Mycoplasma

[Guest guest]

Hello ALL.....

Well March was alot kinder and happier for me, Each day seems to be

picking up, The arm which is all left from Jan & Feb does not have

numb,pain,clogged feeling anylonger, seems to be in both hips now came close

to asking for pain med. , like an old arthritic complaint I had. Still no

dizzies, but FFFatigue, have to remember to sit, but it is getting hard to

remember to do that, sleeping very well,only waking up once a night, but

again two nights could have gone to bed earlier but didn't. Felt it the next

day. Can still stretch in the a.m. ,nice feeling, and now eyes tear up and

yawn at night when I am tired, we have a tendoncesy to forget the little

things.

This week cleaning, antsy(Mer) mode, tour apart pantry,etc etc...

Als got a cold, I can't remember when I had one last, went walking and

sitting outside, etc etc.

Hopefully will be shopping and driving soon. (Several weeks) I am

determined to take baby steps tho, I do not want to go backwards again. That

will be the test for sure, stamina,lights,conversations ,alertness,etc.

No problems with doxy, or augmentin, its been 9mnths 3weeks . plenty of B

complex sub. and b12 sub. Bascis on supplements. Nicolson's considerations.

Might try Immunocal... still learning interferon !

Take care...Still riding the wave...

Susy........

[Guest guest]

Last year I tested positive for Mycoplasma Incognitus.

I was treated with Doycycline. The first month was

hell from the die off, yet I took this as a good sign

that I actually had Mycoplasma. Slowly I started to

feel better. I was on the antibiotics for 5 months and

off for two. Recently I went back on the antibiotics

because I started to feel worse. Again I see an

improvement in my symptoms. My feeling is that some

peoples CFS can be caused by Mycoplasma Incognitus,

others by different viruses, and others maybe a

combination of different things. For me I did not have

all of the typical CFS symptoms (I was also sick in

1983 with Epstein Barr, bedridden with all the typical

symptoms - recovered in 1986 - sick again in 1995)but

I had enough to remind me of the past. I don't feel

Mycoplasma was the cause of my orginal illness, but a

second invasion of my immune system. I also feel

everyone shoud get tested and do a trial course of

antibioics to see if it works. I am not 100% well and

know that sokmething else is going on. I am looking

into Neurontin since I know that the Mycoplasma can

cause injury to the brain.

_________________________________________________________

[Guest guest]

In a message dated 4/12/99 5:02:18 PM Eastern Daylight Time,

musharina73@... writes:

> Hi! I was wondering where you got tested for the

> Mycoplasma. I spoke to Dr. Enlander about this, and

> although he didnt really think there was a link, I am

> not so sure.....

Hello ..... Would love to know why he was testing for mycos then,

also maybe ask to be tested for various tick born illnesses, also would love

for him to tell you what the link is or where ,

I was tested at the Nicolson's Lab IMMED,

http://www.immed.org/index.htm

soon hopefully they will be able to take insursnce for tests......

Take care......

[Guest guest]

In a message dated 4/7/99 1:00:21 AM Eastern Daylight Time,

aJeanne@... writes:

> Do each of these viruses have their own symptoms?

> All of the above cause the standard symptoms of CFIDS. They are not

> viruses. They are either bacteria or mycoplasma, thus, theoretically,

> they are treatable with antibiotics, the correct ones, not just any

> ones. For instance, penicillin will not work

Hello ALL,

I was put on pencillin for a dental minor problem, then made it

so painfull, I actually was on the kitchen floor one morning in pain, they

quickly switched me to augmentin and releived everything. I am not allergic

to penicillin either, now yrs later the fact I was pos. for mycos and the

info i read is that penicillin can make the mycos angry, Ironically I am on

augmentin and doxy now.

I wish Drs would test to see what culprit then match up the abx to it, or as

close as possible......

Take care

......susydog

[Guest guest]

Hello ALL .......

I am still on the road up..... It is finally very nice, the stress

I had to deal with in Jan & Feb did effect me more than I knew, my DH saw that

but I didn't , I also should have knocked the dose down as Dr recc.. I just

finished my 5th cycle and 2 weeks off but may add augmentin as recc. in

protocol and Drs. , the jaw and ear area seem to be acting up, something

moving around.

