Re: [APPROVED AD] Chronic fatigue syndrome with a neurological back ground(high

[Guest guest]

> >

> >

> >

> > Pros and cons on the spinal tap?

I can't speak from personal experience, but there are many people with

Lyme who have had spinal taps. Most are very sick afterwards. Taking

up to three weeks to be back to what their normal was. They complain of

weakness, head ache and are usually bed bound.

This was a test recommended for my son. No way.

FWIW,

[Guest guest]

> > >

> > > Pros and cons on the spinal tap?

>

> I can't speak from personal experience, but there are many people

with

> Lyme who have had spinal taps. Most are very sick afterwards.

Taking

> up to three weeks to be back to what their normal was. They

complain of

> weakness, head ache and are usually bed bound.

>

> This was a test recommended for my son. No way.

>

> FWIW,

>

>

Hi ,

May I ask what tests they were wanting to run on the spinal fluid?

I am seriously considering taking the risk due to the number of

tests that they are going to run. I would not be able to afford the

tests and my insurance will not cover anything but the very simplest

of tests. I recently found a functional med dr here who come

recommended and I would have had to pay for these tests myself out

of my own pocket. This way I have them for free and she can tailor

my treatment plan to be more effective.

Lot to consider - still weighing the options.

Thanks,

Marti

[Guest guest]

Marti,

I'm not sure what would show up in a spinal tap that would relate to

cfs. I think that is why they want to do the study in the first

place - they don't know what will show up.

I have Lyme disease and had a spinal tap recently - not due to the

Lyme disease. No borrelia or other signs of infection showed up in my

spinal fluid.

I had absolutely no problem with the procedure, but the doctor who

did it is excellent. I think a lot depends on how carefully the test

is done. Even the measurements of pressure etc can be inaccurate if

the test is not done correctly.

I would suggest you call the office and ask a lot of questions. Ask

exactly what tests they plan to run. I would especially want to know

the name of the person doing the lumbar puncture and then call and

get his/her reputation verified if at all possible.

Do your homework, because we can no longer assume they will do

theirs, sad to say.

a Carnes

>

> > > >

> > > > Pros and cons on the spinal tap?

> >

> > I can't speak from personal experience, but there are many people

> with

> > Lyme who have had spinal taps. Most are very sick afterwards.

> Taking

> > up to three weeks to be back to what their normal was. They

> complain of

> > weakness, head ache and are usually bed bound.

> >

> > This was a test recommended for my son. No way.

> >

> > FWIW,

> >

> >

>

> Hi ,

> May I ask what tests they were wanting to run on the spinal fluid?

>

> I am seriously considering taking the risk due to the number of

> tests that they are going to run. I would not be able to afford

the

> tests and my insurance will not cover anything but the very

simplest

> of tests. I recently found a functional med dr here who come

> recommended and I would have had to pay for these tests myself out

> of my own pocket. This way I have them for free and she can tailor

> my treatment plan to be more effective.

>

> Lot to consider - still weighing the options.

>

> Thanks,

> Marti

>

[Guest guest]

>

> > > >

> > > > Pros and cons on the spinal tap?

> >

> > I can't speak from personal experience, but there are many

people

> with

> > Lyme who have had spinal taps. Most are very sick afterwards.

> Taking

> > up to three weeks to be back to what their normal was. They

> complain of

> > weakness, head ache and are usually bed bound.

> >

> > This was a test recommended for my son. No way.

> >

> > FWIW,

> >

> >

>

> Hi ,

> May I ask what tests they were wanting to run on the spinal fluid?

>

The reason I ask is because if I decide to go ahead, I would like to

have them test for anything else while they have a sample of CSF. I

researched CSF a little and it seems that there is alot they can

decipher. I would try to submit it to insurance but if I went ahead

and did this study, I would want to maximize the benefit to help

outweigh the risk. I was thinking I would hand-carry orders for

tests but I don't know where to start in terms of requesting tests.

If that is too personal, please don't feel obligated to respond.

Marti

[Guest guest]

>

> Marti,

> I'm not sure what would show up in a spinal tap that would relate

to

> cfs. I think that is why they want to do the study in the first

> place - they don't know what will show up.

>

> I have Lyme disease and had a spinal tap recently - not due to the

> Lyme disease. No borrelia or other signs of infection showed up in

my

> spinal fluid.

>

> I had absolutely no problem with the procedure, but the doctor who

> did it is excellent. I think a lot depends on how carefully the

test

> is done. Even the measurements of pressure etc can be inaccurate

if

> the test is not done correctly.

>

> I would suggest you call the office and ask a lot of questions.

Ask

> exactly what tests they plan to run. I would especially want to

know

> the name of the person doing the lumbar puncture and then call and

> get his/her reputation verified if at all possible.

>

> Do your homework, because we can no longer assume they will do

> theirs, sad to say.

>

> a Carnes

Hi a,

Thanks for responding.

This is what I found on wikipedia. I found more but deleted some

entries so it wouldn't be too much to read for the really sick.

They are looking for proteins in CSF. I was thinking that I would

request testing on other things while they had a sample of fluid.

http://en.wikipedia.org/wiki/Spinal_tap

" Several substances found in cerebrospinal fluid are available for

diagnostic measurement.

Increased levels of lactate can occur the presence of cancer of the

CNS, multiple sclerosis, heritable mitochondrial disease, low blood

pressure, low serum phosphorus, respiratory alkalosis, idiopathic

seizures, traumatic brain injury, cerebral ischemia, brain abscess,

hydrocephalus, hypocapnia or bacterial meningitis.

The enzyme lactate dehydrogenase can be measured to help distinguish

meningitides of bacterial origin, which are often associated with

high levels of the enzyme, from those of viral origin in which the

enzyme is low or absent.

IgG synthetic rate is calculated from measured IgG and total protein

levels; it is elevated in immune disorders such as multiple

sclerosis, transverse myelitis, and neuromyelitis optica of Devic.

Numerous antibody-mediated tests for CSF are available in some

countries: these include rapid tests for antigens of common

bacterial pathogens, treponemal titers for the diagnosis of

neurosyphilis and Lyme disease, Coccidioides antibody, and others.

CSF can be sent to the microbiology lab for various types of smears

and cultures to diagnose infections.

Polymerase chain reaction (PCR) has been a great advance in the

diagnosis of some types of meningitis. It has high sensitivity and

specificity for many infections of the CNS, is fast, and can be done

with small volumes of CSF. Even though testing is expensive, it

saves cost of hospitalization. "

The spinal taps are done in the Department of Interventional

Neuroradiology because of the high skill level of the specialists,

and the special X-rays they use to guide the needle. The specialist

will use a special type of X-ray ( " fluoroscopy " ) for about 30

seconds.

I will definitely do more homework. I might see my rheum. in order

to get a better perspective. Not sure if I can even get anyone to

order any tests.

Thanks,

Marti

[Guest guest]

> Hi ,

> May I ask what tests they were wanting to run on the spinal fluid?

All I know is Dr. F from Columbia was recommending a spinal tap for my

son. He said it was rare to find Borrelia in the CFS but it does

happen. Which I think would be done by PCR. But the presence of WBC

would indicate Lyme. But to me that did not sound very specific.

If I were you and was having it done. I would call IGeneX and see if

they test CFS (I believe they do) and what would they need. But then

you would need to find a physician willing to put his signature on the

request form. And have the research people willing to share the sample.

