RE: hi, i am new too

[Guest guest]

Hi Roe, well my heart really goes out to you because it really sounds like

you are dealing with a lot. Yes, I remember feeling exactly like I weighed

1,000 lbs and still have episodes where I can’t move for hours…if I have

overdone it. Let’s see, you have Lyme, are you being treated for it? Is your

ID doc checking for WNV? Sounds like a possibility given the circumstances.

And a seizure disorder, toxic mold…these are all things you can deal with

one by one, and I bet as you go through that process it can only help you

feel better over time.

The Tilt Table test is the usual way they check for Orthostatic Intolerance,

where one’s blood pressure drops when upright, sounds like that runs in the

family too. Many docs actually see this as being somewhat diagnostic for ME

or CFS if you will. Good Luck with sorting it all out and I do hope you are

feeling better soon. Aylwin xox

[Guest guest]

be very careful with the tilt table test-sometimes there is cardiac  arrest

during the procedure and also after the test you can be very sick for a long

time due to simple having the test done. Health care professionals tried to talk

me into having it done yrs. ago and I refused and am so glad that I did. I

listened to my gut reaction which was NO way. But you listen to your gut and

make your own decision-do online research first. Make sure that you have it done

in a hospital or clinic where the paddles are readily available in case your

heart stops.     diane

[Guest guest]

It sounds like your Infectious Disease guy is at least being pro-active in some

right directions.

Regarding the Tilt Table Test, theoretically it's an appropriate idea since many

of us have something it can identify...Neurally Mediated Hypotension...as found

in PWCs at s Hopkins and published in JAMA in 1996.

NMH can make being upright literally impossible much of the time..total

depletion of energy, due to blood pooling in legs, rather than getting to heart

and brain, limbs, rest of the body.

Maybe someone can find some accounts of PWCs having the test, as it is true that

some have had very long term serious effects from it. I'm sure this would also

have to do with the seriousness that the person administering it takes risk into

account.

For myself, I'd had a different kind of test that tilted me and being unprepared

for the sensation, I'd say it was the worst and scariest I'd ever had. So, due

to that and *some* PWC reactions, I had the fear of god of the TTT.

However, my PCP was willing to do something called the " poor man's TTT " , which

can be done in office, and was tolerable. And, when the test was positive, then

allowed me to try the drug being given for NMH...Florinef.

Not everyone can tolerate Florinef, but it was a miracle for me and others. I

could stand and hold a conversation, after 5 years mostly bed-ridden and feeling

semi-conscious and barely articulate. Long term side effects may be a concern,

so must be weighed.

Other treatment and medications available too. Even a trial of extra salt and

fluids, or electrolytes, such as Hydralyte (formerly Gookinaid).

I have been taking Florinef for 12 years now, mostly not bed-ridden.

(I do have multiple other serious damage from 24 years w/ME/CFS).

So, the goal of the TTT is important...ie: must it be considered for disability

itself? Or just diagnostic, and for treatment goals?

Meanwhile, you could look up NMH, or other forms of Dysautonomia, and see if the

symptoms or tools for managing it resonate for your case.

Maybe someone can help you get the PWCME after effects accounts to show your

doctor, to consider the " poor man's " version.

About the mosquito bites...for years, maybe still, even one bite would make me

feel very sick, with no WNV, so that does not surprise me at all. It is part of

my (ME, NeuroImmune), disease malfunctions and reactions.

There are essential oils that can repel mosquitoes...I used sandlewood...there

are others.

Isn't WNV testable?

About people calling you chicken...I'd say screw them, and unfortunately, get

used to it. People are idiots, when it comes to our illness(s)...they are so

utterly clueless, that is the last place to get your *medical advice*. If you

were diabetic would you listen to someone tell you you're " chicken " if you don't

skip your insulin? Think of it that way.

Listen to and protect your body!!!! And to biomedical *Science*, and informed

sources, with many years of experience behind them, like lots on this list.

PCPs are SWAMPED, SWAMPED! with propaganda on " fatigue " ...and don't today have

time to learn for themselves which is true and which isn't.

WNV country? Slather yourself with natural protection or don't go! Even

" mainstream " probably advises that. But you may have just had a temporary

reaction, from being in a compomised physical/immune condition. Look it up, or

get a test for more info.

And look up signs and tools for NMH/Dysautonomia.

Ask what your infectious disease guy is looking to rule out.

TTT usually done by Cardiologist, maybe Neurologist.

my 2c,

Take care,

Katrina

[Guest guest]

excellent info-just had another thought about this-as I didn't want to have the

TTT done-as I knew that it would make me very sick-I tried Florinef and have

been on it daily since 1995 and it has helped tremendously with some minor side

effects as it is a steroid-weight gain. but it has been worth it to be able to

stand up.    diane

It sounds like your Infectious Disease guy is at least being pro-active in some

right directions.

Regarding the Tilt Table Test, theoretically it's an appropriate idea since many

of us have something it can identify...Neurally Mediated Hypotension. ..as found

in PWCs at s Hopkins and published in JAMA in 1996.

NMH can make being upright literally impossible much of the time..total

depletion of energy, due to blood pooling in legs, rather than getting to heart

and brain, limbs, rest of the body.

Maybe someone can find some accounts of PWCs having the test, as it is true that

some have had very long term serious effects from it. I'm sure this would also

have to do with the seriousness that the person administering it takes risk into

account.