Re: feedback, please

[Guest guest]

Forgot to mention that she's now 18, will be 19 in May. She's been

nearly bedbound for the last 2 years. Still looking for something

treatable, of course.

Val

[Guest guest]

Sorry to hear about all that

That is indeed alot of tests. For the babesia and lyme tests, if I

were you I'd be interested in who is doing them, very possibly. You

might know, only 2 labs are used for lyme testing by ILADS doctors.

Totally seronegative lyme does look like a possibility too - I'm not

totally sure.

You mention lyme WB and also lyme IgM, IgG - but WB comprises both

IgM and IgG so I'm a little confused about what that means?

For babesia there are FISH, PCR, antibody assays, etc and they may

have different sensitivities and specificities... also, if there is

a chance of exposure to western NA or European babesias such as

divergans, WA-1, CA-1, MO-1 (I guess its at least a remote

possibility cause of the blood tranfusion) I dont think the B.

microti tests are sensitive to those. I would throw in a babesia

direct detection assay - ie, just plain looking for it under a

microscope with a simple stain - a test which has a markedly low

sensitivity unless one happens to have a high % infection like I

guess 0.5 or more, but has the advantage that all species are

detectable. And I dont believe its very expensive.

Working with the candida, chlamydia, and viral stuff I dont know

much about.

Maybe I'll think of more comments later... chemistry test is

breathin down my neck right now.

[Guest guest]

Hi Val,

It does look like a very thorough starting place to me! They may add

GSDL's Detoxification profile and/or other metabolic studies when

they get some of these tests back.

What did the Heavy Metal Profile consist of, if you know? Usually, to

get anything worthwhile, you have to give a dose of a chelating agent

before the test is done.

Also, you list ACTH. Was it a just a ACTH level or a stimulation

test? In the later they administer a shot of ACTH and measure

cortisol before and after the injection.

Did they do all these tests today, or were they ordered for later?

That has to translate into quite a few tubes of blood! Seems like

breaking it down to a couple of visits might be easier on her.

I have fared well with IV nutrients for the most part. I have not had

one with collodial silver, that is new to me.

I also take Xyrem and have found it invaluable for reducing FM pain

and improving deep sleep. I think she is fortunate to have found a

doc to prescribe it, and I hope she has as positive an experience as

I have.

Did the Doc get into diet with her?

I'll be interested to see how she progresses.

Good Luck!

>

> Here's the story, and I'm hoping for your insights.

>

> My daughter has had debilitating symptoms since she was 13. Prior

> to that, she'd had gastro symptoms since birth, cognitive/emotional

> stuff best described in retrospect as brain fog, yeast infections

> dx'd first at age 4. At age 10, she had an emergency appendectomy

> (nothing burst) that went south with post-operative internal

> bleeding that resulted in her having 4 pts of blood transfused from

> unknown sources. At 12 (Dec), she began reporting dizziness. At

> 13, she had a hard fall on a gym floor that cracked her coxxyx and

> increased the dizziness intolerably (Dec the next year). She began

> having migraines, and was out of school for 6 weeks with one that

> couldn't be controlled until she was hospitalized in May for

> ergotamine, morphine, and who knows what else. Migraines were

> intermittent that summer, dx'd with orthostatic intolerance in

> Sept. In Oct, she developed intractable neck and back pain, and

our

> PCP first said " fibromyalgia " to us in Nov. Subsequent symptoms

> have included excessive fatigue, poor sleep, IBS, VV - the gamut.

> We're in central PA, so there have been plenty of opportunities for

> Bb exposures. Naturally, nothing has come back positive on the

> normal tests run or mildly positive test results (e.g. TSH) haven't

> led to anything. Mild improvements associated with guaifenesin.

>

> So, we had a first visit to a Fibromyalgia and Fatigue Center in

> Pittsburgh today. These are the blood tests the dr. there ordered:

>

> ACE

> ACTH

> Aldosterone

> Angiontensin II

> AST/SGOT

> B12

> Cardio CRP

> CBC w/diff

> CMP

> Cortisol Free

> Cortisol Total

> DHEA-S

> Fibrinogen

> Heave Metals Panel

> Meoglobin

> IGF-1

> Insulin

> Lipid Panel

> Lipoprotein

> Magnesium, RBC

> NK Cell activity

> Pregnenolone

> PTT

> Reverse T3

> SHGB

> T3, free

> T4, free

> Testosterone F & T

> Thrombotic Marker Panel

> Thyroglobulin

> Thyroid Peroxidase AB

> Total IGG/IGM/IGA

> TSH receptor AB

> TSh

> Vitamin D Panel

> Estradiol

> FSH

> LH

> Progesterone

> Prolactin

> Somatostatin

> Anti T3 AB

> Anti T4 AB

> Anti-TSH AB

> RNASE-L Act

> IGFBP-d

> Babesia

> Candida IgG/IgM/IgA

> Chlamydia Pneum

> CMV

> CMV IgM

> EBV early antigen

> EBV panel

> HHV6

> Lym Disease IgG/IgM

> Lyme Disease WB

> Mycoplasma IgG

> Mycoplasma IgM

>

> He prescribed Xyrem and Nystatin for now, based on symptoms. Gave

> her an IV colloidal silver infusion, an IV cocktail comprised of

> unknown goodies, and an injection primarily of B12, glutathione,

and

> other stuff.

