Re: Re: Am I missing something?

[Guest guest]

On Sep 6, 2006, at 9:04 PM, crowe300 wrote:

> Other respected docs recommend Thymic Protein A. Both

> Transfer Factor and Thymic Protein A are expensive. If you decide to

> go the Thymic Protein route, I have found the best price at:

>

> http://www.naturedoc.com/products/proboost-thymic-protein-a.html

>

> You would need to take 3 packets a day. With transfer Factor, I

> believe you would take 3 pills a day for 3 months, and then 2 a day.

I'm a ProBoost partisan myself -- but not everybody can tolerate 3

packets a day. This one is VERY individual as to dosing: some of us

can't handle more than half a packet every other day; others can go

to 3 or even 4 per day. You really need to play with it to see where

you fall.

It's not cheap -- but it's also not expensive compared to a lot of Rx

drugs they try to give us that don't do as much. Your source sells

for the same as mine -- and it's also the lowest I've seen on the Web

-- but yours ships for free! Thanks for the tip. I've bookmarked it.

> You might want to get your hormones, adrenals and thyroid checked out

> as well, since they are often out of wack in CFS.

Hmm. FFC docs typically do hormone, adrenal, and thyroid workups, and

all the viral tests besides, as part of their usual routine. And

ProBoost seems to be a big favorite with them as well.

Sara

[Guest guest]

Thanks for taking the time to write Chris. I'll ask my doc about those for sure.

I've had my adrenals thyroid hormones checked, and I'm taking DHEA, T3, T4

Thyroid Extract and adrenal support. I've only been on them this year. I suppose

it takes time for it all to pull together. Thanks again,

Re: Am I missing something?

,

The only reason to test for CMV would be if there was a specific

anti-viral drug that was effective against it. I tested pos for EBV,

HHV6 and CMV, but my doc said there wasn't anything that works great

against CMV anyway. I decided against anti-virals regardless and I

have been able to keep them in check with Transfer Factor and

Lauricidin. You might want to just assume you have it, and get a

transfer factor that also targets CMV (there are many different

kinds). Other respected docs recommend Thymic Protein A. Both

Transfer Factor and Thymic Protein A are expensive. If you decide to

go the Thymic Protein route, I have found the best price at:

http://www.naturedoc.com/products/proboost-thymic-protein-a.html

You would need to take 3 packets a day. With transfer Factor, I

believe you would take 3 pills a day for 3 months, and then 2 a day.

Other people take immune modulators, like ImmuneCare 64 or Immune

Suppert 26 instead. I have not taken either of these, so I can't give

you an opinion.

You might want to get your hormones, adrenals and thyroid checked out

as well, since they are often out of wack in CFS.

Good luck!

Chris

>

> I want to convince my doctors that I need some more tests. Their

reasoning when I've brought up the subject is pretty much, " well we

know you're got CFS " accompanied by a glazed look. I was tested for

the usual suspects EBV (positive) HHHV6B (positive) ricketsia

(negative - but apparently the test is unreliable as the little bugs

showed up in tissue of a woman previously tested negative) and that's

about it.

> I'd like to be tested for CMV and maybe a few other things but what

is the point?

> Antibiotic therapy would be out of the question for my body.

> Are there things I can sensibly ask to be tested for, which would

lead to additional treatments which might make life more comfortable

for me?

>

>

>

[Guest guest]

Thanks Sara, can you tell me what FFC is?

Re: Re: Am I missing something?

On Sep 6, 2006, at 9:04 PM, crowe300 wrote:

> Other respected docs recommend Thymic Protein A. Both

> Transfer Factor and Thymic Protein A are expensive. If you decide to

> go the Thymic Protein route, I have found the best price at:

>

> http://www.naturedoc.com/products/proboost-thymic-protein-a.html

>

> You would need to take 3 packets a day. With transfer Factor, I

> believe you would take 3 pills a day for 3 months, and then 2 a day.

