Re: Advances in ME/CFS

[Guest guest]

Wow, well, I don't know if he's 100% right, but he's thorough, and at the very least, it's a HUGE step in the right direction. So anyone have the low-down on his treatment protocols? Thanks for posting, Al. pennyAl Melillo <melillo3@...> wrote: http://www.mefmaction.net/default.aspx?page=demeirleirpatientsAdvances in ME/CFSHighlights from Dr. Kenny De Meirleir's Lecture~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~Calgary, Alberta, April 2, 2006Marjorie van de Sande, B Ed, Grad Dip EdNational ME/FM Action Network, Advisor & WebmasterConference Planning CommitteeDr. De Meirleir is a world renowned researcher and is professorof Physiology and Internal Medicine at Free University ofBrussels in Belgium. Dr. De Meirleir recently published his600th peer-reviewed paper. He is co-editor of "Chronic FatigueSyndrome: A Biological Approach", co-editor of the Journal ofChronic Fatigue Syndrome and reviewer for more than ten othermedical journals. Dr. De Meirleir was one of four internationalexperts on the panel that developed the Canadian

ConsensusDocument for ME/CFS. He assesses/treats 3,000 to 4,000ME/CFS patients annually.Normal Response to Infectious AgentsNumerous infectious agents can trigger ME/CFS. Infectiousagents that invade cells release ribonucleic acid (RNA) ordeoxyribonucleic acid (DNA) when they reproduce. Normallywhen a virus infects a cell, an enzyme called Ribonulease L(RNase L) is activated and cuts the RNA of the infectious agentso it cannot replicate itself. The RNase L molecule also cuts theRNA of the infected cell, which triggers the cell's death andremoval. Then the RNase L molecule "switches off" and remainsinactive so that it doesn't damage healthy cells.Abnormal RNase L Molecule Found in ME/CFS PatientsThe normal weight of the RNase L molecule is 80 kilo Daltons(kDa). In ME/CFS patients, the RNase L molecule is being cutand weighs 37 kDa - less than half its normal weight. The lowmolecular weight

(LMW) RNase L molecule can discriminateME/CFS patients from healthy people, and illnesses such asfibromyalgia, multiple sclerosis, cancer, AIDS and depression.The Centers for Disease Control (USA) sent 100 blood samplesto Dr. De Meirleir. Using the test for LMW RNase L, Dr. DeMeirleir was able to identify which blood samples came fromME/CFS patients with 99% accuracy. These findings confirm anorganic origin of ME/CFS and validate the diagnosis.Abnormal RNase L Molecule Causes Chronic Dysfunctionof the Immune SystemThe damaged RNase L molecule is not able to kill infectiousagents and it keeps damaged cells alive. The body is unable to"switch off" these abnormal RNase L fragments so they continueto cut the RNA of normal cells. The destructive RNase Lfragment is six times more active than normal and consumesapproximately 70% of the cells' energy (ATP). RNase Lfragments destroy normal protein synthesis,

enzyme productionand other vital cellular functions. They inhibit respiratory muscles,and cause hyperventilation, metabolic alkalosis, sleepdisturbances, and central fatigue. There is sodium retention, lowmagnesium levels and dramatically low levels of potassium.Natural killer cells, which protect against viruses and intracellularinfections, are also being damaged. Thus, the immune systemis in a state of chronic dysfunction.Testing for ME/CFSDr. De Meirleir is co-founder of REDLABSwww.redlabsusa.com, which recently opened a lab in Nevada,USA.This lab offers diagnostic and treatment tests for ME/CFSpatients. Although each patient's profile is unique, patients tendto fall into three groups with different causes and treatments.Based on the results of six tests, Dr. De Meirleir was able topredict patients' symptoms with 95% accuracy while theremaining 5% had overlap features. Symptom severity

rises incorrelation to the rise in the level of LMW RNase L.Group Profiles* Group 1: (15-20%) This group has high levels of LMW RNaseL and elastase, low levels of protein kinase (PKR) and uric acid,and low to normal levels of nitric oxide. Spinal taps indicateelevated levels of lymphocytes and proteins in the spinal fluidand there is increased pressure upon opening the lumbarpuncture.These patients have a chronic low-grade viral infection andinflammatory reaction in the brain. Many micro-organisms areassociated with this profile. Heavy metals, pesticides and othertriggers may also be involved. Approximately 20% of this grouphas low-grade Herpes Virus 6A (HHV6A) encephalitis.The prominent feature is neurocognitive problems such asconfusion and impaired concentration and memory. Fatigueoriginates in the brain. Pain is not prominent. Patients exhibitsymptoms that have some similarities to

