Ellen's case

[Guest guest]

Hi, Ellen.

Just want to say that I haven't yet had time to study your case, but

I've seen your posts. I'll get to it when I can.

Rich

[Guest guest]

Rich,

Wow. Thanks for being so thorough. It'll take me a while to answer all your

questions, since carpal tunnel problems, arthritis, and light sensitivity

make using the computer something I can't do as much of as I'd like to.

I'm not thrilled to be yakking about all my symptoms in public, but people

do learn from this sort of thing (I've been the beneficiary of this type of

learning), so I'm not going to backchannel you.

Ellen

> Hi, Ellen.

>

> I finally have been able to read all your posts on this list and the

> Blasi list and to think about your case. There are quite a few

> things I don't know about your case, so I'm going to have to ask you

> some questions in order to try to understand it better. If you

> prefer to answer them backchannel, that's O.K. with me, but if you

> answer them here, maybe some others will learn things from your case

> that will be helpful to them.

[Guest guest]

> 1. I note that you are 47 years of age. I'm wondering if you are

> premenopausal, perimenopausal or menopausal. The reason I ask this

> is that hormonal effects can be important in CFS.

I guess I am perimenopausal. My periods are becoming quite irregular. I've been

using transdermal progesterone for the last three and a half years, since I

broke my hip. Blood tests show low normal levels, but I haven't tested saliva,

which I was told should be the real reflection of progesterone status (is that

really so?). I'm also using armour thyroid and feel that it helps.

>Also, this

> impacts iron status, and you mentioned that you were considering an

> oral iron supplement. Has testing shown that you are iron

> deficient? If so, was it a ferritin test, or what?

My iron measurements are at the low end of normal. I'd be using iron, except

with my busy supplement-taking schedule, I have no idea when I should take it,

since it interferes with the absorption of everything. Any recommendations for

timing??

> 2. I note that you are of average height but weigh only 90 pounds.

I'm 5'3 " .

> I'd like to know about your weight history, including before you

> became ill.

At 19 I was 105 pounds, which was fine. I've lost weight slowly and steadily

since I started having problems. I have something like a very slow wasting

condition. I have not been able to build muscle at all, despite careful,

concentrated effort. (I continue to exercise to tolerance, which has become less

and less and would barely count as exercise to a normal person.)

>The reason I'm asking is to understand whether your low

> weight is a consequence of your illness, or whether it came before

> that, suggesting a congenital malabsorption issue.

I'm very small-boned and have always been on the thin side but was much closer

to normal before. However, I always had trouble building muscle as a child and I

think this may be related. Not as a matter of malabsorption, but something that

relates to metabolism and tissue building. There may be some malabsorption, but

it don't think that is the primary problem. I've always had lowest " normal "

creatinine blood results, if that tells you anything. I think I must have low

creatine also.

> How do you

> know that you have low stomach acid?

A nutritionist diagnosed me many years ago. Also, I've had trouble after meals,

especially high-protein meals, with food just sitting in my stomach. A couple of

people here recommended not taking calcium supplements at the same time as food,

and that has helped me some.

>You said you can't tolerate

> HCl supplements. What happens if you take them?

Bad, bad pain, then diarrhea. I have the same problem if I take enzymes or bile

supplements, though not as bad.

> You mentioned

> having a tendency toward diarrhea.

It's this irritablility problem. I can avoid this if I do all the right things:

eat no raw foods, don't take too much magnesium or the wrong type, ditto for

vitamin C, take an alginate supplement. One slip, and it's back.

>Do you have other

> gastrointestinal symptoms, such as gas (upper or lower), bloating,

> abdominal pain (upper or lower, left or right quadrants).

I have some tenderness that moves around, mostly in the stomach. A little gas, a

little bloating. Nothing terrible. As long as I don't eat too much. I do better

in the warmer months when I'm somewhat more active.

>Have you

> had any testing run on your G.I. tract, such as endoscopy,

> colonoscopy, CT scan, barium enema,

Yes, a long time ago. To no avail. And never again, they were such torture.

>comprehensive diagnostic stool

> analaysis, or parisitology analysis?

Years ago, again, and nothing useful. Perhaps it's time for another .

>Have you tried gut remedies?

> If so, which ones?

Probiotics, although not the ones that have SBOs, because I've heard scary

things about them (are they safe?); all sorts of enzymes (see above); bile salts

(see above); botanicals to kill off pathogens (I take OLE on a regular basis);

huge amounts of glutamine to supposedly repair leaky gut; herbs like slippery

elm and marshmallow; I'm sure there's more. I think I recall that

deglycerrhizinated licorice was soothing. I'm considering using it again; maybe

it would help me tolerate other things.

>How does your body respond to various categories

> of foods (protein, fat, carbohydrates)?

I can't discern any special problem with any particular type of food, except

dairy.

>Do you have food

> sensitivities, such as to gluten or dairy products or others?

