Re: Massimo

November 6, 2006

Massimo

What can you tell us about Dr Meiler's track record? Are his patients

improving or recovering? Does he share his success stories?

And what is your story and your protocol?

I always wonder about these docs. I mean if they were seeing great results ..

wouldn't we hear about it ... one way or another?

I know I paid $1,300 to see charles Lapp (who used to work with Cheney) and I

thought it was a waste of time and money. He told me to take a tiny dose of B12,

some vits, up my sleep meds and live " within the envelope. "

Never even mentioned the stealth virus thing.

thanks for sharing

Louella

*Massimo <maxupolo@...> wrote:

Anne, sorry but I did not get a little detail: are you 21 or you have

been ill for 21 years?

Were you ill when you became pregnant or you had your children after becoming

ill? Any good or bad effect on your illness?

Thanks a lot for your useful informations.

Massimo

Re: Does anybody here work?

I was working 60 - 70 hours a week prior to becoming unwell.

Since then, at the recommendation of my doctor I've usually worked

20 - 30 hours a week. (I worked in our family business, limited and

flexible hours. It worked best for me to pace myself evenly and work

5 or 6 hours every day.)

Currently, I have a two year old and a four year old and though

incredibly rewarding, I find being at home with them full time as

strenuous as any job I've had before!...No commute time though, so

that's a bonus!

Anne (CFS/FMS 21 years)

>

> I was wondering if anybody here was able to go back working, or

never stopped, 5 or 6 days a week on normal shifts ( 8 or 9 hours a

day).

>

> Could you tell me your experience?

>

> Thanks a lot, cheers.

>

> Massimo

>

November 6, 2006

Dear Louella,

I can briefly tell you that I have been ill since July 2005, and I am a patient

of Prof. De meirleir since July 2006.

At first, as many others, he tests you with dozens lab tests to see what could

be, eventually and if there is one, your underlying disease that caused you to

suffer for CFS. Also, he tests the Rnase L activity and coefficient of LMW which

by some are considered a sort of markers for CFS.

Then, after a month or little more, he sees you giving you an explanation for

your CFS and for every single symptom that you experience.

To me, he said that my gut problems were caused initially by an entoamoeba

hystolitica which was not detected at the microscope exam but turned positive at

the EIA test. Also, he found that I have fructose malabsorbtion (he always tests

for lactose and fructose malabsorbtion), and this explained why I felt much

better when on a low carb/sugar diet.

I had the Rnase L activated which, to him, showed a presence of a virus. I had

CD4s at the lower end range which simply confirmed this.

I also had slightly elevated levels of Elastase which showed an inlammation

(don't know if it's the correct word). And also the Nitric Oxide serum levels

were high.

He prescribed many different things and in high doses, but I can tell you that

the protocols are so much different from one patient to the other that I really

believe he studies carefully all the lab tests of each patient before designing

a suggested (I repeat, suggested) treatment. In the treatment I had antibiotics,

one anti-viral, many vitamins in very high doses, detox supplements (I turned to

be nickel sensitive which fits into the picture of an intestinal disbiosys),

digestive enzymes.

I don't want to mention honoraries, but please believe me that he is among the

most honest doctors I have seen in my life.

He carefully assists you during the treatment and usually meets with patients

every quarter (his treatment last 3 months before correcting or changing them).

He doesn't tell of any success story or failures, but one thing he does when

asked he tells prognosys and the time you will need to recover or, at least, to

plataeu the symptoms you have and go back to a pretty normal decent life even if

not as it used to be. And most times he is sincere in what he tells you. I know

of people who were told one year, 5 years or even 10 years.

He replies to e-mails, not happily (he has approximately 3.000 patients), but he

does, especially when they are urgent (I once had to lower the dose of one

medicine because I reported bad side-effects and he came back on this the day

after my e-mail).

And Louella, I know what you mean when you stated what happened to you with Dr.

L--p: it happened to me three or four times, I spent huge amount of money on

things that did not help me at all and in visits that last less than 10 minuts

in which they simply told me nothing that I did not know already.

How are you doing now? Are you better than before? Same?

God bless!

Massimo

Re: Does anybody here work?

I was working 60 - 70 hours a week prior to becoming unwell.

Since then, at the recommendation of my doctor I've usually worked

20 - 30 hours a week. (I worked in our family business, limited and

flexible hours. It worked best for me to pace myself evenly and work

5 or 6 hours every day.)

