Re: Low Dose Abx Work for Me

[Guest guest]

> Yes, mino and Z are part of the unmentionable protocol.

Tini and zith are also part of the Vanderbilt protocol (see

cpnhelp.org) and mino is pretty close.

I'm curious what your tini doses and other doses are? I know it can

take many paragraphs to explain changes in time over a multi-year

regime... I'm just interested in the rough outline.

I did 2 months of doxy 300 / ceftin 1000, then 4 months of mepron /

zith / artemisinin, then a month of doxy 400 / zith / tini 2000, then

many months of doxy 400 / tini 2000. All doses are daily totals (not

necessarily taken all at once) in milligrams.

I'm male, 25 years old, 60 kg, started abx a few months after complete

development of slow-onset CFS, and am currently plateaued (for 5

months now) at 95% improved from severe CFS.

[Guest guest]

Low dose ABX works for me too, I'm slowly constantly improving.

On high doses I improve fast and relapse within months.

My offical diagnos is suspected neroborriliose

with migrating pain in neck and back, it got my temporary 100%

disability approved for 3 years.

So far as i can tell I have had most of it from very young(born 1956).

during 1990... i started get more tired and got flues when i tried do

do my usual exercises.

2001 feb I got a pelvic pain, in couln't move in bed.

Rest of family sick, my son complained he couldn't see ->ER.

2003 Nov I collapsed, labormedezin in koeln states an active borrelia

+ WB higly positiv.

see photos/Dark Field Microscope for example of blood.

2004 3 masive oral abx + one IV

o Feb 21 days of 200mg doxy,

o June 2x5 days 2g rocephalin with

3 days Flagyl 400 mgx3 for 3 days between infusion series

o July 200mg doxyferm for 21 days

o Nov Tetracycline 500mgx4 for 21 days

2005 started 125 mg tetracyline every other day.

acupunctur and abx don't go gother, I skip a dose tho avoid to

have a runaway inflammation.

2006 Fever for first time in 20 years(39.5C), Temp increase, used to decrease.

Temprature seem to regulate more, it does not get 'stuck' in below 36 C.

After over 1 year and i still get reaktions and see an improvment.

Got a 'good values' comment from my GP on my latest blod test.

Next step is to get help from rehabilition medecin with the neurological

parts, i need to find a slow enough way to improve and avoid getting

neurological/immun/endocrine reaktions/fluctations. I learned this from

http://www.vidarkliniken.se/ an anthroposophical clinic/hospital,

they have a broad perspectiv and treats the body rather

that the patogen(bacteria). They are MDs with a broader experince and

education in anthroposophical completary medecin.

They showed how to improve the body temp from cold to warm in just a week,

and also most important that a change can occur in 14 days not using

antibiotics but other completary meds.

I am also doing more than abx.

o resting and and do some execercis

o use magnetic field

o acupunctur

o antioxidant, e-vimin + selen, + folacin(B6)

o weekly b12 injection

My weigh is 93 kg.

Thats it.

Hope0073: How much Z are you taking each time?

/Per

hope0073 wrote:

> Penny recently posted that she feels low dose abx don't work. I agree

> with that up to a point. I think for some infections, especially

> acute and maybe even long term chronic, high dose is the way to go.

>

> That said, I want to state again on this list that with years of

> chronic infection, including Lyme and mycoplasma, I could not

> tolerate high dose abx. I have made much improvement on low doses of

> first doxy, then mino, alternated with tinidazole over the past 5

> years. I recently added Zithromax--every 10 days or so.

>

> Yes, mino and Z are part of the unmentionable protocol.

>

> I tried Benicar several times but could not tolerate it. Also, I did

> light avoidance for about a year and a half. I can't tell that it

> made any difference except that it was tough to do, both physically

> and psychologically.

>

> So bottom line, different things work for different folks.

>

> FWIW,

> Hope

--

Per Sjöholm

Stockholm, Sweden

[Guest guest]

Per:

I'm glad you are improving. I know you've had it pretty rough

over the last few years.

Barb

> > Penny recently posted that she feels low dose abx don't work. I

agree

> > with that up to a point. I think for some infections, especially

> > acute and maybe even long term chronic, high dose is the way to

go.

> >

> > That said, I want to state again on this list that with years of

> > chronic infection, including Lyme and mycoplasma, I could not

> > tolerate high dose abx. I have made much improvement on low doses

of

> > first doxy, then mino, alternated with tinidazole over the past 5

> > years. I recently added Zithromax--every 10 days or so.

> >

> > Yes, mino and Z are part of the unmentionable protocol.

