My treatment plan, was probiotics (long)

[Guest guest]

> From: " Dr. Steve " <moores@...>

>>

>

> > I am a little confused by your post. Could you briefly outline

> your total treatment program -- it sounds different from what the

> average CFSer get.

> Steve

Steve,

Oh, ugh. You really want to know? I'll try, in no particular order, though I

really don't think it's that different.

dioxychlor iv's (in rounds of 4, until I'm clear), for chlamydia, yeast and

suspected mycos

nutritional IV's called myers cocktail whenever I want, usually weekly--they

have Vit C, B vit's, magnesium (I have them put in extra), and I have them

add glutathione when I'm up for the inevitable detox headache which follows.

Clear, an herbal supplement to get rid of parasites

a variety of amino acids based on results of blood and urine amino acid

profiles. Those also changed my vitamins: eg, I was high on amino acids

which use B6 to metabolize--indicating there wasn't any B6 there for them to

use, so I take P5P, which is what B6 turns into next--Cheney claims PWC's

turn B6 into ammonia. Also, glutamine for intestinal health.

arginine/ornithine for muscle tone

wellbutrin (antidepressant)

Armor thyroid. Tested for estrogen, progestin, testosterone, all normal.

DHEA (had test for that, too)

NADH--10mg, thinking about going up to 15.

The usual vitamins, with lots of Vit C (I like EsterC and the calcium in it

balances all the magnesium I take) and magnesium (I'm consistently low on

magnesium, which is remarkable considering I get so much in the weekly IV).

Colloidal minerals. Chromium, 400 mg. Folic acid, 2 mgs. MSM for recent

joint inflexibility (just started). CoQ10--200 mg

used nystatin for awhile, but not now (anti yeast)

Flexeril for sleep

had cortisol test, which was very whacked out. I took a small dose NSAID for

that, but it was messing up my intestines, so I stopped. I'm not supposed to

eat carbs after 7 pm. Dream on.

probiotics

flax seed oil (no more menstrual cramps--like a miracle--esp'ly as I used to

have to take ibuprofen, which messed up my intestines). As far as I can

tell, evening primrose oil did nothing for me.

I'm supposed to get gut permeability test every 6 months from Great Smokies,

but I've been refusing, because I know I haven't improved.

chlorella and spirulina to chelate mercury--I test high on mercury, and

repeat the heavy metals test every once in a while. I'm currently taking a

break from DMSA, an oral chelating agent, because it was making me so tired.

ages ago I had the Great Smokies detox test that people have been talking

about, but I'm not sure that it led to any changes in my treatment.

Trental, a prescription, to improve RBC health. This has helped me alot.

Should help with hypercoagulability, too.

B12 shots--I have tremors w/out them. I also used kutapressin for about a

year. I think it helped at first with the intense flu-y-ness, then it didn't

seem to be doing anything. I couldn't tell a difference when I stopped.

milk thistle because I have liver stress. (can see " spicules " on the

microscope exam--my liver function tests are normal). If I can just get

organized, I'll try the lemon/olive oil drink, too.

digestive enzymes after meals and Betaine HCl before. Ginger and peppermint

teas in the evening, esp'ly if I overate.

NAET treatments for food sensitivities. Previously I had a lab tell me

exactly what I was sensitive to (Alcat test) and I did not eat those foods

AT ALL for 6 months, while I rotated all other foods. I think this helped me

a little, but the NAET seems to help more, even though it doesn't make sense

(related to homeopathy).

Imuplus, as much as I can, because I'm allergic to milk protein, and if I

take too much, I start itching intensely all over my body. The NAET

treatments have eased some of this, and I hope will do more as I continue

with them.

lots of fresh juices and the typical no-sugar no-wheat diet (I'm not very

good at this part of the protocol, but I'm working on it).

meditation and yoga when I feel well enough. massages every other week. I

had them every week when I was basically too sick to move and had more FM

pain. Now I have very little pain--I think the massage helped there, but

only over a long period of time. At first I got the massages so I could do

something nice with my body for a change (it was hard for me to give up

exercise), but I think in the end, they helped me feel better, too. Oh, yes,

I used to take malic acid for pain. It might have helped a little.

I tried accupressure for about 18 months, until the guy molested me. I'd say

that about undid any good he'd done me up to that point. Still gives me the

creeps just to think about it (like we don't have enough to worry about

already).

Keeping up with my kids and dogs as much as I can and resting when I can't

(it helps that my youngest is now 10--it was a very different story when I

first got sick)

Reading, journalling, music, wonderful husband, friends and family for

support (and of course you guys--if you're not posting too much! <grin>).

Psychotherapy to help with the marital stress from this DD.

A full-time housekeeper to do the cooking, cleaning and driving.

A wonderful, intelligent doctor who listens and believes and keeps up with

the research and knows about traditional treatments but is willing to try

some alternatives as well. And, he hires great nurses, which also helps.

A really fun car to take me to doctor's appts.

I refuse to get viral titers and immune system tests like NK, etc. I'm very

much a person who gets overwhelmed and down when numbers look bad. Since I'm

trying to avoid medications in favor of natural support of healing, I

decided to forego these tests. I know I'm sick. I don't need more reminders,

especially not ones I would worry about. Just me and my personal paranoia,

if you know what I mean. I'm fascinated by what you all write about these

tests.

I hope you don't mind I ended up posting the non-medical stuff. It's more

important to me than all the pills, it just seemed dishonest not to

acknowledge it. And, my doctor says none of it will do any good if I'm not

eating right (the part I find the hardest).

Obviously, I am very blessed to be able to afford all of this, including the

household help. I think if I couldn't afford it all, I would give up the

supplements first and the housekeeper last. The most important part of my

sanity and survival has been the ability to say, sorry kids, Mom's going to

go lie down for a couple of hours, and know that someone will get dinner on

the table and keep them from falling in the pool while I'm asleep.

I think that more than covers it. (It'll be a miracle if anyone actually

reads this far. If you have, you might need to go rest now before doing

anything else)

in North Carolina

***It's like wrestling a gorilla. You don't quit when you get tired. You

quit when the gorilla gets tired.***