Re: biofilm/FL1953/coagulation

[Guest guest]

Good Morning Deepak,

 

I got tested last February for FL1953 and tested positive for the protozoa and

biofilm.  Fry Labs adds a dye to your blood that illuminates the protozoa and

makes the biofilm show up like blue clouds under the microscope.  Fry

Laboratories in sdale, Arizona is the only lab that does this live

blood test.   

 

Based on the test results and my symptoms and history, Dr. Fry put me on a diet,

Lumbrokinaise to break down the biofilm, and malarone (a malaria prescription)

to knock down the FL1953 protozoa.  Since magnesium and calcium form part of

biofilm structure, he had me stop my magnesium supplements and all dairy.  And

since the protozoa feeds on fat, I'm on a lowfat diet, under 15 grams of

fat/day, to starve the bug.

 

I've had CFS for 28 years and have been on this treatment for 7 months.  People

who have had CFS for a short time period, typically need less treatment to see

results.  My head symptoms have decreased and cognitive function is much easier

and clearer.  Big difference there.  The key is unclogging the blood vessels

so there is unobstructed bloodflow again. 

 

I do not take anticoagulants.  Since I have a protozoa that creates biofilm

and the biofilm is what is clogging my blood vessels, I'm taking lumbrokinaise

to break down biofilm.  Other than the biofilm and FL1953, the rest of my blood

was clear...clean.   That's the importance I think, of finding out what

specifically is going on with your blood so you can address it specifically. 

The cause of your blood issues and mine could be the same or different. 

 

Kay   

________________________________

From: Deepak L <deepak0625@...>

Sent: Sunday, January 1, 2012 10:07 PM

Subject: Re: New from India. Want to know about

hypercoagulation.

 

Hi Kay,

Thanks for the info. Did you test for FL1953 ? I am not sure if we have

this testing here in India.

Did anything help you for the head sensations and are you taking any

anticoagulants ??

Regards,

Deepak

On Sun, Jan 1, 2012 at 10:47 PM, Kay Siegrist <ksiegr@...> wrote:

> **

>

>

> Hi Deepak,

>

> You may want to google FL1953, recently named protomyxozoa to familiarize

> yourself with this possibility as the cause of your coagulation. It is a

> malaria-like protozoan spread by mosquito, tick, and flea bites. Dr.

> Fry, founder of Fry Laboratories, discovered it. It hides in

> biofilm in blood vessels.

>

> Dr. Fry and Berg were among the small group considered biofilm and

> coagulation experts who shared information at last year's Washington DC

> biofilm and coagulation conference. Dr. Fry considers CFS to be a vascular

> disease of blood vessels clogged with biofilm including those that carry

> blood from the head to the heart.

>

> Like you, I have experienced head aches and unusual uncomfortable head

> sensations and symptoms since my CFS onset that could be due to clogged

> blood vessels impeding blood flow.

>

> All the best to you,

> Kay

>

>

> ________________________________

>

>

>

> You need ot figure out what is triggering the hypercoagulation and

> address that issue. If you can't do that then the natto is just

> giving symptom relief. But, so far that's the best I can manage. I

> need oral surgery but don't have dental insurance.

>

> Warmest regards,

> Kendra

>

> On 1/1/12, Deepak L <deepak0625@...> wrote:

> > Thank you Kendra. I appreciate your help:) God bless.

> >

> >

> > I got a standard coagulation profile done here yesterday and these are

> the

> > results.

> >

> >

> > *Fibrinogen, Plasma 342 ( Ref range 200-400 )

> >

> > aPTT 27.70 ( Ref range 30-40 seconds) *

> >

> > Prothrombin time 13 ( Ref range 11-16 seconds)

> >

> > PT INT value 1 ( Standard therapy INR 2-3 )

> >

> >

> > Dr has some interesting things to say about Fibrinogen and aPTT.

> >

> > " Most laboratories report a normal range for Fibrinogen of 200-400 or

> > higher. The real range should be 200-300. Ours goes up to 315mg/dl. Most

> > labs don't want to deal with minor elevations in results, so they

> increase

> > the acceptable range a little. That is why patients with activated coag

> > systems have minor fibrinogen elevations which are very significant to us

> > but not to the physicians who routinely see higher normal ranges. "

> >

> > " Standard coagulation workup " would NOT show any abnormalities unless the

> > aPTT was BELOW the normal range, which indicates a hypercoag condition,

> but

> > docs are not taught this information. The ISAC panel is like 10 - 20

> times

> > as sensitive as the standard screening tests. "

> >

> > Seems I might have this hypercoagulation problem

> >

> > Would you say Dr Goldberg is amongst the best in this area of treatment.

> I

> > am eager then to maybe visit him in USA and cure myself.

> >

> > I want to start Nattokinase right away. Which is the best brand to buy ?

> > And what would be a good dosage and also, do I need to take any

> precautions

> > while on it?

> >

> > God bless all.

> >

> > Deepak.

> >

> >

> > On Sat, Dec 31, 2011 at 10:09 AM, Kendra <KCuyler@...> wrote:

> >

> >> **

> >>

> >>

> >> The ISAC hypercoagulation panel is only run by one lab in the USA -

> >> Esoterix (they are a subsidiary of Labcorp). The panel has specific

> >> requirements including 1 tube of blood must arrive fresh (not frozen)

> >> w/in 24 hours.

> >>

> >> I was dx'd w/hpercoagulation in 2006 when Berg was still

> >> processing the test @ Hemex. Do a Google search for * Berg Hemex

> >> hypercoagulation* and you willl find some good articles.

> >>

> >> If I were you I would just start taking Nattokinase. I take 2,000 FU

> >> 3 times a day - Doctor's Best brand from iherb.com. It only costs

> >> about $15 a month.

> >>

> >> Kendra

> >>

> >>

> >> On 12/29/11, Deepak <deepak0625@...> wrote:

> >> > Hello to all,

> >> >

> >> > Just joined this group.

> >> >

> >> > I am 40 years old male in India and since this year have been having

> >> most of

> >> > the symptoms of fibromyalgia and cfs. All tests come normal and

> doctors

> >> > think I am some crazy person, which is extremely frustrating.

> >> >

> >> > I have been reading some posts on hyper coagulation and I feel I may

> be

> >> > having this problem as my fingers feel swollen and if i press them a

> bit

> >> the

> >> > blood seems to be moving slower than it used to. Last week my finger

> >> > suddenly developed a cut and started to bleed even though I dont

> >> > remember

> >> > having had any injury ( only reason I could come up with is the cold

> >> weather

> >> > ) Also, if I lie down for a while with head pressed - the side its

> >> pressed

> >> > feels all cold. So I am guessing its some circulation problem. Also I

> >> > get

> >> > these poky, wiry feeling in my fingers and weird sensations in my

> scalp

> >> like

> >> > crawly, wiry, scratch, " pull " , etc.

> >> >

> >> > Could I please get some advise on what are tests I can do here to

> figure

> >> out

> >> > if I indeed have hypercoagulation. Somehow I intuitively feel I do but

> >> > dont know what to do. My ESR rate is 8, in case that helps.

> >> >

> >> > Can I just start taking Nattokinase and see how I feel with it ? Where

> >> can

> >> > I order it from ?

> >> >

> >> > God Bless us all.

> >> >

> >> > With love,

> >> > Deepak

> >> >

> >> >

> >> >

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

> >>

> >> >

> >> > 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]

Are you being treated by a local doctor? Can you give a short history of your

illness and what you have done to this point in the way of testing and

treatment. Thanks

From: Kay Siegrist <ksiegr@...>

" " < >

Sent: Monday, January 2, 2012 9:00 AM

Subject: Re: biofilm/FL1953/coagulation

Good Morning Deepak,

 

I got tested last February for FL1953 and tested positive for the protozoa and

biofilm.  Fry Labs adds a dye to your blood that illuminates the protozoa and

makes the biofilm show up like blue clouds under the microscope.  Fry

Laboratories in sdale, Arizona is the only lab that does this live

blood test.   

 

Based on the test results and my symptoms and history, Dr. Fry put me on a diet,

Lumbrokinaise to break down the biofilm, and malarone (a malaria prescription)

to knock down the FL1953 protozoa.  Since magnesium and calcium form part of

biofilm structure, he had me stop my magnesium supplements and all dairy.  And

since the protozoa feeds on fat, I'm on a lowfat diet, under 15 grams of

fat/day, to starve the bug.

 

I've had CFS for 28 years and have been on this treatment for 7 months.  People

who have had CFS for a short time period, typically need less treatment to see

results.  My head symptoms have decreased and cognitive function is much easier

and clearer.  Big difference there.  The key is unclogging the blood vessels so

there is unobstructed bloodflow again. 

 

I do not take anticoagulants.  Since I have a protozoa that creates biofilm and

the biofilm is what is clogging my blood vessels, I'm taking lumbrokinaise to

break down biofilm.  Other than the biofilm and FL1953, the rest of my blood was

clear...clean.   That's the importance I think, of finding out what specifically

is going on with your blood so you can address it specifically.  The cause of

your blood issues and mine could be the same or different. 

 

Kay   

________________________________

From: Deepak L <deepak0625@...>

Sent: Sunday, January 1, 2012 10:07 PM

Subject: Re: New from India. Want to know about

hypercoagulation.

  

Hi Kay,

Thanks for the info.  Did you test for FL1953 ?  I am not sure if we have

this testing here in India.

Did anything help you for the head sensations and are you taking any

anticoagulants ??

Regards,

Deepak

On Sun, Jan 1, 2012 at 10:47 PM, Kay Siegrist <ksiegr@...> wrote:

> **

>

>

> Hi Deepak,

>

> You may want to google FL1953, recently named protomyxozoa to familiarize

> yourself with this possibility as the cause of your coagulation.  It is a

> malaria-like protozoan spread by mosquito, tick, and flea bites.  Dr.

