Re: CFS (was sick building symposium conference convention in Los s)

[Guest guest]

, some of your reply extrapolates what I said in a way that is not what I

meant. There are also some assumptions underlying your response.

1. My doctor did not only spend a year studying CFS. I said she received a

prestigious Bush fellowship to DO NOTHING BUT study it for a year. I also said

her practice has focused on CFS and FMS. That means she has been studying and

practicing these issues for years. But I suppose that if you want to equate

" real " studying of these issues to numbers of years that a doctor has done so

without seeing patients, none of the other doctors will add up either. Chaney

and Teitelbaum, etc., came up with their protocols in part through their work

with patients.

2. It's a false dichotomy to set my doctor against the big names like Cheney.

It's not fair to her, and it's not even an accurate way of seeing the picture.

The big names in CFS like Chaney have provided doctor training. And though I

cannot remember which ones she studied with, my doctor began her investigation

into CFS and FMS all those years ago by training with a couple of these guys.

Her study during her fellowship was to investigate evidence-based treatment.

I can't believe really that anyone's questioning my doctor, instead of being

supportive--both of me, in my 15-years-plus quest to recover (complicated now by

living in a WDB) and of my doctor, whose commitment to these issues ought to be

lauded, not disparaged (based on some mighty faulty assumptions). She's an

allopathic-trained doctor who has become more focused on integrative medicine,

and does it within the confines of the clinic system and insurance. She is an

amazing person who does a lot of investigation for her patients on her own time.

She always has a hug for me, and is always up on the LATEST treatment of a

variety of illnesses other doctors would touch. How many have had to travel to

Shoemaker to get his protocol? Not me. My doctor prescribed it to me. How many

have had a physician tell them they may have a leaky gut, and test them for it?

Mine has. So I'll have no more talk about my doctor. This should never have

become focused on her. One comment I made has been blown out of proportion.

3. How am I a case study of one? How strange. Because my doctor has identified a

causation that you (seem to) disagree with, I'm a case study of one. For the

information of any here who cling to toxins as the only explanation of

causation, Chaney also talks about infection. Like Chaney, my doctor never said

there is one causation for all people with CFS. Her assessment is that my CFS is

caused by an infection--the details of which I'm keeping to myself. I would have

shared, had the atmosphere thus far in this thread been one of caring and

support, rather than interrogation.

That doesn't mean that my doctor thinks that everyone's CFS is caused by

infection. And that EQUALLY doesn't mean that I'm a case study of one. Some in

her clinic probably present with an etiology of infection. Others, with other

etiologies. I'm reporting on my experience as her patient. That means I have a

limited understanding of how much she has really done. That means, too, that

armchair critics who have never even met her have an even more limited

understanding.

Anyway, those who have actually researched CFS beyond Shoemaker will have read

that some genetic expressions of the disease have been identified that 1) may

help classify CFS into subtypes and 2) point to some of these subtypes being the

result of infection. Since I cannot access the original report, I'll give this

person's summation: " Many of the abnormal genes are ones that researchers know

can be affected by viral infections, which they believe are a predominant

trigger of many ME/CFS cases. "

(http://chronicfatigue.about.com/od/latestresearch/a/cfs_subtypes.htm)

4. You say, " As far as I know(which is limited) a couple of things have helped,

stem cell therapy, and mold avoidance are 2 of them. " If that were true, Cheney

ought to drop his treatment strategy. So should Teitelbaum. Because neither talk

about stem cell therapy OR mold avoidance (strictly--Cheney talks about toxins

and microbials, though, something Carl and Dr. T should be happy about, since

they have said--and I agree--that we ought to move beyond thinking about just

mold). I include text from Cheney's treatment page below. But note that Cheney's

treatment is just ONE perspective. Others have different treatment strategies.

It's up to anyone who has CFS or is interested to do their own research. An

excellent resource is: http://www.dfwcfids.org

5. Causation does not equal treatment strategy. If it did, medicine would look a

lot different than it does today. That's why your abrupt statement that I'd be a

" case study of one " is so startling to me. Anti-depressants are prescribed

whether the cause of depression is situational, biological, or both--though, as

with CFS, cause is NEVER a certainty, and is murky, and the best any doctor can

do is give an ASSESSMENT of what they think something is caused by. As my doctor

has. You will find that Cheney and others usually don't treat CFS based on

cause. You will find that not ever doctor has the same treatment protocol.

Cheney and Teitelbaum don't, and Cheney's has changed over time. But I will say

that Cheney and my doctor both agree that bacteria, toxins, and especially, the

GUT are huge factors to take into account during treatment.