> >

> > I tried Benicar several times but could not tolerate it. Also, I

did

> > light avoidance for about a year and a half. I can't tell that it

> > made any difference except that it was tough to do, both

physically

> > and psychologically.

> >

> > So bottom line, different things work for different folks.

> >

> > FWIW,

> > Hope

>

> --

> Per Sjöholm

> Stockholm, Sweden

>

[Guest guest]

Hope and all

There's lots of variables with antibiotic usage, I would get six

hours of fibro pain relief off an amoxacillin early in my ilness.The

thing that fluctuates is the basic genetic make up of the bugs

bothering you-if you have highly sensitive bugs lots of progress is

made by simple and low dose drug administration.I believe the

ability to just shut down the bacterial communication lines which

see's them harmonising to melt your body down will give you great

relief.There's so much to consider that people are really clutching

at straws if they think they can follow other people's

approaches.But the thing that is pretty much correct is that at the

end of the day a serious bone infection ain't going to go away with

the ability to switch harm on and off but take out the entire enemy

troops IMO.I think the pathology on the people's removed knee's and

hips in the major hospitals points to a sad state of bone erosion

and necrosis in these types of conditions.

>

> Penny recently posted that she feels low dose abx don't work. I

agree

> with that up to a point. I think for some infections, especially

> acute and maybe even long term chronic, high dose is the way to go.

>

> That said, I want to state again on this list that with years of

> chronic infection, including Lyme and mycoplasma, I could not

> tolerate high dose abx. I have made much improvement on low doses

of

> first doxy, then mino, alternated with tinidazole over the past 5

> years. I recently added Zithromax--every 10 days or so.

>

> Yes, mino and Z are part of the unmentionable protocol.

>

> I tried Benicar several times but could not tolerate it. Also, I

did

> light avoidance for about a year and a half. I can't tell that it

> made any difference except that it was tough to do, both

physically

> and psychologically.

>

> So bottom line, different things work for different folks.

>

> FWIW,

> Hope

>

[Guest guest]

Per

You need to loose 5 or 6 kilo's to get another improvement with your

already smart regime IMO.

tony

> > Penny recently posted that she feels low dose abx don't work. I

agree

> > with that up to a point. I think for some infections, especially

> > acute and maybe even long term chronic, high dose is the way to

go.

> >

> > That said, I want to state again on this list that with years of

> > chronic infection, including Lyme and mycoplasma, I could not

> > tolerate high dose abx. I have made much improvement on low

doses of

> > first doxy, then mino, alternated with tinidazole over the past

5

> > years. I recently added Zithromax--every 10 days or so.

> >

> > Yes, mino and Z are part of the unmentionable protocol.

> >

> > I tried Benicar several times but could not tolerate it. Also, I

did

> > light avoidance for about a year and a half. I can't tell that

it

> > made any difference except that it was tough to do, both

physically

> > and psychologically.

> >

> > So bottom line, different things work for different folks.

> >

> > FWIW,

> > Hope

>

> --

> Per Sjöholm

> Stockholm, Sweden

>

[Guest guest]

Thanks tony,

I'm losing 95+ before x-mas 92-93kg today.

One concern is not to lose to much too quickly and my goal is

85-87 kg as I'm 187 cm.

If I behave well, I'm good,

But the boundery to between misary - good is narrow and is getting

wider.

Travling for 30 min in a bad cab is enough to get my sensory system

to go berserk or being without dark glases or .......

I year ago I couln't travel without being ill for a week.

Today I can unless it's a bad driver or bad car.

Here is how I function when my body do or get to much.

First a little pain or other indication

The adrenal and/or cortisol system kicks in and i don't feel anything

my system starts working in overtime, i get over energetic.

(If continue what I'm doing here I will get bedridden.)

after 3-6 hours resting the pain and neurlogical symptoms is dominant

Cirkulation is reduced in body, i frezze

Immunsystem starts, Ig reaktions, flue like symptoms for 1-3 hours

Cirkulation is starting again, a feeling of warmness and relaxed body.

This is a lot of strain/stress and requires fuel and oxygen.

Other type of reaction is starting in the Immunsystem and then follows the

neurological symptoms. I suspect that this is when immunsystem find

something to work with like a patogen.

A year ago I couldn't keep these to scenarios apart. They triggered

each other and continued. Today resting and use of codein+ magnetic field

helps.

Strangly comming to vidarkliniken was like comming to a place build specialy

for people like me. And there were people there with other chronic diagnoses,

strangley we seemed to have the same problems.

No direct ligth, calm colours, quite, no strong smells,

being taken care of, no tv or radion but a fireplace.

