also need to get informed consent (go to Integreview for details).The Ho is that the use of treatment X makes folks better over the short and long haul.It is critical the Dr, staff and patient do not know who is getting which treatment.So if there is a standard treatment protocol this should really be easy to do. Assuming the proponents are willing to do the test.“Ever notice how the IDSA did not announce or acknowledge the 1,600 page peer-reviewed scientific evidence of ILADS? “ http://www.lymedisease.org/news/lymepolicywonk/389.html Val

[Guest guest]

.....and to provide treatment options to patients who are trying to restore themselves to functional lives.This is an excellent goal and should be easy to test so I don't see what the hold up is? Are there not enough with the problem to do a proper trial? From what I read there may be thousands or even millions who could benefit. So if each one donates say $100 then that should be able to fund a decent trial. The reason so much progress was made with HIV was the power of its lobby. Hmmm now that I think of it HIV patients must be more susceptible as their immune is suppressed. I recommend you see how many with Lyme also have HIV and if you can get them to be a more effective lobby to make progress on this issue.CE Grim MDand to provide treatment options to patients who are trying to restore themselves to functional lives.

[Guest guest]

You may want to start with this link http://www.rarediseases.org/search/rdbdetail_abstract.html?disname=Lyme%20Disease

From this link can go to other links.

> > > and to provide treatment options to patients who are trying to > > restore themselves to functional lives.>

[Guest guest]

Definitions:

IDSA = Infectious Disease Society of

America

ILADS = International Lyme And Associated

Diseases Society

LLMD

= Lyme literate MD, generally one who subscribes to the ILADS protocol

There are problems with studying Lyme.

1.

There is NO accurate test. How does one measure success/failure?

2.

Over 100 strains of borreliosis have

been identified. The type of strain

may affect why short term treatment works for some and leaves others

infected. It may affect why some

have long-term, chronic Lyme and some do not. It may affect the response to different

antibiotics. Lyme literate doctors

have a whole arsenal of combinations and permutations of antibiotics they

use. They also have a whole arsenal

of detox substances. If one doesn’t know which strain

he’s working with at the outset, how can the rest be measured? While a study might find that x + y

works 88% of the time, what would it take for the other 12% to be healed? That’s why Lyme treatment is so

variable and imprecise, why it is an art, and why IDSA cannot consider this

settled science.

3.

Perhaps different chemical makeup of

Lyme-infected people have different responses to different treatments.

4.

Money.and time

5.

You’re working with very, very

sick people; most of whom would be unwilling to chance a placebo. People die from Lyme. I would not chance a placebo.

My doctor is well aware of how to do a

study. The problem is funding and

time. He’s made many

presentations at professional meetings and recently wrote the first chapter in

a new Lyme book. I don’t know

what else he’s done, but he has thousands of patients. He is a consultant to Igenex, the lab that finally found my infection. His office is overwhelmed with sick

people and it is hard to get a call-back.

I’ve found a LLMD where I live and am thinking of switching

instead of making the treks to CA.

I’m afraid of having a bad reaction and not having a doc

around. I’ve already had bad

(Herxheimer) reactions to two antibiotics. BTW, Igenex is

the lab all LLMDs use, not just my doc.

Lyme-literate physicians are few and

far between, mostly because of the heavy hand of IDSA. Someone complains and IDSA members show

up to testify against them. That is

why they need protection – from the arrogant ignoranuses

(ignorant anus) who somehow believe Lyme treatment is a settled science. Dr. Ray , the 82-year-old

treating physician has been in trouble twice; once for ordering tests before he

saw the child, and the second where, in collaboration with the pediatrician, he

prescribed doxy before he’d seen the child. Both complaints were filed by the

non-custodial parent. Of course,

IDSA showed up to testify against him.

IDSA is precisely the reason LLMDs are now protected in three states. Minnesota is turning its head for five

years and will re-visit the issue then.

My big hesitation in leaving my doc in CA is that CA protects LLMDs and

Colorado does not.

My fear of the new health care bill and

its guideline-writing panels is that, if IDSA writes the guidelines, sick

people will be totally out of luck because their insurance will conform to what

the federal government dictates. In

that sense, one can easily refer to the guideline-writing panels as death

panels. I can foresee a time when

any treatment outside of the federal guidelines will be prohibited. The art of medicine will be a thing of

the past. Innovation will be a

thing of the past. Doctors will be

mere box-checkers instead of medical artists and scientists.

The only way to find a LLMD is to get

involved with various resources and then ask around. Each resource asks that you not use the

doc’s name publically. Is

that disgusting or what? In

Colorado, there are only three LLMDs.

I’ve found a group that meets once a month. One of its leaders has been on

antibiotics two years and the other for six years. Every time they try to go off, their

symptoms return. Otherwise, they

are healthy and functioning. At the

last meeting, we had a young woman, 32 years old, who has had Lyme since her

teen years. Her little stabs at treatment have not been successful. Her face was ashen and she was shaking

like a leaf. Kinda’

reminded me of myself a few months ago.

