Re: thanks to everyone! and a few more questions....

[Guest guest]

Hi Amy,

I'm in a very similar situation as you. I haven't had all those

tests, yet. I tend to be afraid of medical procedures and

medication, so it's been difficult for me -- I also don't want to

become a " professional patient " lol.

I work full-time PLUS. I work for my boyfriend and am VP of his

company, responsible for payroll, accounts payable, human resources,

database management and a boatload of other stuff. I used to work 12

hour days 7 days a week. I can barely make it 3 to 5 hours since

getting sick in 2003/2004. Thankfully, I am able to work at home a

lot, and that helps. I do most of my work on weekends at home,

because it is less stressful. My daily work, I do about 3 hours in

the office, maybe 5, and then I go home and I probably work an hour

in the evening before crashing. Like you, I push and crash.

I have whittled down my housework to only what's absolutely

necessary. I will do dishes every day, but other stuff I do one

thing a day and that's it, sometimes nothing. I used to do a

marathon cleaning every Sunday, but not anymore.

I may have sleep apnea. Not sure. My drs have been bugging me to do

a sleep clinic, and I have refused because I was convinced that my

disordered sleep was a SYMPTOM, not a cause. I've gotten past that

way of thinking now, and my dr is talking to me on Thurs about a

sleep study in addition to some other stuff. I think I don't have

apnea, but I think I move my legs in my sleep. My boyfriend says I

don't stop breathing, and he doesn't know about the legs, but my legs

always hurt in the a.m. and I have very mysterious, multiple

awakenings in the night for " no reason " . I now think the " no reason "

is movement of my legs. But maybe it's HIS legs and HIS apnea that

wakes me lolol! Seriously, when he's not there, I still have

disordered sleep, so I will be interested to find out. Knowing my

luck, I'll sleep like a baby at the clinic because no pets, no

boyfriend! lol!

K2

I have had most every kind of test, blood and other that i

> think my doc could throw at me. i have had several MRI's, CT scans,

> EMG's, lumbar puncture, and i am going for a tilt table emg and an

> evoke test with an emg. my next question for you guy's is, have

most

> of you gone through all of the same tests as me or is this kind of

> testing uncommon?

[Guest guest]

Hi Amy,

Well, my bloodwork also shows elevated inactive EB Virus. I think most of us

have been thru the whole gammut of testing, lots of the within normal limits.

I finally was fired from my job of 15 years. I could no longer work full time

and my position was one I could not keep up with on a part time basis. I would

go in, work 2-3 hours, then just about collapse trying to drive home again. I

did this, off and on, for 3 years before they finally HAD to let me go. I wish

I had quit earlier, instead of pushing myself so hard. It didn't help me and

now that I'm filing for disability, they take into consideration your pay scale

over the last several years. Of course, without working my full schedule (40

hours week) , I didn't get paid as much, so I will be expecting less than I

could have gotten, had I QUIT when I was not missing so much work. JUST

SOMETHING to KEEP IN MIND.

As far as sleep apnea, I was tested, and I do NOT have it.

I hope this helps Amy, at least, like you said, it's comforting to know there

are others like you, you are NEVER alone in this thing.

Take care now,

STL Jane

amysainato wrote:

i just wanted to thank everyone for their support and personal

stories, it really helps to hear what other people are going

through! I have had most every kind of test, blood and other that i

think my doc could throw at me. i have had several MRI's, CT scans,

EMG's, lumbar puncture, and i am going for a tilt table emg and an

evoke test with an emg. my next question for you guy's is, have most

of you gone through all of the same tests as me or is this kind of

testing uncommon? i also did find out one thing from my most recent

blood work, that i have high levels of inactive epstein-barrs... i

know that it used to be linked to causing CFS, but i know alot of

new research suggests otherwise, so i am wondering if anyone else

has this too?

[Guest guest]

Hi Amy,

Well, my bloodwork also shows elevated inactive EB Virus. I think most of us

have been thru the whole gammut of testing, lots of the within normal limits.

I finally was fired from my job of 15 years. I could no longer work full time

and my position was one I could not keep up with on a part time basis. I would

go in, work 2-3 hours, then just about collapse trying to drive home again. I

did this, off and on, for 3 years before they finally HAD to let me go. I wish

I had quit earlier, instead of pushing myself so hard. It didn't help me and

now that I'm filing for disability, they take into consideration your pay scale

over the last several years. Of course, without working my full schedule (40

hours week) , I didn't get paid as much, so I will be expecting less than I

could have gotten, had I QUIT when I was not missing so much work. JUST

SOMETHING to KEEP IN MIND.