I am out and about ! Feels good ! but a long way to go.........

I have you all in my thoughts when it comes to lifes stressors,

Take care.......

PS:Missy I am in the garden........

[Guest guest]

Don't forget that chronic antibiotics induce candida overgrowth. Are you

familiar with the work of Dr. Jessop at UCLA?

SUSYDOG@... wrote:

> From: SUSYDOG@...

>

> Hello ALL .......

> I am still on the road up..... It is finally very nice, the stress

> I had to deal with in Jan & Feb did effect me more than I knew, my DH saw that

> but I didn't , I also should have knocked the dose down as Dr recc.. I just

> finished my 5th cycle and 2 weeks off but may add augmentin as recc. in

> protocol and Drs. , the jaw and ear area seem to be acting up, something

> moving around.

> I am out and about ! Feels good ! but a long way to go.........

> I have you all in my thoughts when it comes to lifes stressors,

> Take care.......

>

> PS:Missy I am in the garden........

>

> ------------------------------------------------------------------------

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> This list is intended for patients to share personal experiences with each

other, not to give medical advice. If you are interested in any treatment

discussed here, please consult your doctor.

[Guest guest]

the VA has a site on the Gulf War Illness

http://www.va.gov/health/environ/persgulf.htm

steve

[Guest guest]

No problem...the 1999 Sydney CFIDS/ME Conference:

http://www.ahmf.org/Conf99_2.htm

Search for Paspaliaris (I've not been able to find much on the web by him :-(

)

--- I was wondering when someone was going to ask :-) - It was only while I

was re-reading that I caught this comment and the lights went on about the viral

reactivation issue for CFS.... My earlier model had viral re-activation as a

result of amino-acid starvation (from digestion problems), although this may be

a factor -- the direct connection is more elegant.

A collegue of his wrote the beautiful piece on rickttsiae at

http://www.mfds.com.au/rick.html

A second recommended reading is at:

http://www.geocities.com/HotSprings/Spa/9168/rickettsia01.html

Mycoplasma

From: " Du Pre " <dupre@...>

Ken,

Can you tell me where the quotation below came from?

Thanks, Du Pre

* " it has been demonstrated that that mycoplasma can induce increased cytokine

levels when infected in white blood

cells, and can allow dormant viral infections to activate and replicate at

abnormal levels. " Bill Paspaliaris [*] "

[Guest guest]

I know mycoplasmas are causeing some of my symptoms. My question is what

type of doctor do I go to to get treated? what medication do i take? Also,

Ive read that taking antibiotics for a long time can really screw up your

gastro-intestinal tract. Is it worth the risk?

Thanks--

[Guest guest]

Yes (and CFS_MycoplasmaOnelist is where a lot of other antibiotics folks

hang out!) --

It is working for both me and my wife - I often compare it to chemo

theraphy, because it can be a rough ride, but whenever we take a short break

from the herxing - we notice the significant improvement we have made...

Ken Lassesen

2 @ 2 ft PWC, 2 @ 4ft PWC

2 ft PWC: http://www.folkarts.com/idef/

4 ft PWC: http://corgi.folkarts.com/

Fax: (520) 832-6836 ICQ #: 2122097 (Netmeeting too)

----- Original Message -----

From: The Bickfords

<delsol@...>

Hi,

I am undergoing long term antibiotic treatment for a possible

mycoplasmal infection. Has anyone else tried this?

Bekah in Maine

CFS/FM/MCS/EMS/Dysautonomia

[Guest guest]

Hi ,

Dr. Cheney said in his Florida lecture(Feb-99) which you can get on

audiotape from www.treeframtapes.com , that long term antibiotics can make

you an intestinal cripple. He said then, whey protein usage(Immunocal or

Immuplus or ImmunoPro) can kill off mycoplasma. He now uses ImmunoPro whey

protein.

Al

Mycoplasma

Re: mycoplasma

> From: 2276@...

>

> I know mycoplasmas are causeing some of my symptoms. My question is what

> type of doctor do I go to to get treated? what medication do i take?

Also,

> Ive read that taking antibiotics for a long time can really screw up your

> gastro-intestinal tract. Is it worth the risk?

