Re: Procrit, Altitude, Time and C4a

[Guest guest]

My C4a levels were extremely high. They actually went up even higher

after being on CSM. I did however get a lot of symptom relief (joint

pain, muscle ache, digestive issues) from CSM and continue to use it

nevertheless. I wanted to try procrit but my insurance wouldn't cover

it and I was told it is very hard to get on the West coast. A

hemotologist said that even cancer patients can't get it. I have heard

from some patients who tried it that they felt better and others who

stayed the same. I think it depends on what other things you have

going on in the body. I always feel better at higher altitude. I feel

like I have more oxygen which I need because of my oxidative stress

problems and MCS issues. I have read that many people with toxic

exposure feel great at about 7000.

[Guest guest]

I hope the following information helps... Pam

IACFS CONFERENCE HIGHLIGHT - January 2007

The Shoemaker Studies

The innovative CFS physician Dr. Shoemaker has been quite busy of late.

He presented not one or two but three clinical studies. All were

pilot studies that need to be replicated using a more vigorous

protocol – something Dr. Shoemaker plans to do – but all were quite

successful.

Two of them involved EPO or erythropoietin, the drug Dr. Hurwitz used

in his unsuccessful NIH study. We turn to these first. It was

unfortunate Dr. Shoemaker was not given any time to speak.

EPO AND THE IMMUNE SYSTEM

Ritchie Shoemaker and Margaret Maizel. Treatment of elevated C4a in

patients with CFS using low doses of erythropoietin safely

reduces symptoms and lowers C4a: a prospective clinical trial (poster).

One exercise study showed that CFS patients have increased levels of a

powerful pro-inflammatory anaphylatoxic component (C4a) of the

complement response after exercise. Despite its positive result this

study seemed to be doomed to the dustbin of CFS research history as it

has never been replicated and is now only rarely mentioned. Dr.

Shoemaker certainly took notice of it, however, as he reports here that

he has found that levels of the C4a protein have been commonly elevated

in the 1000 CFS patients he has seen. Consider that earlier study

replicated! Erythropoietin (EPO), interestingly, given its function as

a blood volume enhancer, is apparently also very effective at reducing

C4a levels in inflammatory diseases. This lead to Dr. Shoemaker giving

60 CFS patients 8000 units of EPO five times over 15 days and then

measuring their C4a and symptom levels.

The results had an interesting dichotomy; while the C4a levels in all

the patients dropped, about 80% of the patients symptomatically

improved while 20% did not. It turns out that the 20% who did not

improve had exceptionally high C4a levels. Normal C4a levels are below

2830 ng/ml. The responders dropped their C4a levels from 8300 to near

normal, about 3200 ng/ml. The non-responders initial levels were so

high, about 19,500 ng/ml that even substantial improvement still left

them with higher levels than the responders had at baseline (12,500

ng/ml).

In short, it appeared that their C4a levels were too high for the EPO

to give them relief at the dosage given.

What happens after CFS patients get off a drug is almost as important

as what happens when they are on it. Dr. Shoemaker found that 2/3rds

of the responders relapsed while 1/3rd of them did not. This short test

of EPO appeared to fix the C4a problems in the non-relapsed group -

their C4a levels remained low – but did not in those who relapsed –

their C4a levels zoomed up again.

EPO AND THE BRAIN

Ritchie Shoemaker and Margaret Maizel. Treatment of CFS patients with

elevated C4a using low dose erythropoietin corrects abnormalities in

central nervous system metabolites and restores executive cognitive

functioning (poster).

EPO has neuroprotective as well as anti-inflammatory (and blood volume)

properties. There are two ways it protects nerve cells, both of

which are of high interest in CFS; it improves blood flows in the

capillaries and it prevents nerve cell apoptosis or suicide.