>

> She's in surprisingly good shape tonight, considering the long

drive

> to get to Pitt from home and what she went through today. He's

> familiar with the MP. He's looking for Igenex Western Blot results

> before going to samento. Based on her symptoms, he's especially

> looking for her thyroid info.

>

> So, does this seem to y'all as complete as it does to me?

>

> Thanks,

>

> Val in PA

[Guest guest]

Thank you, , , and Barb,

All of the tests I listed are blood tests and, yes, it DID require a

huge amount of blood to be drawn! More than 20 vials. They didn't

involve anything other than a blood draw for the heavy metal test or

ACTH.

The list I posted is from the labwork order sheet, and I don't know

much more about these tests than that they are on the list. The

blood draw was done at a Quest lab. So, I'm afraid the Lyme results

won't be worth anything, . OTOH, he mentioned that there are

more than 300 species of Bb and we talked about Igenex testing, and

I thought yesterday that they were going to be sending the Lyme

testing to them. But I don't see anything on the order sheet that

indicates that, so today I'm thinking we may just be getting another

Quest WB (this will be her 3rd). I don't know the difference

between the 2 tests listed, other than that one says Lyme WB and the

other says Lyme IgG/IgM. It's a good question to ask at the next

appt.

, that's good news on the Xyrem. I asked our PCP about it

several months ago, he looked into it and said no. So, I was

pleased that this dr. prescribed it. We've tried everything else,

and gave up about a year ago. So, over the last year, she has just

phase-shifted at will. She's on an advancing schedule and circles

the clock about every 2 months, usually spending about 12 hrs in

bed, but most of it seems to be interrupted alpha sleep. I am less

concerned about stablizing her schedule (altho that would be a

miracle) than the possibility that she could actually get some high-

quality delta sleep.

He got into diet with her to the extent that he thinks her sugar

cravings are yeast-driven. He says the tests will give us more info

about that and possible insulin resistance, etc. She knows all

about the research on lo-carb diets improving FM pain and won't do

it. She was on a very lo-carb diet for about a year at age 14 when

she started the guai protocol, and was convinced it didn't change

anything, so she's been unwilling to deal with it since then.

Barb, they yeast infection symptoms weren't systemic as far as we

knew, the appendix was infected but I don't know the infectious

agent, her blood chemistry always comes back within " normal " ranges,

and they've been all over her abdomen with a CAT scan and other

tests. Two years ago, she started having intense IBS symptoms, we

thought she might have celiac disease, and she went to a specialty

clinic in Seattle for a raft of tests, all of which showed

everything as being normal. I'm not sure how much attention he paid

to her spleen when he was looking around in there.

He's familiar with the MP and said they have several pts following

it in their various clinics around the country.

We don't go back for a month, to make sure all the test results are

back before we make the drive down again. Besides the Xyrem, I'll

be interested in seeing how she fares on the nystatin in the

meantime. She did a trial of diflucan several years ago that had

her so miserable she couldn't finish it. Hope this goes more easily.

Thanks!

Val

[Guest guest]

Hi

It's pretty good, but here are some things I might add if these don't lead

anywhere.

1. Hypercoagulation tests. They did test lp(a) which is one genetic factor

that leads to hypercoagulation, but there are many others. The best place

for the test is Hemex labs (hemex.com), but there are a few other labs that

test for SFM (soluable fibrin monomer.)

2. The tests you had done are pretty much all blood tests, and while most

doctors nowawadays mainly work with blood tests, there are some things best

tested another way. I would suggest some tests from Great Smokies

(gsdl.com) such as: a) Comprehensive Detox Panel which measures the livers

ability to detoxify internal and external substances, plus other things like

glutathione levels, a test of the stools for parasites and c) test of the

stools for mercury after a challenge that pulls it out of tissues. You can

also do a urine collection for mercury, but the stool is supposedly better.

d) They have another test called the Intestinal Permeability, this tests

whether your gut is absorbing what it should, and is not absorbing what it

shouldn't (which would happen if you have leaky gut.)

Doris