I agree with a. I would find out the length of experience the

person doing the tap has. Is it a teaching hospital? You don't want to

be the first tap this person has ever done. As my father says, I want

some one with a little graying in the hair.

Best,

[Guest guest]

Hi, Marti and the group,

I can give a little background on the town study that requires

a spinal tap, for general information. I can't answer the questions

about whether they will do additional testing or how experienced they

are at doing spinal taps, etc., but maybe the following will be of

interest from the research point of view.

Dr. Jim Baraniuk and coworkers had a grant a few years ago to look at

the proteins in spinal fluid in PWCs and Gulf War vets. They were

able to do a little pilot study, and then their grant money ran out,

and they stopped. They were able to get one paper out. The abstract

is here, and the full paper is free on PubMed:

BMC Neurol. 2005 Dec 1;5:22.

A Chronic Fatigue Syndrome - related proteome in human cerebrospinal

fluid.

Baraniuk JN, Casado B, Maibach H, Clauw DJ, Pannell LK, Hess S S.

town University Proteomics Laboratory, Division of

Rheumatology, Immunology & Allergy, Room B-105, Lower Level Kober-

Cogan Building, town University, Washington, DC 20007-2197,

USA. baraniuj@...

BACKGROUND: Chronic Fatigue Syndrome (CFS), Persian Gulf War Illness

(PGI), and fibromyalgia are overlapping symptom complexes without

objective markers or known pathophysiology. Neurological dysfunction

is common. We assessed cerebrospinal fluid to find proteins that were

differentially expressed in this CFS-spectrum of illnesses compared

to control subjects. METHODS: Cerebrospinal fluid specimens from 10

CFS, 10 PGI, and 10 control subjects (50 mul/subject) were pooled

into one sample per group (cohort 1). Cohort 2 of 12 control and 9

CFS subjects had their fluids (200 mul/subject) assessed

individually. After trypsin digestion, peptides were analyzed by

capillary chromatography, quadrupole-time-of-flight mass

spectrometry, peptide sequencing, bioinformatic protein

identification, and statistical analysis. RESULTS: Pooled CFS and PGI

samples shared 20 proteins that were not detectable in the pooled

control sample (cohort 1 CFS-related proteome). Multilogistic

regression analysis (GLM) of cohort 2 detected 10 proteins that were

shared by CFS individuals and the cohort 1 CFS-related proteome, but

were not detected in control samples. Detection of >or=1 of a select

set of 5 CFS-related proteins predicted CFS status with 80%

concordance (logistic model). The proteins were alpha-1-

macroglobulin, amyloid precursor-like protein 1, keratin 16,

orosomucoid 2 and pigment epithelium-derived factor. Overall, 62 of

115 proteins were newly described. CONCLUSION: This pilot study

detected an identical set of central nervous system, innate immune

and amyloidogenic proteins in cerebrospinal fluids from two

independent cohorts of subjects with overlapping CFS, PGI and

fibromyalgia. Although syndrome names and definitions were different,

the proteome and presumed pathological mechanism(s) may be shared.

PMID: 16321154 [PubMed - indexed for MEDLINE]

As you can see from the abstract, they did find some differences in

the proteins between the PWCs and GW vets on the one hand, and the

controls on the other. In addition, the full paper reported that

they saw differences in protein folding. When I saw the latter, I

wrote to Dr. Baraniuk and suggested that he consider that glutathione

depletion could be the cause of the protein misfolding, because of

the loss of redox control making the proper formation of cystine

disulfide bonds problematic. He responded that he thought that was a

good thing to consider.

They could not continue because of lack of funding, but then they got

a new grant from NIH. As you may know, the CFS studies at NIH are

administered by the Office of Research on Women's Health. That may

be one reason why the new study is limited to women, but of course it

also controls one important variable, which will help to make the

study group more homogeneous and thus make the resulting data easier

to analyze.

This group is the first group to look at proteomics in CFS, as far as

I know. Several studies have been done on gene expression, which

looks at the messenger RNA in cells to see which genes are being

expressed and to what degree. The messenger RNA is normally

translated into proteins by the ribosomes, but there is not a direct

one-to-one correlation between the messenger RNA distribution and the

distribution of proteins. The reason is that there are other factors

that come into play that modify the translation into proteins. So

looking at the proteins themselves will give additional information.

The other aspect (one I'm very interested in) is that just because

the ribosome has a pattern with which to make the protein, that

doesn't necessarily mean it can do it, especially if cysteine

residues are part of the protein, because the cell must have enough

glutathione to allow this to be done properly. So the point

is, " there's many a slip twixt the cup and the lip " when it comes to

making the proteins. I'm very interested to see how this study comes

out.

Rich

> >

> > Marti,

> > I'm not sure what would show up in a spinal tap that would relate

> to

> > cfs. I think that is why they want to do the study in the first

> > place - they don't know what will show up.

> >

> > I have Lyme disease and had a spinal tap recently - not due to

the

> > Lyme disease. No borrelia or other signs of infection showed up

in

> my

> > spinal fluid.

> >

> > I had absolutely no problem with the procedure, but the doctor

who

> > did it is excellent. I think a lot depends on how carefully the

> test

> > is done. Even the measurements of pressure etc can be inaccurate

> if

> > the test is not done correctly.

> >

> > I would suggest you call the office and ask a lot of questions.

> Ask

> > exactly what tests they plan to run. I would especially want to

> know

> > the name of the person doing the lumbar puncture and then call

and

> > get his/her reputation verified if at all possible.

> >

> > Do your homework, because we can no longer assume they will do

> > theirs, sad to say.

> >

> > a Carnes

>

>

>

>

> Hi a,

> Thanks for responding.

>

> This is what I found on wikipedia. I found more but deleted some

> entries so it wouldn't be too much to read for the really sick.

> They are looking for proteins in CSF. I was thinking that I would

> request testing on other things while they had a sample of fluid.

>

> http://en.wikipedia.org/wiki/Spinal_tap

>

> " Several substances found in cerebrospinal fluid are available for

> diagnostic measurement.

>

> Increased levels of lactate can occur the presence of cancer of the

> CNS, multiple sclerosis, heritable mitochondrial disease, low blood

> pressure, low serum phosphorus, respiratory alkalosis, idiopathic

> seizures, traumatic brain injury, cerebral ischemia, brain abscess,

> hydrocephalus, hypocapnia or bacterial meningitis.

> The enzyme lactate dehydrogenase can be measured to help

distinguish

> meningitides of bacterial origin, which are often associated with

> high levels of the enzyme, from those of viral origin in which the

> enzyme is low or absent.

> IgG synthetic rate is calculated from measured IgG and total

protein

> levels; it is elevated in immune disorders such as multiple

> sclerosis, transverse myelitis, and neuromyelitis optica of Devic.

> Numerous antibody-mediated tests for CSF are available in some

> countries: these include rapid tests for antigens of common

> bacterial pathogens, treponemal titers for the diagnosis of

> neurosyphilis and Lyme disease, Coccidioides antibody, and others.

> CSF can be sent to the microbiology lab for various types of smears

> and cultures to diagnose infections.

> Polymerase chain reaction (PCR) has been a great advance in the

> diagnosis of some types of meningitis. It has high sensitivity and

> specificity for many infections of the CNS, is fast, and can be

done

> with small volumes of CSF. Even though testing is expensive, it

> saves cost of hospitalization. "

>

> The spinal taps are done in the Department of Interventional

> Neuroradiology because of the high skill level of the specialists,

> and the special X-rays they use to guide the needle. The specialist

> will use a special type of X-ray ( " fluoroscopy " ) for about 30

> seconds.