multiple sclerosis(MS).* Group 2: (10-15%) Patients have very high levels of LMWRNase L and elastase, high protein kinase activity, severely lownatural killer cell activity and very low serum uric acid levels.This group of severely ill patients has bacterial infectionsoriginating from animals such as pets, rodents, ticks, etc. Thesepatients have severe bowel problems. The gut is an importantpart of the immune system because 70% of immune cells are inthe digestive tract. When a patient has leaky gut syndrome, thegut has become permeable and foreign proteins enter the bloodand tissues and inflammation results. Dr. De Meirleir tests for 12pathogenic gut bacteria.* Group 3: (60-70%) The majority of ME/CFS patients are inthis group. This profile is basically similar to Group 2, but not assevere. Generalized pain originating from dysfunction in the painprocessing areas of the brain and CNS is a prominent

feature.These patients have gastrointestinal infections and bacteria arein the blood.Some Other Areas of Investigation* Infections: Part of the immune system is activated and part issuppressed, leaving the patient vulnerable to opportunisticinfections. Patients may have one or a number of infections.Serum Immunobilan tests are done to identify which ones areactive. Suspect microorganisms include viruses, bacteria, andmycoplasma. A chlamydia pneumonia infection is often found inpatients with chronic sinus infections. Approximately 8 – 10% ofME/CFS patients have infections of animal origin such asRickettsiae, iella, Bartonella and Borrelia.* Heavy Metals: Exposure comes from many sources includingfood, insulation, air, etc. ME/CFS patients have increasedsensitivity to chemicals, environmental pollutants and heavymetals, particularly mercury and nickel. Toxins can trigger aninflammatory

response.One of the RNase L fragments has a structure that is almostidentical to a protein involved in the removal of heavy metals andtoxic chemical from cells. When this protein is blocked by theRNase L fragments, the cells become more sensitive tomercury. Now a tiny amount of mercury that would normally kill10% of the cells can kill 50 to 100% of the cells.* Mycrotoxins: Fungi such as Aspergillus Niger and Candidacan contribute to ME/CFS symptoms. Candida is a yeast fungalinfection that changes sugars to aldehydes, a toxic form ofalcohol.* Digestive Tract: Gastrointestinal problems are a seriousconcern in ME/CFS patients. 70% of the body's immune cellsare found in the gastrointestinal tract. These immune cellsprevent bacteria and foreign protein from entering the bloodstream. When the gut become permeable and foreign proteinenters the blood stream, elastase is produced. Elastase is theenzyme

that is responsible for cutting the RNase L molecule intofragments. Elastase breaks down elastin, which gives elasticityto collagen. As a result, there is pain and a loss of elasticity inligaments and tendons.* Peripheral Resistance to Thyroid Hormone: Most patientshave normal results for common thyroid tests. However,ME/CFS patients have a much higher level of a protein that is98% identical to T3, which is the active form of thyroid. Becausethis foreign protein can bind to T3 receptors, T3 cannot findreceptors and is therefore ineffective in its role of activatingcellular metabolism.Treatment SummarySome psychiatrists advocate that no tests or lab work be doneon ME/CFS patients because testing will reinforce delusions ofphysically illness. Given the wealth of confirmed biochemicalabnormalities, such rationale is ludicrous. Dr. De Meirleirstressed that tests must be done in order to determine the

originof the problem. Then treatment can be prescribed to eliminatethe cause. A "clean-up" of all the consequences of the problemmust also be undertaken. Therapies and the order of treatmentsvary according to the patient's unique test profile. Treatmentincludes:1. Restoring immune competence2. Removing microorganisms3. Restoring hormonal balance4. Restoring intestinal flora5. Decreasing prostaglandins and protein kinase activity6. Removing heavy metals and toxic chemicalsDr. De Meirleir describes various treatment therapies in hislecture, which is available on DVD.New ME/CFS DVD Resources – Prices include shipping & handling:Dr. Kenny De Meirleir – Physicians' full dayworkshop - $80.00Dr. Kenny De Meirleir - patients'lecture - $25.00Dr. Pierre Flor- Henry's lecture – this is very technical (limitedtime offer)qEEG studies (current density

