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Re: Chlamydia Pneumonia & CFS

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i was also infected with cpn once.1 set of antibiotics was given and no further

checks were done. is it important? do i have to work on it?

bw

Nil

Chlamydia Pneumonia & CFS

My partner is bedridden with Severe M.E and was diagnosed with the

bacterial infection Chlamydia Pneumonia (cpn).

A link has been found between cpn infection and CFS by Dr

Stratton of Vanderbilt University.

My partner is following the protocol on this website which may be of

interest to people here:-

www.cpnhelp.org

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Hi Nil,

The cpn bug has 3 forms and it can change into any of the 3:-

EB - this form exists in the blood stream looking for cells to infect.

It can be killed with either the antibiotic Amoxycillin or the

supplement you can buy in a health food store called NAC.

RB - once an EB finds a cell, it enters the cell and becomes an

intracellular RB, meaning that your immune system cannot detect it.

When in the cell, it replicates, releasing further EBs into the blood

stream and steals ATP from the cell, giving the classic fatigue as in

Chronic Fatigue Syndrome. The cell cannot do the job it is supposed to

as the cpn bug is feeding off the ATP energy. The cell involved could

be an immune system cell, heart, liver, muscle, etc.

At this stage two further antibiotics are given - Doxycycline and

Azithromycin (or Roxithromycin). Once these antibiotics are given,

some of the RBs are forced into the hibernation stage to protect

themselves (Cryptic stage). The other RB's that are not developed

enough to go cryptic, die.

Cryptic - When in this hibernation stage, it is hidden from your immune

system and is immune to most antibiotics except Bacteriostatics

including Flagyl and Tinidazole. Unfortunately, even though it is in

hibernation mode, it is continuing to use your cell's ATP.

One of the reasons many people with CFS have trouble with the reactions

to antibiotcs, could be that the antibiotic is doing it's job, and that

the reaction could be a herx reaction.

Please look at this website - www.cpnhelp.org

This is all cutting edge research and most doctors know nothing about

this - even experts on the CPN bug.

Dr Stratton at Vanderbilt found the link between cpn and CFS in the

1990s but because at the time CFS was labelled a pshyciatric issue and

not physical, this research was never published in medical journals -

Politics at it's best (or worst). He found that 100% (ONE HUNDRED

PERCENT) of the CFS blood samples he was sent, had cpn infection.

See this link:-

http://www.immunesupport.com/library/showarticle.cfm/id/7938/searchtext/

Chlamydia%20Pneumoniae/

Stratton has once again started his research into cpn at his lab at

Vanderbilt University.

Experts including Dr Stratton, Dr and UK Dr Wheldon are

finding links between cpn and many other illnesses other than CFS.

IMO if you have CFS, it is worth looking at the cpnhelp site, and bear

in mind that if you do have cpn infection, taking just one antibiotic

will not work, you need to take 3 and the protocol on the cpnhelp site

that my partner is taking, lasts for up to 5 years - that is how long

it may take to erradicate this infection.

Food for thought.

Thanks,

Mark Hall

>

> i was also infected with cpn once.1 set of antibiotics was given and

no further checks were done. is it important? do i have to work on it?

> bw

> Nil

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Hi,

Sorry, I meant to say that the Flagyl (Metronidazole) and Tinidazole

are used for the cryptic form of cpn because of their bactericidal

properties with this bug.

Mark

>

> Metronidazole and tinidazole (like most abx) can be bacteriostatic or

bactericidal depending on the dose and the micro-organism that is being

targeted. Their metabolites interfere with the bug's DNA. They are one

of the few abx that has very good activity against anaerobic bacteria.

>

> Some abx like the penicillins and the cephalosporins kill the bugs by

destroying their cell-walls as they are developing, and are therefore

considered bactericidal, others like the cyclines and the macrolides

tend to just stop the bugs from replicating (bacteriostatic effect) by

interfering with ribosome function

>

> Nelly

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> Thanks for your answer. I checked the links.I made some reading at

> web and saw that it was said that about 50 percent of normal

> population gets infected by CP at least once in their lives.