Currently, I have a two year old and a four year old and though

incredibly rewarding, I find being at home with them full time as

strenuous as any job I've had before!...No commute time though, so

that's a bonus!

Anne (CFS/FMS 21 years)

>

> I was wondering if anybody here was able to go back working, or

never stopped, 5 or 6 days a week on normal shifts ( 8 or 9 hours a

day).

>

> Could you tell me your experience?

>

> Thanks a lot, cheers.

>

> Massimo

>

November 6, 2006

Thanks for your reply massimo.

I will follow your progress with interest. What anti-viral did he use on you..

and were you on the antibiotics at the same time? Or, at least, was there a

period of overlap?

My story: I developed CFS in my mid/late 20s wehn the doctors stupidly gave

me antibiotics for a very severe viral infection. Struggled for 10 years on

sleep meds and a low dose SSRI.

Had to give up work at the end of 2004. Finally making progress on transfer

factor and glutathione, B12 and lots of supps. Slow progress tho. Being treated

by Joe Brewer, an infectious disease doc in Kansas City, MO, but his protocol is

v. limited compared to de Meileir's or the FFC.

Be well

Louella

*

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November 27, 2006

Thanks for this! Do you know if there are certain viruses that he is finding a

lot in CFS

patients, and if so, which ones they are?

> >

> > I was wondering if anybody here was able to go back working, or

> never stopped, 5 or 6 days a week on normal shifts ( 8 or 9 hours a

> day).

> >

> > Could you tell me your experience?

> >

> > Thanks a lot, cheers.

> >

> > Massimo

> >

January 4, 2007

Massimo, do u have some medical training? You sound like you speak with some

authority. Just curious.

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

Access over 1 million songs - Music Unlimited.

January 5, 2007

Not myself, but my mom is an MD and she checks every single hypothesis that I

read on the official papers or over the Internet on CFS.

When I read about the PFO heart dysfunction I wanted to be tested right away,

and so I did. The result was negative.

But this is true also for many other patients. That's the reason for I believe

that an eventual PFO problem is not CFS related, but of course it does not help

a patient if he/she has that.

Massimo

Re: Massimo

Massimo, do u have some medical training? You sound like you speak with some

authority. Just curious.

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

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January 23, 2007

Go Massimo! (sorry i'm in NFL mode...its Bears fever here in Chicago). Hope this

lead pans out. Cheers, Louella

karenbstiffler <thedesigndiva@...> wrote: Massimo - Best of

luck to you and my thoughts and best wishes will

be sent your way. Take good care...

>

> Dear friends,

>

> I wanted to let you know that I will be away for a 5 days staying

in the CFS clinic of Chieti here in Italy, therefore I won't be able

to reply to any message for the next 5 days.

>

> Please think of me and wish me good luck! ;-)

>

> I will write back soon with all the news I will bring from the

visti.

>

> Hugs to everybody!

>

> Massimo

>

May 13, 2007

Yes, but only where there is a clear deficiency. And also, not applied to CFS,

we react in very different ways compared to healthy people who are only lacking

vit. D.

Massimo

Dr Holick recommends a big weekly dose tp remedy a defieciency.

wallace

Vitamin D:

The Underrated Essential

Researcher F. Holick, M.D. shares

his insight into this overlooked necessity

Despite being one of the most crucial components of healthy bones, a

protector against cancer and diabetes, and a valuable component of

the immune system, vitamin D has gone largely unnoticed in the

public eye. To uncover some of the benefits of this underrated

nutrient, Life Extension spoke with Dr. F. Holick, a vitamin

D researcher at Boston University's Medical Center and the author of

The UV Advantage.

Life Extension Foundation: What is the role of vitamin D in the

human body?

Dr. Holick: Vitamin D has a multitude of effects, the

principal of which is the development and maintenance of bone health

from birth to death. In people who are vitamin D deficient, you will

see a wide variety of bone disorders, such as osteoporosis and

osteomalacia-the inability to mineralize bone, causing pain and

weakness.

But while its effect on bones may be its most commonly known

property, vitamin D also has many other subtle but very important

functions. For example, it reduces the risk of diabetes and certain

forms of cancer including ovary, breast, colon and prostate; it has

been shown to improve hypertension; help psoriasis; and it

drastically reduces the risk of heart disease. There are even some

studies that link Alzheimer's disease, depression and multiple

sclerosis to low vitamin D levels.

LEF: How critical is vitamin D for bone development in children?