source) and psychophysiologicalstudies - $20.00Dr. Bell's lecture (ME/CFS - emphasis on chronicorthostatic intolerance) - $25.00Note:* Please send order ASAP so we can determine the number ofDVDs to have made.* Dr. De Meirleir's DVDs will be delayed until June* Payment: must be by check or money order payable toMarjorie van de Sande Mail it to her at151 Arbour Ridge Circle NWCalgary AB T3G 3V9.* Please be sure to indicate which DVDs you would like.~~

[Guest guest]

Plus, awesome news about this new lab in Nevada, no? Just wanted to add that I think he's overlooking the focal infections in the jaw as being a source of ongoing illness. The gut's definitely important, but if the jaw (or some other foci of infection) doesn't get cleaned up, the gut will keep being reinfected. I like they way he can categorize, through testing, the various sub groups. It proves people are truly ill. But one reason I think he's missing the focal infection aspect is because I personally don't fall cleanly into any of his groups. I have all the symptoms PLUS pain, except I don't have the gut problems (although I used to.) Actually, I should say, I have all the symptoms, when I'm not on abx. If I went off my meds, the brain fog, severe fatigue, etc. would all come back. But this is good

stuff. penny Al Melillo <melillo3@...> wrote: http://www.mefmaction.net/default.aspx?page=demeirleirpatientsAdvances in ME/CFSHighlights from Dr. Kenny De Meirleir's Lecture~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~Calgary, Alberta, April 2, 2006Marjorie van de Sande, B Ed,

Grad Dip EdNational ME/FM Action Network, Advisor & WebmasterConference Planning CommitteeDr. De Meirleir is a world renowned researcher and is professorof Physiology and Internal Medicine at Free University ofBrussels in Belgium. Dr. De Meirleir recently published his600th peer-reviewed paper. He is co-editor of "Chronic FatigueSyndrome: A Biological Approach", co-editor of the Journal ofChronic Fatigue Syndrome and reviewer for more than ten othermedical journals. Dr. De Meirleir was one of four internationalexperts on the panel that developed the Canadian ConsensusDocument for ME/CFS. He assesses/treats 3,000 to 4,000ME/CFS patients annually.Normal Response to Infectious AgentsNumerous infectious agents can trigger ME/CFS. Infectiousagents that invade cells release ribonucleic acid (RNA) ordeoxyribonucleic acid (DNA) when they reproduce. Normallywhen a virus infects a cell, an

enzyme called Ribonulease L(RNase L) is activated and cuts the RNA of the infectious agentso it cannot replicate itself. The RNase L molecule also cuts theRNA of the infected cell, which triggers the cell's death andremoval. Then the RNase L molecule "switches off" and remainsinactive so that it doesn't damage healthy cells.Abnormal RNase L Molecule Found in ME/CFS PatientsThe normal weight of the RNase L molecule is 80 kilo Daltons(kDa). In ME/CFS patients, the RNase L molecule is being cutand weighs 37 kDa - less than half its normal weight. The lowmolecular weight (LMW) RNase L molecule can discriminateME/CFS patients from healthy people, and illnesses such asfibromyalgia, multiple sclerosis, cancer, AIDS and depression.The Centers for Disease Control (USA) sent 100 blood samplesto Dr. De Meirleir. Using the test for LMW RNase L, Dr. DeMeirleir was able to identify which blood samples came

fromME/CFS patients with 99% accuracy. These findings confirm anorganic origin of ME/CFS and validate the diagnosis.Abnormal RNase L Molecule Causes Chronic Dysfunctionof the Immune SystemThe damaged RNase L molecule is not able to kill infectiousagents and it keeps damaged cells alive. The body is unable to"switch off" these abnormal RNase L fragments so they continueto cut the RNA of normal cells. The destructive RNase Lfragment is six times more active than normal and consumesapproximately 70% of the cells' energy (ATP). RNase Lfragments destroy normal protein synthesis, enzyme productionand other vital cellular functions. They inhibit respiratory muscles,and cause hyperventilation, metabolic alkalosis, sleepdisturbances, and central fatigue. There is sodium retention, lowmagnesium levels and dramatically low levels of potassium.Natural killer cells, which protect against viruses and