>

> I will definitely do more homework. I might see my rheum. in order

> to get a better perspective. Not sure if I can even get anyone to

> order any tests.

>

> Thanks,

> Marti

>

[Guest guest]

a, Marty, All,

Maybe you didn't know, but there was at least one CFS study once announced (like

so many others, then where do they go?) that showed several specific proteins in

the spinal fluid of PWCs.

It was of considerable concern at that time.

HHV6 can show in a spinal tap, entero, polio, other viruses too, and I think

some have been found in CFS, CSF.

Maybe look at the UK ME/CFS research database to see what's been done, Spinal

tap-wise?

I'm surprised you're surprised that they would be looking in spinal fluid of ME

or PWCs. Apart from the safety/comfort factors, they should have been doing this

all along, or followed up on the protein study, I'd think.

But what do I know?

ME-itis means inflammation, maybe of the spinal cord (Such as UK's Sophie

Mirza's upon autopsy?) one cause of which would be Herpes or other virus that it

seems might be found there.

Right before I saw Dr. Cheney in 2005, my Neuro was sugesting one for my CNS,

Neuro sx. But it was cancelled, before I completed making my decision, so I did

not have to make it.

Katrina

>

> Marti,

> I'm not sure what would show up in a spinal tap that would relate to

> cfs. I think that is why they want to do the study in the first

> place - they don't know what will show up.

>

> I have Lyme disease and had a spinal tap recently - not due to the

> Lyme disease. No borrelia or other signs of infection showed up in my

> spinal fluid.

>

> I had absolutely no problem with the procedure, but the doctor who

> did it is excellent. I think a lot depends on how carefully the test

> is done. Even the measurements of pressure etc can be inaccurate if

> the test is not done correctly.

>

> I would suggest you call the office and ask a lot of questions. Ask

> exactly what tests they plan to run. I would especially want to know

> the name of the person doing the lumbar puncture and then call and

> get his/her reputation verified if at all possible.

>

> Do your homework, because we can no longer assume they will do

> theirs, sad to say.

>

> a Carnes

>

> >

> > > > >

> > > > > Pros and cons on the spinal tap?

> > >

> > > I can't speak from personal experience, but there are many people

> > with

> > > Lyme who have had spinal taps. Most are very sick afterwards.

> > Taking

> > > up to three weeks to be back to what their normal was. They

> > complain of

> > > weakness, head ache and are usually bed bound.

> > >

> > > This was a test recommended for my son. No way.

> > >

> > > FWIW,

> > >

> > >

> >

> > Hi ,

> > May I ask what tests they were wanting to run on the spinal fluid?

> >

> > I am seriously considering taking the risk due to the number of

> > tests that they are going to run. I would not be able to afford

> the

> > tests and my insurance will not cover anything but the very

> simplest

> > of tests. I recently found a functional med dr here who come

> > recommended and I would have had to pay for these tests myself out

> > of my own pocket. This way I have them for free and she can tailor

> > my treatment plan to be more effective.

> >

> > Lot to consider - still weighing the options.

> >

> > Thanks,

> > Marti

> >

>

[Guest guest]

>

>

> a, Marty, All,

>

> Maybe you didn't know, but there was at least one CFS study once

announced (like so many others, then where do they go?) that showed

several specific proteins in the spinal fluid of PWCs.

> It was of considerable concern at that time.

>

>> Right before I saw Dr. Cheney in 2005, my Neuro was sugesting one

for my CNS, Neuro sx. But it was cancelled, before I completed

making my decision, so I did not have to make it.

>

> Katrina

>

Hi Katrina,

Your reference to a previous study is the same one Rich mentioned in

his post. Here is an article talking about the study and some

thought by the lead researcher, Dr. Baraniuk. This is a

followup study and I am considering participating.

http://www.medscape.com/viewarticle/518294

I am going to follow up on suggestions by and a but, if I

may ask you, do you know what specifically they were going to look

for?

I would like to make the best use of the sample and I have discussed

with the researcher to ask if that was possible and he said maybe.

So now I am trying to figure out the best test to ask for that may

apply to my illness as a good diagnostic. It may not be worth the

hassle as I would have to pay out of pocket for the testing and

would have to convince my Dr. to order them. Trying to be proactive.

Marti

[Guest guest]

>

>

> a, Marty, All,

>

> Maybe you didn't know, but there was at least one CFS study once

announced (like so many others, then where do they go?) that showed

several specific proteins in the spinal fluid of PWCs.

> It was of considerable concern at that time.

>

>> Right before I saw Dr. Cheney in 2005, my Neuro was sugesting one

for my CNS, Neuro sx. But it was cancelled, before I completed

making my decision, so I did not have to make it.

>

> Katrina

>

Hi Katrina,

Your reference to a previous study is the same one Rich mentioned in

his post. Here is an article talking about the study and some

thought by the lead researcher, Dr. Baraniuk. This is a

followup study and I am considering participating.

http://www.medscape.com/viewarticle/518294

I am going to follow up on suggestions by and a but, if I

may ask you, do you know what specifically they were going to look

for?

I would like to make the best use of the sample and I have discussed

with the researcher to ask if that was possible and he said maybe.

So now I am trying to figure out the best test to ask for that may

apply to my illness as a good diagnostic. It may not be worth the

hassle as I would have to pay out of pocket for the testing and

would have to convince my Dr. to order them. Trying to be proactive.

Marti

[Guest guest]

Marti,

I will be most curious to hear what you learn about their willingness

to test you and what they plan to test for.

If you get in the study the tests they want to run will be free.

Other things you might wish to have run may cost you. I paid to get a

PCR for borrelia at IgeneX from my spinal fluid.

Here is another concern - like blood tests, multiple vials of fluid

will need to be drawn. Usually with blood this is not a problem. I

once had 23 vials drawn - that was my personal record.

However, with spinal fluid this can be a problem. For one thing your

spinal fluid may stop flowing. They simply may not be able to get

enough. Also, you really don't want to have a huge amount withdrawn

as this can cause problems, or it can magically relieve a headache IF

the headache is caused by abnormal drainage of spinal fluid

(hydrocephaly).

I was tested for several infections and abnormalities. Everything

came up completely normal including a negative PCR for borrelia which

doesn't mean much at all. It's hard to find borrelia in spinal fluid,

and I was told later I should not have had a PCR, but something else.

YOu may want to call IgeneX for advice on this.

Meanwhile they were short one vial of spinal fluid, so they never ran

a test for MS on me - a diagnosis which, at this point in my heath,

was certainly on the table.

I wish this were simpler. Keep us posted on what you decide. It will

be interesting if you decide to go forward with this.

a Carnes

> >

> >

> > a, Marty, All,

> >

> > Maybe you didn't know, but there was at least one CFS study once

> announced (like so many others, then where do they go?) that showed

> several specific proteins in the spinal fluid of PWCs.

> > It was of considerable concern at that time.

> >

> >> Right before I saw Dr. Cheney in 2005, my Neuro was sugesting

one

> for my CNS, Neuro sx. But it was cancelled, before I completed

> making my decision, so I did not have to make it.