Holick: In children, vitamin D is critically important. Without it,

you'll have growth retardation, rickets and other skeletal

deformities. In fact, rickets-once considered a disease from a

hundred years ago-is on the rise. Why? There is not enough vitamin D

in breast milk. Children in particular need to get more vitamin D.

LEF: How does the average person get a sufficient supply of vitamin

D?

Holick: Sunlight is a crucial factor in maintaining proper levels of

vitamin D. It's so important that our body-our skin-makes vitamin D

when exposed to UVB radiation from the sun. Studies have shown that

between 80% and 100% of the daily requirement for vitamin D comes

simply from being in sunlight for about 15 minutes a day. One

problem with that is, according to modern perception sun exposure

is " bad " because of the risk of cancer. We stay indoors more often,

wear sunscreen-things that don't allow us to get the proper amount

of sun. The bottom line is, the public needs to be aware that

adequate sunlight is an important part of good health.

LEF: Some people just don't have the ability to get adequate

sunlight. Are there any foods that are rich in vitamin D?

Holick: Herein lies the problem-not many. Few foods actually contain

any appreciable level of vitamin D naturally. Certain fish, like

mackerel and salmon have some, as do oils from fish like cod, shark

and tuna. Meats and egg yolks also have some vitamin D in them, but

very little. Of course fortified milk has vitamin D, but the amounts

in every container are highly variable-it simply might not have as

much as the label says that it does. Besides that, in order to get a

high enough level of vitamin D from milk you would have to drink

about 10 glasses of it every day. That's a lot of milk.

LEF: What about tanning salons? Can your body make vitamin D from

the light of a tanning bed?

Holick: Yes. Research has shown that certain types of low pressure

lamps supply UVB radiation-which is exactly what you need to make

vitamin D. But not all places use those, so you have to check first.

LEF: Who is most at risk for having a vitamin D deficiency?

Holick: While anyone who doesn't get enough exposure to sunlight or

supplement their diet is at risk, studies from the Center for

Disease Control (CDC) have shown that African Americans suffer from

vitamin D deficiencies the most. As many as 42% of all African

Americans ages 15 to 45 have low levels of vitamin D. In fact, they

need five to ten times more exposure to make the same amount as a

caucasian because the melanin is a sunscreen.

People who live at higher latitudes are also at high risk for being

deficient. We just completed a study in Boston which showed that 36%

of young adults ages 18 to 29 had insufficient levels of vitamin D.

Our subject pool was that of local medical school students and

hospital residents whose work or studies limit their exposure to

sunlight. The bottom line here is, people-especially if they live in

the north or spend most of their time indoors-need to find ways to

get outside and replenish their levels of vitamin D.

LEF: How critical is vitamin D to the functioning of the immune

system?

Holick: In terms of the immune system, vitamin D has extremely

important, yet subtle effects. For example, studies have shown that

people at higher latitudes have a higher rate of multiple sclerosis

(MS)-possibly due to deficiency in vitamin D. In fact, several

animal models have shown that with animals that can be induced with

MS, they will not get MS if treated with vitamin D beforehand.

Another study in Finland found that proper levels of vitamin D

actually reduce the occurrence of Type 1 diabetes in children by

about 80%.

LEF: How do vitamin D supplements fit into all of this?

Holick: Supplements can be an excellent source for vitamin D. The

problem is, many people only take a multivitamin and if you're

already low in vitamin D, your body needs more than the 400 IU it

can get from a single multivitamin. While 400 IU may be fine for

some people, those who do not have adequate sun exposure need more-

about 1000 IU a day to satisfy their body's requirement for vitamin

D. Some moderately deficient people may benefit from even higher

daily doses, but I'd say, 2000 IU is the safe upper limit.

In extreme cases of vitamin D deficiency, some patients will need to

get a prescription to take very high doses 50,000 IU/week for eight

weeks. Why? If you are extremely deficient, taking 400 or even 1000

IU a day would be like putting in a gallon of gas into an empty car

it won't get you very far. You need to fill up your tank to get the

necessary amount.

LEF: Would you say that vitamin D is an underrated vitamin? Why?

Holick: Yes, it is definitely underrated-we simply take it for

granted because it is a factor in our everyday lives. However,

vitamin D is critically important for maintaining normal calcium

levels in the blood and for bone health. Not only that, but we have

found that if blood levels of vitamin D are good, it reduces the

rate of colon cancer by about 50%. In short, vitamin D plays a

crucial role in many metabolic functions as well as neural, cardiac

and muscle function.

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