Dr. Shoemaker gave the same amount of EPO (5 doses of 8,000 units over

two weeks) to 35 CFS patients and measured the metabolite levels in

their hippocampus before and after treatment. Interestingly his initial

testing found the same thing Nestadt did in his MRS study (see

Brain section); high lactate levels (77% of CFS patients) plus abnormal

glutamate/glutamine ratios (97% of CFS patients).

He found that lactate levels normalized on EPO in all cases and

glutamate/glutamine ratios normalized in just over half. He believes, in

common with Dr. Park, that CFS is characterized by a systemic (central

nervous system) inflammation and that bringing down the

inflammation was the key to the cognitive improvements seen. He did

note that the cognitive problems in his patients were not resolved. Both

Dr. Natelson's and Dr. Baraniuk's cerebrospinal fluid studies may also

suggest CNS inflammation is present.

http://sacfs.asn.au/download/IACFS%20Professional%20Conference%202007%

20IV.pdf

>

> Just looking for folks experience dealing with elevated C4a. If you

> don't feel comfy posting, please email. What was your high C4a level?

[Guest guest]

Sorry. CFS=Chronic Fatigue Syndrome, a specific medical interest of

Dr. S.

I am also interested in this discussion as my C4a went from 11,004 at

the initial Shoemaker appointment and shot to 25,425 after the first

couple of months. He thinks I was re-exposed to mold, so I just had

my house retested. According to the ERMI report there is still some

dangerous stuff here.

I think the re-exposure was the result of my starting to feel better

and then taking on the cleaning out of closets, drawers, etc. where

probably lots of spores were hiding out. The problem was likely that

I didn't get rid of upholstered furniture nor other porous goods.

Didn't wash clothes, etc.

At any rate, more remediation must be done here or I need to move.

Not decided exactly what to do as yet. But this time I have to do it

right... At this point I don't expect my C4a to go down until I get

this resolved.

I hope the following

information helps... Pam

>

> IACFS CONFERENCE HIGHLIGHT - January 2007

> The Shoemaker Studies

> The innovative CFS physician Dr. Shoemaker has been quite busy of

late.

> He presented not one or two but three clinical studies. All were

> pilot studies that need to be replicated using a more vigorous

> protocol – something Dr. Shoemaker plans to do – but all were quite

> successful.

>

[Guest guest]

This is only thing that I have hesitation with regarding Dr Shoemaker

protocols is my conflicting feelings about " anti-symptomatic " drugs.

If inflamation is high, it may need to be for some reason, so using a

drug to lower it is again attacking the symptom, rather than the

cause, which is allopathy rather than naturopathy, or trying to *stop*

what the body is doing, and I believe that everything the body does

has evolved over billions of years to help us survive and aiding it,

is better than suppressing it, except for emergency situations, like

your heart stops, we try to get it going, etc.

Of course CFS people could be at an emergency state but I don't see it

like that yet. Maybe high inflamation is needed for mold exposure and

some infection left in body, so I see inflamation as a signal of still

trouble and the inflamation not good to be stopped but finding the

reason for the inflamation...exposure...infection, etc, resolved.

I'm not well yet so can't claim to know. Just my thoughts. I go along

with the CSM, because it is helping the body do something it tries to

do, speeding it up, detoxing the liver, but an anti-inflamatory or

trying to get the C4a down with drugs, I would be hesitant to do.

--- In , " Pam Gibbard " <pqgibbard@...>

wrote:

>

Shoemaker certainly took notice of it, however, as he reports here

that

> he has found that levels of the C4a protein have been commonly

elevated

> in the 1000 CFS patients he has seen. Consider that earlier study

> replicated! Erythropoietin (EPO), interestingly, given its function

as

> a blood volume enhancer, is apparently also very effective at

reducing

> C4a levels in inflammatory diseases.

[Guest guest]

My C4a was 5887 with normal range of 101-745. He recommended

Procrit but I didn't want to try. I feel a pharmaceutical drug that

had a side effect of suppressing my immune system in 2003 started me

down this troubled path, and afraid to death of them now. Granted

the house was not healthy but before the drug all that was happening

was I was developing allergies. My MSH on test was <8, i.e. bad!