Everyone at the meeting had been told to see a shrink. I got my notes from my endo (who knows nothing about PA). Two thirds of the page was about how I

needed to see a shrink and how messed up in the head I was. All the time I saw her, I was

shaking like a leaf.

ILADS has treatment guidelines that

were developed from research and experience of its members. In fact, ILADS turned in 1,600 pages of

research to the IDSA re-hearing that the CT attorney general ordered. There are many “fringe”

treatments that are not accepted by ILADS (rife machines, sale/Vitamin C,

colloidal silver, etc.). All the

more reason to have an ILADS member as a doc.

One last bit. My gums went haywire about four months

after I got sick in 1985. My

dentist couldn’t understand how I had suddenly developed such serious

periodontal disease without an apparent infection. I have been meticulous in maintaining

them all these years, including a cleaning every three months. Last week, I went in for a

cleaning. The hygienist was shocked

at the improvement. She could not

believe what she was seeing. It has

to be the antibiotics. There is a drug on the market now for periodontal

disease – Periostat (doxycycline, 40 mg/day). I was on it for a long time but

apparently, the dose was not high enough.

Maybe the depth of periodontal pockets could be one of the measurements

for treatment success in research.

Val

From: hyperaldosteronism

[mailto:hyperaldosteronism ] On Behalf Of Clarence Grim

One of the best studies that stopped the milk diet was one

done at Duke I think in which they actually gave acid or milk and found there

was no difference.

Also

they froze stomachs for about 2 years until a randomized trial which was going

on when I was at Duke in which the tube went down the throat and the cold water

went down but not into the stomach filling balloon vs

into the balloon. But by the time the study was completed the compancy had sold about 10000 machines. Great theory

in the dog lab but did not work in humans.

I

will be happy to work with your Drs to design a proper trial to test the effect

of the treatment of chronic Lyme.

What

one will need is the criteria on how you judge if a patient is better or not

and then a placebo to give to 1/2 the subjects who agree to be in the

trial.

We

will also need to get informed consent (go to Integreview

for details).

The

Ho is that the use of treatment X makes folks better over the short and long

haul.

It

is critical the Dr, staff and patient do not know who is getting which

treatment.

So

if there is a standard treatment protocol this should really be easy to do.

Assuming the proponents are willing to do the test.

[Guest guest]