> Thanks--

>

>

>

[Guest guest]

Dear Al,

I am aware of his notoriety as well as his fame. I had many doubts when

I found out my physician had partnered up with him.

In fact, when she nailed me for such high prices for these products, I

became quite disenamored with her. And haven't been back. I've never

seen See himself because of the Mannatech connections and dishonesty in

his work.

However, he has done some brilliant work. So although I wouldn't buy

most Mannatech products or go to him or his associate (who is the wife

of the man who dxed my CFS years ago), I respect some of his

information. I know of him only through what I've read about him and his

work, and patients of his I've spoken with in the office while waiting

2 hours to see my old physician.

I know he gets results and people fly transcontinental to see him. And,

his lab is an excellent one for CFIDS tests but very expensive and not

covered by my HMO.

Sheri

[Guest guest]

Dear Bekah,

Many people here are benefiting from long term antibiotic treatment who

have mycoplasma.

My personal advice is not to take any long term antibiotic treatments

without first being tested by a legitemate lab to confirm whether you

have mycoplasma or not. For example, I have CFS/ME, FM and dysautonomia,

but don't have a mycoplasma infection. I need different treatment. I

won't take antibiotic treatment until I have a confirmed reason why it

would help me. It depresses your natural immunity, in my opinion, and

creates new problems like wiping out the good bacteria and causing

candida. You can then take other meds or supplements with it to

counteract the negative effects, though. Never-the-less, I don't want to

get caught on an endless chain of drugs, one to counter this side effect

of the last drug, and one to counteract the side effects or imbalances

in the body from the one that countered the other's side effects, etc.

You're in the right place to learn about antibiotic treatment and

mycoplasma, so many are struck down with this nasty bacteria here.

Best wishes, Sheri

[Guest guest]

2276@... writes:

> Ive read that taking antibiotics for a long time can really screw up your

> gastro-intestinal tract. Is it worth the risk?

Hello , For me it is worth taking the abx's but I have been tested and

know what mycos etc. I have been ill 16 yrs and 3 days now, but I did get my

gut working properly thru alternative means.

Please get as many tests as possible plus it is always a good idea to get

your gut in good shape if you are having any problems. Sit down with your

Drs. , discuss things till you really know how you want to appraoch this.

Good Luck

[Guest guest]

Dear Ken,

Maybe you can shed some light or head me in the right direction....tried

the archives but to no avail...wanting to educate my doctor on

Mycoplasma and vasoconstriction...thought I saw lit on it on this

list...he was very interested in the connection as he was working on the

problem and was surprised when I informed him with die off comes

vaso....I know I didn't make it up and I do know you are the expert ;-)

Thanks for the direction, Carol

[Guest guest]

The information is 'sparse' (not a large volume - a lot of it not published in US journals): most of the stuff is simply looking for 'strings' connecting the facts...

First Mycoplasma was originally classified as Rickettsia - In 1960, Klineberg gave this bacteria the name of Mycoplasma (bacteria). . Because of this, and the little clinicial knowledge of mycoplasma, I assume that anything that applies to rickettsia, probably applies to mycoplasma (just have not been studied/researched/published yet).

Symptomotology"Because of the variation in syndromes caused by rickettsiae, the illnesses that result can sometimes be classified under different nomenclature including MS,(33,34) arteritis,(29) hemiplegia,(26) myocarditis,(28) encephalitis,(28) endarteritis,(28) Buerger disease,(37) ocular lesions,(25) Q fever with hepatitis,(27) cardiovascular diseases,(26) thalamic syndrome,(33) schizophrenia,(33) and some other psychiatric conditions,(36) and can often be successfully treated if the cause if rickettsial.(29)" [From http://www.mfds.com.au/rick.html] the (#) are reference to published works.

and later

"In 1000 patients with cardiovascular conditions, 75% tested positive to rickettsiae"

and again:

"General pathology of rickettsiaeRickettsiae can be characterised by

an affinity to infecting the vascular endotherlium its production of toxins whose role is preponderant because they are vaso-constricting, allergising, demyelinising and have specific antigenic power a possibility of a very lengthy latency in the organism with resergences, whether regular or provoked by various stimuli(33) The preferential localisation of the germ to some parts of the organism infected, which may eventually cause symptoms, often means that the origin of these symptoms is not guessed, since rickettsia are not well known.(30)