According to what I have heard from others, that would put me in

his 'hopeless' group, although he didn't say that to me of course.

What is the 'altitude' advise? Is this just to move out

of 'valleys', since their isn't good air circulation, or is he

recommending a high altitude to you?

>

>

> Hi,

>

> Just looking for folks experience dealing with elevated C4a. If

you

> don't feel comfy posting, please email. What was your high C4a

level

[Guest guest]

Hi Barb,

The " Reference Range " for C4a on my 7/5/07 report is 0-2830 ng/ml so

not sure if we are apples and oranges here.

I'm also not sure about this, but I gather most (if not all) of Dr. S's

patients have MSH levels of <8, which means they are so low they can't

be measured (my report says the MSH Reference Range is 0-40).

In his books (and in person) he indicates that the patients most

difficult to treat (hopeless??) are those with one (or both) of

the " dreaded " genes. He said that the other factor most relevant to

recovery is the length of the illness - the longer you are ill the more

permanent damage is likely.

MSH <8 is definitely bad, but his protocol is designed to bring it up

to normal. He briefly discussed Procrit (EPO) with me as a possibility

if nothing else works, but we're not to that point as yet.

Pam

> My C4a was 5887 with normal range of 101-745. He recommended

Procrit but I didn't want to try. I feel a pharmaceutical drug that

had a side effect of suppressing my immune system in 2003 started me

down this troubled path, and afraid to death of them now. Granted the

house was not healthy but before the drug all that was happening was I

was developing allergies. My MSH on test was <8, i.e. bad!

> According to what I have heard from others, that would put me in

his 'hopeless' group, although he didn't say that to me of course.

[Guest guest]

Thanks for all the replies on and off list. If I don't thank anyone

directly, please forgive me. I am in pretty dire straights and may

loose net access again very soon.

As far as the altitude thing - residing at high altitude can

stimulate the body to produce more Erythropoietin. Procrit is a

syntheticly produced version of the same substance. Some people do

subjectively improve and some also find that their labs improve

after some time spent at altitude. This may be part of the reason

why sick people have traditionally gone to the mountains to try and

recover from illness. BTW my C4a has been hovering around 12000 and

my other labs are not good - no MSH etc. 8( Guess that is a common

thing around here.

Peace,

S

--- In , " barb1283 " <barb1283@...>

wrote:

> What is the 'altitude' advise? Is this just to move out

> of 'valleys', since their isn't good air circulation, or is he

> recommending a high altitude to you?

>

[Guest guest]

Hi Pam,

I'm not sure why the difference in reference ranges but I do know that

different labs have different ref ranges so perhaps he has changed

labs. My reference ranges were from tests taken by him May 2005.

Reference range they gave for MSH then was 35-81.

Are you sure of reference range for MSH? You gave a reference range of

zero/0-40, which already would be <8.

--- In , " Pam Gibbard " <pqgibbard@...>

wrote:

>> The " Reference Range " for C4a on my 7/5/07 report is 0-2830 ng/ml

so

> not sure if we are apples and oranges here.

>

> I'm also not sure about this, but I gather most (if not all) of Dr.

S's

> patients have MSH levels of <8, which means they are so low they

can't

> be measured (my report says the MSH Reference Range is 0-40).

>

>

[Guest guest]

According to Dr. S Labcorp changed the range from 35-81 to 0-40 for no

apparrent reason. The doctor says that the 35-81 range is the correct

one.

Peace,

S

[Guest guest]

Dr Shoemaker is probably one of few doctor who uses test most often so

all patients taking it may all be low in MSH if only patients being

tested are people who have CFS symptoms, if that is the case.

>

> When I got my results back from Dr. Shoemaker he said that in

September 06, LabCorp changed the range from 35 to 81 to now they say

that less than 40 is normal. His comment was that when hey asked them

why the change? LabCorps answer was that they have so many people with

low MSH they figured it had to be normal...