Definitions:IDSA = Infectious Disease Society of AmericaILADS = International Lyme And Associated Diseases SocietyLLMD = Lyme literate MD, generally one who subscribes to the ILADS protocol There are problems with studying Lyme. 1. There is NO accurate test. How does one measure success/failure?What a great way to become rich treating a disease that cannot be diagnosed and in which there enough permutations and combinations of treatment that you will never run out of something to try next.2. Over 100 strains of borreliosis have been identified. The type of strain may affect why short term treatment works for some and leaves others infected. It may affect why some have long-term, chronic Lyme and some do not. It may affect the response to different antibiotics. Lyme literate doctors have a whole arsenal of combinations and permutations of antibiotics they use. They also have a whole arsenal of detox substances. If one doesn’t know which strain he’s working with at the outset, how can the rest be measured? While a study might find that x + y works 88% of the time, what would it take for the other 12% to be healed? That’s why Lyme treatment is so variable and imprecise, why it is an art, and why IDSA cannot consider this settled science.Yada yada yada. One cannot treat a disease in which the diagnosis cannot be made and the cause is not know. Clearly more science is needed here.3. Perhaps different chemical makeup of Lyme-infected people have different responses to different treatments.That is true of all diseases.4. Money.and time So treatment is free and the Drs dont get paid so have no money to support research that make make them famous and rich? or put them out of business.?5. You’re working with very, very sick people; most of whom would be unwilling to chance a placebo. People die from Lyme. I would not chance a placebo.All magic cures make this claim. My doctor is well aware of how to do a study. The problem is funding and time. He’s made many presentations at professional meetings and recently wrote the first chapter in a new Lyme book. I don’t know what else he’s done, but he has thousands of patients. He is a consultant to Igenex, the lab that finally found my infection. His office is overwhelmed with sick people and it is hard to get a call-back. I’ve found a LLMD where I live and am thinking of switching instead of making the treks to CA. I’m afraid of having a bad reaction and not having a doc around. I’ve already had bad (Herxheimer) reactions to two antibiotics. BTW, Igenex is the lab all LLMDs use, not just my doc.Does he own stock in Igenex. How much a year does he make from them in consulting fees?Sounds like a good 60 Minutes story to me. Lyme-literate physicians are few and far between, mostly because of the heavy hand of IDSA. Someone complains and IDSA members show up to testify against them. That is why they need protection – from the arrogant ignoranuses (ignorant anus) who somehow believe Lyme treatment is a settled science. Dr. Ray , the 82-year-old treating physician has been in trouble twice; once for ordering tests before he saw the child, and the second where, in collaboration with the pediatrician, he prescribed doxy before he’d seen the child. Both complaints were filed by the non-custodial parent. Of course, IDSA showed up to testify against him. IDSA is precisely the reason LLMDs are now protected in three states. Minnesota is turning its head for five years and will re-visit the issue then. My big hesitation in leaving my doc in CA is that CA protects LLMDs and Colorado does not.People die from Herxhiemier reactions you know. My fear of the new health care bill and its guideline-writing panels is that, if IDSA writes the guidelines, sick people will be totally out of luck because their insurance will conform to what the federal government dictates. In that sense, one can easily refer to the guideline-writing panels as death panels. I can foresee a time when any treatment outside of the federal guidelines will be prohibited. The art of medicine will be a thing of the past. Innovation will be a thing of the past. Doctors will be mere box-checkers instead of medical artists and scientists.You contact your representatives just as the HIV lobby did and you get legislation to do proper evaluation. Medicare has enough problems in taking care of all the known ways we have to improve health. If I were in charge Medicare would not pay for any new drugs or Dx devices or implants until the company had proven that they were better than the old treatment. This would save trillions and lives.The only way to find a LLMD is to get involved with various resources and then ask around. Each resource asks that you not use the doc’s name publically. Is that disgusting or what? In Colorado, there are only three LLMDs. I’ve found a group that meets once a month. One of its leaders has been on antibiotics two years and the other for six years. Every time they try to go off, their symptoms return. Otherwise, they are healthy and functioning. At the last meeting, we had a young woman, 32 years old, who has had Lyme since her teen years. Her little stabs at treatment have not been successful. Her face was ashen and she was shaking like a leaf. Kinda’ reminded me of myself a few months ago. Everyone at the meeting had been told to see a shrink. I got my notes from my endo (who knows nothing about PA). Two thirds of the page was about how I needed to see a shrink and how messed up in the head I was. All the time I saw her, I was shaking like a leaf.I would recommend that each of these work with their practitioner to do an n of 1 trial. Indeed that may be the best way to go for all with the Dx of Lyme. What one needs is a company to supply placebos so the study can be done properly. ILADS has treatment guidelines that were developed from research and experience of its members. In fact, ILADS turned in 1,600 pages of research to the IDSA re-hearing that the CT attorney general ordered. There are many “fringe” treatments that are not accepted by ILADS (rife machines, sale/Vitamin C, colloidal silver, etc.). All the more reason to have an ILADS member as a doc. One last bit. My gums went haywire about four months after I got sick in 1985. My dentist couldn’t understand how I had suddenly developed such serious periodontal disease without an apparent infection. I have been meticulous in maintaining them all these years, including a cleaning every three months. Last week, I went in for a cleaning. The hygienist was shocked at the improvement. She could not believe what she was seeing. It has to be the antibiotics. There is a drug on the market now for periodontal disease – Periostat (doxycycline, 40 mg/day). I was on it for a long time but apparently, the dose was not high enough. Maybe the depth of periodontal pockets could be one of the measurements for treatment success in research.Perioprotect program also uses this. I have used this with some success but am also brushing better and more often so don't know which is working better. Gum disease may be caused by spirocetes as well.Does anyone have a good Lyme disease data base so you all can begin collecting data in a systematic fashion. Need to capture all who enter the program so you have a denominator. I would think one of the socities would be interested in doing this.At least that would be a start. I would hope the Lyme Drs already have this going. Ask them and see if your group can help develop this.CE Grim MD Val From: hyperaldosteronism [mailto:hyperaldosteronism ] On Behalf Of Clarence GrimOne of the best studies that stopped the milk diet was one done at Duke I think in which they actually gave acid or milk and found there was no difference. Also they froze stomachs for about 2 years until a randomized trial which was going on when I was at Duke in which the tube went down the throat and the cold water went down but not into the stomach filling balloonvs into the balloon. But by the time the study was completed the compancy had sold about 10000 machines. Great theory in the dog lab but did not work in humans. I will be happy to work with your Drs to design a proper trial to test the effect of the treatment of chronic Lyme. What one will need is the criteria on how you judge if a patient is better or not and then a placebo to give to 1/2 the subjects who agree to be in the trial. We will also need to get informed consent (go to Integreview for details). The Ho is that the use of treatment X makes folks better over the short and long haul. It is critical the Dr, staff and patient do not know who is getting which treatment. So if there is a standard treatment protocol this should really be easy to do. Assuming the proponents are willing to do the test.

[Guest guest]

What

a great way to become rich treating a disease that cannot be diagnosed and in

which there enough permutations and combinations of treatment that you will

never run out of something to try next.