intracellularinfections, are also being damaged. Thus, the immune systemis in a state of chronic dysfunction.Testing for ME/CFSDr. De Meirleir is co-founder of REDLABSwww.redlabsusa.com, which recently opened a lab in Nevada,USA.This lab offers diagnostic and treatment tests for ME/CFSpatients. Although each patient's profile is unique, patients tendto fall into three groups with different causes and treatments.Based on the results of six tests, Dr. De Meirleir was able topredict patients' symptoms with 95% accuracy while theremaining 5% had overlap features. Symptom severity rises incorrelation to the rise in the level of LMW RNase L.Group Profiles* Group 1: (15-20%) This group has high levels of LMW RNaseL and elastase, low levels of protein kinase (PKR) and uric acid,and low to normal levels of nitric oxide. Spinal taps indicateelevated levels of lymphocytes and proteins in

the spinal fluidand there is increased pressure upon opening the lumbarpuncture.These patients have a chronic low-grade viral infection andinflammatory reaction in the brain. Many micro-organisms areassociated with this profile. Heavy metals, pesticides and othertriggers may also be involved. Approximately 20% of this grouphas low-grade Herpes Virus 6A (HHV6A) encephalitis.The prominent feature is neurocognitive problems such asconfusion and impaired concentration and memory. Fatigueoriginates in the brain. Pain is not prominent. Patients exhibitsymptoms that have some similarities to multiple sclerosis(MS).* Group 2: (10-15%) Patients have very high levels of LMWRNase L and elastase, high protein kinase activity, severely lownatural killer cell activity and very low serum uric acid levels.This group of severely ill patients has bacterial infectionsoriginating from animals such as pets,

rodents, ticks, etc. Thesepatients have severe bowel problems. The gut is an importantpart of the immune system because 70% of immune cells are inthe digestive tract. When a patient has leaky gut syndrome, thegut has become permeable and foreign proteins enter the bloodand tissues and inflammation results. Dr. De Meirleir tests for 12pathogenic gut bacteria.* Group 3: (60-70%) The majority of ME/CFS patients are inthis group. This profile is basically similar to Group 2, but not assevere. Generalized pain originating from dysfunction in the painprocessing areas of the brain and CNS is a prominent feature.These patients have gastrointestinal infections and bacteria arein the blood.Some Other Areas of Investigation* Infections: Part of the immune system is activated and part issuppressed, leaving the patient vulnerable to opportunisticinfections. Patients may have one or a number of

infections.Serum Immunobilan tests are done to identify which ones areactive. Suspect microorganisms include viruses, bacteria, andmycoplasma. A chlamydia pneumonia infection is often found inpatients with chronic sinus infections. Approximately 8 – 10% ofME/CFS patients have infections of animal origin such asRickettsiae, iella, Bartonella and Borrelia.* Heavy Metals: Exposure comes from many sources includingfood, insulation, air, etc. ME/CFS patients have increasedsensitivity to chemicals, environmental pollutants and heavymetals, particularly mercury and nickel. Toxins can trigger aninflammatory response.One of the RNase L fragments has a structure that is almostidentical to a protein involved in the removal of heavy metals andtoxic chemical from cells. When this protein is blocked by theRNase L fragments, the cells become more sensitive tomercury. Now a tiny amount of mercury that would

normally kill10% of the cells can kill 50 to 100% of the cells.* Mycrotoxins: Fungi such as Aspergillus Niger and Candidacan contribute to ME/CFS symptoms. Candida is a yeast fungalinfection that changes sugars to aldehydes, a toxic form ofalcohol.* Digestive Tract: Gastrointestinal problems are a seriousconcern in ME/CFS patients. 70% of the body's immune cellsare found in the gastrointestinal tract. These immune cellsprevent bacteria and foreign protein from entering the bloodstream. When the gut become permeable and foreign proteinenters the blood stream, elastase is produced. Elastase is theenzyme that is responsible for cutting the RNase L molecule intofragments. Elastase breaks down elastin, which gives elasticityto collagen. As a result, there is pain and a loss of elasticity inligaments and tendons.* Peripheral Resistance to Thyroid Hormone: Most patientshave normal results for common