> >

> > Katrina

> >

>

>

> Hi Katrina,

> Your reference to a previous study is the same one Rich mentioned

in

> his post. Here is an article talking about the study and some

> thought by the lead researcher, Dr. Baraniuk. This is a

> followup study and I am considering participating.

>

> http://www.medscape.com/viewarticle/518294

>

> I am going to follow up on suggestions by and a but, if I

> may ask you, do you know what specifically they were going to look

> for?

>

> I would like to make the best use of the sample and I have

discussed

> with the researcher to ask if that was possible and he said maybe.

> So now I am trying to figure out the best test to ask for that may

> apply to my illness as a good diagnostic. It may not be worth the

> hassle as I would have to pay out of pocket for the testing and

> would have to convince my Dr. to order them. Trying to be

proactive.

>

> Marti

>

[Guest guest]

Marty,

oops, I'd not seen Rich's post.

Do you mean what was the Neuro looking for in me? I don't know but he was not a

CFS Dr....was looking for dx

for tremor, gait, balance issues, neuro-specific sx. Before I asked I was trying

to do the same as you...seek other things (the proteins) to request. It was not

easy to find, and I don't know how far I got, then stopped for Cheney appt. If I

find any notes, I'll send them to you. Check UK or CoCure for previous ST

findings in ME,CFS?

Opinions were mixed among ME/CFS patients/advocates as to whether it was a good

idea to do ST.

Besides a's points, a researcher may want his study to be as pure and alike

as possible among subjects.

I did alot of reading on Spinal Taps in general, and from gen'l patients who'd

had them, to help me prepare/decide. I was about at 50/50 on doing it...for my

specific condition, (+ M.E.) which included significant Neuro-muscular,

movements.

Katrina

> >

> > Marti,

> > I'm not sure what would show up in a spinal tap that would relate to

> > cfs. I think that is why they want to do the study in the first

> > place - they don't know what will show up.

> >

> > I have Lyme disease and had a spinal tap recently - not due to the

> > Lyme disease. No borrelia or other signs of infection showed up in my

> > spinal fluid.

> >

> > I had absolutely no problem with the procedure, but the doctor who

> > did it is excellent. I think a lot depends on how carefully the test

> > is done. Even the measurements of pressure etc can be inaccurate if

> > the test is not done correctly.

> >

> > I would suggest you call the office and ask a lot of questions. Ask

> > exactly what tests they plan to run. I would especially want to know

> > the name of the person doing the lumbar puncture and then call and

> > get his/her reputation verified if at all possible.

> >

> > Do your homework, because we can no longer assume they will do

> > theirs, sad to say.

> >

> > a Carnes

> >

> > >

> > > > > >

> > > > > > Pros and cons on the spinal tap?

> > > >

> > > > I can't speak from personal experience, but there are many people

> > > with

> > > > Lyme who have had spinal taps. Most are very sick afterwards.

> > > Taking

> > > > up to three weeks to be back to what their normal was. They

> > > complain of

> > > > weakness, head ache and are usually bed bound.

> > > >

> > > > This was a test recommended for my son. No way.

> > > >

> > > > FWIW,

> > > >

> > > >

> > >

> > > Hi ,

> > > May I ask what tests they were wanting to run on the spinal fluid?

> > >

> > > I am seriously considering taking the risk due to the number of

> > > tests that they are going to run. I would not be able to afford

> > the

> > > tests and my insurance will not cover anything but the very

> > simplest

> > > of tests. I recently found a functional med dr here who come

> > > recommended and I would have had to pay for these tests myself out

> > > of my own pocket. This way I have them for free and she can tailor

> > > my treatment plan to be more effective.

> > >

> > > Lot to consider - still weighing the options.

> > >

> > > Thanks,

> > > Marti

> > >

> >

>

[Guest guest]

>

> Marti,

> I will be most curious to hear what you learn about their

willingness

> to test you and what they plan to test for.

> PCR for borrelia at IgeneX from my spinal fluid.

>

.....

> I wish this were simpler. Keep us posted on what you decide. It

will

> be interesting if you decide to go forward with this.

>

> a Carnes

>

Hi a,

This is what I have learned. First, the researcher I have spoken

with is very gracious and accomodating. A woman posted on another

group for her friend that just went to town and she said it

was exhaustive and exhausting. The spinal tap went very well and

she was treated well. All in all, she reported a good experience.

In terms of additional testing, they are open to it, but requires

some finagling with paperwork and the rules of the protocol. They

remove 20ml of spinal fluid (we should have around 150ml) in 5 vials

(5ml each). That is all that can be taken. So, I will research the

various things that I have been tested for and determine the best

one or two that might fit - I can probably only afford 1 or 2 tests

(I need to find this out - maybe only one).

I will receive the results of all the tests except the genetic and

the proteomic - due to double blind issues and to prevent insurance

discrimination. I am okay with that now but I wasn't at first.

The study will last until they have 150 people, so about a year or a

year and a half. I have decided to go if for no other reason than

to further the cause. The sooner the study is over, the sooner we

will have some answers, hopefully. It is a different direction that

some of the other genetic studies but I think it is still

reasonable. Also, it is the follow-up study and larger than the

first so they have already identified a number of proteins, abnormal

CSF pressure and were even able to identify severity based on

proteins. So, It looks like they got pretty far the first go

around.

Now, the decision will be when to go. I may go around May 5 and

work that into the CFS Advisory committe (but I may do that by

phone). Or I may wait until August when my son can help me travel.

I am trying also to get someone near me to travel with me and get

tested, my sister has FMS and would qualify but she may not be

willing to go.

Thanks for your help. I may test for virus or bacteria or perhaps

MS. That is the research I will do now.

Marti

[Guest guest]

Marti,

My only other thought is that a genetic study of cfs and fms makes no

sense to me at this point in time. CFS developed in the 1980s. Some

estimates figure that 80 to 95% of us are infected with borrelia.

Many of us test positive using PCR for severe mycoplasma infections,

not to mention reactivated viruses - and this is no small problem.

For the life of me, I see no difference in doing genetic testing back

in the 1980s for AIDS when they didn't know what HIV was. We are

infected with something(S). The massive numbers of us who are sick

does not indicate this is a genetic problem, unless you want to say

that a huge percentage of the population suddenly mutated in the

1980s to some new proclivity for some new infectious disease.

Please understand that I am not " yelling " at you, Marti. I might sign

up for the study too, if only to get them to test me for a couple of

infections - assuming there are even accurate tests for these. (You

know a PCR for borrelia in spinal fluid is IFFY)

My point here - I know I am taking a long time to make it - is that

the government is funding genetic studies when they should be funding

a search for INFECTIOUS causes. You could count on one hand with a

couple of fingers amputated the number of such studies that have been

done on cfs/fms patients.

Okay, I will shut up now.

a Carnes

> Hi a,

> This is what I have learned. First, the researcher I have spoken

> with is very gracious and accomodating. A woman posted on another

> group for her friend that just went to town and she said it

> was exhaustive and exhausting. The spinal tap went very well and

> she was treated well. All in all, she reported a good experience.

>

> In terms of additional testing, they are open to it, but requires

> some finagling with paperwork and the rules of the protocol. They

> remove 20ml of spinal fluid (we should have around 150ml) in 5

vials

> (5ml each). That is all that can be taken. So, I will research the

> various things that I have been tested for and determine the best

> one or two that might fit - I can probably only afford 1 or 2 tests

> (I need to find this out - maybe only one).