Yes, they say that by the age of 60, most people have the cpn bug in

their blood.

> so I am wondering what that means.if 50 percent of the population

> is infected with it once in their lives than can we say that it is

> an infection that our CFS bodies can not overcome whereas normal

> people can overcome it.

I think it is a genetic factor that means certain people may get CFS

from the bug. There are many people on the cpnhelp site who have a

diagnosis of cpn infection, but have other serious ailments like MS

which they are successfully treating. Dr Wheldon in the UK

successfully treated his wife, who had the later stages of MS Some

are successfully treating their arthritis on this protocol. There

are links between cpn and dementia.

There are also links between asthma and cpn. Cpn and heart disease.

Cpn & sinusitus - the list goes on and on.

It all seems like a genetic factor of which ailment you may get.

What I am trying to say, is that this bug is a very slow reproducing

bug and can take years to give anyone symptoms.

I am not saying that cpn alone causes CFS, but as it seems to take

control (within a CFS patient) of immune system cells, this means

that your immune system is unable to fight other infections that may

also cause CFS.

> Dr Stratton at Vanderbilt found the link between cpn and CFS in the

> 1990s but because at the time CFS was labelled a pshyciatric issue

> and not physical, this research was never published in medical

> journals - Politics at it's best (or worst). He found that 100%

> (ONE HUNDRED PERCENT) of the CFS blood samples he was sent, had cpn

> infection.

>

> this is very important claim.are you all checked for CP? still I

> have the same question on mind. does that mean CP is causing CFS or

> does it mean we can not overcome this bug because of our depressed

> immune system.

As I said above, if you have CFS and a confirmed cpn infection, it is

possible that the cpn is one of the causes of your CFS. Remember, as

I said earlier, the cpn bug (in CFS cases) saps the ATP from immune

system cells, meaning that they can't do the job they were born to do.

The cpn bug seems to act like a parasitic virus, not a bacteria. In

fact originally when it was first discovered, researchers thought

that cpn was a virus.

The first priority would be to start killing the cpn bug, so your

immune system can start working properly again and fight anything

else you have. It is very hard to erradicate cpn and can take up to

5 years of the 3 antibiotics taken together

A problem that cpn causes is something called secondary prophyria.

This gives people the typical CFS type problems that I bet many

people here have, including light sensitivity, chemical sensitivity,

noise sensitivity, and food sensitivity, as well as mood problems.

This bug is very complicated to understand and treat, but I recommend

getting tested for it - but, the usual problem here - like lyme

disease, it can be hard to detect, especially with most of the bug

being intracellular.

Please read www.cpnhelp.org

There is far more information on this site than what I can type on a

mailing list.

Thank goodness that Dr Stratton at Vanderbilt is starting clinical

research again into cpn, so some of the knowledge will eventually

filter down into the medical establishment.

Thanks,

Mark Hall

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One other thing. In the original 1990s Stratton research, when he

found cpn infection in 100% of CFS samples - he found only 18-25% cpn

infection in the control samples (healthy samples).

Some experts on the cpnhelp site say that it is possible that cpn is

the main pre-curser. So firstly treat the cpn, and as your body and

immune system heal, your immune system will fight any other infection

left in your body - doing the job that they were born to do.

Thanks,

Mark Hall

>

> > Thanks for your answer. I checked the links.I made some reading

at

> > web and saw that it was said that about 50 percent of normal

> > population gets infected by CP at least once in their lives.

>

> Yes, they say that by the age of 60, most people have the cpn bug

in

> their blood.

>

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>

> Excellent information! I read over someone else's Kenny De Meirleir

notes after looking over the Cpn site, and I noticed that he mentions

this as well, though he says viruses may be reactivated in ME/CFS and

that he uses azithromycin as treatment - but that wouldn't be

sufficient would it, according to what I read on the site it is only

treating part of the problem?

I was a patient of DML.