> Fry, founder of Fry Laboratories, discovered it.  It hides in

> biofilm in blood vessels.

>

> Dr. Fry and Berg were among the small group considered biofilm and

> coagulation experts who shared information at last year's Washington DC

> biofilm and coagulation conference.  Dr. Fry considers CFS to be a vascular

> disease of blood vessels clogged with biofilm including those that carry

> blood from the head to the heart.

>

> Like you, I have experienced head aches and unusual uncomfortable head

> sensations and symptoms since my CFS onset that could be due to clogged

> blood vessels impeding blood flow.

>

> All the best to you,

> Kay

>

>

> ________________________________

>

>

>

> You need ot figure out what is triggering the hypercoagulation and

> address that issue. If you can't do that then the natto is just

> giving symptom relief. But, so far that's the best I can manage. I

> need oral surgery but don't have dental insurance.

>

> Warmest regards,

> Kendra

>

> On 1/1/12, Deepak L <deepak0625@...> wrote:

> > Thank you Kendra. I appreciate your help:) God bless.

> >

> >

> > I got a standard coagulation profile done here yesterday and these are

> the

> > results.

> >

> >

> > *Fibrinogen, Plasma 342 ( Ref range 200-400 )

> >

> > aPTT 27.70 ( Ref range 30-40 seconds) *

> >

> > Prothrombin time 13 ( Ref range 11-16 seconds)

> >

> > PT INT value 1 ( Standard therapy INR 2-3 )

> >

> >

> > Dr has some interesting things to say about Fibrinogen and aPTT.

> >

> > " Most laboratories report a normal range for Fibrinogen of 200-400 or

> > higher. The real range should be 200-300. Ours goes up to 315mg/dl. Most

> > labs don't want to deal with minor elevations in results, so they

> increase

> > the acceptable range a little. That is why patients with activated coag

> > systems have minor fibrinogen elevations which are very significant to us

> > but not to the physicians who routinely see higher normal ranges. "

> >

> > " Standard coagulation workup " would NOT show any abnormalities unless the

> > aPTT was BELOW the normal range, which indicates a hypercoag condition,

> but

> > docs are not taught this information. The ISAC panel is like 10 - 20

> times

> > as sensitive as the standard screening tests. "

> >

> > Seems I might have this hypercoagulation problem

> >

> > Would you say Dr Goldberg is amongst the best in this area of treatment.

> I

> > am eager then to maybe visit him in USA and cure myself.

> >

> > I want to start Nattokinase right away. Which is the best brand to buy ?

> > And what would be a good dosage and also, do I need to take any

> precautions

> > while on it?

> >

> > God bless all.

> >

> > Deepak.

> >

> >

> > On Sat, Dec 31, 2011 at 10:09 AM, Kendra <KCuyler@...> wrote:

> >

> >> **

> >>

> >>

> >> The ISAC hypercoagulation panel is only run by one lab in the USA -

> >> Esoterix (they are a subsidiary of Labcorp). The panel has specific

> >> requirements including 1 tube of blood must arrive fresh (not frozen)

> >> w/in 24 hours.

> >>

> >> I was dx'd w/hpercoagulation in 2006 when Berg was still

> >> processing the test @ Hemex. Do a Google search for * Berg Hemex

> >> hypercoagulation* and you willl find some good articles.

> >>

> >> If I were you I would just start taking Nattokinase. I take 2,000 FU

> >> 3 times a day - Doctor's Best brand from iherb.com. It only costs

> >> about $15 a month.

> >>

> >> Kendra

> >>

> >>

> >> On 12/29/11, Deepak <deepak0625@...> wrote:

> >> > Hello to all,

> >> >

> >> > Just joined this group.

> >> >

> >> > I am 40 years old male in India and since this year have been having

> >> most of

> >> > the symptoms of fibromyalgia and cfs. All tests come normal and

> doctors

> >> > think I am some crazy person, which is extremely frustrating.

> >> >

> >> > I have been reading some posts on hyper coagulation and I feel I may

> be

> >> > having this problem as my fingers feel swollen and if i press them a

> bit

> >> the

> >> > blood seems to be moving slower than it used to. Last week my finger

> >> > suddenly developed a cut and started to bleed even though I dont

> >> > remember

> >> > having had any injury ( only reason I could come up with is the cold

> >> weather

> >> > ) Also, if I lie down for a while with head pressed - the side its

> >> pressed

> >> > feels all cold. So I am guessing its some circulation problem. Also I

> >> > get

> >> > these poky, wiry feeling in my fingers and weird sensations in my

> scalp

> >> like

> >> > crawly, wiry, scratch, " pull " , etc.

> >> >

> >> > Could I please get some advise on what are tests I can do here to

> figure

> >> out

> >> > if I indeed have hypercoagulation. Somehow I intuitively feel I do but

> >> > dont know what to do. My ESR rate is 8, in case that helps.

> >> >

> >> > Can I just start taking Nattokinase and see how I feel with it ? Where

> >> can

> >> > I order it from ?

> >> >

> >> > God Bless us all.

> >> >

> >> > With love,

> >> > Deepak

> >> >

> >> >

> >> >

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

> >>

> >> >

> >> > 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]

Hi Al,

I have shown many local doctors here, some of them the best in India.

But here the awareness of Fibro/CFS is almost non existent !! ( All

they say is - oh this is anxiety and prescribe some anti anxiety medicine

but I know its not just anxiety !!!!

All my regular blood work and organ function tests come normal.

Around a year back in a regular CBC blood test my esonophil count was very

high at 30 and WBC were elevated at 13000. I did not pay much attention to

it as I felt absolutely fine and had zero complaints. Then about 7 months

later when I got another CBC done and the levels were elevated still. Then

I went to the doctor. The doctor said this happens due to something called

tropical esonophilia caused by some spirochete and prescribed me a 3 month

course of Hetrazan ( Diethylcarbamazine which is an anthelmentic drug used

to treat parasites and filarial diseases ). After the course my esonophils

and WBC both came within the normal range and have stayed that way since.

Around the second month into this hetrazan course, I started getting

tightness in the chest and sometimes breathing hunger. Did my heart tests

and lung function - normal. Then twitching started happening

ocassionally in different areas ( but this twitching thing does not happen

anymore). This was followed by body tightness, muscle tightness, neck

shoulder tightness, headaches, dizziness, fatigue, brain fog, energy

crashing, malaise, blurry vision sometimes. Also get itchy and poky esp in

my palms and trunk and scalp. - also sometimes a sensation of pressure in

the scalp and crawly feelings.

I took Vitamin D3 shots as my level was only 5 and now take vitamin B12

1500 mg tablets daily. Since 2 weeks I have also started a serotonin

reuptake enhancer called Stablon. That surely seems to help in my fatigue

and brain fog to some extent.

I have taken chiropractic treatment and acupuncture. Both do help but

temporarily. The chiro said I have cervical spondylosis and he treated me

for that but that cannot explain these varied other symptoms imo.

As of present am on no particular treatment. My interest got raised in

the hypercoagulation theory as somehow, intuitively, I feel that the blood

is thicker/sluggish. When I lie down with head on one side for a while ,

when I get up that area of the head feels cold , or when I press my palms

on a table the pressed part becomes much more red than it used to.

I got a standard coagulation panel done here and my results are as under

Fibrinogen, Plasma 342 ( Ref range 200-400 )

aPTT 27.70 ( Ref range 30-40 seconds)

Prothrombin time 13 ( Ref range 11-16 seconds)

PT INT value 1 ( Standard therapy INR 2-3 )

In an article I read by Dr Goldberg he says Fibrinogen levels above 300

should be considered elevated and that if aPTT levels are low in a standard

coagulation profile it points to thicker blood.

I have today ordered Nattokinase and Magnesium tablets online as both are

unavailable in India.

If I can get any guidance on what is the next step I should take I would be

so grateful. Who is the best doctor in USA to get this treated by. I am

willing to go to USA and get treated.

Am also trying to study about Transfer factors. Also looking into

Hyperbaric Oxygen Therapy - would that kill viruses /bacteria ?

Thank you for all the support. God bless us all.

Lots of love,

Deepak

On Mon, Jan 2, 2012 at 9:31 PM, Al Bellenfant <albellenfant@...>wrote:

> **

>

>

> Are you being treated by a local doctor? Can you give a short history of

> your illness and what you have done to this point in the way of testing and

> treatment. Thanks

>

> From: Kay Siegrist <ksiegr@...>

> " " < >

>

> Sent: Monday, January 2, 2012 9:00 AM

> Subject: Re: biofilm/FL1953/coagulation

>

>

> Good Morning Deepak,

>

> I got tested last February for FL1953 and tested positive for the protozoa

> and biofilm. Fry Labs adds a dye to your blood that illuminates the

> protozoa and makes the biofilm show up like blue clouds under the

> microscope. Fry Laboratories in sdale, Arizona is the only lab that

> does this live blood test.

>

> Based on the test results and my symptoms and history, Dr. Fry put me on a

> diet, Lumbrokinaise to break down the biofilm, and malarone (a malaria

> prescription) to knock down the FL1953 protozoa. Since magnesium and

> calcium form part of biofilm structure, he had me stop my magnesium

> supplements and all dairy. And since the protozoa feeds on fat, I'm on a

> lowfat diet, under 15 grams of fat/day, to starve the bug.

>

> I've had CFS for 28 years and have been on this treatment for 7 months.

> People who have had CFS for a short time period, typically need less

> treatment to see results. My head symptoms have decreased and cognitive

> function is much easier and clearer. Big difference there. The key is

> unclogging the blood vessels so there is unobstructed bloodflow again.

>

> I do not take anticoagulants. Since I have a protozoa that creates

> biofilm and the biofilm is what is clogging my blood vessels, I'm taking

> lumbrokinaise to break down biofilm. Other than the biofilm and FL1953,

> the rest of my blood was clear...clean. That's the importance I think, of

> finding out what specifically is going on with your blood so you can

> address it specifically. The cause of your blood issues and mine could be

> the same or different.