Dairy products aggravate my joint problems. I don't think I have any gluten

problems -- I have no gliadin antibodies -- but I tend to stay away from them

anyway. There's nothing else that's obvious. At some point I will cut out all

the usual suspects, like soy (which I now only eat fermented), and see what

happens.

>When

> you have solid stools, what are they like? Normal color or lighter

> in color, normal size and form, or what?

Normal size, they sink (a topic of much discussion lately!), but they are

light-colored.

>Do you have a BM at least

> once per day? I'm trying to understand how well your digestive

> system is working.

Usually two to five times.

>

> 3. Have you had any nutrition by I.V., such as Myers cocktails? If

> so, how did you respond to them? I'm trying to find out how well

> your gut is absorbing nutrients.

I cannot tolerate anything by IV; I get really reactive. I think I absorb

nutrients well enough from the supplements I'm taking (for example, B vitamins

turn urine yellow, blood test are normal). Mineral blood levels are good.

>

> 4. I see that you live on Long Island. As you are probably aware,

> Long Island is a hotbed of Lyme disease.

Not in western Nassau County, close to NYC, where I live. Long Island is very

large, and varied. It's fairly urban here, more like the more suburban parts of

Queens. And I've lived here for only 10 years; prior to that I lived in NYC.

> So I'm wondering if you have been tested for Lyme by

> a good test, such as the Igenex western blot (Igenex is licensed by

> the state of New York).

I've been tested many, many times, but I didn't have that test. When I started

having problems, I was living in Boston and it was winter. I suppose I'll have

to get that one, though.

>What about mold? Do you currently have

> mold exposure where you are living? Do you know whether you are

> mold-sensitive?

I had some mold remediation done in my house (using non-toxic substances). I

don't think I am as sensitive to mold as many here are. If I'm going through a

good spell (though there hasn't been too much of that lately), and I am

obviously exposed to mold, it seems to have no effect. I take as many

precautions as I can indoors, and have lots of ventilation.

> 5. I see that you have been ill for 28 years, which must mean your

> onset was at age 20 or thereabouts. Was it a sudden or a gradual

> onset?

It was very gradual, and for a long time, pain was my primary symptom.

Ill-advised surgery to my knee with general anaesthesia knocked me down further,

and then other injuries and stresses kept me going downhill.

>What preceded your onset, in terms of physical, chemical,

> biological or psychological/emotional stressors? It would be

> helpful to know what sorts of things might have brought on your

> illness.

I was in college, majoring in music/piano performance, and I was practicing six

hours a day, which I had been doing for a long time. Much less was known then

about body mechanics and a particular teacher I had then encouraged me to do

certain exercises to stretch my little hands in a way that resulted in a

repetitive stress injury. That was hugely traumatic for me. It was around that

time that I started having other symptoms, but they were relatively mild.

> How was your diet before onset?

It was a sort of screwy, teenage version of Adele -influenced, 70s,

half-informed, health-food faddishness. Lots of unfermented soy products,

brewers yeast, etc. Not enough good quality fats, or, I must admit, vegetables.

I remember that I ate a lot of yogurt then also.

>

> 6. I see that you cannot tolerate pharmaceuticals. This suggests

> detox system problems, which you noted as one of your most difficult

> issues. I'm wondering if you've had any detox testing. I realize

> that you live in New York and using Great Smokies Lab is a problem

> for New Yorkers, but getting a Comprehensive Detox Panel and a

> Genovations Detoxigenomic Profile would tell a lot about the

> inherent characteristics of your detox system and about its current

> status.\

I'll have to see if I can get these somehow. Traveling is so hard for me, I've

been avoiding going out-of-state. I've had so little payoff in the past for all

my efforts, I hesitate to put myself at risk with the travel.

>

> 7. I note that you listed some known toxicities. Do you have test

> results indicating nickel, arsenic and pesticide toxicities? I

> gather that you know you were exposed to pesticide. Do you know

> which one, and when was that?

Avid (abamectin) and some form of synthetic pyrethroid, both potent nerve

toxins. This was in 2000. I was severely ill and ended up going to stay in

Buffalo to see Dr. Patel, who helped me enormously if not completely. But I

still think I have some residual.

The nickel and arsenic both showed up in a recent unprovoked urine test. About

the arsenic, though: I did some reading recently and discovered that high urine

result was probably related to using a product derived from kelp that,

ironically, is supposed to help eliminate heavy metals. Apparently it's full of

inorganic arsenic. I was told that it all comes out in the urine and is not

bioavailable (as demonstrated by its not being in the blood) and that it will

actually help remove organic arsenic. In fact there was no arsenic in my blood,

which was taken at the same time. So I don't think I'm quite as arsenic-toxic as

that urine test indicated. But I've stopped using this product!

> Why do you suspect mercury toxicity?

> Do you have amalgam fillings?

I used to. Not a lot, and they've gradually been replaced, some by a regular

dentist who at least used a dental dam, and a couple of others by an

" alternative " dentist. I never noticed anything good or bad related to amalgam

replacement.

> Have you eaten much large, predatory

> fish, including tuna?