Had EBV and chlamydia and indeed I got rid of the chlamydia.Even very

quickly.

Still stuck with the EBV though.

Greetings,

Dirk

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Hey you have my attention Dirk, what did that involve - testing,

treatment - any improvement in spite of the continuing presence of EBV?

Hi,,

http://www.immunesupport.com/library/showarticle.cfm/id/8489

a link to DML lecture in Perth.

Testing : Rnase;elastase;Natural Killer cells;virusses.......also for

fructose and lactose malabsorption

Treatment : antibiotics;diet (fructose and lactose)and lots of stuff to

make the digestion better like VSL;hydrozyme

Also Vitamine C and B (hydroxocobalamine);drinking 3 liter of water a

day

Improvement : started with EBV and Chlamydia.

Lost the chlamydia but EBV keeps coming back (for 4 years already)

Can't seem to get rid of it.

Dml wants me to go on Nexavir but am hesitating (financial problem)

He really has a good look at the problem.

Greetings,

Dirk

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Edgar,

Tell us more. Exactly what dose of each and how long? What symptoms

did you develop following this? What was wrong with you that these

were prescribed? How long have you had symptoms?

Thanks,

a Carnes

>

> However a megadose of azithromycin with a dose of Levaquin was

> pricisely what precipitated my CFS.

>

> Edgar

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Hi Nil,

What I meant was that if you do not have an active infection, you may

not create antibodies, so it will not be detected with the usual cpn

test.

It depends if it ventures past the intitial lung infection.

What I meant, is sometimes people when tested get a false negative as

the bug has become intracellular and isn't detected by the immune

system.

Mark

>

> Thank you very much for the detailed info Mark. It is said that

it is hard to detect.I wonder how mine was detected at a simple

antibiogram.

>

> bw

> nil

> Re: Chlamydia Pneumonia & CFS

>

>

> > Thanks for your answer. I checked the links.I made some reading

at

> > web and saw that it was said that about 50 percent of normal

> > population gets infected by CP at least once in their lives.

>

>

>

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Edgar,

The normal dose of Azith for cpn infection on the Stratton/Wheldon

protocol is 250mg 3 times per week because it has quite a large half

life. Some people on the protocol with CFS have quite a large

reaction to Azith - it isn't an allergic reaction in most cases, but

a herx reaction or more probably relating to secondary porphyria

caused by the dieing cpn infected cells releasing porphyrins into the

blood. This can be a major cause of fatigue, which is why the

protocol has to be started very slowly for people with CFS.

Treating cpn infection with antibiotics has to be done very

carefully. I am not saying the your fatigue is caused by cpn Edgar,

but it is worth investigating further IMO.

Mark

>

> > Edgar,

> > Tell us more. Exactly what dose of each and how long? What

symptoms

> > did you develop following this? What was wrong with you that these

> > were prescribed? How long have you had symptoms?

> >

> > Thanks,

> > a Carnes

> >

> > >

> > > However a megadose of azithromycin with a dose of Levaquin was

> > > pricisely what precipitated my CFS.

> > >

> > > Edgar

> >

> >

> >

>

>

>

>

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Dirk,

What did you take to get rid of your cpn?

Mark

> >

> > Excellent information! I read over someone else's Kenny De

Meirleir

> notes after looking over the Cpn site, and I noticed that he

mentions

> this as well, though he says viruses may be reactivated in ME/CFS

and

> that he uses azithromycin as treatment - but that wouldn't be

> sufficient would it, according to what I read on the site it is

only

> treating part of the problem?

>

>

> I was a patient of DML.

> Had EBV and chlamydia and indeed I got rid of the chlamydia.Even

very

> quickly.

> Still stuck with the EBV though.

> Greetings,

> Dirk

>

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Yes ,

To rid yourself of cpn completely, you need to fight it on all 3 fronts

at the same time:-

1) Amoxy / or / herbal supplement NAC to kill the EB spores in the

blood.