People should be paid for the

work they do.

People

die from Herxhiemier reactions you know.

They do, and they die from Lyme.

If I

were in charge Medicare would not pay for any new drugs or Dx devices or

implants until the company had proven that they were better than the old

treatment.

I am reminded of my friend with

ovarian cancer. She is 6.5 years

from diagnosis and in remission.

She’s noted that she’s been allowed newer-class drugs that

her Medicare sisters at the infusion center were not allowed to have. Some have died. Dr. Grim, Medicare is already denying

treatment. In fact, it denies 1/3

more than private insurance. People

who are forced into Medicare should be well off before they get there!

Does

anyone have a good Lyme disease data base so you all can begin collecting data

in a systematic fashion. Need to capture all who enter the program so you

have a denominator. I would think one of the socities would be interested

in doing this.

At

least that would be a start. I would hope the Lyme Drs already have this

going. Ask them and see if your group can help develop this.

My group is a tiny Yahoo group of sick people in Colorado. I assume the bigger Lyme organizations

are doing such research. A couple (Time for Lyme & Turn the Corner Foundation) have funded private/public

studies at the U of Colorado. I

bought stock in the company (VRAL). If it goes to $50, I’ll be well

off. (Right now, its at $.05.) It is interesting technology. http://www.viralgenetics.com/pr_021110.html

Val

From: hyperaldosteronism

[mailto:hyperaldosteronism ] On Behalf Of Clarence Grim

My fear of the new

health care bill and its guideline-writing panels is that, if IDSA writes the

guidelines, sick people will be totally out of luck because their insurance

will conform to what the federal government dictates. In that sense, one can easily refer to

the guideline-writing panels as death panels. I can foresee a time when any treatment

outside of the federal guidelines will be prohibited. The art of medicine will be a thing of

the past. Innovation will

be a thing of the past. Doctors

will be mere box-checkers instead of medical artists and scientists.

You

contact your representatives just as the HIV lobby did and you get legislation

to do proper evaluation. Medicare has enough problems in taking care of

all the known ways we have to improve health. This would save

trillions and lives.

The only way to find a LLMD

is to get involved with various resources and then ask around. Each resource asks that you not use

the doc’s name publically. Is

that disgusting or what? In

Colorado, there are only three LLMDs. I’ve

found a group that meets once a month. One

of its leaders has been on antibiotics two years and the other for six years. Every time they try to go off,

their symptoms return. Otherwise,

they are healthy and functioning. At

the last meeting, we had a young woman, 32 years old, who has had Lyme since

her teen years. Her little stabs at treatment have not been successful. Her face was ashen and she was shaking

like a leaf. Kinda’ reminded me of myself a few months ago. Everyone at the meeting had been told

to see a shrink. I got my

notes from my endo (who knows nothing about PA). Two thirds of the page was about how I

needed to see a shrink and how messed up in the head I was. All the time I saw her, I was shaking

like a leaf.

I

would recommend that each of these work with their practitioner to do an n of 1

trial. Indeed that may be the best way to go for all with the Dx of Lyme. What one needs is a company to supply

placebos so the study can be done properly.

ILADS has

treatment guidelines that were developed from research and experience of its

members. In fact, ILADS

turned in 1,600 pages of research to the IDSA re-hearing that the CT attorney

general ordered. There are

many “fringe” treatments that are not accepted by ILADS (rife

machines, sale/Vitamin C, colloidal silver, etc.). All the more reason to have an ILADS

member as a doc.

One last

bit. My gums went haywire

about four months after I got sick in 1985. My dentist couldn’t understand

how I had suddenly developed such serious periodontal disease without an

apparent infection. I have

been meticulous in maintaining them all these years, including a cleaning every

three months. Last week, I

went in for a cleaning. The

hygienist was shocked at the improvement. She could not believe what she was

seeing. It has to be the

antibiotics. There is a drug on the market now for periodontal disease –

Periostat (doxycycline, 40 mg/day). I

was on it for a long time but apparently, the dose was not high enough. Maybe the depth of periodontal pockets

could be one of the measurements for treatment success in research.

Perioprotect program also uses this. I have used this with some

success but am also brushing better and more often so don't know which is

working better. Gum disease may be caused by spirocetes

as well.

CE

Grim MD

[Guest guest]

Well in China they used to pay the Dr as long as they were well. When they got sick they did not pay as the Dr must have screwed up or they would be well.We will always have to deny some medical therapies: we cannot do heart transplants in everyone for example. We cannot dialyze everyone forever.What we can do is to continuously evaluate our treatments and test new ones properly before the are wide spread. For example it seems clear that too many folks have had $50000 defibrillators put in that did not need them. I suspect many are getting electronic scooters that do not really need them. I know that for my CPAP machine I get 4 1 x 2 pieces of filter every 3 months that look like they are cut out of a furnace filter (about 200 could come out of a single filter). Medicare is charged $18 for them. I am going to file complaint about this likely excess cost.I hope your friend was part of a trial so we now know more than we did about the new medicine she was given. We need to be sure the ones we are paying for are the best proven in outcomes and cost. That way the most benefit from our limited resources.People should be paid for the work they do.