>

> Kay

>

> ________________________________

> From: Deepak L <deepak0625@...>

>

> Sent: Sunday, January 1, 2012 10:07 PM

> Subject: Re: New from India. Want to know about

> hypercoagulation.

>

>

>

> Hi Kay,

>

> Thanks for the info. Did you test for FL1953 ? I am not sure if we have

> this testing here in India.

>

> Did anything help you for the head sensations and are you taking any

> anticoagulants ??

>

> Regards,

> Deepak

>

> On Sun, Jan 1, 2012 at 10:47 PM, Kay Siegrist <ksiegr@...> wrote:

>

> > **

> >

> >

> > Hi Deepak,

> >

> > You may want to google FL1953, recently named protomyxozoa to familiarize

> > yourself with this possibility as the cause of your coagulation. It is a

> > malaria-like protozoan spread by mosquito, tick, and flea bites. Dr.

> > Fry, founder of Fry Laboratories, discovered it. It hides in

> > biofilm in blood vessels.

> >

> > Dr. Fry and Berg were among the small group considered biofilm and

> > coagulation experts who shared information at last year's Washington DC

> > biofilm and coagulation conference. Dr. Fry considers CFS to be a

> vascular

> > disease of blood vessels clogged with biofilm including those that carry

> > blood from the head to the heart.

> >

> > Like you, I have experienced head aches and unusual uncomfortable head

> > sensations and symptoms since my CFS onset that could be due to clogged

> > blood vessels impeding blood flow.

> >

> > All the best to you,

> > Kay

> >

> >

> > ________________________________

> >

> >

> >

> > You need ot figure out what is triggering the hypercoagulation and

> > address that issue. If you can't do that then the natto is just

> > giving symptom relief. But, so far that's the best I can manage. I

> > need oral surgery but don't have dental insurance.

> >

> > Warmest regards,

> > Kendra

> >

> > On 1/1/12, Deepak L <deepak0625@...> wrote:

> > > Thank you Kendra. I appreciate your help:) God bless.

> > >

> > >

> > > I got a standard coagulation profile done here yesterday and these are

> > the

> > > results.

> > >

> > >

> > > *Fibrinogen, Plasma 342 ( Ref range 200-400 )

> > >

> > > aPTT 27.70 ( Ref range 30-40 seconds) *

> > >

> > > Prothrombin time 13 ( Ref range 11-16 seconds)

> > >

> > > PT INT value 1 ( Standard therapy INR 2-3 )

> > >

> > >

> > > Dr has some interesting things to say about Fibrinogen and aPTT.

> > >

> > > " Most laboratories report a normal range for Fibrinogen of 200-400 or

> > > higher. The real range should be 200-300. Ours goes up to 315mg/dl.

> Most

> > > labs don't want to deal with minor elevations in results, so they

> > increase

> > > the acceptable range a little. That is why patients with activated coag

> > > systems have minor fibrinogen elevations which are very significant to

> us

> > > but not to the physicians who routinely see higher normal ranges. "

> > >

> > > " Standard coagulation workup " would NOT show any abnormalities unless

> the

> > > aPTT was BELOW the normal range, which indicates a hypercoag condition,

> > but

> > > docs are not taught this information. The ISAC panel is like 10 - 20

> > times

> > > as sensitive as the standard screening tests. "

> > >

> > > Seems I might have this hypercoagulation problem

> > >

> > > Would you say Dr Goldberg is amongst the best in this area of

> treatment.

> > I

> > > am eager then to maybe visit him in USA and cure myself.

> > >

> > > I want to start Nattokinase right away. Which is the best brand to buy

> ?

> > > And what would be a good dosage and also, do I need to take any

> > precautions

> > > while on it?

> > >

> > > God bless all.

> > >

> > > Deepak.

> > >

> > >

> > > On Sat, Dec 31, 2011 at 10:09 AM, Kendra <KCuyler@...> wrote:

> > >

> > >> **

> > >>

> > >>

> > >> The ISAC hypercoagulation panel is only run by one lab in the USA -

> > >> Esoterix (they are a subsidiary of Labcorp). The panel has specific

> > >> requirements including 1 tube of blood must arrive fresh (not frozen)

> > >> w/in 24 hours.

> > >>

> > >> I was dx'd w/hpercoagulation in 2006 when Berg was still

> > >> processing the test @ Hemex. Do a Google search for * Berg Hemex

> > >> hypercoagulation* and you willl find some good articles.

> > >>

> > >> If I were you I would just start taking Nattokinase. I take 2,000 FU

> > >> 3 times a day - Doctor's Best brand from iherb.com. It only costs

> > >> about $15 a month.

> > >>

> > >> Kendra

> > >>

> > >>

> > >> On 12/29/11, Deepak <deepak0625@...> wrote:

> > >> > Hello to all,

> > >> >

> > >> > Just joined this group.

> > >> >

> > >> > I am 40 years old male in India and since this year have been having

> > >> most of

> > >> > the symptoms of fibromyalgia and cfs. All tests come normal and

> > doctors

> > >> > think I am some crazy person, which is extremely frustrating.

> > >> >

> > >> > I have been reading some posts on hyper coagulation and I feel I may

> > be

> > >> > having this problem as my fingers feel swollen and if i press them a

> > bit

> > >> the

> > >> > blood seems to be moving slower than it used to. Last week my finger

> > >> > suddenly developed a cut and started to bleed even though I dont

> > >> > remember

> > >> > having had any injury ( only reason I could come up with is the cold

> > >> weather

> > >> > ) Also, if I lie down for a while with head pressed - the side its

> > >> pressed

> > >> > feels all cold. So I am guessing its some circulation problem. Also

> I

> > >> > get

> > >> > these poky, wiry feeling in my fingers and weird sensations in my

> > scalp

> > >> like

> > >> > crawly, wiry, scratch, " pull " , etc.

> > >> >

> > >> > Could I please get some advise on what are tests I can do here to

> > figure

> > >> out

> > >> > if I indeed have hypercoagulation. Somehow I intuitively feel I do

> but

> > >> > dont know what to do. My ESR rate is 8, in case that helps.

> > >> >

> > >> > Can I just start taking Nattokinase and see how I feel with it ?

> Where

> > >> can

> > >> > I order it from ?

> > >> >

> > >> > God Bless us all.

> > >> >

> > >> > With love,

> > >> > Deepak

> > >> >

> > >> >

> > >> >

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

> > >>

> > >> >

> > >> > 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]

Hi Al,

 

I'm being treated by Dr. Fry himself.  Luckily for me, his office and Fry

Laboratories are about a 2 hour drive from me in Arizona.

 

As I'm sure you can imagine, my list of tests and treatments over the last 28

years of having CFS is long.  My onset was sudden and I was sick for years

before getting a CFS diagnosis at Mayo Clinic in 1993.

 

Could you narrow your question for me?  Is there something more specific I can

try to answer for you?

 

Kay

________________________________

From: Al Bellenfant <albellenfant@...>

" " < >

Sent: Monday, January 2, 2012 9:01 AM

Subject: Re: biofilm/FL1953/coagulation

 

Are you being treated by a local doctor? Can you give a short history of your

illness and what you have done to this point in the way of testing and

treatment. Thanks

From: Kay Siegrist <ksiegr@...>

" " < >

Sent: Monday, January 2, 2012 9:00 AM

Subject: Re: biofilm/FL1953/coagulation

Good Morning Deepak,

 

I got tested last February for FL1953 and tested positive for the protozoa and

biofilm.  Fry Labs adds a dye to your blood that illuminates the protozoa and

makes the biofilm show up like blue clouds under the microscope.  Fry

Laboratories in sdale, Arizona is the only lab that does this live

blood test.   

 

Based on the test results and my symptoms and history, Dr. Fry put me on a diet,

Lumbrokinaise to break down the biofilm, and malarone (a malaria prescription)

to knock down the FL1953 protozoa.  Since magnesium and calcium form part of

biofilm structure, he had me stop my magnesium supplements and all dairy.  And

since the protozoa feeds on fat, I'm on a lowfat diet, under 15 grams of

fat/day, to starve the bug.

 

I've had CFS for 28 years and have been on this treatment for 7 months.  People

who have had CFS for a short time period, typically need less treatment to see

results.  My head symptoms have decreased and cognitive function is much easier

and clearer.  Big difference there.  The key is unclogging the blood vessels

so there is unobstructed bloodflow again. 

 

I do not take anticoagulants.  Since I have a protozoa that creates biofilm

and the biofilm is what is clogging my blood vessels, I'm taking lumbrokinaise

to break down biofilm.  Other than the biofilm and FL1953, the rest of my blood

was clear...clean.   That's the importance I think, of finding out what

specifically is going on with your blood so you can address it specifically. 

The cause of your blood issues and mine could be the same or different. 

 

Kay   

________________________________

From: Deepak L <deepak0625@...>

Sent: Sunday, January 1, 2012 10:07 PM

Subject: Re: New from India. Want to know about

hypercoagulation.

  

Hi Kay,

Thanks for the info.  Did you test for FL1953 ?  I am not sure if we have

this testing here in India.

Did anything help you for the head sensations and are you taking any

anticoagulants ??

Regards,

Deepak

On Sun, Jan 1, 2012 at 10:47 PM, Kay Siegrist <ksiegr@...> wrote:

> **

>

>

> Hi Deepak,

>

> You may want to google FL1953, recently named protomyxozoa to familiarize

> yourself with this possibility as the cause of your coagulation.  It is a

> malaria-like protozoan spread by mosquito, tick, and flea bites.  Dr.

> Fry, founder of Fry Laboratories, discovered it.  It hides in

> biofilm in blood vessels.