>

> I will receive the results of all the tests except the genetic and

> the proteomic - due to double blind issues and to prevent insurance

> discrimination. I am okay with that now but I wasn't at first.

>

> The study will last until they have 150 people, so about a year or

a

> year and a half. I have decided to go if for no other reason than

> to further the cause. The sooner the study is over, the sooner we

> will have some answers, hopefully. It is a different direction

that

> some of the other genetic studies but I think it is still

> reasonable. Also, it is the follow-up study and larger than the

> first so they have already identified a number of proteins,

abnormal

> CSF pressure and were even able to identify severity based on

> proteins. So, It looks like they got pretty far the first go

> around.

>

> Now, the decision will be when to go. I may go around May 5 and

> work that into the CFS Advisory committe (but I may do that by

> phone). Or I may wait until August when my son can help me travel.

>

> I am trying also to get someone near me to travel with me and get

> tested, my sister has FMS and would qualify but she may not be

> willing to go.

>

> Thanks for your help. I may test for virus or bacteria or perhaps

> MS. That is the research I will do now.

>

> Marti

>

[Guest guest]

>

> a,

> I agree with you. It seems like wasted money when the bigger

picture seems to involve infections rather than genetics! Would it

be that they are trying to divert attention away from infectious

diseases for some reason??? :-)

>

> Diane in MI

> Re: [APPROVED AD] Chronic fatigue

syndrome with a neurological back ground(high

>

>

> Marti,

> My only other thought is that a genetic study of cfs and fms

makes no

> sense to me at this point in time. CFS developed in the 1980s.

Some

> estimates figure that 80 to 95% of us are infected with

borrelia.

> Many of us test positive using PCR for severe mycoplasma

infections,

> not to mention reactivated viruses - and this is no small

problem.

>

> For the life of me, I see no difference in doing genetic testing

back

>

Hi a and Diane,

Well, I totally agree that we are infectious. I also think that we

have stealth viruses, bacteria/viral that mutated and is affecting

us but our immune system can't find it to attack it.

My thoughts are this, and I might not be too clear because I didn't

sleep well last night. I believe that there are several triggers -

chemical or viral or bacterial or vaccinations that begin the

illness process. I believe that our bodies cannot properly recover

due to system weakness - poor digestion, too much antibiotics.

Basically, the body cascades from the biochemistry getting out of

whack and can't get back on track.

I personally think that all of the glutathione is depleted trying to

deal with the assault then it causes a chain reaction,

hypercoagulation, RNA/DNA damage due to massive free radicals. I

believe that our symptoms are so diverse because they are based on

where we are genetically weak, for example, my family has major

issues with diabetes, ergo, I have chronic pancreatitis that I did

not have before I had my sudden onset in '99. Also, I believe that

my genetics have been altered by chemicals, namely, pesticides (I

was hospitalized as a child due to pesticide exposure). Add

environmental issues (I was very high in arsenic due to drinking tap

water for years in Missouri).

So, I feel I have bacterial issues (strep and mycoplasmas and more),

I feel that I have viral issues (too many to list that I have tested

positive for), I feel that I might have even a mutated version of

strep/EBV that hasn't been tested. I know I have adrenal, thyroid,

digestive, cardio, inflammation issues that point to several

systemic problems. I feel in the future, knowing the genetic

mutations will help me " bypass " the genetic issues if possible, it

may not be possible. By helping to get my body systems working

again, detoxification, methylation, Kreb's cylcle, digestion,

Hypothalmus/Adrenal/Pituitary axis, endocrine, then we will start to

recover. Another way to say this is I can take all the

antiobiotics/antivirals I want for as long as I want and be crystal

pure until I walk down the mall and some dummy sneezes in my face -

boom, I have something again. My immune system has to work right

first then the rest will fall away (not easily, mind you, it may

take years to clear our bodies of bugs/toxins).

I guess I really feel strongly about the genetic studies in a

postive way and I feel that finally we are moving forward. These

genetic studies are coming about due to the completion of the human

genome. I feel that if nothing else, they would serve as a

biomarker test and validate the illness and help people get

disability and help from the medical community and get PROPER

FUNDING from this government that has abandoned us!

It is very early to get any treatments yet but I do feel that it is

coming. Just getting studies that show a biomarker may be enough to

get proper funding for proper studies - rather than the psychobabble

studies which are STILL being funded today by NIH.

I know Yasko is probably a dirty word here and I don't want to open

up that can of worms but Kerr, and the one study done by the CDC

about two years ago are all very positive. The study by the CDC was,

my opinion now, they accidently found a correlation between CFIDS

and genes and even found groups that showed severity. OOPS! I read

the journal study (I don't have access to it today but will try to

find it on another hard drive) and they outlined the findings and

sure enough the summary downplayed the correlation and brought up

the psychobabble crap. I was disappointed but THEY LET THE CAT OUT

OF THE BAG. And now we are moving ahead. Yay!

I would think that you have to consider that there is a genetic

component by two things - the predominance of these related

illnesses in families - my sister, countless cousins have

FMS/CFDS/MCS that there has to be a hereditary component. Then, the

way that we are diverse in our symptoms. There are similarities but

then there are differences which has been a big problem getting

medical validation. What factor could cause this? The only

scientific thought that I can come up with is genetics. You are

different from me by our genetic makeup.

By the way, this town study is looking for abnormal proteins

in the CSF and the genetics is secondary and supportive to the

data. As Rich told me recently, there are 30K genes and 10 Million

SNP's so we are a ways off but it's coming.

Anyway, these are my thoughts. I don't mind if you disagree.

Marti

[Guest guest]

>

>As Rich told me recently, there are 30K genes and 10 Million

>SNP's so we are a ways off but it's coming.

To clarify:

Rich's words - 30,000 genes, 10 million SNP's

My words - we are a ways off but it's coming

My hope is that any of these studies, the protein in CSF, the

genetic studies, the abnormal CSF pressure, will validate the

illness medically that then PCR testing of an array of bugs will be

standard.

The problem is we both may have myco's, and EBV but you have HHV6

and I don't and I may have CMV but you don't. The only test that I

have heard of that 99.9% of all CFIDSer is what is being called the

ciguatera epitope (previously the stealth virus).

I think that's why there's not enough infectious disease studies. I

am all for them but that has been the focus as of late and there is

not enough correlation to the population. I think our community

needs a biomarker test and once we get that, we will get the funding

to go whatever direction is appropriate, infections, genetics, etc.

Marti

[Guest guest]

Nice summary, Marti. Your brain seems to be functioning well. Please

be sure to read my last paragraph here, as it relates to your case.

I don't disagree, except to add that there are a few people on the

face of the earth who have an inability genetically to get infected

with HIV. This does not mean AIDS is a genetic disease.

I hasten to add that genetics is the wave of the future. If we can

find what makes some of us suceptible to whatever infections or

chemicals or toxins are causing cfs and fms then we can work to fix

it from that angle.

But fixing that may be a long time from now. Right now we MAY have

ways to fight infections or clear our homes of mold toxins and

chemicals.

We may have supplements that will restore the functioning of our

damaged bodies.

Some antibiotics are more risky than others. I happen to think that

minocycline and Zithromax in low, pulsed doses are fairly safe and

effective.

On the subject of families all coming down with something - it is

worth noting that the CDC epidemiological study done in Wichita, KS

(presented at the CFS conf 2004 in Madison) gave evidence of two very

significant facts.