[Guest guest]

Maybe we shouldn't pay doctors unless they diagnoses us.

Haveing been caregiver to both my father and mother got to learn a few things

about medicare. Unless things changed in the last ten years they only pay what

is medically necessary. While the scooters adds make you think it is easy to

have medicare pay for one it is an other thing to to get medicare to pay for

one.

>

> > People should be paid for the work they do.

>

[Guest guest]

One question that needs to be answered is does lymes or other conditions cause

or affect or have same SX as PA?

> >

> > > People should be paid for the work they do.

> >

>

[Guest guest]

One question that needs to be answered is does lymes or other conditions cause

or affect or have same SX as PA?

> >

> > > People should be paid for the work they do.

> >

>

[Guest guest]

Because one has no good test for Lyme I cannot answer this. As Lyme has been associated with every symptom in the world the anser is yes-all sx of PA CAN BE same as "lyme" but I would not waste time Lyme till PA issue is figured out nTiped sad Send form miiPhone ;-)May your pressure be low!CE Grim MDSpecializing in DifficultHypertension

One question that needs to be answered is does lymes or other conditions cause or affect or have same SX as PA?

> >

> > > People should be paid for the work they do.

> >

>

[Guest guest]

Because one has no good test for Lyme I cannot answer this. As Lyme has been associated with every symptom in the world the anser is yes-all sx of PA CAN BE same as "lyme" but I would not waste time Lyme till PA issue is figured out nTiped sad Send form miiPhone ;-)May your pressure be low!CE Grim MDSpecializing in DifficultHypertension

One question that needs to be answered is does lymes or other conditions cause or affect or have same SX as PA?

> >

> > > People should be paid for the work they do.

> >

>

[Guest guest]

What a

great way to become rich treating a disease that cannot be diagnosed and in

which there enough permutations and combinations of treatment that you will

never run

Just imagine where most people on this list would be had Dr.

Conn not taken out that first adrenal.

That surgery had to have been miles out of mainstream medicine.

People

die from Herxhiemier reactions you know.

They do, and

they die from Lyme, and from untreated adrenal adenomas. Sixty years after Conn, endocrinologists

finally came out with standard treatment guidelines, and those guidelines

don’t even include DASH. Some

of the guidelines are NOT 100% supported by controlled studies. The treatment of Conn’s is still

evolving.

Does

anyone have a good Lyme disease data base so you all can begin collecting data

in a systematic fashion. Need to capture all who enter the program so you

have a denominator. I would think one of the socities

would be interested in doing this.

I

believe Columbia University is developing such a database. The study of Lyme disease is far beyond

a few kooks who think they are sick.

[Guest guest]

What a

great way to become rich treating a disease that cannot be diagnosed and in

which there enough permutations and combinations of treatment that you will

never run

Just imagine where most people on this list would be had Dr.

Conn not taken out that first adrenal.

That surgery had to have been miles out of mainstream medicine.

People

die from Herxhiemier reactions you know.

They do, and

they die from Lyme, and from untreated adrenal adenomas. Sixty years after Conn, endocrinologists

finally came out with standard treatment guidelines, and those guidelines

don’t even include DASH. Some

of the guidelines are NOT 100% supported by controlled studies. The treatment of Conn’s is still

evolving.

Does

anyone have a good Lyme disease data base so you all can begin collecting data

in a systematic fashion. Need to capture all who enter the program so you

have a denominator. I would think one of the socities

would be interested in doing this.

I

believe Columbia University is developing such a database. The study of Lyme disease is far beyond

a few kooks who think they are sick.

[Guest guest]

I think you are miss reading what Dr Gris is saying. He is very much in

agreement with you on much of what you are saying. His concern is unproven

treatment can kill.

I belive he knows that a lot more has to be learned about Conn's this is just

what he is trying to do with this group.

>

> What a great way to become rich treating a disease that cannot be diagnosed

> and in which there enough permutations and combinations of treatment that

> you will never run

> Just imagine where most people on this list would be had Dr. Conn not taken

> out that first adrenal. That surgery had to have been miles out of

> mainstream medicine.

>

> People die from Herxhiemier reactions you know.

> They do, and they die from Lyme, and from untreated adrenal adenomas.

> Sixty years after Conn, endocrinologists finally came out with standard

> treatment guidelines, and those guidelines don't even include DASH. Some of

> the guidelines are NOT 100% supported by controlled studies. The treatment

> of Conn's is still evolving.

> Does anyone have a good Lyme disease data base so you all can begin

> collecting data in a systematic fashion. Need to capture all who enter the

> program so you have a denominator. I would think one of the socities would

> be interested in doing this.