thyroid tests. However,ME/CFS patients have a much higher level of a protein that is98% identical to T3, which is the active form of thyroid. Becausethis foreign protein can bind to T3 receptors, T3 cannot findreceptors and is therefore ineffective in its role of activatingcellular metabolism.Treatment SummarySome psychiatrists advocate that no tests or lab work be doneon ME/CFS patients because testing will reinforce delusions ofphysically illness. Given the wealth of confirmed biochemicalabnormalities, such rationale is ludicrous. Dr. De Meirleirstressed that tests must be done in order to determine the originof the problem. Then treatment can be prescribed to eliminatethe cause. A "clean-up" of all the consequences of the problemmust also be undertaken. Therapies and the order of treatmentsvary according to the patient's unique test profile. Treatmentincludes:1. Restoring immune

competence2. Removing microorganisms3. Restoring hormonal balance4. Restoring intestinal flora5. Decreasing prostaglandins and protein kinase activity6. Removing heavy metals and toxic chemicalsDr. De Meirleir describes various treatment therapies in hislecture, which is available on DVD.New ME/CFS DVD Resources – Prices include shipping & handling:Dr. Kenny De Meirleir – Physicians' full dayworkshop - $80.00Dr. Kenny De Meirleir - patients'lecture - $25.00Dr. Pierre Flor- Henry's lecture – this is very technical (limitedtime offer)qEEG studies (current density source) and psychophysiologicalstudies - $20.00Dr. Bell's lecture (ME/CFS - emphasis on chronicorthostatic intolerance) - $25.00Note:* Please send order ASAP so we can determine the number ofDVDs to have made.* Dr. De Meirleir's DVDs will be delayed until

June* Payment: must be by check or money order payable toMarjorie van de Sande Mail it to her at151 Arbour Ridge Circle NWCalgary AB T3G 3V9.* Please be sure to indicate which DVDs you would like.~~

[Guest guest]

Dear Nelly,

What, specifically, makes you not trust him? and when did you see him?

Amelia

[Guest guest]

> I like they way he can categorize, through testing, the various

sub groups. >

> penny

I think DeMeirleir is the best friend we have, but I have questions.

The summary of his work says:

" The low molecular weight (LMW) RNase L molecule can discriminate

ME/CFS patients from healthy people, and illnesses such as

fibromyalgia, multiple sclerosis, cancer, AIDS and depression. "

If this is true then why does Ampligen work for AIDS? If this is true

why do fibromyalgia patients test positive for mycoplasma - a

bacteria DeMeirleir says can damage RNaseL? Why do some MS patients

test positive for a form of borrelia? Also, we know that a fair

number of cfs patients have developed cancers.

My biggest question is what role does borrelia Bergdorferi have in

cfs and fms? He states that about 10% of his patients test positive

for borellia. WHAT LAB IS HE USING AND IS HE TESTING ALL HIS

PATIENTS? Our experience in the last few years is that many, many of

us turn out to have Lyme once we get accurate testing.

Does he find that those with positive borrelia also have LMW???? I

never had mine measured. I wonder if Sharon Briggs did - ShastaCFIDS?

a Carnes

[Guest guest]

Yeah, but there's still the question of whether testing positive for borrellia guarantees illness. It could be like the herpes virus where 80%+ have it but never get sick from it. That's the mainstream belief about the staphs. Why not borrellia? That you can carry it but not be sick, and yet there are those of us dx'd with staph who take abx and improve greatly. Go figure. I keep an open mind that even though I test positive for some, but negative for lyme and fungi, that I might still be infected with them somehow. But it seems like the lymies refuse to even consider that any other bug could be the culprit in their illness. And I think that's a shame, because they may miss some treatment opportunities. And by the way, I wasn't really clear in my post. I didn't mean I liked his subgroups. I actually have issues with them. I'm just saying that I

like the fact that he's doing some testing to try to figure out what's going on. More than anyone else is doing. Like you say, he is definitely a friend. penny pjeanneus <pj7@...> wrote: > I like they way he can categorize, through testing, the various sub groups. > > pennyI think DeMeirleir is the best friend we have, but I have questions. The summary of his work says:"The low molecular weight (LMW) RNase L molecule can

