Re: OPINION: Whey and HHV6A / Mycoplasma

[Guest guest]

Dear Ken,

I believe your opinion about not being " clear " of infection even after the

infectious agent is no longer found in the blood is right on target. From my

experience with rickettsia and this has been going on since 1977 for me, in

less than one year after all symptoms abate I become active again to the

point I have and recognize some symptoms of the disease, granted the symptoms

will be milder, or shorter in duration and perhaps even less frequent than

before, but they will be symptoms none the less and if I do not take an

aggressive stance each time they occur it can take years/months/weeks to get

better. ---I made a big mistake in 1989. I came down with the flu and it

went into bronchitis. I was sick six weeks before I got to the doc. I had

no insurance at that time and I was not working so funds were scarce. I was

also in deep grief over the loss of a spouse. That started the spiral that I

am still trying to come out of even now--- Of course, for me it was flu with

complications, but it almost goes without saying that many things trigger the

hidden reservoirs of the offending " bug " .... stress, flu, any virus or

bacterial infection.... and in our modern world we will have to confront at

least one of those within one year's time.

When I take antibiotices, I get do get better after the regimen. And after a

time (it varies, but is always precipitated by stress, flu etc.), then I step

back into a relapse, but now I don't go as far down as before. I take

action again (antibiotics) and I get better again (this time hopefully above

the best state I have previously enjoyed). This cycles me up, and has only

occured because I have taken an aggressive stance with antibiotics.

Before this year, I did not even know that Dr. Jadin existed. My doc and I

have been trying to find just the right combination,since before Nicolsen

published. Of all I have read and researched and tried, I agree with you,

Dr. Jadin is the expert and if there is anyone on the face of this earth who

has the experience to treat lingering illness, that is stubborn to cure, it

is her.

Yesterday I went on my third round of antibiotics - tetracycline this time

(Jadin's Protocol), but this time my doc was finally persuaded to add

Previcid (the proton pump inhibitor) Jadin recommends and Probenecid ( to

boost the antibiotic and to -hopefully-relax some of the herxing I experience

on antibiotics.)Jadin also recommends.

You and Laurie are trying to take the natural route (which my body does not

tolerate) I keep trying the standard one, although I long ago gave up on

Nicolsen's Protocol (for me) and am sticking soley to Jadin's. By way of

note: I am not taking Heparin this trip. One week ago my blood had thinned

so much that even the smallest amount of Lovenox was excessive. That only

happens to me when I am healing.

Let you guys know if I can tolerate this seven day trip. It's hard to

schedule the drugs right and to make no mistakes. But I've written it all

down and my new husband is standing in as my clock.

Thanks, Ruth

[Guest guest]

Ken,

So are you saying you believe no one can be cured of CFS? Does one have to

take, for ex, antibiotics forever?

Jim

[Guest guest]

,

Dr. Jadin is in South Africa. Ken's site lists her protocol.

Ruth

[Guest guest]

Ruth, Where is Dr Jadin?

> Before this year, I did not even know that Dr. Jadin existed. My doc and I

>have been trying to find just the right combination,since before Nicolsen

>published. Of all I have read and researched and tried, I agree with you,

>Dr. Jadin is the expert and if there is anyone on the face of this earth who

>has the experience to treat lingering illness, that is stubborn to cure, it

>is her.

>Yesterday I went on my third round of antibiotics - tetracycline this time

>(Jadin's Protocol), but this time my doc was finally persuaded to add

>Previcid (the proton pump inhibitor) Jadin recommends and Probenecid ( to

>boost the antibiotic and to -hopefully-relax some of the herxing I experience

>on antibiotics.)Jadin also recommends.

>You and Laurie are trying to take the natural route (which my body does not

>tolerate) I keep trying the standard one, although I long ago gave up on

>Nicolsen's Protocol (for me) and am sticking soley to Jadin's. By way of

>note: I am not taking Heparin this trip. One week ago my blood had thinned

>so much that even the smallest amount of Lovenox was excessive. That only

>happens to me when I am healing.

>Let you guys know if I can tolerate this seven day trip. It's hard to

>schedule the drugs right and to make no mistakes. But I've written it all

>down and my new husband is standing in as my clock.

>Thanks, Ruth

>

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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]

No, one can be cure BUT you must be careful not to equate SYMPTONLESS with cure.

I find the hypoxia model seems to work best to explain this. Hypoxia symptoms (=

initial CFIDS symptoms) occurs when the body's ability to access oxygen drops to

around 85% - a 15% drop, from 1% to 14% you are symptomless (as the infection

slowly grows and inhibits the body access to oxygen).

When you are symptomless -- you are up to 86% - there is still a 14%

inhibition occurring. This 14% is what you want to eliminate! Unfortunately,

blood PCR's may become negative at this point, etc. At this point some people

will continue to improve (their body kicks in and eliminates the remainder),

others will be at a truce - which means that stress, flu etc may place them down

just the little to have symptoms again, others will slide back below the 85%.

I'm symptomless, but with bromelain and antibiotics, I know that there is

still an infection there. The exit (from antibiotics) strategy with our MD is to

have NO herxheimer reaction at all from four rounds of different antibiotics

(i.e. four months after the last herxheimer from an antibiotic) - some would say

that it is " overkill " or " over use of antibiotics " but given Jadin's experience

and knowledge (handed down from her father and others at the Pasteur insititue),

it makes sense -- and cure does happen... typically after EIGHT rounds of

antibiotics(per Jadin), in bad cases, it may take 24 rounds of different

antibiotics.

By the way, by " cure " I mean sufficient supression that unless conditions

are ideal for an re-infection, a re-occurrance does not happen.

NOTE: Numbers above are not precise, just illustrative.

My reason in posting this opinion was to make sure that if there is a

significant improvement that you don't stop working at treatment -- a very great

risk if you become symptomless.