> I believe Columbia University is developing such a database. The study of

> Lyme disease is far beyond a few kooks who think they are sick.

>

[Guest guest]

That is very true. The pt was in the hospital metabolic unit for a year trying to document what was going on. Because of his work during WWII on the mechanism of Heat Adaptation he realized the the pt appeared to be making too much of the heat adaptation hormone DOCA. Aldo had not been discovered yet! Renin could not be measured either. Afrer one year of study they expected to find bilateral adrenal hyperplasia and were astounded and very pleased when, after looking at both adrenals at surgery (which was the only way to look then) and found a single tumor he jumped for joy he said.As he once told me it just takes one well studied case to prove a point-but it has to be very well studied and thought out and tested.This story would make an excellent PBS documentary in fact. Any TV producers out there?CE Grim MD What a great way to become rich treating a disease that cannot be diagnosed and in which there enough permutations and combinations of treatment that you will never run Just imagine where most people on this list would be had Dr. Conn not taken out that first adrenal. That surgery had to have been miles out of mainstream medicine. People die from Herxhiemier reactions you know. They do, and they die from Lyme, and from untreated adrenal adenomas. Sixty years after Conn, endocrinologists finally came out with standard treatment guidelines, and those guidelines don’t even include DASH. Some of the guidelines are NOT 100% supported by controlled studies. The treatment of Conn’s is still evolving. Does anyone have a good Lyme disease data base so you all can begin collecting data in a systematic fashion. Need to capture all who enter the program so you have a denominator. I would think one of the socitieswould be interested in doing this.I believe Columbia University is developing such a database. The study of Lyme disease is far beyond a few kooks who think they are sick.

[Guest guest]

Its the same with thyroid disease that's why there are support groups being set up. People are desperate. All due to endocrine treatment living in the dark ages!Thousand die of related problems; heart attack, liver etc when thyroid isn't working it affects the whole body..My mum wasn't diagnosed for 12 years. She can't walk as riddled with arthritis, feet hurt, high bp, salt craving, dizzy all the time, can't breath after walking up the stairs, water retention..Gp said thyroid is okay!!! Ridiculous her adrenals are whacked but why don't they help?! When is the country going to move into 2010 or is it to kill us all off faster...If you had an infection you wouldn't wait til you were close to death you'd treat it. So why is it so different with hormones..We are living in a new world with fast food, rubbish put in our food plus a fast paced life style ...Sent using BlackBerry® from OrangeDate: Mon, 05 Apr 2010 17:23:17 -0000To: <hyperaldosteronism >Subject: Re: Lyme research I think you are miss reading what Dr Gris is saying. He is very much in agreement with you on much of what you are saying. His concern is unproven treatment can kill. I belive he knows that a lot more has to be learned about Conn's this is just what he is trying to do with this group. >> What a great way to become rich treating a disease that cannot be diagnosed> and in which there enough permutations and combinations of treatment that> you will never run > Just imagine where most people on this list would be had Dr. Conn not taken> out that first adrenal. That surgery had to have been miles out of> mainstream medicine. > > People die from Herxhiemier reactions you know.> They do, and they die from Lyme, and from untreated adrenal adenomas.> Sixty years after Conn, endocrinologists finally came out with standard> treatment guidelines, and those guidelines don't even include DASH. Some of> the guidelines are NOT 100% supported by controlled studies. The treatment> of Conn's is still evolving. > Does anyone have a good Lyme disease data base so you all can begin> collecting data in a systematic fashion. Need to capture all who enter the> program so you have a denominator. I would think one of the socities would> be interested in doing this.> I believe Columbia University is developing such a database. The study of> Lyme disease is far beyond a few kooks who think they are sick.>

[Guest guest]

I need to clarify one statement

I made. The easy test, ELISA, gives

false positives 30 – 50% of the time. It is not a good test. Unfortunately too many non Lyme-literate

docs don’t understand that.

Within the recent past, a new DNA test has been developed but I don’t

know anything about it except it is only valid early in the disease (if

that). There are good tests for

Lyme, but they are more difficult to do.

I went through three stages of testing before mine showed positive. My understanding is that false positives

are rare.

When I got sick in 1985, the

first thing my doc considered was Lyme.

He queried me about a rash but unfortunately, didn’t do the

screening test. He diagnosed ankylosing spondylitis although the

only test for it was negative. It

was a clinical diagnosis and unfortunately for me, it was wrong. I had every symptom of Lyme, not

spondylitis.

Three years later, after I moved

to Minnesota, the doctor I saw was convinced I had Lyme but the ELISA test was

negative. She had no suggestions

for anything further. I was in

terrible pain, on

anti-inflammatories, and would have killed for them. The ELISA test is an antibody test and

antibodies don’t last forever.