And got warm feet and hands in a week, reduced tension in back=less pain

I went to jazz concert during my stay and

in the first half i didn't know how to get home.

Sound, vision, balance, pain, stiff legs it's was horrible and the long reverb

in the hall made it worse for me as I got the impressions several times with a

delay.

I toke a citodon(paracetamol+codein) and second part was very good

the different instrument and singer 'resolved' and i

could distinguish them from each other.

No problem walking to my room 500 meters away.

No immunsystem reaktion.

My body seam to need a lot of food at regular times.

If i eat to little or wrong it affects me

my vision gets blured, i start tremor(parkingsson ligth ).....

We have started an TBE and Borrelia patient group.

To get a better focus on how disabiliting this conditions are.

And we will change how borrelia is treated.(or at least try)

I am also interssested to start discussion on rehabilition medicin

or what follows after (14 days of doxy) or when the soo called

Infektion Specialist is declared he/she is finished with treatment.

What would happend if an other MD continue treatment, for post-xxxx symptom

what ever and uses abx in combination with other things?

How do I handled dentist visits if I'm sound-sensitive.

How do i manage shoping in malls with having a vision sensory impairment.

I don't have bad vison its better than 20/20,

I can't handle the information flow that is caused by

modern shoping malls/stored.

/Per

dumbaussie2000 wrote:

> Per

> You need to loose 5 or 6 kilo's to get another improvement with your

> already smart regime IMO.

> tony

>

>

>

>

>

>>Low dose ABX works for me too, I'm slowly constantly improving.

>>On high doses I improve fast and relapse within months.

>>

>>My offical diagnos is suspected neroborriliose

>>with migrating pain in neck and back, it got my temporary 100%

>>disability approved for 3 years.

>>

....... cut ......

--

Per Sjöholm

Stockholm, Sweden

[Guest guest]

Per

It's good to see that you have the whole picture of all your own

bells and whistle problems. I personally think you need to find an

off switch to your pathogens- when they fire- it seems the

paracetamol is doing some of that if you can find an environment and

a couple of other drugs that continue to do this- whamo your on your

way.I feel the reducing body weight will help dramatically the

thickening blood issue you describe- we are what we eat and in our

case magnified many times by major changes in our blood

> >

> >>Low dose ABX works for me too, I'm slowly constantly improving.

> >>On high doses I improve fast and relapse within months.

> >>

> >>My offical diagnos is suspected neroborriliose

> >>with migrating pain in neck and back, it got my temporary 100%

> >>disability approved for 3 years.

> >>

> ...... cut ......

> --

> Per Sjöholm

> Stockholm, Sweden

>

[Guest guest]

Recup would be a strong addition to your protocol IMO to push you

closer ?

>

>

> > Yes, mino and Z are part of the unmentionable protocol.

>

> Tini and zith are also part of the Vanderbilt protocol (see

> cpnhelp.org) and mino is pretty close.

>

> I'm curious what your tini doses and other doses are? I know it

can

> take many paragraphs to explain changes in time over a multi-year

> regime... I'm just interested in the rough outline.

>

> I did 2 months of doxy 300 / ceftin 1000, then 4 months of

mepron /

> zith / artemisinin, then a month of doxy 400 / zith / tini 2000,

then

> many months of doxy 400 / tini 2000. All doses are daily totals

(not

> necessarily taken all at once) in milligrams.

>

> I'm male, 25 years old, 60 kg, started abx a few months after

complete

> development of slow-onset CFS, and am currently plateaued (for 5

> months now) at 95% improved from severe CFS.

>

[Guest guest]

Tony, are you talking about Recuperation, the Blasi electrolyte

mixture?

I just ordered some.

penny

> >

> >

> > > Yes, mino and Z are part of the unmentionable protocol.

> >

> > Tini and zith are also part of the Vanderbilt protocol (see

> > cpnhelp.org) and mino is pretty close.

> >

> > I'm curious what your tini doses and other doses are? I know it

> can

> > take many paragraphs to explain changes in time over a multi-

year

> > regime... I'm just interested in the rough outline.

> >

> > I did 2 months of doxy 300 / ceftin 1000, then 4 months of

> mepron /

> > zith / artemisinin, then a month of doxy 400 / zith / tini 2000,

> then

> > many months of doxy 400 / tini 2000. All doses are daily totals

> (not

> > necessarily taken all at once) in milligrams.

> >

> > I'm male, 25 years old, 60 kg, started abx a few months after

> complete

> > development of slow-onset CFS, and am currently plateaued (for 5

> > months now) at 95% improved from severe CFS.