>

> Dr. Fry and Berg were among the small group considered biofilm and

> coagulation experts who shared information at last year's Washington DC

> biofilm and coagulation conference.  Dr. Fry considers CFS to be a vascular

> disease of blood vessels clogged with biofilm including those that carry

> blood from the head to the heart.

>

> Like you, I have experienced head aches and unusual uncomfortable head

> sensations and symptoms since my CFS onset that could be due to clogged

> blood vessels impeding blood flow.

>

> All the best to you,

> Kay

>

>

> ________________________________

>

>

>

> You need ot figure out what is triggering the hypercoagulation and

> address that issue. If you can't do that then the natto is just

> giving symptom relief. But, so far that's the best I can manage. I

> need oral surgery but don't have dental insurance.

>

> Warmest regards,

> Kendra

>

> On 1/1/12, Deepak L <deepak0625@...> wrote:

> > Thank you Kendra. I appreciate your help:) God bless.

> >

> >

> > I got a standard coagulation profile done here yesterday and these are

> the

> > results.

> >

> >

> > *Fibrinogen, Plasma 342 ( Ref range 200-400 )

> >

> > aPTT 27.70 ( Ref range 30-40 seconds) *

> >

> > Prothrombin time 13 ( Ref range 11-16 seconds)

> >

> > PT INT value 1 ( Standard therapy INR 2-3 )

> >

> >

> > Dr has some interesting things to say about Fibrinogen and aPTT.

> >

> > " Most laboratories report a normal range for Fibrinogen of 200-400 or

> > higher. The real range should be 200-300. Ours goes up to 315mg/dl. Most

> > labs don't want to deal with minor elevations in results, so they

> increase

> > the acceptable range a little. That is why patients with activated coag

> > systems have minor fibrinogen elevations which are very significant to us

> > but not to the physicians who routinely see higher normal ranges. "

> >

> > " Standard coagulation workup " would NOT show any abnormalities unless the

> > aPTT was BELOW the normal range, which indicates a hypercoag condition,

> but

> > docs are not taught this information. The ISAC panel is like 10 - 20

> times

> > as sensitive as the standard screening tests. "

> >

> > Seems I might have this hypercoagulation problem

> >

> > Would you say Dr Goldberg is amongst the best in this area of treatment.

> I

> > am eager then to maybe visit him in USA and cure myself.

> >

> > I want to start Nattokinase right away. Which is the best brand to buy ?

> > And what would be a good dosage and also, do I need to take any

> precautions

> > while on it?

> >

> > God bless all.

> >

> > Deepak.

> >

> >

> > On Sat, Dec 31, 2011 at 10:09 AM, Kendra <KCuyler@...> wrote:

> >

> >> **

> >>

> >>

> >> The ISAC hypercoagulation panel is only run by one lab in the USA -

> >> Esoterix (they are a subsidiary of Labcorp). The panel has specific

> >> requirements including 1 tube of blood must arrive fresh (not frozen)

> >> w/in 24 hours.

> >>

> >> I was dx'd w/hpercoagulation in 2006 when Berg was still

> >> processing the test @ Hemex. Do a Google search for * Berg Hemex

> >> hypercoagulation* and you willl find some good articles.

> >>

> >> If I were you I would just start taking Nattokinase. I take 2,000 FU

> >> 3 times a day - Doctor's Best brand from iherb.com. It only costs

> >> about $15 a month.

> >>

> >> Kendra

> >>

> >>

> >> On 12/29/11, Deepak <deepak0625@...> wrote:

> >> > Hello to all,

> >> >

> >> > Just joined this group.

> >> >

> >> > I am 40 years old male in India and since this year have been having

> >> most of

> >> > the symptoms of fibromyalgia and cfs. All tests come normal and

> doctors

> >> > think I am some crazy person, which is extremely frustrating.

> >> >

> >> > I have been reading some posts on hyper coagulation and I feel I may

> be

> >> > having this problem as my fingers feel swollen and if i press them a

> bit

> >> the

> >> > blood seems to be moving slower than it used to. Last week my finger

> >> > suddenly developed a cut and started to bleed even though I dont

> >> > remember

> >> > having had any injury ( only reason I could come up with is the cold

> >> weather

> >> > ) Also, if I lie down for a while with head pressed - the side its

> >> pressed

> >> > feels all cold. So I am guessing its some circulation problem. Also I

> >> > get

> >> > these poky, wiry feeling in my fingers and weird sensations in my

> scalp

> >> like

> >> > crawly, wiry, scratch, " pull " , etc.

> >> >

> >> > Could I please get some advise on what are tests I can do here to

> figure

> >> out

> >> > if I indeed have hypercoagulation. Somehow I intuitively feel I do but

> >> > dont know what to do. My ESR rate is 8, in case that helps.

> >> >

> >> > Can I just start taking Nattokinase and see how I feel with it ? Where

> >> can

> >> > I order it from ?

> >> >

> >> > God Bless us all.

> >> >

> >> > With love,

> >> > Deepak

> >> >

> >> >

> >> >

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

> >>

> >> >

> >> > 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]

I am just trying understand how you got to this point where you have been able

to pinpoint this particular infection. What tests has Dr. Fry completed? You are

very fortunate to be so close to Dr. Fry.

From: Kay Siegrist <ksiegr@...>

" " < >

Sent: Monday, January 2, 2012 1:00 PM

Subject: Re: biofilm/FL1953/coagulation

Hi Al,

 

I'm being treated by Dr. Fry himself.  Luckily for me, his office and Fry

Laboratories are about a 2 hour drive from me in Arizona.

 

As I'm sure you can imagine, my list of tests and treatments over the last 28

years of having CFS is long.  My onset was sudden and I was sick for years

before getting a CFS diagnosis at Mayo Clinic in 1993.

 

Could you narrow your question for me?  Is there something more specific I can

try to answer for you?

 

Kay

________________________________

From: Al Bellenfant <albellenfant@...>

" " < >

Sent: Monday, January 2, 2012 9:01 AM

Subject: Re: biofilm/FL1953/coagulation

  

Are you being treated by a local doctor? Can you give a short history of your

illness and what you have done to this point in the way of testing and

treatment. Thanks

From: Kay Siegrist <ksiegr@...>

" " < >

Sent: Monday, January 2, 2012 9:00 AM

Subject: Re: biofilm/FL1953/coagulation

Good Morning Deepak,

 

I got tested last February for FL1953 and tested positive for the protozoa and

biofilm.  Fry Labs adds a dye to your blood that illuminates the protozoa and

makes the biofilm show up like blue clouds under the microscope.  Fry

Laboratories in sdale, Arizona is the only lab that does this live

blood test.   

 

Based on the test results and my symptoms and history, Dr. Fry put me on a diet,

Lumbrokinaise to break down the biofilm, and malarone (a malaria prescription)

to knock down the FL1953 protozoa.  Since magnesium and calcium form part of

biofilm structure, he had me stop my magnesium supplements and all dairy.  And

since the protozoa feeds on fat, I'm on a lowfat diet, under 15 grams of

fat/day, to starve the bug.

 

I've had CFS for 28 years and have been on this treatment for 7 months.  People

who have had CFS for a short time period, typically need less treatment to see

results.  My head symptoms have decreased and cognitive function is much easier

and clearer.  Big difference there.  The key is unclogging the blood vessels so

there is unobstructed bloodflow again. 

 

I do not take anticoagulants.  Since I have a protozoa that creates biofilm and

the biofilm is what is clogging my blood vessels, I'm taking lumbrokinaise to

break down biofilm.  Other than the biofilm and FL1953, the rest of my blood was

clear...clean.   That's the importance I think, of finding out what specifically

is going on with your blood so you can address it specifically.  The cause of

your blood issues and mine could be the same or different. 

 

Kay   

________________________________

From: Deepak L <deepak0625@...>

Sent: Sunday, January 1, 2012 10:07 PM

Subject: Re: New from India. Want to know about

hypercoagulation.

  

Hi Kay,

Thanks for the info.  Did you test for FL1953 ?  I am not sure if we have

this testing here in India.

Did anything help you for the head sensations and are you taking any

anticoagulants ??

Regards,

Deepak

On Sun, Jan 1, 2012 at 10:47 PM, Kay Siegrist <ksiegr@...> wrote:

> **

>

>

> Hi Deepak,

>

> You may want to google FL1953, recently named protomyxozoa to familiarize

> yourself with this possibility as the cause of your coagulation.  It is a

> malaria-like protozoan spread by mosquito, tick, and flea bites.  Dr.

> Fry, founder of Fry Laboratories, discovered it.  It hides in

> biofilm in blood vessels.

>

> Dr. Fry and Berg were among the small group considered biofilm and

> coagulation experts who shared information at last year's Washington DC

> biofilm and coagulation conference.  Dr. Fry considers CFS to be a vascular

> disease of blood vessels clogged with biofilm including those that carry

> blood from the head to the heart.

>

> Like you, I have experienced head aches and unusual uncomfortable head

> sensations and symptoms since my CFS onset that could be due to clogged

> blood vessels impeding blood flow.

>

> All the best to you,

> Kay

>

>

> ________________________________

>

>

>

> You need ot figure out what is triggering the hypercoagulation and

> address that issue. If you can't do that then the natto is just

> giving symptom relief. But, so far that's the best I can manage. I

> need oral surgery but don't have dental insurance.

>

> Warmest regards,

> Kendra

>

> On 1/1/12, Deepak L <deepak0625@...> wrote:

> > Thank you Kendra. I appreciate your help:) God bless.

> >

> >

> > I got a standard coagulation profile done here yesterday and these are

> the

> > results.

> >

> >

> > *Fibrinogen, Plasma 342 ( Ref range 200-400 )

> >

> > aPTT 27.70 ( Ref range 30-40 seconds) *

> >

> > Prothrombin time 13 ( Ref range 11-16 seconds)

> >

> > PT INT value 1 ( Standard therapy INR 2-3 )

> >

> >

> > Dr has some interesting things to say about Fibrinogen and aPTT.