discriminateME/CFS patients from healthy people, and illnesses such asfibromyalgia, multiple sclerosis, cancer, AIDS and depression."If this is true then why does Ampligen work for AIDS? If this is true why do fibromyalgia patients test positive for mycoplasma - a bacteria DeMeirleir says can damage RNaseL? Why do some MS patients test positive for a form of borrelia? Also, we know that a fair number of cfs patients have developed cancers. My biggest question is what role does borrelia Bergdorferi have in cfs and fms? He states that about 10% of his patients test positive for borellia. WHAT LAB IS HE USING AND IS HE TESTING ALL HIS PATIENTS? Our experience in the last few years is that many, many of us turn out to have Lyme once we get accurate testing.Does he find that those with positive borrelia also have LMW???? I never had mine measured. I wonder if Sharon Briggs did - ShastaCFIDS?a

Carnes

[Guest guest]

Penny

DeMerlier has hit some home runs there. The fact that he actually

tests for damage that we are not supposed to be sustaining, is a huge

step in the right direction.I keep explaining to my doctor that when

you suffer greatly, you end up damaged like a burns patient...

>

> > I like they way he can categorize, through testing, the various

> sub groups. >

> > penny

>

> I think DeMeirleir is the best friend we have, but I have

questions.

> The summary of his work says:

>

> " The low molecular weight (LMW) RNase L molecule can discriminate

> ME/CFS patients from healthy people, and illnesses such as

> fibromyalgia, multiple sclerosis, cancer, AIDS and depression. "

>

> If this is true then why does Ampligen work for AIDS? If this is

true

> why do fibromyalgia patients test positive for mycoplasma - a

> bacteria DeMeirleir says can damage RNaseL? Why do some MS patients

> test positive for a form of borrelia? Also, we know that a fair

> number of cfs patients have developed cancers.

>

> My biggest question is what role does borrelia Bergdorferi have in

> cfs and fms? He states that about 10% of his patients test positive

> for borellia. WHAT LAB IS HE USING AND IS HE TESTING ALL HIS

> PATIENTS? Our experience in the last few years is that many, many

of

> us turn out to have Lyme once we get accurate testing.

>

> Does he find that those with positive borrelia also have LMW???? I

> never had mine measured. I wonder if Sharon Briggs did -

ShastaCFIDS?

>

> a Carnes

>

[Guest guest]

"I think DeMeirleir is the best friend we have"

DeMeirleir not my friend. Me no trust him. Me patient of his for a few months a long time ago.

Nelly

[infections] Re: Advances in ME/CFS

> I like they way he can categorize, through testing, the various sub groups. > > pennyI think DeMeirleir is the best friend we have, but I have questions. The summary of his work says:"The low molecular weight (LMW) RNase L molecule can discriminateME/CFS patients from healthy people, and illnesses such asfibromyalgia, multiple sclerosis, cancer, AIDS and depression."If this is true then why does Ampligen work for AIDS? If this is true why do fibromyalgia patients test positive for mycoplasma - a bacteria DeMeirleir says can damage RNaseL? Why do some MS patients test positive for a form of borrelia? Also, we know that a fair number of cfs patients have developed cancers. My biggest question is what role does borrelia Bergdorferi have in cfs and fms? He states that about 10% of his patients test positive for borellia. WHAT LAB IS HE USING AND IS HE TESTING ALL HIS PATIENTS? Our experience in the last few years is that many, many of us turn out to have Lyme once we get accurate testing.Does he find that those with positive borrelia also have LMW???? I never had mine measured. I wonder if Sharon Briggs did - ShastaCFIDS?a Carnes

[Guest guest]

Hi Penny,

In your first paragraph the operative word is " never. " I am certain

many have borrelia and are currently not sick. But the picture is

that they are likely to get sick over time. Of course, this becomes

more likely the more exposure to borrelia they get. My son was

perfectly healthy, well few signs, until age 30 when he developed

severe vertigo and nausea - borrelia in the nerve behind one eye.

Husband has symptoms like prostate problems and muscle pain for years

but found he has borrelia three years ago. His symptoms respond to

Zithromax, as do mine - not surprising.