I'm a ProBoost partisan myself -- but not everybody can tolerate 3

packets a day. This one is VERY individual as to dosing: some of us

can't handle more than half a packet every other day; others can go

to 3 or even 4 per day. You really need to play with it to see where

you fall.

It's not cheap -- but it's also not expensive compared to a lot of Rx

drugs they try to give us that don't do as much. Your source sells

for the same as mine -- and it's also the lowest I've seen on the Web

-- but yours ships for free! Thanks for the tip. I've bookmarked it.

> You might want to get your hormones, adrenals and thyroid checked out

> as well, since they are often out of wack in CFS.

Hmm. FFC docs typically do hormone, adrenal, and thyroid workups, and

all the viral tests besides, as part of their usual routine. And

ProBoost seems to be a big favorite with them as well.

Sara

[Guest guest]

On Sep 7, 2006, at 10:34 AM, crowe300 wrote:

> It sounds like you are on the right track. Have you thought of

> approaching this from a different angle - instead of running a bunch

> of tests, which will run into the thousands with a very predictable

> result, choose a treatment program first, and then decide which tests

> will help you get the best result out of the program? PWC's seem to

> test relatively similiarly - sub-optimal NK cell count, sub-optimal

> CD4 cell count, etc. If the tests didn't show this, you wouldn't have

> CFS! I have found that there are a lot of opinions on what causes

> CFS, but very little controlled studies on what helps. I.E., for

> people that try the Marshall Protocol, why did person A improve,

> person B stay the same, and person C decline?

>

> Some doctors, like Lerner believe CFS is viral in nature and will want

> to treat you for all of the viruses you have. Othere, like Dr. Ali

> believe CFS comes from oxidative stress and focuses on correcting the

> stress damage to your cells. Still others rotate anti-biotics to

> treat you for all of the infections you may have.

This is the approach FFC takes -- their doctors work several angles

at once. They do start with a huge battery of tests to figure out

which problems will be the most productive to focus treatment on, and

then take off from there. No point in giving ProBoost to people who

don't show major signs of viral load, after all; or hormones to

people whose hormones are in pretty good shape.

Sara

[Guest guest]

There's wide variety between the clinics, . It sounds like yours

was awful.

Could you tell us which office and doctors this was, so others will

know to stay away?

Sara

On Sep 7, 2006, at 12:16 PM, steep_mountain wrote:

> Sara,

>

> I decided I would give FFC a try because I was anxious to get to 100%.

> I am extremely unhappy with them, and going to discontinue treatment

> as I felt they were dangerous to my health. Maybe I got a bad doc,

> but I will outline my experience:

>

> 1. They put the protocol over the patient, and were unwilling to

> modify the protocol to meet my wishes. Every time I questioned

> something they prescribed, the answer was always the same, " you really

> need this " . They never gave me any additional information to convince

> me they were correct. As an example, they prescribed me 25 mg of

> cortisol. I balked and said that I have read studies that show

> anything over 20 mg is damaging to the immune system. I wanted to

> talk about starting off on 5 mg, or trying Isocort first, but my doc

> wouldn't listen. We actually argued about this, to my disbelief.

>

> 2. As a subset of point 1, they whole program is set up for little

> patient involvement. After they ran 25 tests on me, they only

> scheduled 30 minutes to discuss every test with me and charged me

> $390! During this 30 minute conversation, they prescribed Valtrex,

> Heparin, Diflucan, Cortisol, T3, Testosterone, plus a bunch of

> supplements. I said I had a bunch of questions on these treatments,

> and the doctor told me I would need to schedule another $390 call and

> that I was taking up too much time and being inconsiderate to his

> other patients!