An organism attacked by sub-acute or chronic rickettsiosis is in a more or less pronounced state of anoxia bringing on a dysfunction of all the organs with an accumulation of toxic waste.(43)

Rickettsia can cause severe vaso-constriction which has a direct impact on the nervous system.(16,32,33) This is an obstacle to blood flow and disturbs the nutritional supply to the nervous tissue by depriving cells of substances necessary to life and proper functioning (oxygen, glucose, mineral salts).(33) This cellular anoxia, the basic phenomenon in multiple sclerosis, shows itself instantly by the development of nervous system manifestations.(33)"-------------------------------------------

Other recommended readings: http://www.geocities.com/HotSprings/Spa/9168/rickettsia01.html and http://www.cfs.inform.dk/Nyheder.udland/cfsnews19aug.txt

in the last one we read that Chlamydia patients ALSO have vascular problems too...

"In an open study, since 1981, 98 CFS patients were all found to test positive for Rickettsia and Chlamydia using the Giroud micro agglutination test. The great majority of patients have vascularproblems, both peripheral and central. Treatment : For a minimum of 6 months, using cyclines and or macrolides, together with vasodilatory medication, chloroquine and warm baths in the manner of Jadin."

- Dr Philippe Bottero

It is from these rickettsia people (and the work at the Pasteur Institute - back to the mid 1910's) that a large amount of information about rickettsia is known. Mycoplasma is unstudied....

the line above "its production of toxins whose role is preponderant because they are vaso-constricting, allergising, demyelinising and have specific antigenic power" is key... if the bacteria is producing vaso-constricting toxins when it is alive, what may it contain in large amounts that gets released when it dies? =>vaso-constricting toxins: which gives more direct sense to the classic "herxheimer is caused by toxins released by the bacteria" --

Going to try digging thru medline for more... but the above is where the basic information is coming from....

Ken Lassesen

PS: The response does not get posted to cfs_mycoplasmaegroups, feel free to repost there any posting of mine that they may be interested in.

Re: Mycoplasma

Dear Ken,Maybe you can shed some light or head me in the right direction....triedthe archives but to no avail...wanting to educate my doctor onMycoplasma and vasoconstriction...thought I saw lit on it on thislist...he was very interested in the connection as he was working on theproblem and was surprised when I informed him with die off comesvaso....I know I didn't make it up and I do know you are the expert ;-)Thanks for the direction, Carol

[Guest guest]

Has anyone been tested for Mycoplasma in Canada. If so, what lab does it,

and was there a cost above OHIP?

There's been some conflicting info from a couple of labs her, so looking

for one that does it (in Ontario).

Thanks

Mycoplasma

> Ken wrote:

>

> <<<<<< a SED < 4 or 5 indicates probable hypercoagulation (aka Thick

> Blood) see http://www.folkarts.com/idef/blood%5Fthinning.htm.

>

> The hypercoagulationt test is called " Immune System Activation of

> Coagulation or ISAC " - and mycoplasma (and several other organisms) can

> easily be the cause because it can activate the immune system. The CD62P

> measurement can indicates if you are fighting an infection (and thus

> antibiotics or antivirials could be needed).>>>>>>>>>>

>

> I've got a mycoplasma hominis but haven't any immunological problems. All

my

> immunological parameters are normal (NKcell and NK activity included) and

I

> haven't got flulike symptoms. But I always thought that a mycoplasma

> infection gave flulike symptoms. Is this a wrong thougt of me.

> I hope someone can help me to solve this problem.

>

> Dennis

>

>

>

> This list is intended for patients to share personal experiences with each

other, not to give medical advice. If you are interested in any treatment

discussed here, please consult your doctor.

>

>

[Guest guest]

on 8/24/00 9:51 AM, the hub at thehub@... wrote:

> Has anyone been tested for Mycoplasma in Canada. If so, what lab does it,

> and was there a cost above OHIP?

>

> There's been some conflicting info from a couple of labs her, so looking

> for one that does it (in Ontario).