> >

>

[Guest guest]

I believe in making people understand that they are responsible

for there lifes. If they need help they need to understand how they

work to be able to communicate to others and explain what is happening.

By sharing information and experince we PWC can enhance our knowledge.

Here is some of my experince, its based on what I have learned from

other people with longer illness and I have confirmed by reading

medical books and articals as well using it to change and get an

improvment for myself. It's a slow work and the knowledge in

medical professions exists but no existing trail to follow exists.

Tony, barb, and others

I use Q10 together in my abx regime, I have a 6 pack of Z(250mg).

When starting with Q10 I did notice a reaktion.

How does Q10(in olivoil) influense tetracycline, where can I find more info ?

Any ideas on how to use Z in a good way, 1/8 or 1/4 per 10 days ?.

I want a reaktion and I want it managable NO runaway inflammation.

I'm not asking for an advice only some educated diskution on dosing levels.

It's Ok to email me, if you find that giving this information maybe sensitive.

I have MDs behind me that take care that I'm safe.

You can target the immunsystem via neurlogical means.

paracetamol is not doing much, citodon is 500mg paracetamol + 30 mg codein.

codein= (5R,6S)-4,5-Epoxi-3-metoxi-17-metyl-7-morfinen-6-ol

It's made into morfin. I belive can explain this.

I have 1000mg paracetamol and taking them doesn't do a thing.

Using only codein 25mg also partly work.

Its' not paracetamol it's codein that calms the Controll system and 2 experts

confirm that possiblity, a neuro ophthalmologist + neuro/rehab-medicin

Pain is not only an experience pain it is also a

neurological, immun and neuroendokrine reaktion(Copies from Medical text book.)

Even if you don't feel pain you still get the reakations.

Inflammation and pain is very alike.

If 1,25D is produced locally, inflammation-> pain -> may affect

whole body it's not just locally.

Several hypothesis can be made that may help us to get better.

I suspect most PWC has some neurolical involment as they have

inflammation/pain. It can be subclinical, for me a bystander can

actually notice how my way of walking is changing depending on

external stimuli. Normally I walk without any signs.

Getting to much ligth or rather to much sensory input has an

affect on the immunsystem.

Its like poking in a higly inflammed area, it gets worse.

You don't need to be aware that ligth or clothes or

strong smells(sensory inputs) affect you. If it does and you maybe

notice it by having a headaache or by

feeling uncomfortable subconsius avoiding doing stuff.

When people starts getting tired for a 'little sensory input' or

when they don't understand why they are tired there is a problem.

Finding sensory input and getting knowledge how they affect you is

easy once you know it. Avoiding or minimizing can be be difficult.

Example:

During my stay in vidar clinic I was giving treatments,

very ligth/easy ones and they made me sleep for several hours.

The massage was like holding and feeling the rythmen of muscle at

a certain spot on my left foot I got pain in head top left side above

the ear the same area that where my left eye is red.

This resulted in a 3 hour sleep and use of citodon.

What is the result on my system from clothes and shoes when I'm walking?

/Per

dumbaussie2000 wrote:

> Per

> It's good to see that you have the whole picture of all your own

> bells and whistle problems. I personally think you need to find an

> off switch to your pathogens- when they fire- it seems the

> paracetamol is doing some of that if you can find an environment and

> a couple of other drugs that continue to do this- whamo your on your

> way.I feel the reducing body weight will help dramatically the

> thickening blood issue you describe- we are what we eat and in our

> case magnified many times by major changes in our blood

>

>

>

>

>>>

>>>

>>>>Low dose ABX works for me too, I'm slowly constantly improving.

>>>>On high doses I improve fast and relapse within months.

>>>>

>>>>My offical diagnos is suspected neroborriliose

>>>>with migrating pain in neck and back, it got my temporary 100%

>>>>disability approved for 3 years.

>>>>

>>

>>...... cut ......

>>--

>>Per Sjöholm

>>Stockholm, Sweden

>>

>

>

>

>

>

>

>

>

>

>

[Guest guest]

>

> > I tried Benicar several times but could not tolerate it. Also, I

did

> light avoidance for about a year and a half. I can't tell that it

> made any difference except that it was tough to do, both physically

> and psychologically.

>

> So bottom line, different things work for different folks.

>

> FWIW,

> Hope

Hi Hope

Its the likely psychological effect on our brains of the light

avoidance thing that has always bothered me about the protocol. I

live near the sea and cannot think of anything worse than being shut

away from the sun and light for me it would lead to deep depression.

Also I always feel better for being out in the fresh air and my immune

system is stronger in the summer than it ever is in the winter months.

BW

Pam