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 (also Netmeeting with Video)

Re: OPINION: Whey and HHV6A / Mycoplasma

Ken,

So are you saying you believe no one can be cured of CFS? Does one have to

take, for ex, antibiotics forever?

Jim

------------------------------------------------------------------------------

------------------------------------------------------------------------------

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]

http://www.folkarts.com/idef/jadin_protocol.htm also have links to her

presentations (she has NOT published to my knowledge)

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 (also Netmeeting with Video)

Re: OPINION: Whey and HHV6A / Mycoplasma

,

Dr. Jadin is in South Africa. Ken's site lists her protocol.

Ruth

------------------------------------------------------------------------------

------------------------------------------------------------------------------

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]

At 03:14 10/07/00, Ruth wrote:

>Yesterday I went on my third round of antibiotics - tetracycline this time

>(Jadin's Protocol), but this time my doc was finally persuaded to add

>Previcid (the proton pump inhibitor) Jadin recommends and Probenecid ( to

>boost the antibiotic and to -hopefully-relax some of the herxing I experience

>on antibiotics.)Jadin also recommends.

Ruth,

Jadin says Probenecid reduces herxing, but how and why? I attach some info

on it; it is not immediately clear to me why it should reduce herxing. Do

you know?

Thanks,

n

--------info on Probenecid from

http://www.medicinenet.com/Script/Main/Art.asp?li=MNI & d=107 & f=704 & ArticleKey=704

------------------------------

generic name: probenecid

BRAND name: BENEMID

DRUG CLASS AND MECHANISM: Probenecid acts on kidney tubules and increases

urinary excretion of uric acid, thus lowering blood uric acid levels. It is

helpful in treating patients with high uric acid levels (hyperuricemia)

associated with gouty arthritis attacks.

Probenecid also blocks the urinary excretion of penicillin and related

antibiotics, thus maintaining higher levels of the antibiotics in the

blood. It is a useful adjunct in increasing the effectiveness of penicillin

type antibiotics in treating certain infections, such as gonorrhea.

PRESCRIPTION: yes

GENERIC EQUIVALENT AVAILABLE: yes

PREPARATIONS: tablets: 0.5g

STORAGE: Store at room temperature, sealed container.

PRESCRIBED FOR: Probenecid is used for the treatment of hyperuricemia

associated with gout. It is also combined with penicillin and related

antibiotics to increase the effectiveness of the antibiotics in treating

infections, such as different forms of gonorrhea.

DOSING: Should be taken with food. Increased urinary excretion of uric acid

can lead to the formation of uric acid kidney stones, especially during

periods of dehydration. Therefore, patients placed on long term probenecid

should consume liberal amounts of fluid to avoid kidney stones.

DRUG INTERACTIONS: Probenecid is avoided in patients with a history of

hypersensitivity to the medication, in children under 2 years of age, and

in patients with blood diseases or kidney stones. Probenecid is avoided

during acute gouty arthritis attacks because it can actually make the

arthritis worse. In patients with elevated uric acid levels, treatment with

probenecid is usually not initiated until after the gouty arthritis is

completely resolved. It is common to use colchicine (a medication effective

in treating gouty arthritis) in conjunction with probenecid to avoid

reactivation of the gouty arthritis.

Probenecid blocks urinary excretion, and thereby increases the blood levels

and action of many medications, such as TYLENOL, INDOCIN, NAPROSYN, ATIVAN,

ORUDIS, RIFADIN, MECLOMEN, certain diabetes medications, and anesthetic

agents. The doses of these medications may need to be lowered to avoid side

effects and toxicity when used together with probenecid. For example,

patients receiving probenecid require significantly less anesthesia drugs.

Probenecid can increase the action of certain diabetes medicines, such as

DIABINESE, resulting in abnormally low blood sugar levels (hypoglycemia).

In patients with existing kidney disease, using penicillin and probenecid

together can result in unusually high blood penicillin levels, with

resultant toxicity.

PREGNANCY: Probenecid is avoided in pregnant women.

SIDE EFFECTS: Side effects of probenecid are uncommon and usually mild. In

addition to causing kidney stones and precipitating acute gouty arthritis,

side effects of probenecid include hair loss, skin rash, headache, nausea,

sore gums, and fever. In rare instances, it has caused severe anemias.

n

Tel/Fax +61-2-6239 6226

Canberra, Australia

[Guest guest]

Dear n,

Yes, I read all the literature before I decided whether or not to try this

drug. My Dr. says it releases the toxins associated with the " die-off " from

the antibiotics. It is also the original product in a class of drugs, one of

which is touted as the " cure " for FM. (I will email my doctor and have him

give me the correct spelling for that drug. I had never heard of it and

would not even know how to begin to write its name. It may take awhile to

get a reply from him, but I will get the info to you). One researcher found

that Probenicid relieved " some " of the symptoms of FM and decided to try out

the others in the class (all of which came along later) to see if any of them

did better. As I say, one did, but... this researcher kept poor records...

so inside the U.S.A. doctors are not inclined to use it for this purpose. My

doctor only perscribed Probenicid to me because I brought in Jadin's Protocol

and he said we could try it. My pharmacist had a little trouble attaining

the drug. It is an older med. and not carried by all the pharmacies in

Houston, Texas.

As far as my use of the drug. I am floating in liquids, but so far, so good.

I am three days into this regimen and I am still with it... I have some

discomfort in the " gut " but expected that to happen. I started with a

headache 24 hours into the probenicid, but that was gone in under one hour.

This never happens with me. Usually I get the headache and until I go off

the antibiotic and for awhile after, it stays with me in varying intensities.

My doctor said that the kidneys ability to release toxins are increased with

the use of this drug.

Hope this helps.

Ruth