Hi,

I don't think there are any labs in Canada that test for Mycoplasma species.

When I saw my doc recently, I asked him whether or not he tests for

Mycoplasma. He said, " not really, not unless a patient demands it " . He

added that it is quite expensive, too. I didn't ask exact cost.

I asked him if he used Nicholson's lab and he said no. He uses Vodjani's

lab. I don't know where that is, I don't think he's in Canada. As far as

OHIP covering it, I doubt it, although it's within the realm of possibility.

If you hear of any mycoplasma test that's covered by OHIP please contact me!

That would be great.

I'm really really frustrated with how limited I am without private

insurance. most of my prescriptions aren't covered by the Trillium Drug

Program, no dental coverage, etc. I am spending around $700 per month in

medical expenses, including supplements. And that doesn't include the

thousands of dollars in dental fees i've paid out over the past year.

It's abominable. The sicker one becomes, the more likely that they will be

unable to carry on working/going to school. Consequently, the more likely

it becomes that one will find themself without medical/dental insurance

coverage. This leads to a truly vicious vicious-circle. I spend all my

money trying to regain my health, which deprives me of the ability to make

any kind of long ranging life changes. It would be nice to take some

courses again, maybe move back to BC where I feel happier -- but those are

now overly expensive options.

AAHHHHHHHHHRRRRRRGGGGGHHHH!

Feeling enormous despair.

Hud

[Guest guest]

> I had this and h202/uvb knocked it out, but I can't find an other

references

> to oxidative med. with this species.

Matt,

Can you describe in more detail your experience with mycoplasma....how you

figured it out and what your symptoms were? What kind of h202 therapy did

you use? (IV?) And I would like to hear more about the uvb, too.

Thanks,

Patty

faussettdp@...

[Guest guest]

In a message dated 10/5/00 4:12:47 PM Pacific Daylight Time, bullocks@...

writes:

<<

Has anybody ever heard of a lab called Immunosciences Lab, Inc. in Beverly

Hills? They did my mycoplasma test and it came back negative but I'm kind of

skeptical. I assumed that the Dr. (not my regular) would send it to Dr.

Nicholsons lab in Huntington Beach, but he didn't. The test only cost $150

which seems pretty cheap compared to what other people have paid. No big

deal but any input would be considered helpful. Steve B. >>

Hi Steve, I would have had the test done by Dr. Nicholsons lab. that way you

know it perfectly accurate. I also had one done at immunoscience lab and I

want to redo it. It came out negative as well.

[Guest guest]

Steve B

you may want to check in with the mycoplasma registry. They keep a list

of labs which test for mycoplasma sp. I was tested negative by

Nicholsons lab last year, and called to make sure that meant that I was

indeed negative. Nicholson was quite adamant that it was a very

accurate test and suggested that I next test for Chlamydia Pneumonii and

said that I could use the same blood which they had saved a sample of.

I next talked to a guy in the lab, who recommended not using that blood

because it might be too old. That didn't instill confidence in their lab

work.

This year I communicated with someone from the mycoplasma registry

who said that Nicholsons lab does give false negatives and that I ought

to re-test. I don't think they were saying that it's not a good lab,

just not infallible. I would if I could afford it, but not until doing

many other tests and treatments first. This also based on non response

to 3 months of doxicycline, Nicholsons drug of choice.

E.

<

  Has anybody ever heard of a lab called Immunosciences Lab, Inc. in

Beverly Hills? They did my mycoplasma test and it came back negative but

I'm kind of skeptical. I assumed that the Dr. (not my regular) would

send it to Dr. Nicholsons lab in Huntington Beach, but he didn't. The

test only cost $150 which seems pretty cheap compared to what other

people have paid. No big deal but any input would be considered helpful.

Steve B. >>

<<Hi Steve, I would have had the test done by Dr. Nicholsons lab. that

way you know it perfectly accurate. I also had one done at immunoscience

lab and I want to redo it. It came out negative as well.

[Guest guest]

I just got the same test done at the same lab, and it came back positive for

me. The reason it is so cheap is that they are screening for all forms of

mycoplasma at once, but they don't know which species you have, just that

you have one.