1. CFS is more common in rural areas.

2. Non genetically related family are just as likely to develop cfs

if they are living in the same house.

Looks like TICKS AND SHARED BACTERIA AND VIRUSES TO ME.

a Carnes

> Hi a and Diane,

> Well, I totally agree that we are infectious. I also think that we

> have stealth viruses, bacteria/viral that mutated and is affecting

> us but our immune system can't find it to attack it.

>

> My thoughts are this, and I might not be too clear because I didn't

> sleep well last night. I believe that there are several triggers -

> chemical or viral or bacterial or vaccinations that begin the

> illness process. I believe that our bodies cannot properly recover

> due to system weakness - poor digestion, too much antibiotics.

> Basically, the body cascades from the biochemistry getting out of

> whack and can't get back on track.

>

> I personally think that all of the glutathione is depleted trying

to

> deal with the assault then it causes a chain reaction,

> hypercoagulation, RNA/DNA damage due to massive free radicals. I

> believe that our symptoms are so diverse because they are based on

> where we are genetically weak, for example, my family has major

> issues with diabetes, ergo, I have chronic pancreatitis that I did

> not have before I had my sudden onset in '99. Also, I believe that

> my genetics have been altered by chemicals, namely, pesticides (I

> was hospitalized as a child due to pesticide exposure). Add

> environmental issues (I was very high in arsenic due to drinking

tap

> water for years in Missouri).

>

> So, I feel I have bacterial issues (strep and mycoplasmas and

more),

> I feel that I have viral issues (too many to list that I have

tested

> positive for), I feel that I might have even a mutated version of

> strep/EBV that hasn't been tested. I know I have adrenal, thyroid,

> digestive, cardio, inflammation issues that point to several

> systemic problems. I feel in the future, knowing the genetic

> mutations will help me " bypass " the genetic issues if possible, it

> may not be possible. By helping to get my body systems working

> again, detoxification, methylation, Kreb's cylcle, digestion,

> Hypothalmus/Adrenal/Pituitary axis, endocrine, then we will start

to

> recover. Another way to say this is I can take all the

> antiobiotics/antivirals I want for as long as I want and be crystal

> pure until I walk down the mall and some dummy sneezes in my face -

> boom, I have something again. My immune system has to work right

> first then the rest will fall away (not easily, mind you, it may

> take years to clear our bodies of bugs/toxins).

>

> I guess I really feel strongly about the genetic studies in a

> postive way and I feel that finally we are moving forward. These

> genetic studies are coming about due to the completion of the human

> genome. I feel that if nothing else, they would serve as a

> biomarker test and validate the illness and help people get

> disability and help from the medical community and get PROPER

> FUNDING from this government that has abandoned us!

>

> It is very early to get any treatments yet but I do feel that it is

> coming. Just getting studies that show a biomarker may be enough

to

> get proper funding for proper studies - rather than the

psychobabble

> studies which are STILL being funded today by NIH.

>

> I know Yasko is probably a dirty word here and I don't want to open

> up that can of worms but Kerr, and the one study done by the CDC

> about two years ago are all very positive. The study by the CDC

was,

> my opinion now, they accidently found a correlation between CFIDS

> and genes and even found groups that showed severity. OOPS! I

read

> the journal study (I don't have access to it today but will try to

> find it on another hard drive) and they outlined the findings and

> sure enough the summary downplayed the correlation and brought up

> the psychobabble crap. I was disappointed but THEY LET THE CAT

OUT

> OF THE BAG. And now we are moving ahead. Yay!

>

> I would think that you have to consider that there is a genetic

> component by two things - the predominance of these related

> illnesses in families - my sister, countless cousins have

> FMS/CFDS/MCS that there has to be a hereditary component. Then,

the

> way that we are diverse in our symptoms. There are similarities

but

> then there are differences which has been a big problem getting

> medical validation. What factor could cause this? The only

> scientific thought that I can come up with is genetics. You are

> different from me by our genetic makeup.

>

> By the way, this town study is looking for abnormal proteins

> in the CSF and the genetics is secondary and supportive to the

> data. As Rich told me recently, there are 30K genes and 10 Million

> SNP's so we are a ways off but it's coming.

>

> Anyway, these are my thoughts. I don't mind if you disagree.

>

> Marti

>

[Guest guest]

I didn't say neurasthenia was a mental disorder, nor did I say that

cfs only began in the '80s any more than all serious viral illnesses

began in the '80s. Lyme Disease didn't begin in the late '70s.

But what we have seen in my lifetime is some new mix, just as HIV is

a new combo of viruses that monkeys and cats used to get, but not

mixed. Then it became contagious to humans - another mix that doesn't

usually happen in the wild. What happened at the cancer research lab

in the Belgian Congo? What happened on Plum Island when the US got a

scientist from Nazi Germany after WW2 to investigate every tickborne

illness on the face of the earth? He had thousands of ticks from all

over the earth there on Plum Island just across from Lyme, CT and

birds don't fly and deer don't swim, right?

Something changed, mutated, got mixed up in the late '70s. Florence

Nightingale was sick after the Crimean War. She was eventually

diagnosed with brucellosis. Why now in the US are we getting cases

of some new strain of brucellosis but people don't live on farms or

drink raw milk?

You have to ask these questions. You have to ask why a friend of mine

has mycoplasma incognitus in his bone marrow after years of

treatment. You have to ask what Dr. Lo knows about mycoplasma

incognitus which he named after it killed six people located all over

the world in six cities where there were US military bases.

Then you have to stop asking and hope and pray you can find some way

to get yourself and your family well. I don't know about your family,

but everyone so far in my family has some level of sickness and

infection with borrelia. Over 100 women in my small South Carolina

town have fibromyalgia. Nobody lists it as a outbreak of something,

because every town in the US is just the same.

Once we see reality, we can start to look for solutions. IT is far to

late to figure out where all of this started.

a Carnes

> > My only other thought is that a genetic study of cfs and fms

makes no

> > sense to me at this point in time. CFS developed in the 1980s.

>

> Hi a

>

> I respectfully disagree here. CFS name was developed at 80's but if

you

> check symtoms of neurasthenia you will see that symtoms are very

similar to

> CFS and it existed throughout the history.I am thinking we need to

be honest

> to ourselves. We can not just say neurasthenics were sick in their

head but

> we are not. This will really be unfair.

>

> wish you the best.

>

> nil

>

[Guest guest]

paula

wow some interesting history you cite. I am intrigued about plum

island and dr lo references---any book that talks about all this?

wondering where you learned it? just years of reading various things

or is there a more comprehensive source for the less informed?

thx

>

> I didn't say neurasthenia was a mental disorder, nor did I say that

> cfs only began in the '80s any more than all serious viral illnesses

> began in the '80s. Lyme Disease didn't begin in the late '70s.

>

> But what we have seen in my lifetime is some new mix, just as HIV is

> a new combo of viruses that monkeys and cats used to get, but not

> mixed. Then it became contagious to humans - another mix that doesn't

> usually happen in the wild. What happened at the cancer research lab

> in the Belgian Congo? What happened on Plum Island when the US got a

> scientist from Nazi Germany after WW2 to investigate every tickborne

> illness on the face of the earth? He had thousands of ticks from all

> over the earth there on Plum Island just across from Lyme, CT and

> birds don't fly and deer don't swim, right?