From Cheney's web site:

Treatment

The treatment of chronic fatigue syndrome can be divided into six major parts as

follows:

1. Symptomatic approaches

2. Treat abnormal or non-ideal lab tests

3. Primary therapy which assumes a known etiology

4. Biological terrain adjustment

5. Treatment of complications

6. Supportive measures

Dr. Cheney believes there can be a measure of success in doing all of the above,

and many good physicians do all or most of that listed above. Success or failure

depends on the patient as well as the strengths of the practitioner.

Symptomatic Therapy

The most important therapy in the area of symptomatic relief is to address the

often severe sleep disturbance of CFS. I use a long-acting benzodiazepine and a

centrally acting antihistamine plus a GABA agonist along with magnesium

injections or magnesium transdermal paste at night. We also use low-dose

transdermal pregnenolone.

The important thing is to not depend on one thing, and to use low doses of many

things given together.

Abnormal Test Results

Abnormal test results can be very tempting to treat, but we have increasingly

moved away from this approach though it can be important depending on what is

abnormal. The single most common area treated here in CFS is hormone therapy,

especially thyroid hormone.

It is our view that hormone therapy, while occasionally dramatic in its effect

clinically, is often a false hope. All too often there is a reason for the

body's internal hormone adjustments that reflects deeper problems, and hormone

therapy interferes with this adjustment more than it is helpful in the larger

context.

Primary therapy which assumes a known etiology

The problem here is that there is no known etiology for CFS, and aggressive

therapy here cannot be long defended. The most common therapies include

antimicrobial therapies, detoxification and/or remediation.

While sometimes helpful, we know of no study of any putative primary therapy

which has been uniformly helpful when used broadly to help or cure CFS. In

large, well controlled studies, such therapies are no better than placebo.

Biological terrain adjustment

From all the way back to medical school, Dr. Cheney has been intrigued by the

power of adjusting biological terrain. An experiment in pH adjustment will

convince anyone of the power of optimizing enzyme function by even a small pH

shift.

It is intriguing when you realize that pH and redox set points are the opposite

sides of the same coin, and that redox set points control cellular energetics.

That said, anything that can control pH or redox can control cellular energetics

and the reverse is also true.

We have been increasingly intrigued with the therapeutic power inherent in

shifting the biological terrain. We use several powerful redox shifters, and

perhaps the most powerful terrain shift approach of all is to directly alter the

genetic phenotype.

This can be done with low-molecular-weight peptides derived from mammalian

tissue extracts called cell-signaling factors, or CSFs. We are presently

investigating CSFs and other approaches to gene expression shifts in an attempt

to alter the biological terrain.

We feel that, along with stem cells which shift the genotype itself, this is one

of the most powerful approaches in medicine today. It is proving more and more

effective in CFS even though we are still early in our understanding of this

mode of therapy.

Treatment of complications

Most CFS patients suffer any number of complications related to CFS. Probably

the most common and the one most in need of addressing is the complication of

gut dysbiosis.

Gut dysbiosis is a term that signifies an altered gut microbial ecology

associated with features of gut motility disturbance, digestive malfunction, gut

immune disruption and food intolerances. It is universal in CFS and must be

aggressively treated though it is not primary. In our opinion the primary

problem is reduced cellular energy and its ubiquitous effects on autonomic

balance, pH balance and redox issues.

Despite its secondary role, dysbiosis may account for most of the symptom misery

of CFS. We employ a relatively old therapeutic approach from the mid-1990s

called the 3-R approach, with a few new twists.

The first R stands for Remove, and we use a broad-spectrum gut antimicrobial

agent for a short period of time.

The second R stands for Repair, and we primarily use colostrum and a pre-biotic

protein mixture.

The final R stands for Replace, and we use a variety of pre-biotics plus a

German derived commensal known as 1917 Nissle strain E. Coli.

We also recommend a modified elimination diet and digestive enzymes.

Supportive measures

Patients are often their worst enemy and fail to remove the stressors that

surround their lives and all too often contribute to their own stress.

We have seen no one improve their CFS in the face of significant stress, whether

exogenous or endogenously applied. Patients are encouraged to get to a place of

peace and tranquility and acceptance of their condition, or they will find a

rough road ahead.

Somehow finding that peace and graciously accepting their fate seems to trigger

the very improvement they turn away from, and the road to recovery becomes less

steep.

Reduction of stress, proper diet and a less toxic environment are the keys to

supportive care.