Your comment that " lymies refuse to even consider thay any other bug

could be a culprit " is currently not the case. I don't know any Lyme

specialist today who isn't saying that Lyme patients generally have

several infections. These include mycoplasmas, rickettsias, babesia,

bartonella etc. Ticks carry some nasty bugs. I'm a pretty typical

case with mycoplasma, borrelia and babesia - that we know of.

My ongoing concern is that we need to get together - the Lyme crowd,

the fms crowd, and the cfs crowd, and get everyone as accurately

tested as possible for several infections.

I don't like DeMeirleir's subgroupings either, anymore than I like

Cheney's stages of the disease. But I know you and I agree DeMeirleir

is one of the better docs we have.

a

>

> Yeah, but there's still the question of whether testing positive

for borrellia guarantees illness. It could be like the herpes virus

where 80%+ have it but never get sick from it.

>

> That's the mainstream belief about the staphs. Why not borrellia?

That you can carry it but not be sick, and yet there are those of us

dx'd with staph who take abx and improve greatly. Go figure.

>

> I keep an open mind that even though I test positive for some,

but negative for lyme and fungi, that I might still be infected with

them somehow. But it seems like the lymies refuse to even consider

that any other bug could be the culprit in their illness. And I think

that's a shame, because they may miss some treatment opportunities.

>

> And by the way, I wasn't really clear in my post. I didn't mean I

liked his subgroups. I actually have issues with them. I'm just

saying that I like the fact that he's doing some testing to try to

figure out what's going on. More than anyone else is doing. Like you

say, he is definitely a friend.

>

> penny

>

>

> pjeanneus <pj7@...> wrote:

>

> > I like they way he can categorize, through testing, the various

> sub groups. >

> > penny

>

> I think DeMeirleir is the best friend we have, but I have

questions.

> The summary of his work says:

>

> " The low molecular weight (LMW) RNase L molecule can discriminate

> ME/CFS patients from healthy people, and illnesses such as

> fibromyalgia, multiple sclerosis, cancer, AIDS and depression. "

>

> If this is true then why does Ampligen work for AIDS? If this is

true

> why do fibromyalgia patients test positive for mycoplasma - a

> bacteria DeMeirleir says can damage RNaseL? Why do some MS patients

> test positive for a form of borrelia? Also, we know that a fair

> number of cfs patients have developed cancers.

>

> My biggest question is what role does borrelia Bergdorferi have in

> cfs and fms? He states that about 10% of his patients test positive

> for borellia. WHAT LAB IS HE USING AND IS HE TESTING ALL HIS

> PATIENTS? Our experience in the last few years is that many, many

of

> us turn out to have Lyme once we get accurate testing.

>

> Does he find that those with positive borrelia also have LMW???? I

> never had mine measured. I wonder if Sharon Briggs did -

ShastaCFIDS?

>

> a Carnes

>

[Guest guest]

what happened? pennyNelly Pointis <janel@...> wrote: "I think DeMeirleir is the best friend we have" DeMeirleir not my friend. Me no trust him. Me patient of his for a few months a long time ago. Nelly [infections] Re: Advances in ME/CFS > I like they way he can categorize, through testing, the various sub groups. > > pennyI think DeMeirleir is the best friend we have, but I have questions. The summary of his work says:"The low molecular weight (LMW) RNase L molecule can discriminateME/CFS patients from healthy people, and illnesses such asfibromyalgia, multiple sclerosis, cancer, AIDS and depression."If this

is true then why does Ampligen work for AIDS? If this is true why do fibromyalgia patients test positive for mycoplasma - a bacteria DeMeirleir says can damage RNaseL? Why do some MS patients test positive for a form of borrelia? Also, we know that a fair number of cfs patients have developed cancers. My biggest question is what role does borrelia Bergdorferi have in cfs and fms? He states that about 10% of his patients test positive for borellia. WHAT LAB IS HE USING AND IS HE TESTING ALL HIS PATIENTS? Our experience in the last few years is that many, many of us turn out to have Lyme once we get accurate testing.Does he find that those with positive borrelia also have LMW???? I never had mine measured. I wonder if Sharon Briggs did - ShastaCFIDS?a Carnes