By 1986 or 1987, I had significantly high antibodies that destroyed my

thyroid. Now, my antibodies are

zero. Because they are zero does

not mean I’m not hypothyroid.

I believe I picked up Lyme in

Arkansas while walking through the woods.

My sister-in-law had many Lyme symptoms over the years and died

suddenly, of no apparent cause, at age 53.

She just dropped over. The

autopsy found nothing – no drugs, no alcohol, no heart disease. I seriously doubt they tested for Lyme

as it was an official law enforcement investigation. Her husband was formally diagnosed a

couple of years ago, treated promptly and is fine today. My mother-in-law got horribly sick and

was diagnosed with Epstein Barr.

She was nearly bedridden for several months and never did fully

recover. We own 80 acres in western

Arkansas. She loved the land and

frequently went there just to walk around.

It is now for sale.

“Under Our Skin” is

a documentary depicting the devastating effects in several. It is sad that they are victims, not

only of the disease, but of the medical profession as well. Here is a short video of one,

Wermers who died not long after this filming. She was only 41. http://www.youtube.com/watch?v=vQg2QfDfSHY & feature=related

Here’s a clip of a park

ranger who knew exactly what he was dealing with. He saved the tick which tested

positive. Still, it took five

doctors to get treatment and by then, the treatment was prolonged. He has recovered. http://www.youtube.com/watch?v=WuzPJ_C4Ijs & feature=related

Here, he talks about what he

went through to be diagnosed and treated properly. http://www.youtube.com/watch?v=W-nJDHVD8QQ & feature=channel

These are all short clips and

are informative.

Val

[Guest guest]

If there is no good test to show you have and disease then Dr. can't treat it.

Is there more then one type of Lyme's? Yes Dr do screw up.

Insurance only pays for proven treatment.

My sister works at a lab at dartmouth the lab she is working in does research on

e-coli. Not sure what more they need to know. There grants for just this lab is

$1,000,000 a year. How could one have this money go to lyme,s research?

With as much as Dr Grim knows about Conn's there is a lot he may not know. With

Conn's the current screening test is going to miss at least 10% of us that have

it.

>

> I need to clarify one statement I made. The easy test, ELISA, gives false

> positives 30 - 50% of the time. It is not a good test. Unfortunately too

> many non Lyme-literate docs don't understand that. Within the recent past,

> a new DNA test has been developed but I don't know anything about it except

> it is only valid early in the disease (if that). There are good tests for

> Lyme, but they are more difficult to do. I went through three stages of

> testing before mine showed positive. My understanding is that false

> positives are rare.

>

> When I got sick in 1985, the first thing my doc considered was Lyme. He

> queried me about a rash but unfortunately, didn't do the screening test. He

> diagnosed ankylosing spondylitis although the only test for it was negative.

> It was a clinical diagnosis and unfortunately for me, it was wrong. I had

> every symptom of Lyme, not spondylitis.

>

> Three years later, after I moved to Minnesota, the doctor I saw was

> convinced I had Lyme but the ELISA test was negative. She had no

> suggestions for anything further. I was in terrible pain, on

> anti-inflammatories, and would have killed for them. The ELISA test is an

> antibody test and antibodies don't last forever. By 1986 or 1987, I had

> significantly high antibodies that destroyed my thyroid. Now, my antibodies

> are zero. Because they are zero does not mean I'm not hypothyroid.

>

> I believe I picked up Lyme in Arkansas while walking through the woods. My

> sister-in-law had many Lyme symptoms over the years and died suddenly, of no

> apparent cause, at age 53. She just dropped over. The autopsy found

> nothing - no drugs, no alcohol, no heart disease. I seriously doubt they

> tested for Lyme as it was an official law enforcement investigation. Her

> husband was formally diagnosed a couple of years ago, treated promptly and

> is fine today. My mother-in-law got horribly sick and was diagnosed with

> Epstein Barr. She was nearly bedridden for several months and never did

> fully recover. We own 80 acres in western Arkansas. She loved the land and

> frequently went there just to walk around. It is now for sale.

>

> " Under Our Skin " is a documentary depicting the devastating effects in

> several. It is sad that they are victims, not only of the disease, but of

> the medical profession as well. Here is a short video of one,

> Wermers who died not long after this filming. She was only 41.

>

> <http://www.youtube.com/watch?v=vQg2QfDfSHY & feature=related>

> & feature=related

>

> Here's a clip of a park ranger who knew exactly what he was dealing with.

> He saved the tick which tested positive. Still, it took five doctors to get

> treatment and by then, the treatment was prolonged. He has recovered.

>

> <http://www.youtube.com/watch?v=WuzPJ_C4Ijs & feature=related>

> & feature=related

>

> Here, he talks about what he went through to be diagnosed and treated

> properly.

> <http://www.youtube.com/watch?v=W-nJDHVD8QQ & feature=channel>

> & feature=channel

>

> These are all short clips and are informative.