>

> 3. The doc knew enough to be dangerous about CFS, but not completely

> informed. I asked to do a tilt table test, but he wouldn't do it

> saying my blood pressure indicated I didn't have NMH. Well, I have

> the Hopkins study on NMH that explicitly states you can ONLY

> determine NMH with a tilt table test and blood pressure indicated

> nothing. After I researched the results of my coagulation tests, I

> determined that my tests indicated I suffered from hypercoagulation,

> not hypo, and Heparin wouldn't help me. This is from information on

> testing published by Hemex. In fact, I think he didn't order enough

> coagulation tests to make a determination. He should have ordered the

> complete panel from Hemex, which leads to another complaint:

>

> 3. They only order tests from Quest Diagnostics. I think it is

> widely known that there are better labs for certain specific tests

> like mycoplasma, parasite, etc.

>

> 4. Like of controls in place to monitor patient. After prescribing

> me Heparin and T3, he never told me to monitor anything like daily

> temp and pulse for T3, or platelet count for Heparin. Even the Hemex

> web site says you should closely monitor platelet count when you first

> start treatment. In fact, when I questioned him about the safety of

> Heparin, the doc said it was " completely safe " . Even Dr. Tietelbaum,

> who is now the medical director of FFC rarely prescribes Heparin

> because of his concern for its safety. He says this on his website.

>

> Maybe their protocol would in fact help me, but the bottom line was

> their style didn't mesh with mine. Anyway, I will be searching for a

> new doctor.

>

>

>

>

> --- In , Mercuria <mercuria@...>

>>

>> This is the approach FFC takes -- their doctors work several angles

>> at once. They do start with a huge battery of tests to figure out

>> which problems will be the most productive to focus treatment on, and

>> then take off from there. No point in giving ProBoost to people who

>> don't show major signs of viral load, after all; or hormones to

>> people whose hormones are in pretty good shape.

>>

>> Sara

>>

>

>

>

>

>

>

>

> 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

I've had a look at the protocols several times, as well as read Cort's

informative newsletter - and I've been drawing pictures trying to make sense of

it all before I see the doctor today. Now she's into the idea that if she can

fix up my hormones hey presto no cfs (I should add that when I said I had CFS

she asked, " what's that? " Not promising.) I want to get her to run a couple of

tests in time for my appointment with my other doctor, whose protocols are very

similar to the ones I read about, though his treatment (supplements, IV's,

chelation) hypothesis is based on the notion that all my problems are because

I'm mercury poisoned, that chronic fatigue is merely a symptom. He's open to new

ideas though, so if I can get something out of the doctor today in time for the

visit with him we might have something to talk about.

For instance, I was reading about methylators. I think - according to what

works and doesn't work, and my symptoms, I'm an under methylator.

Folate, Choline and B12 do wonders for me, but MSM wipes me out. I'd like to

understand more about why that is so.

My diet since the early eighties has been sugar, yeast, additive free, avoiding

certain foods that my body doesn't like. Our house is chemical free (I have

MCS). I rest, and meditate,avoid stress if possible. (This meant giving up a

stressful job, replaced now by the stress of being without that income. :-) )

When I can I go walking, do yoga, stretches.

I'm taking a zillion supplements, hormones, and anything I can get my hands on

which will help me sleep. (currently 10mg melatonin, Stilnox, Chinese herbals).

I feel that I'm doing a heck of a lot to get myself better. And yet I have had

periods where I felt much better and took very little in the way of supplements

and hormones. I think subsequent viral invasions have worn the bod down a bit,

as has stress, but I'm a determined woman. I figure I'm 55 now, plan to live

much longer, so I can spare a little while longer on CFS. I am however, short on

patience.

Thanks for all your comments they are food for thought, and give me a

little hope.

All the best from Oz

Re: Am I missing something?

,

It sounds like you are on the right track. Have you thought of

approaching this from a different angle - instead of running a bunch

of tests, which will run into the thousands with a very predictable

result, choose a treatment program first, and then decide which tests

will help you get the best result out of the program? PWC's seem to

test relatively similiarly - sub-optimal NK cell count, sub-optimal

CD4 cell count, etc. If the tests didn't show this, you wouldn't have

CFS! I have found that there are a lot of opinions on what causes

CFS, but very little controlled studies on what helps. I.E., for

people that try the Marshall Protocol, why did person A improve,

person B stay the same, and person C decline?