I used to, in my teens and twenties.

> 8. I note that you have some elevated viral antibody titers. I

> believe this means that your glutathione is depleted. I don't think

> it's possible to have viral activation if glutathione levels are

> normal. I note that you formerly were able to tolerate glutathione

> supplementation, but now cannot. This suggests problems with the

> sulfur metabolism. Are you particularly sensitive to sulfur-

> containing foods and supplements?

I don't seem to have a problem with sulfur-containing veggies, and most of the

time, but not all the time, I'm all right with eggs. I do get that weird

asparagus-related urine thing, whatever that indicates. I haven't tried using

glutathione since I had a disastrous experience with an IV of glutathione and

NAC administered by a local alt doc, around the time of my pesticide exposure,

which I feel accomplished nothing but the redistribution of toxins. My bad

experiences with alpha lipoic acid and NAC mainly occurred a year or so after

the pesticide exposure, although my experience with having a depression reaction

to a very small amount of alpha lipoic acid happened only last year.

I've been hoping to get to the point where I can start using glutathione in some

form. In years past, I tried using whey, but dairy products seem to aggravate

joint pain, so I'll have to find another source. My only concern in trying it is

whether small amounts of glutathione redistribute toxins.

I don't seem to have a problem with taurine--I'm pretty sure it helps me--or

glucosamine sulfate.

> I note that you said you had

> problems with alpha lipoic acid and NAC. Any chance you could get

> the gene variations characterization basic economy panel from

> www.testing4health.com?

There are so many tests discussed here that I'm overwhelmed and I can't figure

out what to do. Especially when there is some question as to the accuracy of

some. Not to mention that this all is financially ruinous as we all know.

My problem with alpha lipoic acid is that when I had my bad experience with it,

I was more toxic when I am now, and I think it redistributed toxins, as it is

known to do. This is one area where I completely agree with Cutler. The

same goes for NAC. But I won't use either of those again.

> I note that you have been taking many of

> the supplements that are used to compensate for genetic variations,

> and you are wondering whether to switch from folic to folinic or to

> FolaPro. As I mentioned in an earlier post, which one is best

> depends on your genetic variations. If you were able to get this

> testing, it would shed light on that question. Otherwise, you could

> just try them and see if they helped, but I gather that you have to

> be pretty careful about what you try because your body is in a

> fragile state, so I think it would be better to test first, if you

> can.

I was hoping that the blood test results and the reactions that I described

might give you enough clues. Do you have any idea whether my problems with

methylcobalamin could be alleviated with some coenzyme form of folate? My goal

here is to get to the point where I can build glutathione without having a bad

reaction. Which tests would be the best ones to figure this out?

As I mentioned in my post last night, I also have had relatively high levels of

bilirubin, and think, and those other idiosyncrasies I listed, that might point

to a problem with glucuronidation.

>

> 9. I note that you have joint pain, and that you started taking

> glucosamine sulfate, had no problems with it, but then stopped

> because you read something that suggested that it could lead to

> diabetes. I looked at the link you provided, and I didn't see any

> data backing this up, so I think it might be based on speculation,

> since I haven't heard that from anywhere else.

OK, if you really think so, but the last thing I need is to add diabetes to my

list of complaints. I used to take GS regularly, back when it first hit the

news, and it did nothing for me. Maybe I need to take a higher amount?

>

> 10. Do (or did) any of your genetic relatives have CFS or autism or

> anything that seemed related to them?

How I wish I knew anything about any genetic relatives, but dear old New York

State would not let me, as an adoptee, have access to any birth records.

>

> 11. You mentioned that magnesium glycinate was one of the worst

> magnesium supplements for you. Do you mean from the standpoint of

> how much it takes to produce diarrhea?

Yes, but lately I seem to tolerate magnesium taurate and magnesium orotate. I've

also started to take Epsom salts foot baths, which seem to make me sleepy, so I

take them before bed.

>

> 12. Have you had any other testing beside what I've already

> described? For example, have you had a urine organic acids test or

> either urine or plasma amino acids tests? These are very helpful in

> sorting out what's going on in cases of CFS.

Years ago, a couple of times, I had the urine organic acids test, and maybe the

information that was available at the time to interpret them was incomplete, but

it wasn't very helpful.

>

> 13. You asked me about a way to build you phospholipids, and

> mentioned that you can't tolerate fish oil or NT Factor. Have you

> tried BodyBio's oral PC? It doesn't have the additives that NT

> Factor has, but there is some ethanol. (http://www.bodybio.com)

This product looks good, but like everything that Dr. Kane offers, is inhumanely

expensive. When I asked about a " homemade " substitute for NT factor, I was

hoping for something cheaper!

>

> Well, those are the things that come to mind. I realize that you

> were hoping to get some answers from me, and instead you got more

> questions, but I really think I need to know more about your case

> before I can offer informed suggestions about it.

>

> Rich

>

Thanks very much again for your thoroughness. I'm amazed at your dedication. I

hope we can come up with some answers.

Ellen

..