I understand that they use the same procedures as Dr. Nicholson and that he

used to be associated with them, but I could have misunderstood that.

I have in the past had good results with Immunosciences, and they have a

good reputation. That doesn't necessarily prove that you are negative,

though. You could call them and ask what their false negative rate; I seem

to recall getting a straight answer out of them at one point despite being a

patient. (Some labs will talk to patients, some won't.)

Mycoplasma

> Hi All,

>

> Has anybody ever heard of a lab called Immunosciences Lab, Inc. in Beverly

Hills? They did my mycoplasma test and it came back negative but I'm kind

of skeptical. I assumed that the Dr. (not my regular) would send it to Dr.

Nicholsons lab in Huntington Beach, but he didn't. The test only cost $150

which seems pretty cheap compared to what other people have paid. No big

deal but any input would be considered helpful. Steve B.

>

>

>

[Guest guest]

Nicholsons lab does do a screening test for all 4 species (at least the

4 that they test for) at once, but they also test for each individually

by PCR. Their recommendation is that you get all of those test, which I

did, to minimize the possibility of a false negative.

The Nicholson lab guy also told me that they originated the

technology that Immunosciences uses and didn't seem to think testing

with them was a good idea because their lab was better at it. But what

does that tell you? They are competitors and even in the same part of

the country. Nicholsons lab probably does do it a lot more, and that's

almost all they do.

So you can get a screening test pretty cheap through the Nicholson

lab. Or could when I was tested last year.

E.

<<I just got the same test done at the same lab, and it came back

positive for me. The reason it is so cheap is that they are screening

for all forms of mycoplasma at once, but they don't know which species

you have, just that you have one.

I understand that they use the same procedures as Dr. Nicholson and that

he used to be associated with them, but I could have misunderstood that.

I have in the past had good results with Immunosciences, and they have a

good reputation. That doesn't necessarily prove that you are negative,

though. You could call them and ask what their false negative rate; I

seem to recall getting a straight answer out of them at one point

despite being a patient. (Some labs will talk to patients, some won't.)

<<Hi All,

Has anybody ever heard of a lab called Immunosciences Lab, Inc. in

Beverly

Hills? They did my mycoplasma test and it came back negative but I'm

kind of skeptical. I assumed that the Dr. (not my regular) would send it

to Dr. Nicholsons lab in Huntington Beach, but he didn't. The test only

cost $150 which seems pretty cheap compared to what other people have

paid. No big deal but any input would be considered helpful. Steve B.

[Guest guest]

,

Thanks for the input regarding mycoplasma. I've decided not to have the

test re-done. Also I would never go off Imuplus for 6 weeks. Steve B.

Re: Mycoplasma

> B,

>

> The Mycoplasm species test you had done is not as accurate as once

> thought. The individual species tests are the ones that should be

> done. As I understand the Nicolson's are now saying that the species

> screening is not reliable and that the individual tests should be

> done to ensure reliability. This costs usually around $450-$500 for

> the individual tests. Also I have heard that the wheys may affect

> the outcome of the test so you should come off at least 6 weeks prior

> to testing just to be safe.

>

>

> > Nicholsons lab does do a screening test for all 4 species (at least

> the

> > 4 that they test for) at once, but they also test for each

> individually

> > by PCR. Their recommendation is that you get all of those test,

> which I

> > did, to minimize the possibility of a false negative.

>

>

>

>

> This list is intended for patients to share personal experiences with each

other, not to give medical advice. If you are interested in any treatment

discussed here, please consult your doctor.

>

[Guest guest]

B,

The Mycoplasm species test you had done is not as accurate as once

thought. The individual species tests are the ones that should be

done. As I understand the Nicolson's are now saying that the species

screening is not reliable and that the individual tests should be

done to ensure reliability. This costs usually around $450-$500 for

the individual tests. Also I have heard that the wheys may affect

the outcome of the test so you should come off at least 6 weeks prior

to testing just to be safe.

> Nicholsons lab does do a screening test for all 4 species (at least

the

> 4 that they test for) at once, but they also test for each

individually

> by PCR. Their recommendation is that you get all of those test,

which I

> did, to minimize the possibility of a false negative.