> >

> > " Most laboratories report a normal range for Fibrinogen of 200-400 or

> > higher. The real range should be 200-300. Ours goes up to 315mg/dl. Most

> > labs don't want to deal with minor elevations in results, so they

> increase

> > the acceptable range a little. That is why patients with activated coag

> > systems have minor fibrinogen elevations which are very significant to us

> > but not to the physicians who routinely see higher normal ranges. "

> >

> > " Standard coagulation workup " would NOT show any abnormalities unless the

> > aPTT was BELOW the normal range, which indicates a hypercoag condition,

> but

> > docs are not taught this information. The ISAC panel is like 10 - 20

> times

> > as sensitive as the standard screening tests. "

> >

> > Seems I might have this hypercoagulation problem

> >

> > Would you say Dr Goldberg is amongst the best in this area of treatment.

> I

> > am eager then to maybe visit him in USA and cure myself.

> >

> > I want to start Nattokinase right away. Which is the best brand to buy ?

> > And what would be a good dosage and also, do I need to take any

> precautions

> > while on it?

> >

> > God bless all.

> >

> > Deepak.

> >

> >

> > On Sat, Dec 31, 2011 at 10:09 AM, Kendra <KCuyler@...> wrote:

> >

> >> **

> >>

> >>

> >> The ISAC hypercoagulation panel is only run by one lab in the USA -

> >> Esoterix (they are a subsidiary of Labcorp). The panel has specific

> >> requirements including 1 tube of blood must arrive fresh (not frozen)

> >> w/in 24 hours.

> >>

> >> I was dx'd w/hpercoagulation in 2006 when Berg was still

> >> processing the test @ Hemex. Do a Google search for * Berg Hemex

> >> hypercoagulation* and you willl find some good articles.

> >>

> >> If I were you I would just start taking Nattokinase. I take 2,000 FU

> >> 3 times a day - Doctor's Best brand from iherb.com. It only costs

> >> about $15 a month.

> >>

> >> Kendra

> >>

> >>

> >> On 12/29/11, Deepak <deepak0625@...> wrote:

> >> > Hello to all,

> >> >

> >> > Just joined this group.

> >> >

> >> > I am 40 years old male in India and since this year have been having

> >> most of

> >> > the symptoms of fibromyalgia and cfs. All tests come normal and

> doctors

> >> > think I am some crazy person, which is extremely frustrating.

> >> >

> >> > I have been reading some posts on hyper coagulation and I feel I may

> be

> >> > having this problem as my fingers feel swollen and if i press them a

> bit

> >> the

> >> > blood seems to be moving slower than it used to. Last week my finger

> >> > suddenly developed a cut and started to bleed even though I dont

> >> > remember

> >> > having had any injury ( only reason I could come up with is the cold

> >> weather

> >> > ) Also, if I lie down for a while with head pressed - the side its

> >> pressed

> >> > feels all cold. So I am guessing its some circulation problem. Also I

> >> > get

> >> > these poky, wiry feeling in my fingers and weird sensations in my

> scalp

> >> like

> >> > crawly, wiry, scratch, " pull " , etc.

> >> >

> >> > Could I please get some advise on what are tests I can do here to

> figure

> >> out

> >> > if I indeed have hypercoagulation. Somehow I intuitively feel I do but

> >> > dont know what to do. My ESR rate is 8, in case that helps.

> >> >

> >> > Can I just start taking Nattokinase and see how I feel with it ? Where

> >> can

> >> > I order it from ?

> >> >

> >> > God Bless us all.

> >> >

> >> > With love,

> >> > Deepak

> >> >

> >> >

> >> >

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

> >>

> >> >

> >> > 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]

Kay I was once being treated by Dr Cheney and he had my blood tested by

HEMEX Labs. It showed Soluble Fibrin Monomer at 22 ref 0-17. Platlet Activation

Index 1+, CD62P + ADP 36 with Ref 39-80. He wrote on the report " Does not

activate. ADP > CHRONIC activation in the bone marrow " . I was on heparin and

transfer factor along with Isoprinosine(immune modulator) I was actually better

for some time while on this treatment. Not sure why we stopped now. Do you have

any doctors names at MAYO? I am still trying to work but am getting worse. I

will need a diagnosis from someone like MAYO if I try to draw disibilty. I have

suffered for 15 years and still have difficulty finding help here in Tennessee.

Thanks

From: Kay Siegrist <ksiegr@...>

" " < >

Sent: Monday, January 2, 2012 1:00 PM

Subject: Re: biofilm/FL1953/coagulation

Hi Al,

 

I'm being treated by Dr. Fry himself.  Luckily for me, his office and Fry

Laboratories are about a 2 hour drive from me in Arizona.

 

As I'm sure you can imagine, my list of tests and treatments over the last 28

years of having CFS is long.  My onset was sudden and I was sick for years

before getting a CFS diagnosis at Mayo Clinic in 1993.

 

Could you narrow your question for me?  Is there something more specific I can

try to answer for you?

 

Kay

________________________________

From: Al Bellenfant <albellenfant@...>

" " < >

Sent: Monday, January 2, 2012 9:01 AM

Subject: Re: biofilm/FL1953/coagulation

  

Are you being treated by a local doctor? Can you give a short history of your

illness and what you have done to this point in the way of testing and

treatment. Thanks

From: Kay Siegrist <ksiegr@...>

" " < >

Sent: Monday, January 2, 2012 9:00 AM

Subject: Re: biofilm/FL1953/coagulation

Good Morning Deepak,

 

I got tested last February for FL1953 and tested positive for the protozoa and

biofilm.  Fry Labs adds a dye to your blood that illuminates the protozoa and

makes the biofilm show up like blue clouds under the microscope.  Fry

Laboratories in sdale, Arizona is the only lab that does this live

blood test.   

 

Based on the test results and my symptoms and history, Dr. Fry put me on a diet,

Lumbrokinaise to break down the biofilm, and malarone (a malaria prescription)

to knock down the FL1953 protozoa.  Since magnesium and calcium form part of

biofilm structure, he had me stop my magnesium supplements and all dairy.  And

since the protozoa feeds on fat, I'm on a lowfat diet, under 15 grams of

fat/day, to starve the bug.

 

I've had CFS for 28 years and have been on this treatment for 7 months.  People

who have had CFS for a short time period, typically need less treatment to see

results.  My head symptoms have decreased and cognitive function is much easier

and clearer.  Big difference there.  The key is unclogging the blood vessels so

there is unobstructed bloodflow again. 

 

I do not take anticoagulants.  Since I have a protozoa that creates biofilm and

the biofilm is what is clogging my blood vessels, I'm taking lumbrokinaise to

break down biofilm.  Other than the biofilm and FL1953, the rest of my blood was

clear...clean.   That's the importance I think, of finding out what specifically

is going on with your blood so you can address it specifically.  The cause of

your blood issues and mine could be the same or different. 

 

Kay   

________________________________

From: Deepak L <deepak0625@...>

Sent: Sunday, January 1, 2012 10:07 PM

Subject: Re: New from India. Want to know about

hypercoagulation.

  

Hi Kay,

Thanks for the info.  Did you test for FL1953 ?  I am not sure if we have

this testing here in India.

Did anything help you for the head sensations and are you taking any

anticoagulants ??

Regards,

Deepak

On Sun, Jan 1, 2012 at 10:47 PM, Kay Siegrist <ksiegr@...> wrote:

> **

>

>

> Hi Deepak,

>

> You may want to google FL1953, recently named protomyxozoa to familiarize

> yourself with this possibility as the cause of your coagulation.  It is a

> malaria-like protozoan spread by mosquito, tick, and flea bites.  Dr.

> Fry, founder of Fry Laboratories, discovered it.  It hides in

> biofilm in blood vessels.

>

> Dr. Fry and Berg were among the small group considered biofilm and

> coagulation experts who shared information at last year's Washington DC

> biofilm and coagulation conference.  Dr. Fry considers CFS to be a vascular

> disease of blood vessels clogged with biofilm including those that carry

> blood from the head to the heart.

>

> Like you, I have experienced head aches and unusual uncomfortable head

> sensations and symptoms since my CFS onset that could be due to clogged

> blood vessels impeding blood flow.

>

> All the best to you,

> Kay

>

>

> ________________________________

>

>

>

> You need ot figure out what is triggering the hypercoagulation and

> address that issue. If you can't do that then the natto is just

> giving symptom relief. But, so far that's the best I can manage. I

> need oral surgery but don't have dental insurance.

>

> Warmest regards,

> Kendra

>

> On 1/1/12, Deepak L <deepak0625@...> wrote:

> > Thank you Kendra. I appreciate your help:) God bless.

> >

> >

> > I got a standard coagulation profile done here yesterday and these are

> the

> > results.

> >

> >

> > *Fibrinogen, Plasma 342 ( Ref range 200-400 )

> >

> > aPTT 27.70 ( Ref range 30-40 seconds) *

> >

> > Prothrombin time 13 ( Ref range 11-16 seconds)

> >

> > PT INT value 1 ( Standard therapy INR 2-3 )

> >

> >

> > Dr has some interesting things to say about Fibrinogen and aPTT.

> >

> > " Most laboratories report a normal range for Fibrinogen of 200-400 or

> > higher. The real range should be 200-300. Ours goes up to 315mg/dl. Most

> > labs don't want to deal with minor elevations in results, so they

> increase

> > the acceptable range a little. That is why patients with activated coag

> > systems have minor fibrinogen elevations which are very significant to us

> > but not to the physicians who routinely see higher normal ranges. "

> >

> > " Standard coagulation workup " would NOT show any abnormalities unless the

> > aPTT was BELOW the normal range, which indicates a hypercoag condition,

> but

> > docs are not taught this information. The ISAC panel is like 10 - 20

> times

> > as sensitive as the standard screening tests. "

> >

> > Seems I might have this hypercoagulation problem

> >

> > Would you say Dr Goldberg is amongst the best in this area of treatment.