Some doctors, like Lerner believe CFS is viral in nature and will want

to treat you for all of the viruses you have. Othere, like Dr. Ali

believe CFS comes from oxidative stress and focuses on correcting the

stress damage to your cells. Still others rotate anti-biotics to

treat you for all of the infections you may have.

Have you looked into the various protocols at at this web site?

http://lassesen.com/cfids/protocols.htm

Ths sample sizes are small and I suspect it suffers from

self-selection bias, but it is a great place to learn about treatment

options.

I only recently learned about these protocols, but I am 85% recovered

from CFS through simply removing the stressors on my body and changing

my diet. I went through extensive allergy testing and removed all

allergic foods from my diet and corrected the environmental allergies

(dust mite protection on bedding, etc). I also got off the western

diet and eliminated all sugar and white flour, and started to eat more

healing foods. I only use Aubrey natural products for body care and I

got a Vitamin C filter to remove the chloramines from my shower.

I have no idea what may work for anybody else, but that is my story

and 2 cents!

Good luck and please let me know what you decide and how it is working.

Cheers,

Chris

>

> Thanks for taking the time to write Chris. I'll ask my doc about

those for sure. I've had my adrenals thyroid hormones checked, and I'm

taking DHEA, T3, T4 Thyroid Extract and adrenal support. I've only

been on them this year. I suppose it takes time for it all to pull

together. Thanks again,

[Guest guest]

there should be a lot more. Just the people that call me within Ga and SC for help( probably 2-3 a week) with new cases---I urge them to file. Multiply that times other states and cities. My guess is that there are lots of new ones with very young toddlers. maurineRmoffi@... wrote: Gus writes: PAGE 5In recent weeks, there have been a number of reports in the

media concerning a certain Vaccine Act case, currently pending before the court. Some of those reports have erroneously stated that the Office of Special Masters has recently issued a "decision," "opinion," or "ruling" concerning the issue of whether a Vaccine ACt claimant's autism symptoms were caused by one or more vaccinations.http://tinyurl.com/2xbht4 ------------------------------------------------------------------------------------------------- The Special Masters write: A. Number of cases at this time, about 4,900 petitions in autism cases remain pending, stayed (at the petitioners own request) until the conclusion of OAP. Additional petitions continue to be filed (italics

added) The public has a right to know how many "additional petitions have been filed" in addition to the 4,900 already pending.. Planning your summer road trip? Check out AOL Travel Guides.

You rock. That's why Blockbuster's offering you one month of Blockbuster Total Access, No Cost.

[Guest guest]

,

It is always nice to hear good news. And as you know, the PT is so important.

Enjoy your new hip.

Pat in Pennsylvania

Bilateral TKR August 2010

Re: Am I missing something?

Haven't been on here much since I went back to work (5/23) after my THR

surgery (4/21). Just incredibly busy getting back into real life.

My recovery has gone very well although PT is getting much more intense as of

the 8 week mark.

I'm thrilled with the progress so far.

Chicago, IL

THR 2011

[Guest guest]

Congrats ! I'm at my 14th week of recovery and finished PT at the

12 week mark. I accelerated to the most difficult exercises they had with

the highest resistance band available. It does get easier in the last few

weeks of PT. I'm now working at stepping up my program a bit to be more in

line with my pre surgery weight training. When I hit the four month mark on

August 1st I really hope to be back 100%.

On Tue, Jun 21, 2011 at 6:28 PM, s <

crexjacobs@...> wrote:

> **

>

>

> Haven't been on here much since I went back to work (5/23) after my THR

> surgery (4/21). Just incredibly busy getting back into real life.

>

> My recovery has gone very well although PT is getting much more intense as

> of the 8 week mark.

>

> I'm thrilled with the progress so far.

>

>

> Chicago, IL

> THR 2011

>

>