>

> Something changed, mutated, got mixed up in the late '70s. Florence

> Nightingale was sick after the Crimean War. She was eventually

> diagnosed with brucellosis. Why now in the US are we getting cases

> of some new strain of brucellosis but people don't live on farms or

> drink raw milk?

>

> You have to ask these questions. You have to ask why a friend of mine

> has mycoplasma incognitus in his bone marrow after years of

> treatment. You have to ask what Dr. Lo knows about mycoplasma

> incognitus which he named after it killed six people located all over

> the world in six cities where there were US military bases.

>

> Then you have to stop asking and hope and pray you can find some way

> to get yourself and your family well. I don't know about your family,

> but everyone so far in my family has some level of sickness and

> infection with borrelia. Over 100 women in my small South Carolina

> town have fibromyalgia. Nobody lists it as a outbreak of something,

> because every town in the US is just the same.

>

> Once we see reality, we can start to look for solutions. IT is far to

> late to figure out where all of this started.

>

> a Carnes

>

> > > My only other thought is that a genetic study of cfs and fms

> makes no

> > > sense to me at this point in time. CFS developed in the 1980s.

> >

> > Hi a

> >

> > I respectfully disagree here. CFS name was developed at 80's but if

> you

> > check symtoms of neurasthenia you will see that symtoms are very

> similar to

> > CFS and it existed throughout the history.I am thinking we need to

> be honest

> > to ourselves. We can not just say neurasthenics were sick in their

> head but

> > we are not. This will really be unfair.

> >

> > wish you the best.

> >

> > nil

> >

>

[Guest guest]

oh, I can answer my own question:

" Oslers web "

amazing what a little googling can do

someone had just rec'd that book and I forgot

this site seemed to give a concise history:

http://www.shasta.com/cybermom/putting.htm

correct me or add if wrong, obviously I have a lot of catching up to do

> >

> > I didn't say neurasthenia was a mental disorder, nor did I say that

> > cfs only began in the '80s any more than all serious viral illnesses

> > began in the '80s. Lyme Disease didn't begin in the late '70s.

> >

> > But what we have seen in my lifetime is some new mix, just as HIV is

> > a new combo of viruses that monkeys and cats used to get, but not

> > mixed. Then it became contagious to humans - another mix that doesn't

> > usually happen in the wild. What happened at the cancer research lab

> > in the Belgian Congo? What happened on Plum Island when the US got a

> > scientist from Nazi Germany after WW2 to investigate every tickborne

> > illness on the face of the earth? He had thousands of ticks from all

> > over the earth there on Plum Island just across from Lyme, CT and

> > birds don't fly and deer don't swim, right?

> >

> > Something changed, mutated, got mixed up in the late '70s. Florence

> > Nightingale was sick after the Crimean War. She was eventually

> > diagnosed with brucellosis. Why now in the US are we getting cases

> > of some new strain of brucellosis but people don't live on farms or

> > drink raw milk?

> >

> > You have to ask these questions. You have to ask why a friend of mine

> > has mycoplasma incognitus in his bone marrow after years of

> > treatment. You have to ask what Dr. Lo knows about mycoplasma

> > incognitus which he named after it killed six people located all over

> > the world in six cities where there were US military bases.

> >

> > Then you have to stop asking and hope and pray you can find some way

> > to get yourself and your family well. I don't know about your family,

> > but everyone so far in my family has some level of sickness and

> > infection with borrelia. Over 100 women in my small South Carolina

> > town have fibromyalgia. Nobody lists it as a outbreak of something,

> > because every town in the US is just the same.

> >

> > Once we see reality, we can start to look for solutions. IT is far to

> > late to figure out where all of this started.

> >

> > a Carnes

> >

> > > > My only other thought is that a genetic study of cfs and fms

> > makes no

> > > > sense to me at this point in time. CFS developed in the 1980s.

> > >

> > > Hi a

> > >

> > > I respectfully disagree here. CFS name was developed at 80's but if

> > you

> > > check symtoms of neurasthenia you will see that symtoms are very

> > similar to

> > > CFS and it existed throughout the history.I am thinking we need to

> > be honest

> > > to ourselves. We can not just say neurasthenics were sick in their

> > head but

> > > we are not. This will really be unfair.

> > >

> > > wish you the best.

> > >

> > > nil

> > >

> >

>

[Guest guest]

Read the book Lab 257 for info about plum island and lyme disease. It

is even recorded on talking books for those who are vision impaired,

joyce kaye

> >

> > I didn't say neurasthenia was a mental disorder, nor did I say

that

> > cfs only began in the '80s any more than all serious viral

illnesses

> > began in the '80s. Lyme Disease didn't begin in the late '70s.

> >

> > But what we have seen in my lifetime is some new mix, just as HIV

is

> > a new combo of viruses that monkeys and cats used to get, but not

> > mixed. Then it became contagious to humans - another mix that

doesn't

> > usually happen in the wild. What happened at the cancer research

lab

> > in the Belgian Congo? What happened on Plum Island when the US

got a

> > scientist from Nazi Germany after WW2 to investigate every

tickborne

> > illness on the face of the earth? He had thousands of ticks from

all

> > over the earth there on Plum Island just across from Lyme, CT and

> > birds don't fly and deer don't swim, right?

> >

> > Something changed, mutated, got mixed up in the late '70s.

Florence

> > Nightingale was sick after the Crimean War. She was eventually

> > diagnosed with brucellosis. Why now in the US are we getting

cases

> > of some new strain of brucellosis but people don't live on farms

or

> > drink raw milk?

> >

> > You have to ask these questions. You have to ask why a friend of

mine

> > has mycoplasma incognitus in his bone marrow after years of

> > treatment. You have to ask what Dr. Lo knows about mycoplasma

> > incognitus which he named after it killed six people located all

over

> > the world in six cities where there were US military bases.

> >

> > Then you have to stop asking and hope and pray you can find some

way

> > to get yourself and your family well. I don't know about your

family,

> > but everyone so far in my family has some level of sickness and

> > infection with borrelia. Over 100 women in my small South

Carolina

> > town have fibromyalgia. Nobody lists it as a outbreak of

something,

> > because every town in the US is just the same.

> >

> > Once we see reality, we can start to look for solutions. IT is

far to

> > late to figure out where all of this started.

> >

> > a Carnes

> >

> > > > My only other thought is that a genetic study of cfs and fms

> > makes no

> > > > sense to me at this point in time. CFS developed in the 1980s.

> > >

> > > Hi a

> > >

> > > I respectfully disagree here. CFS name was developed at 80's

but if

> > you

> > > check symtoms of neurasthenia you will see that symtoms are

very

> > similar to

> > > CFS and it existed throughout the history.I am thinking we need

to

> > be honest

> > > to ourselves. We can not just say neurasthenics were sick in

their

> > head but

> > > we are not. This will really be unfair.

> > >

> > > wish you the best.

> > >

> > > nil

> > >

> >

>

[Guest guest]

Shastacfids is a good friend of mine. She and the Mycoplasma registry

folks did a lot of research into mycoplasma incognitus. A lot of

their insights came from Dr. Garth Nicolson, but also some folks in

Huntsville, TX. I also went to the trouble to look up Dr. Lo's

original work on mycoplasma - had to get this from a medical library

as it is not online. The story about mycoplasma is not published in

book form, to my knowledge.

Osler's Web is an excellent overview of the 1980's cfs outbreaks.