2) Doxycycline and Azithromycin / or / Roxythromycin to stop the

intracellular RB replication in the cells. This will force the RBs

cryptic (the ones that are not ready to go cryptic will die). Taking

the Doxy and Azith/Roxy together will ensure there is no antibiotic

resistance.

3) " Pulse " Flagyl or similar for one week every three weeks. This will

destroy the cryptic form causing massive die-off which is the reason

for giving your body a rest between pulses to recover.

This you need to do for up to 5 years to erradicate the bug completely.

I only found out about cpn in April 2007 and my partner has been on the

protocol since November 2007.

So far, she is taking 2400mg NAC and 200mg Doxy daily, so she hasn't

got very far in the protocol yet. I will update you when I can.

For more info, please see www.cpnhelp.org

Mark

>

> Excellent information! I read over someone else's Kenny De Meirleir

notes after looking over the Cpn site, and I noticed that he mentions

this as well, though he says viruses may be reactivated in ME/CFS and

that he uses azithromycin as treatment - but that wouldn't be

sufficient would it, according to what I read on the site it is only

treating part of the problem?

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>

> Dirk,

>

> What did you take to get rid of your cpn?

>

> Mark

I looked through my papers and found the following treatment after

which the cpn was gone.I had many " pulses of antibiotics "

Know that after this treatment (which I did for 3 months)the cpn was

gone

So,in august 2004 I had a leaky gut;cpn and a reactivvation of EBV.

Very high NK

Elastase also very high

Very high Rnase L

(for exact figures and ratio's I must ask my doc)

The treatment I followed was :

Ciproxine 500 mg;2/day during the first 10 days of the month;the other

days VSL3 also twice a day

Combizym : 1 at every time you eat

Aciclovir 800 mg : 1 a day

Vit C : 3 times 1mg a day

Omega 3-6-9 : 3 a day

Don't know if this makes more sense.

Greetings,

Dirk

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>

> Yes ,

>

> To rid yourself of cpn completely, you need to fight it on all 3

fronts

> at the same time:-

> This you need to do for up to 5 years to erradicate the bug

completely.

>

My personal opinion follows - please don't flame me.

WOW! That's alot of abx & for a long time. You would have NO good

flora left which is 70% of your immune system - in the gut.

Let's say you do this for the 5 years and you are squeaky clean.

What happens after you are exposed to the bacteria or any other

bacteria or virus? You get it again - even faster since you have no

immune function left in your gut.

Doesn't that leave you worse off than before? Just want to point

out the risks involved in this protocol especially for new people

who are desperate to get well and may not have thought through the

ramifications.

I know there are some on this list who advocate long term

antibiotics but I think there are some risks that have to be

evaluated. Please be careful.

Marti

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Hi Marti.

To ensure you have a good supply of the good gut bacteria, you have

to take daily acidophilus supplements and you have to take them at

least 2 hours after/before taking the abx, so the abx doesn't destroy

them. As long as you stick to this, your gut should have a constant

supply of good bacteria.

When you have almost rid yourself of cpn, it is advisable to take the

supplement NAC for the rest of your life, to ensure any new cpn

spores are killed as they enter your body if your immune system

doesn't get them first.

Just to point out that experts say that your immune system is

supressed if you have cpn infection, because of the bugs infecting

and using the atp of the immune system macrophages.

It seems to be the case with many people on the protocol, that they

don't seem to get as many colds as they used to or other infections.

This is put down to the their immune systems working properly again.

So fight the cpn infection using the abx, to allow your immune system

to fight everything else.

Regards,

Mark

>

> My personal opinion follows - please don't flame me.

>

> WOW! That's alot of abx & for a long time. You would have NO good

> flora left which is 70% of your immune system - in the gut.

>

> Let's say you do this for the 5 years and you are squeaky clean.

> What happens after you are exposed to the bacteria or any other

> bacteria or virus? You get it again - even faster since you have

no

> immune function left in your gut.

>

> Doesn't that leave you worse off than before? Just want to point

> out the risks involved in this protocol especially for new people

> who are desperate to get well and may not have thought through the

> ramifications.