> I

> > am eager then to maybe visit him in USA and cure myself.

> >

> > I want to start Nattokinase right away. Which is the best brand to buy ?

> > And what would be a good dosage and also, do I need to take any

> precautions

> > while on it?

> >

> > God bless all.

> >

> > Deepak.

> >

> >

> > On Sat, Dec 31, 2011 at 10:09 AM, Kendra <KCuyler@...> wrote:

> >

> >> **

> >>

> >>

> >> The ISAC hypercoagulation panel is only run by one lab in the USA -

> >> Esoterix (they are a subsidiary of Labcorp). The panel has specific

> >> requirements including 1 tube of blood must arrive fresh (not frozen)

> >> w/in 24 hours.

> >>

> >> I was dx'd w/hpercoagulation in 2006 when Berg was still

> >> processing the test @ Hemex. Do a Google search for * Berg Hemex

> >> hypercoagulation* and you willl find some good articles.

> >>

> >> If I were you I would just start taking Nattokinase. I take 2,000 FU

> >> 3 times a day - Doctor's Best brand from iherb.com. It only costs

> >> about $15 a month.

> >>

> >> Kendra

> >>

> >>

> >> On 12/29/11, Deepak <deepak0625@...> wrote:

> >> > Hello to all,

> >> >

> >> > Just joined this group.

> >> >

> >> > I am 40 years old male in India and since this year have been having

> >> most of

> >> > the symptoms of fibromyalgia and cfs. All tests come normal and

> doctors

> >> > think I am some crazy person, which is extremely frustrating.

> >> >

> >> > I have been reading some posts on hyper coagulation and I feel I may

> be

> >> > having this problem as my fingers feel swollen and if i press them a

> bit

> >> the

> >> > blood seems to be moving slower than it used to. Last week my finger

> >> > suddenly developed a cut and started to bleed even though I dont

> >> > remember

> >> > having had any injury ( only reason I could come up with is the cold

> >> weather

> >> > ) Also, if I lie down for a while with head pressed - the side its

> >> pressed

> >> > feels all cold. So I am guessing its some circulation problem. Also I

> >> > get

> >> > these poky, wiry feeling in my fingers and weird sensations in my

> scalp

> >> like

> >> > crawly, wiry, scratch, " pull " , etc.

> >> >

> >> > Could I please get some advise on what are tests I can do here to

> figure

> >> out

> >> > if I indeed have hypercoagulation. Somehow I intuitively feel I do but

> >> > dont know what to do. My ESR rate is 8, in case that helps.

> >> >

> >> > Can I just start taking Nattokinase and see how I feel with it ? Where

> >> can

> >> > I order it from ?

> >> >

> >> > God Bless us all.

> >> >

> >> > With love,

> >> > Deepak

> >> >

> >> >

> >> >

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

> >>

> >> >

> >> > 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]

OK let me give you what pertains to pathogens.

 

About 12 years ago at 16 years of having CFS, I got my first tests done for the

pathogens they tested for at that time.  Tested positive for a few including

the coxsackie virus and EBV.  I bought a rife machine, energy tested myself,

and treated myself for 9 months.  Before the rife, I was bedridden most of the

time and way too sick to drive.  Although rife treatment didn't get me back to

normal, it got me back on my feet.  My treatment included stopping for herxes

here and there.  I then got retested for the pathogens and no longer had the

antibodies.  My pathogen load had been reduced.  Also at that time, I began

eating healthier, lean proteins, organic produce, and cut out wheat and

processed foods.

 

About 2 years ago when we started hearing about XMRV, I researched natural

anti-retrovirals/anti-virals and found Sutherlandia OPC.  It is a combination

of the super-botanicals sutherlandia and oleander.  The only place in the

world where sutherlandia grows is a region in South Africa.  After emailing Dr.

Marc Swanepoel there, I ordered Sutherlandia OPC from him, tested myself on it,

my body wanted it, and started taking it.  Although the die-off caused herxes,

I continued it.  It too improved me some and I believe, reduced my pathogen

load.  At Dr. Swanepoel's suggestion, I did a liver/gb cleanse before

beginning and passed numerous gallstones which helped my body's detox ability.

 

Once again, improvement but obviously some remaining pathogen was still an

issue.  About a year ago, I started with a new GP, highly regarded where I

live.  She had just been to a lecture of Dr. Fry's and suggested I see him.

 

At my first visit with Dr. Fry, he did the usual history then went down a list

of symptoms with me answering yes or no.  He was the first doctor to ask me

about certain CFS symptoms that most docs are unaware of.  He understood CFS

better than any proir doctor I had seen.  My answers helped him pinpoint the

blood tests he would do.

 

Since we've been talking about hypercoagulation, let me mention that my blood

has always seemed of normal thickness to me but I have had circulation problems

and a lower than normal body temp with CFS.  Dr. Fry ordered blood coagulation

tests and my results were normal.  What I tested positive for was biofilm

which clogs blood vessels and the protozoa FL1953/protomyxozoa.

 

I do feel lucky that Dr. Fry and I live in the same state.  Hope something I'm

relaying is helpful to you.  Please email again if this brings up more

questions for you.

 

Kay 

 

 

________________________________

From: Al Bellenfant <albellenfant@...>

" " < >

Sent: Monday, January 2, 2012 4:58 PM

Subject: Re: biofilm/FL1953/coagulation

 

I am just trying understand how you got to this point where you have been able

to pinpoint this particular infection. What tests has Dr. Fry completed? You

are very fortunate to be so close to Dr. Fry.

From: Kay Siegrist <ksiegr@...>

" " < >

Sent: Monday, January 2, 2012 1:00 PM

Subject: Re: biofilm/FL1953/coagulation

Hi Al,

 

I'm being treated by Dr. Fry himself.  Luckily for me, his office and Fry

Laboratories are about a 2 hour drive from me in Arizona.

 

As I'm sure you can imagine, my list of tests and treatments over the last 28

years of having CFS is long.  My onset was sudden and I was sick for years

before getting a CFS diagnosis at Mayo Clinic in 1993.

 

Could you narrow your question for me?  Is there something more specific I can

try to answer for you?

 

Kay

________________________________

From: Al Bellenfant <albellenfant@...>

" " < >

Sent: Monday, January 2, 2012 9:01 AM

Subject: Re: biofilm/FL1953/coagulation

  

Are you being treated by a local doctor? Can you give a short history of your

illness and what you have done to this point in the way of testing and

treatment. Thanks

From: Kay Siegrist <ksiegr@...>

" " < >

Sent: Monday, January 2, 2012 9:00 AM

Subject: Re: biofilm/FL1953/coagulation

Good Morning Deepak,

 

I got tested last February for FL1953 and tested positive for the protozoa and

biofilm.  Fry Labs adds a dye to your blood that illuminates the protozoa and

makes the biofilm show up like blue clouds under the microscope.  Fry

Laboratories in sdale, Arizona is the only lab that does this live

blood test.   

 

Based on the test results and my symptoms and history, Dr. Fry put me on a diet,

Lumbrokinaise to break down the biofilm, and malarone (a malaria prescription)

to knock down the FL1953 protozoa.  Since magnesium and calcium form part of

biofilm structure, he had me stop my magnesium supplements and all dairy.  And

since the protozoa feeds on fat, I'm on a lowfat diet, under 15 grams of

fat/day, to starve the bug.

 

I've had CFS for 28 years and have been on this treatment for 7 months.  People

who have had CFS for a short time period, typically need less treatment to see

results.  My head symptoms have decreased and cognitive function is much easier

and clearer.  Big difference there.  The key is unclogging the blood vessels

so there is unobstructed bloodflow again. 

 

I do not take anticoagulants.  Since I have a protozoa that creates biofilm

and the biofilm is what is clogging my blood vessels, I'm taking lumbrokinaise

to break down biofilm.  Other than the biofilm and FL1953, the rest of my blood

was clear...clean.   That's the importance I think, of finding out what

specifically is going on with your blood so you can address it specifically. 

The cause of your blood issues and mine could be the same or different. 

 

Kay   

________________________________

From: Deepak L <deepak0625@...>

Sent: Sunday, January 1, 2012 10:07 PM

Subject: Re: New from India. Want to know about

hypercoagulation.

  

Hi Kay,

Thanks for the info.  Did you test for FL1953 ?  I am not sure if we have

this testing here in India.

Did anything help you for the head sensations and are you taking any

anticoagulants ??

Regards,

Deepak

On Sun, Jan 1, 2012 at 10:47 PM, Kay Siegrist <ksiegr@...> wrote:

> **

>

>

> Hi Deepak,

>

> You may want to google FL1953, recently named protomyxozoa to familiarize

> yourself with this possibility as the cause of your coagulation.  It is a

> malaria-like protozoan spread by mosquito, tick, and flea bites.  Dr.

> Fry, founder of Fry Laboratories, discovered it.  It hides in

> biofilm in blood vessels.

>

> Dr. Fry and Berg were among the small group considered biofilm and

> coagulation experts who shared information at last year's Washington DC

> biofilm and coagulation conference.  Dr. Fry considers CFS to be a vascular

> disease of blood vessels clogged with biofilm including those that carry

> blood from the head to the heart.

>

> Like you, I have experienced head aches and unusual uncomfortable head

> sensations and symptoms since my CFS onset that could be due to clogged

> blood vessels impeding blood flow.

>

> All the best to you,

> Kay

>

>

> ________________________________

>

>

>

> You need ot figure out what is triggering the hypercoagulation and

> address that issue. If you can't do that then the natto is just

> giving symptom relief. But, so far that's the best I can manage. I

> need oral surgery but don't have dental insurance.

>

> Warmest regards,

> Kendra

>

> On 1/1/12, Deepak L <deepak0625@...> wrote:

> > Thank you Kendra. I appreciate your help:) God bless.

> >

> >

> > I got a standard coagulation profile done here yesterday and these are

> the

> > results.