Plum Island is described in a book which I THINK is entitled Lab 257.

The book about the origin of AIDS (research done by the US in a

cancer research lab in Africa) is in a book by Leonard Horowitz. I am

sorry I forget the name.

Yes, I know more than I wish I ever did. My view of life has changed,

sad to say.

a Carnes

>

> oh, I can answer my own question:

> " Oslers web "

> amazing what a little googling can do

> someone had just rec'd that book and I forgot

>

> this site seemed to give a concise history:

>

> http://www.shasta.com/cybermom/putting.htm

>

> correct me or add if wrong, obviously I have a lot of catching up

to do

>

>

> > >

> > > I didn't say neurasthenia was a mental disorder, nor did I say

that

> > > cfs only began in the '80s any more than all serious viral

illnesses

> > > began in the '80s. Lyme Disease didn't begin in the late '70s.

> > >

> > > But what we have seen in my lifetime is some new mix, just as

HIV is

> > > a new combo of viruses that monkeys and cats used to get, but

not

> > > mixed. Then it became contagious to humans - another mix that

doesn't

> > > usually happen in the wild. What happened at the cancer

research lab

> > > in the Belgian Congo? What happened on Plum Island when the US

got a

> > > scientist from Nazi Germany after WW2 to investigate every

tickborne

> > > illness on the face of the earth? He had thousands of ticks

from all

> > > over the earth there on Plum Island just across from Lyme, CT

and

> > > birds don't fly and deer don't swim, right?

> > >

> > > Something changed, mutated, got mixed up in the late '70s.

Florence

> > > Nightingale was sick after the Crimean War. She was eventually

> > > diagnosed with brucellosis. Why now in the US are we getting

cases

> > > of some new strain of brucellosis but people don't live on

farms or

> > > drink raw milk?

> > >

> > > You have to ask these questions. You have to ask why a friend

of mine

> > > has mycoplasma incognitus in his bone marrow after years of

> > > treatment. You have to ask what Dr. Lo knows about mycoplasma

> > > incognitus which he named after it killed six people located

all over

> > > the world in six cities where there were US military bases.

> > >

> > > Then you have to stop asking and hope and pray you can find

some way

> > > to get yourself and your family well. I don't know about your

family,

> > > but everyone so far in my family has some level of sickness and

> > > infection with borrelia. Over 100 women in my small South

Carolina

> > > town have fibromyalgia. Nobody lists it as a outbreak of

something,

> > > because every town in the US is just the same.

> > >

> > > Once we see reality, we can start to look for solutions. IT is

far to

> > > late to figure out where all of this started.

> > >

> > > a Carnes

> > >

> > > > > My only other thought is that a genetic study of cfs and

fms

> > > makes no

> > > > > sense to me at this point in time. CFS developed in the

1980s.

> > > >

> > > > Hi a

> > > >

> > > > I respectfully disagree here. CFS name was developed at 80's

but if

> > > you

> > > > check symtoms of neurasthenia you will see that symtoms are

very

> > > similar to

> > > > CFS and it existed throughout the history.I am thinking we

need to

> > > be honest

> > > > to ourselves. We can not just say neurasthenics were sick in

their

> > > head but

> > > > we are not. This will really be unfair.

> > > >

> > > > wish you the best.

> > > >

> > > > nil

> > > >

> > >

> >

>

[Guest guest]

Nil,

Over the past couple of years I have come to agree with you more than

I did in the past. I am not at all sure that antibiotics will be our

solution, at least not antibiotics alone.

a Carnes

>

> Yes i agree that there is an increase in infectious diseases.

>

> bw

> nil

> Re: [APPROVED AD] Chronic fatigue

syndrome with

> a neurological back ground(high

>

>

> >I didn't say neurasthenia was a mental disorder, nor did I say that

> > cfs only began in the '80s any more than all serious viral

illnesses

> > began in the '80s. Lyme Disease didn't begin in the late '70s.

> >

> > But what we have seen in my lifetime is some new mix, just as HIV

is

> > a new combo of viruses that monkeys and cats used to get, but not

> > mixed. Then it became contagious to humans - another mix that

doesn't

> > usually happen in the wild. What happened at the cancer research

lab

> > in

>

[Guest guest]

you know there was an article in rolling stone in early 1992 I think,

and it was about the origin of aids being related to monkeys in

africa, I remember I told an MD friend of mine and he got the mag and

was blown away, didnt hear much about it elsewhere or since in

mainstream press did we? It did make me a little nervous about the

vacinnations I got as a kid in early 60s....like were they all safe?

HOpefully no monkey material in them.

> > > >

> > > > I didn't say neurasthenia was a mental disorder, nor did I say

> that

> > > > cfs only began in the '80s any more than all serious viral

> illnesses

> > > > began in the '80s. Lyme Disease didn't begin in the late '70s.

> > > >

> > > > But what we have seen in my lifetime is some new mix, just as

> HIV is

> > > > a new combo of viruses that monkeys and cats used to get, but

> not

> > > > mixed. Then it became contagious to humans - another mix that

> doesn't

> > > > usually happen in the wild. What happened at the cancer

> research lab

> > > > in the Belgian Congo? What happened on Plum Island when the US

> got a

> > > > scientist from Nazi Germany after WW2 to investigate every

> tickborne

> > > > illness on the face of the earth? He had thousands of ticks

> from all

> > > > over the earth there on Plum Island just across from Lyme, CT

> and

> > > > birds don't fly and deer don't swim, right?

> > > >

> > > > Something changed, mutated, got mixed up in the late '70s.

> Florence

> > > > Nightingale was sick after the Crimean War. She was eventually

> > > > diagnosed with brucellosis. Why now in the US are we getting

> cases

> > > > of some new strain of brucellosis but people don't live on

> farms or

> > > > drink raw milk?

> > > >

> > > > You have to ask these questions. You have to ask why a friend

> of mine

> > > > has mycoplasma incognitus in his bone marrow after years of

> > > > treatment. You have to ask what Dr. Lo knows about mycoplasma

> > > > incognitus which he named after it killed six people located

> all over

> > > > the world in six cities where there were US military bases.

> > > >

> > > > Then you have to stop asking and hope and pray you can find

> some way

> > > > to get yourself and your family well. I don't know about your

> family,

> > > > but everyone so far in my family has some level of sickness and

> > > > infection with borrelia. Over 100 women in my small South

> Carolina

> > > > town have fibromyalgia. Nobody lists it as a outbreak of

> something,

> > > > because every town in the US is just the same.

> > > >

> > > > Once we see reality, we can start to look for solutions. IT is

> far to

> > > > late to figure out where all of this started.

> > > >

> > > > a Carnes

> > > >

> > > > > > My only other thought is that a genetic study of cfs and

> fms

> > > > makes no

> > > > > > sense to me at this point in time. CFS developed in the

> 1980s.

> > > > >

> > > > > Hi a

> > > > >

> > > > > I respectfully disagree here. CFS name was developed at 80's

> but if

> > > > you

> > > > > check symtoms of neurasthenia you will see that symtoms are

> very

> > > > similar to

> > > > > CFS and it existed throughout the history.I am thinking we

> need to

> > > > be honest

> > > > > to ourselves. We can not just say neurasthenics were sick in

> their

> > > > head but

> > > > > we are not. This will really be unfair.

> > > > >

> > > > > wish you the best.

> > > > >

> > > > > nil

> > > > >

> > > >

> > >

> >

>