>

> I know there are some on this list who advocate long term

> antibiotics but I think there are some risks that have to be

> evaluated. Please be careful.

>

> Marti

>

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,

That is why it is advisable to start the protocol (especially if you

have CFS), very slowly.

You will get perceived reactions to the abx, but in most cases it will

not be reactions to the abx, but reactions to dieing cpn and secondary

porphyria.

Do a google on Secondary Porphyria, it isn't a nice thing to get, and

will increase on the protocol as the bugs are dieing. Daily activated

Charcoal is normally taken to rid yourself of as much porphyrins in

your gut as possible.

I agree that this protocol isn't something to be done lightly, but

please research it. There are many people on the cpnhelp support group

who have almost cured themselves of CFS and other illnesses on the

protocol.

It may be hard and painful, but at the end of the day, if you are well

in the end - is it not worth it?

For the first time in 2 years since my partner became bedridden, we

have found some hope and when you do the research, all the jigsaw

pieces seemed to come together when we saw the links between her

condition and what could be causing it.

Regards,

Mark

>

> Hi Marti

> Yes, indeed. I've read the literature with all the warnings for all

of these drugs, and I've also read that people with long term ME/CFS

are more likely to suffer bad affects from them, and that research is

being done to find other ways of treating these bugs which are safer,

maybe much lower doses. As a really sensitive person, I know I'd be the

unlucky sod who made herself sicker using this stuff, so certainly

considerable caution, knowledge and patience required.

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Hi .

I know there are other people of the cpnhelp support group who are from

Australia. Maybe you could ask them. I am from the UK.

NAC is a supplement that can be bought from any health food shop. It

is normally taken as a precursor to the antioxidant Glutathione and has

a side effect of killing the EB spore form of cpn. Many people on the

cpnhelp site have a lot of trouble getting tested for cpn, and use NAC

as a test itself. Many take NAC, and if they get cold/flu symtoms, it

could be cpn spore die-off.

I have heard many a time that people who have CFS have a Glutathione

deficiancy and supplementing with NAC is a good idea anyway

We buy ours from www.iherb.com

Hope this helps,

Mark Hall

>

> Thanks Mark, I've read the pages on that site extensively. The first

step would be to find a doctor who will assist with the initial

testing, and provide support in the treatment. ly I don't know who

to turn to yet, but I'm working on it. I live in Australia. I think

some of the tests you have available in the US, such as at Redlabs

might become available here this year. I'm watching and waiting. I'm

also interested in other antiviral treatments, but I don't know whether

my body can handle so much medication. I'm not sure I know about NAC.

Can you tell me a bit about it and where I can order it?

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" capn_black2003 " <capn_black2003@...> wrote:

> NAC is a supplement that can be bought from any

> health food shop. It

> is normally taken as a precursor to the antioxidant

> Glutathione and has

> a side effect of killing the EB spore form of cpn.

> Many people on the

> cpnhelp site have a lot of trouble getting tested for

> cpn, and use NAC

> as a test itself. Many take NAC, and if they get

> cold/flu symtoms, it

> could be cpn spore die-off.

> I have heard many a time that people who have

> CFS have a Glutathione

> deficiancy and supplementing with NAC is a good idea anyway

Not everyone does well with NAC, maybe genetics?

If experimenting with NAC, keep mind open to this possibility

as well.

Carol

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> The treatment I followed was :

>

> Ciproxine 500 mg;2/day during the first 10 days of the month;the

other

> days VSL3 also twice a day

>

> Combizym : 1 at every time you eat

> Aciclovir 800 mg : 1 a day

> Vit C : 3 times 1mg a day

> Omega 3-6-9 : 3 a day

Mark,

Before this I had the following treatment (no bloodtest in between

the two treatments)

Zitromax 250 mg/1 a day for 6 weeks followed by tetralysal 300 mg/2 a

day for 6 weeks

Lacteol 3 a day

Acetylcysteine EG 600 mg/ 1 a day

B12 10000 mcg lozenges/ 1 a day

Chlorella 1000 mg/ 3 a day

Greetings,

Dirk

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Hi Dirk,

I don't know anything about the other antibiotics. The recommended

ones by the cpn experts are on the cpnhelp.org website.