>

> Val

>

[Guest guest]

No likely if I look at the results. Almost all tests have false negatives. Many also have false +. that is the nature of medicine.CE GrimMDIf there is no good test to show you have and disease then Dr. can't treat it. Is there more then one type of Lyme's? Yes Dr do screw up. Insurance only pays for proven treatment. My sister works at a lab at dartmouth the lab she is working in does research on e-coli. Not sure what more they need to know. There grants for just this lab is $1,000,000 a year. How could one have this money go to lyme,s research? With as much as Dr Grim knows about Conn's there is a lot he may not know. With Conn's the current screening test is going to miss at least 10% of us that have it. >> I need to clarify one statement I made. The easy test, ELISA, gives false> positives 30 - 50% of the time. It is not a good test. Unfortunately too> many non Lyme-literate docs don't understand that. Within the recent past,> a new DNA test has been developed but I don't know anything about it except> it is only valid early in the disease (if that). There are good tests for> Lyme, but they are more difficult to do. I went through three stages of> testing before mine showed positive. My understanding is that false> positives are rare. > > When I got sick in 1985, the first thing my doc considered was Lyme. He> queried me about a rash but unfortunately, didn't do the screening test. He> diagnosed ankylosing spondylitis although the only test for it was negative.> It was a clinical diagnosis and unfortunately for me, it was wrong. I had> every symptom of Lyme, not spondylitis. > > Three years later, after I moved to Minnesota, the doctor I saw was> convinced I had Lyme but the ELISA test was negative. She had no> suggestions for anything further. I was in terrible pain, on> anti-inflammatories, and would have killed for them. The ELISA test is an> antibody test and antibodies don't last forever. By 1986 or 1987, I had> significantly high antibodies that destroyed my thyroid. Now, my antibodies> are zero. Because they are zero does not mean I'm not hypothyroid.> > I believe I picked up Lyme in Arkansas while walking through the woods. My> sister-in-law had many Lyme symptoms over the years and died suddenly, of no> apparent cause, at age 53. She just dropped over. The autopsy found> nothing - no drugs, no alcohol, no heart disease. I seriously doubt they> tested for Lyme as it was an official law enforcement investigation. Her> husband was formally diagnosed a couple of years ago, treated promptly and> is fine today. My mother-in-law got horribly sick and was diagnosed with> Epstein Barr. She was nearly bedridden for several months and never did> fully recover. We own 80 acres in western Arkansas. She loved the land and> frequently went there just to walk around. It is now for sale.> > "Under Our Skin" is a documentary depicting the devastating effects in> several. It is sad that they are victims, not only of the disease, but of> the medical profession as well. Here is a short video of one, > Wermers who died not long after this filming. She was only 41.>

<http://www.youtube.com/watch?v=vQg2QfDfSHY & feature=related>> & feature=related > > Here's a clip of a park ranger who knew exactly what he was dealing with.> He saved the tick which tested positive. Still, it took five doctors to get> treatment and by then, the treatment was prolonged. He has recovered.>

<http://www.youtube.com/watch?v=WuzPJ_C4Ijs & feature=related>> & feature=related> > Here, he talks about what he went through to be diagnosed and treated> properly.

<http://www.youtube.com/watch?v=W-nJDHVD8QQ & feature=channel>> & feature=channel> > These are all short clips and are informative.> > Val>

[Guest guest]

Francis, there are many conditions that are treated where no

controlled studies or good tests are available. I was treated for 14 years on the basis

of a clinical diagnosis of ankylosing spondylitis. The only test available for ankylosing

spondylitis is HLAB27, and all that tests for is the genetic marker. One can have AS without the marker. I supposedly did.

Lyme is likewise a clinical diagnosis. Tests do exist but the usual screening

test yields false negatives half the time.

I have had advanced testing and have no doubt the cause of all my illnesses

over 25 years has been Lyme. I just

wish the pieces could have been put together sooner. I’ve lost a lot of life.

I don’t know how many types of Lyme there are. No one does because there has not been

adequate research. As long as we

have groups like IDSA who damn anyone investigating, we won’t have much

research.

My treatment must have some basis because insurance is paying

toward my drugs. I pay my doctor

cash.

Val

From: hyperaldosteronism

[mailto:hyperaldosteronism ] On Behalf Of Francis Bill

SUSPECTED PA

If there is no good test to show you have and disease then

Dr. can't treat it. Is there more then one type of

Lyme's? Yes Dr do screw up.

Insurance only pays for proven treatment.

My sister works at a lab at dartmouth the lab she is

working in does research on e-coli. Not sure what more they need to know. There

grants for just this lab is $1,000,000 a year. How could one have this money go

to lyme,s research?

With as much as Dr Grim knows about Conn's there is a lot he may not know. With

Conn's the current screening test is going to miss at least 10% of us that have

it.