> >

> >

> > *Fibrinogen, Plasma 342 ( Ref range 200-400 )

> >

> > aPTT 27.70 ( Ref range 30-40 seconds) *

> >

> > Prothrombin time 13 ( Ref range 11-16 seconds)

> >

> > PT INT value 1 ( Standard therapy INR 2-3 )

> >

> >

> > Dr has some interesting things to say about Fibrinogen and aPTT.

> >

> > " Most laboratories report a normal range for Fibrinogen of 200-400 or

> > higher. The real range should be 200-300. Ours goes up to 315mg/dl. Most

> > labs don't want to deal with minor elevations in results, so they

> increase

> > the acceptable range a little. That is why patients with activated coag

> > systems have minor fibrinogen elevations which are very significant to us

> > but not to the physicians who routinely see higher normal ranges. "

> >

> > " Standard coagulation workup " would NOT show any abnormalities unless the

> > aPTT was BELOW the normal range, which indicates a hypercoag condition,

> but

> > docs are not taught this information. The ISAC panel is like 10 - 20

> times

> > as sensitive as the standard screening tests. "

> >

> > Seems I might have this hypercoagulation problem

> >

> > Would you say Dr Goldberg is amongst the best in this area of treatment.

> I

> > am eager then to maybe visit him in USA and cure myself.

> >

> > I want to start Nattokinase right away. Which is the best brand to buy ?

> > And what would be a good dosage and also, do I need to take any

> precautions

> > while on it?

> >

> > God bless all.

> >

> > Deepak.

> >

> >

> > On Sat, Dec 31, 2011 at 10:09 AM, Kendra <KCuyler@...> wrote:

> >

> >> **

> >>

> >>

> >> The ISAC hypercoagulation panel is only run by one lab in the USA -

> >> Esoterix (they are a subsidiary of Labcorp). The panel has specific

> >> requirements including 1 tube of blood must arrive fresh (not frozen)

> >> w/in 24 hours.

> >>

> >> I was dx'd w/hpercoagulation in 2006 when Berg was still

> >> processing the test @ Hemex. Do a Google search for * Berg Hemex

> >> hypercoagulation* and you willl find some good articles.

> >>

> >> If I were you I would just start taking Nattokinase. I take 2,000 FU

> >> 3 times a day - Doctor's Best brand from iherb.com. It only costs

> >> about $15 a month.

> >>

> >> Kendra

> >>

> >>

> >> On 12/29/11, Deepak <deepak0625@...> wrote:

> >> > Hello to all,

> >> >

> >> > Just joined this group.

> >> >

> >> > I am 40 years old male in India and since this year have been having

> >> most of

> >> > the symptoms of fibromyalgia and cfs. All tests come normal and

> doctors

> >> > think I am some crazy person, which is extremely frustrating.

> >> >

> >> > I have been reading some posts on hyper coagulation and I feel I may

> be

> >> > having this problem as my fingers feel swollen and if i press them a

> bit

> >> the

> >> > blood seems to be moving slower than it used to. Last week my finger

> >> > suddenly developed a cut and started to bleed even though I dont

> >> > remember

> >> > having had any injury ( only reason I could come up with is the cold

> >> weather

> >> > ) Also, if I lie down for a while with head pressed - the side its

> >> pressed

> >> > feels all cold. So I am guessing its some circulation problem. Also I

> >> > get

> >> > these poky, wiry feeling in my fingers and weird sensations in my

> scalp

> >> like

> >> > crawly, wiry, scratch, " pull " , etc.

> >> >

> >> > Could I please get some advise on what are tests I can do here to

> figure

> >> out

> >> > if I indeed have hypercoagulation. Somehow I intuitively feel I do but

> >> > dont know what to do. My ESR rate is 8, in case that helps.

> >> >

> >> > Can I just start taking Nattokinase and see how I feel with it ? Where

> >> can

> >> > I order it from ?

> >> >

> >> > God Bless us all.

> >> >

> >> > With love,

> >> > Deepak

> >> >

> >> >

> >> >

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

> >>

> >> >

> >> > 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]

Hi Al,

 

I so hope for all of us that finding help gets easier and yields more consistent

results soon.  I don't have any doctors names at Mayo.  About 2 years ago I

called Mayo here in sdale and was told that they no longer see CFS

patients. 

 

I haven't been to Dr. Cheney but have heard that he's good at understanding what

is needed for disability.  Just so you know, the younger CFS patients are, the

less years they have had CFS, and being male, the greater success Dr. Fry has

turning around their health and sooner.  Would it be possible for you to find a

doctor in Tennessee who would order the FL1953 test for you from Fry Labs so you

could see if you have it and biofilm?  If you do have it, Dr. Fry's treatment

protocol isn't complicated.  Not sure if you're wondering about FL1953 or

not.  Just a thought.

 

Kay

________________________________

From: Al Bellenfant <albellenfant@...>

" " < >

Sent: Tuesday, January 3, 2012 9:41 AM

Subject: Re: biofilm/FL1953/coagulation

 

Kay I was once being treated by Dr Cheney and he had my blood tested by

HEMEX Labs. It showed Soluble Fibrin Monomer at 22 ref 0-17. Platlet Activation

Index 1+, CD62P + ADP 36 with Ref 39-80. He wrote on the report " Does not

activate. ADP > CHRONIC activation in the bone marrow " . I was on heparin and

transfer factor along with Isoprinosine(immune modulator) I was actually better

for some time while on this treatment. Not sure why we stopped now. Do you have

any doctors names at MAYO? I am still trying to work but am getting worse. I

will need a diagnosis from someone like MAYO if I try to draw disibilty. I have

suffered for 15 years and still have difficulty finding help here in Tennessee.

Thanks

]

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

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]

Al,

I'll also mention that I just had my social security disability

application approved recently (after several years of paperwork,

hearings, appeals, etc). A large part of my success was a disability

statement from Dr Klimas, who's located in Miami, Florida.

Although as far as I know she doesn't include biofilm protocols in her

treatment, she does have a broad understanding of ME/CFS in general,

and has the credentials /credibility to support any disability

statement she might write for a patient. It might be worth your while

to see her, if you can manage the expense of the visit and the travel

from Tennessee to Miami. Personally, I wish I had gotten around to

seeing her several years earlier than I did.

Good luck,

Marcia on

in Salem, Massachusetts

On Jan 3, 2012, at 3:17 PM, Kay Siegrist wrote:

> Hi Al,

>

> I so hope for all of us that finding help gets easier and yields

> more consistent results soon. I don't have any doctors names at

> Mayo. About 2 years ago I called Mayo here in sdale and was

> told that they no longer see CFS patients.

>

> I haven't been to Dr. Cheney but have heard that he's good at

> understanding what is needed for disability. Just so you know, the

> younger CFS patients are, the less years they have had CFS, and

> being male, the greater success Dr. Fry has turning around their

> health and sooner. Would it be possible for you to find a doctor in

> Tennessee who would order the FL1953 test for you from Fry Labs so

> you could see if you have it and biofilm? If you do have it, Dr.

> Fry's treatment protocol isn't complicated. Not sure if you're

> wondering about FL1953 or not. Just a thought.

>

> Kay

>

>

> ________________________________

> From: Al Bellenfant <albellenfant@...>

> " " <

> >

> Sent: Tuesday, January 3, 2012 9:41 AM

> Subject: Re: biofilm/FL1953/coagulation

>

>

>

>

> Kay I was once being treated by Dr Cheney and he had my blood

> tested by HEMEX Labs. It showed Soluble Fibrin Monomer at 22 ref

> 0-17. Platlet Activation Index 1+, CD62P + ADP 36 with Ref 39-80. He

> wrote on the report " Does not activate. ADP > CHRONIC activation in

> the bone marrow " . I was on heparin and transfer factor along with

> Isoprinosine(immune modulator) I was actually better for some time

> while on this treatment. Not sure why we stopped now. Do you have

> any doctors names at MAYO? I am still trying to work but am getting

> worse. I will need a diagnosis from someone like MAYO if I try to

> draw disibilty. I have suffered for 15 years and still have

> difficulty finding help here in Tennessee. Thanks

>

> ]

>

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

>

> 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.

> Groups Links

>

>

[Guest guest]

Thank you. I am planning to see her once the new clinic is open. I have heard

nothing but good things about her practice.

From: Marcia on <mmorrison@...>

Sent: Friday, January 6, 2012 1:37 PM

Subject: Re: biofilm/FL1953/coagulation

Al,

I'll also mention that I just had my social security disability 

application approved recently (after several years of paperwork, 

hearings, appeals, etc). A large part of my success was a disability 

statement from Dr Klimas, who's located in Miami, Florida. 

Although as far as I know she doesn't include biofilm protocols in her 

treatment, she does have a broad understanding of ME/CFS in general, 

and has the credentials /credibility to support any disability 

statement she might write for a patient. It might be worth your while 

to see her, if you can manage the expense of the visit and the travel 

from Tennessee to Miami. Personally, I wish I had gotten around to 

seeing her several years earlier than I did.

Good luck,

Marcia on

in Salem, Massachusetts

On Jan 3, 2012, at 3:17 PM, Kay Siegrist wrote:

> Hi Al,

>

> I so hope for all of us that finding help gets easier and yields 

> more consistent results soon.  I don't have any doctors names at 

> Mayo.  About 2 years ago I called Mayo here in sdale and was 

> told that they no longer see CFS patients.

>

> I haven't been to Dr. Cheney but have heard that he's good at 

> understanding what is needed for disability.  Just so you know, the 

> younger CFS patients are, the less years they have had CFS, and 

> being male, the greater success Dr. Fry has turning around their 

> health and sooner.  Would it be possible for you to find a doctor in 

> Tennessee who would order the FL1953 test for you from Fry Labs so 

> you could see if you have it and biofilm?  If you do have it, Dr. 