The Acetylcysteine which I think is the same as NAC - the

recommendation is at least 600mg twice per day, building up to 1200mg

twice per day.

The Vitamin B12 lozenges is a definite must as the cpn causes your

body to create antibodies that attach themselves to B12 - giving most

cpn infected CFS people a large B12 deficiency. The dosage is 5000mcg

3 times per day.

The Vit C, Omega 3,6,9 and Chlorella are all good supplements to

take. If anyone is interested, the full list of recommended

supplements for the cpn CAP protocol is:-

http://www.cpnhelp.org/publicimages/allsupplementschart.html

I know that this is a massive amount to take and it is mainly to

counteract any inflamation, endotoxic reaction, secondary porphyria

caused by cpn die-off when taking the antibiotics when on the CAP.

Hope this answers your question.

Thanks,

Mark Hall

>

> > The treatment I followed was :

> >

> > Ciproxine 500 mg;2/day during the first 10 days of the month;the

> other

> > days VSL3 also twice a day

> >

> > Combizym : 1 at every time you eat

> > Aciclovir 800 mg : 1 a day

> > Vit C : 3 times 1mg a day

> > Omega 3-6-9 : 3 a day

>

> Mark,

> Before this I had the following treatment (no bloodtest in between

> the two treatments)

> Zitromax 250 mg/1 a day for 6 weeks followed by tetralysal 300 mg/2

a

> day for 6 weeks

> Lacteol 3 a day

> Acetylcysteine EG 600 mg/ 1 a day

> B12 10000 mcg lozenges/ 1 a day

> Chlorella 1000 mg/ 3 a day

>

> Greetings,

> Dirk

>

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Hi ,

Yes the NAC does is quite high on the protocol, but that is what is

needed. JimK, the creator of the cpnhelp website explains what NAC

does to cpn better that what I could -

" but the main purpose of NAC in the protocol is because it is

a " cysteine bond reducer " rather than for it's antioxidant functions.

This breaks or " reduces " in chemical terms, the cysteine-rich

molecules of the Elementary Body cell wall, exposing it to the immune

system so it can be kill before it enters a cell. "

There is a brilliant forum on the cpnhelp.org website, which acts

like an online support group, giving advice to many people who think

their condition is caused by cpn infection. The people who post

include Dr Wheldon (One of the expert cpn doctors) himself when he

has time, other specialists who have a field in microbiology, and

patients themselves who have gotten better on the protocol. It is a

website manned by volunteers, many who have gotten better and want to

help other people to get better.

Hope this helps.

Thanks,

Mark Hall

>

> Thanks Mark,

> I've used this as a powder, but only a very small amount at a time.

I didn't notice, at that dose any nasty reaction, but as I am already

using glutathion I kept the dose low so I didn't overwhelm my body.

Now, I see that the iherb NAC is quite a high dose by comparison.

It's a good plan to investigate further I think in the light of this

new information. Is the cpn help group on the cpn website?

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  • 11 months later...

Hi

I am trying to find info about people who have had redlabs, and if

there are issues with leaky guy what you have done etc for tx.

I saw on this oldr post below someone rec'd N-AC for CpN; I thought a

bad reaction to NAc is sign possible of CPN, but they recommend taking

it anyway? maybe its like mine friend who was treated for hep c for 6

months, it was torture, painful and she was down for the count

duringthat time. Is that how it has to be to go after infections with cfs?

[Moderator: I do not believe that it the way that it need to be, it may be

fastest way -- if you survive. My experience has to been to tune dosage so that

you herx at night (while you sleep) and just a little under the weather during

the day.... typically that is done with the use of potenators in the evening

(enzyemes like bromelain,serrapetase etc), and anti-coagulants in the morning]

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