> Fry's treatment protocol isn't complicated.  Not sure if you're 

> wondering about FL1953 or not.  Just a thought.

>

> Kay

>

>

> ________________________________

> From: Al Bellenfant <albellenfant@...>

> " " <

> >

> Sent: Tuesday, January 3, 2012 9:41 AM

> Subject: Re: biofilm/FL1953/coagulation

>

>

>

>

> Kay I was once being treated by Dr Cheney and he had my blood 

> tested by HEMEX Labs. It showed Soluble Fibrin Monomer at 22 ref 

> 0-17. Platlet Activation Index 1+, CD62P + ADP 36 with Ref 39-80. He 

> wrote on the report " Does not activate. ADP > CHRONIC activation in 

> the bone marrow " . I was on heparin and transfer factor along with 

> Isoprinosine(immune modulator) I was actually better for some time 

> while on this treatment. Not sure why we stopped now. Do you have 

> any doctors names at MAYO? I am still trying to work but am getting 

> worse. I will need a diagnosis from someone like MAYO if I try to 

> draw disibilty. I have suffered for 15 years and still have 

> difficulty finding help here in Tennessee. Thanks

>

> ]

>

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

>

> 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. 

> Groups Links

>

>

[Guest guest]

I live in south central Pennsylvania (about 20 miles south of

burg [state capital]) and there are no doctors who want anything

to do with CFIDS, much less specialize in it. Rheumatologist says

Psychiatry or Neurology is responsible, and Neurology says that

Rheumatology is responsible. I have to go 50 miles for every

specialist except pain management to find anyone willing to work with

Medicaid. My pain management doctor is about SIXTY miles away. You can

bet that I am EXHAUSTED after traveling that far. It is so frustrating

not knowing what kind of doctor to see! There are Neurologists,

Rheumatologists, Immunologists, Endocrinologists, anesthesiologists

(interventional pain management), Orthopedics, and algiatrists (pain

management). I've seen all of those and SEVERAL more. Until there is a

specialty called Neuro-immune endocrinologists, no specialty will

claim CFS.

Can anyone recommend any doctors that specialize in the enigma that is

CFS/CFIDS? Particularly ones that are in Pennsylvania and/or

surrounding states.

Has anyone here tried Ampligen? I'm looking into a clinical trial to

give it a try. I'm so tired and at this point, I'll try anything with

a chance of working. My wife and I just celebrated our seventh

anniversary (since we started " dating-dating " ) and we went out to Red

Lobster. I'm going to sleep ALL WEEKEND and probably most, if not all

on Monday. HOPEFULLY, I will have recovered by Tuesday. I miss having

a life. I miss taking my wife to the movies and out to dinner. I miss

working and being a productive member of society. To make matters

worse, my pharmacy hasn't had Adderall in stock for about two months

and it could be another month or two before they get any. I HATE the

DEA for causing shortages every year. They limit how much can be made

each year, but it doesn't stop people who aren't using it legitimately

fro getting it, it stops EVERYONE from getting is a couple of months a

year. The shortage has even extended to Adderall XR (and all generics)

and Ritalin (and all generics, Ritalin shortage is not as bad [only

intermittent], but I can't take Ritalin). Sorry fro going so off topic

and thanks for listening (reading).

Steve M, age 22

On Fri, Jan 6, 2012 at 7:52 PM, Al Bellenfant <albellenfant@...> wrote:

Thank you. I am planning to see her once the new clinic is open. I

have heard nothing but good things about her practice.

On Fri, Jan 6, 2012 at 2:37 PM, Marcia on <mmorrison@...> wrote:

Al,

I'll also mention that I just had my social security disability

application approved recently (after several years of paperwork,

hearings, appeals, etc). A large part of my success was a disability

statement from Dr Klimas, who's located in Miami, Florida.

Although as far as I know she doesn't include biofilm protocols in her

treatment, she does have a broad understanding of ME/CFS in general,

and has the credentials /credibility to support any disability

statement she might write for a patient. It might be worth your while

to see her, if you can manage the expense of the visit and the travel

from Tennessee to Miami. Personally, I wish I had gotten around to

seeing her several years earlier than I did.

Good luck,

Marcia on

in Salem, Massachusetts

[Guest guest]

Steve,

How frustrating your situation must be, to be so far from any doctors

who can help. I know it's only slight comfort, but know at least that

you're not alone in this.

On the positive side (in the longer run), your relative youth puts

time on your side. I truly believe they're making progress on finding

the cause or trigger(s) for this illness, and are getting a better

idea of how to treat it. And people who are young and/or have only had

the illness for a couple years are much more likely to respond to

treatment (and sometimes even recover) than people who are older and

who've had the illness for decades.

There may be ME/CFS-aware doctors somewhere in your area; I hope if

anyone else on this list knows of any, they will recommend them.

Failing that, I'll reiterate what I wrote in an earlier post: I'd

recommend going right to the top and seeing Dr Klimas in Miami,

Florida if at all possible. I drove down there from Massachusetts

(with a friend to help) a year ago October, and then have had two

follow-up appointments by phone. (I'm planning to go back in person

for my next follow-up in about 6 months.) She thoroughly understands

the neuro-immune characteristics of the disease. There may be no cure

yet, but it is such a relief to be treated by people (the doctor and

the clinic personnel) who believe you, respect you, and understand

that you are really, truly ill and not making it up.

This shortage of Adderall and related drugs is just... unspeakably

stupid. I hope they get this straightened out.

Oh, one other thought: have you ever been tested for Tick-Borne

Illnesses (TBI's), for example, Lyme disease? That's a whole other

morass, as those tests are notoriously inaccurate, but it's worth

considering, as the symptoms overlap a lot with ME/CFS.

Hang in there,

Marcia on

in Salem, Massachusetts

On Jan 7, 2012, at 12:57 AM, M. wrote:

> I live in south central Pennsylvania (about 20 miles south of

> burg [state capital]) and there are no doctors who want anything

> to do with CFIDS, much less specialize in it. Rheumatologist says

> Psychiatry or Neurology is responsible, and Neurology says that

> Rheumatology is responsible. I have to go 50 miles for every

> specialist except pain management to find anyone willing to work with

> Medicaid. My pain management doctor is about SIXTY miles away. You can

> bet that I am EXHAUSTED after traveling that far. It is so frustrating

> not knowing what kind of doctor to see! There are Neurologists,

> Rheumatologists, Immunologists, Endocrinologists, anesthesiologists

> (interventional pain management), Orthopedics, and algiatrists (pain

> management). I've seen all of those and SEVERAL more. Until there is a

> specialty called Neuro-immune endocrinologists, no specialty will

> claim CFS.

>

> Can anyone recommend any doctors that specialize in the enigma that is

> CFS/CFIDS? Particularly ones that are in Pennsylvania and/or

> surrounding states.

>

> Has anyone here tried Ampligen? I'm looking into a clinical trial to

> give it a try. I'm so tired and at this point, I'll try anything with

> a chance of working. My wife and I just celebrated our seventh

> anniversary (since we started " dating-dating " ) and we went out to Red

> Lobster. I'm going to sleep ALL WEEKEND and probably most, if not all

> on Monday. HOPEFULLY, I will have recovered by Tuesday. I miss having

> a life. I miss taking my wife to the movies and out to dinner. I miss

> working and being a productive member of society. To make matters

> worse, my pharmacy hasn't had Adderall in stock for about two months

> and it could be another month or two before they get any. I HATE the

> DEA for causing shortages every year. They limit how much can be made

> each year, but it doesn't stop people who aren't using it legitimately

> fro getting it, it stops EVERYONE from getting is a couple of months a

> year. The shortage has even extended to Adderall XR (and all generics)

> and Ritalin (and all generics, Ritalin shortage is not as bad [only

> intermittent], but I can't take Ritalin). Sorry fro going so off topic

> and thanks for listening (reading).

>

> Steve M, age 22

>

> On Fri, Jan 6, 2012 at 7:52 PM, Al Bellenfant

> <albellenfant@...> wrote:

> Thank you. I am planning to see her once the new clinic is open. I

> have heard nothing but good things about her practice.

>

> On Fri, Jan 6, 2012 at 2:37 PM, Marcia on

> <mmorrison@...> wrote:

> Al,

> I'll also mention that I just had my social security disability

> application approved recently (after several years of paperwork,

> hearings, appeals, etc). A large part of my success was a disability

> statement from Dr Klimas, who's located in Miami, Florida.

> Although as far as I know she doesn't include biofilm protocols in her

> treatment, she does have a broad understanding of ME/CFS in general,

> and has the credentials /credibility to support any disability

> statement she might write for a patient. It might be worth your while

> to see her, if you can manage the expense of the visit and the travel

> from Tennessee to Miami. Personally, I wish I had gotten around to

> seeing her several years earlier than I did.

>

> Good luck,

>

> Marcia on

> in Salem, Massachusetts

>

[Guest guest]

Steve there is a FFC (Fibro and Fatigue Center) in Pa----I believe Pittsburg.

Their protocol was a great help to me. Also, Dr. Teitlebaum has come out of

semi retirement, and is consulting. Might do well to go to his web site,

www.endfatigue.com for details.

God Bless,

Sara

> > Al,

> > I'll also mention that I just had my social security disability

> > application approved recently (after several years of paperwork,

> > hearings, appeals, etc). A large part of my success was a disability

> > statement from Dr Klimas, who's located in Miami, Florida.

> > Although as far as I know she doesn't include biofilm protocols in her

> > treatment, she does have a broad understanding of ME/CFS in general,

> > and has the credentials /credibility to support any disability

> > statement she might write for a patient. It might be worth your while

> > to see her, if you can manage the expense of the visit and the travel

> > from Tennessee to Miami. Personally, I wish I had gotten around to

> > seeing her several years earlier than I did.

> >

> > Good luck,

> >

> > Marcia on

> > in Salem, Massachusetts

> >

>

>

>

>