As far as sleep apnea, I was tested, and I do NOT have it.

I hope this helps Amy, at least, like you said, it's comforting to know there

are others like you, you are NEVER alone in this thing.

Take care now,

STL Jane

amysainato wrote:

i just wanted to thank everyone for their support and personal

stories, it really helps to hear what other people are going

through! I have had most every kind of test, blood and other that i

think my doc could throw at me. i have had several MRI's, CT scans,

EMG's, lumbar puncture, and i am going for a tilt table emg and an

evoke test with an emg. my next question for you guy's is, have most

of you gone through all of the same tests as me or is this kind of

testing uncommon? i also did find out one thing from my most recent

blood work, that i have high levels of inactive epstein-barrs... i

know that it used to be linked to causing CFS, but i know alot of

new research suggests otherwise, so i am wondering if anyone else

has this too?

[Guest guest]

Hi Amy,

My tests have been a little different from yours. I haven's done any

MRIs, CTRs, EMGs, spinal taps, or tilt tables. I may in the future, but

there were so many things wrong with my blood tests that we decided to

deal with those things first. They did so many blood tests, that they

took about a pint of blood the first test, I think they had 40 or 50

vials total. Some of the things they tested for were a Thrombotic

Marker Panel (tests ability to clot), including Fibrin Monomer (mine was

positive); a test for Vitamin D 1,25 (mine was high, indicating

inflammation); Plasminogen Activator Inhibitor (mine was high); IGF-I

(mine was low); Magnesium, Lipoprotein (both normal); Aldosterone (mine

was low); Cortisol, Free and Total (mine was low); Candida (none in the

blood, but I had a gastro-intestinal invasion); Pregnenolone (mine was

very low); Immunoglobulin G Panel (ok); Vitamin B12 (very low);

Testosterone, Free and Total (very low); Reverse T3 (way too high);

Sedimentation Rate (high, indicating inflammation); ANA screen (normal);

Rheumatoid Factor (high); Immunoglobulins and Cardiovascular Homocystine

(both normal); DHEA sulfate (very low); Folate, FSH (both normal);

Insulin (very high - and I'm not diabetic); LH (normal) Progesterone

(very low); Prolactin (normal); Estradiol (very low); Sex Hormone

Binding Globulin (very low); Vitamin D 25 (normal); Natural Killer Cell

Function (ok); Lipid Panel (out of whack, but that's nothing new); Heavy

Metals Testing for Arsenic, Lead, and Mercury (surprisingly ok); Iron

Saturation (very low); a fasting metabolic panel (all ok); Fibrinogen

(very high); and the ubiquitous CBC (also normal with the exception of

RDW were slightly elevated); C-Reactive Protein (was very high);

Tyroglobulin antibodies (ok) Thyroid peroxidase antibodies (high);

Ferritin ( very low); Free T-4 (low); TSH (normal); Free T-3 (low); and

hemoglobin (normal).

With so many things at the wrong levels, you can see why we stopped

there and decided to fix some of this before testing anything else. The

only other tests we've done were for Lyme, HHV-6, EBV, PVB-19, a couple

of pneumoniae, and CMV. Only the EBV came back active.

From all that, we're focusing on Thyroid (raising T-3 levels),

adrenals, sex hormone balance, anti-virals, and sleep enhancement. I got

rid of the yeast in my gut with an anti-yeast diet. The only problem

now is that the fibrous nature of my blood seems to be giving the

Epstein Barr bugs places to hide so the anti-virals and my immune system

can't get to them. I'm now taking heparin shots twice a day to dissolve

the fibers.

I am not really working per se. If I had a regular 40 hour job, I

wouldn't be working at all. I'm self-employed, so I work about 5 hours

a week, broken down between two days. It's all I can do, and I have to

rest on the day of work, the day before, and the day after. It's almost

not worth doing, except I've got to try to bring in some kind of income,

if nothing else than to pay for my medical insurance for the month (not

that I make enough to do that, but every little bit helps).

I am about to have a sleep study done, so I'll know more about whether I

have sleep apnea after that. I know I don't sleep well, I don't think I

ever get into Stage 4 level sleep.

Lots of info, I know. Sorry about the novel. Hope it helps.

amysainato wrote:

>

> i just wanted to thank everyone for their support and personal

> stories, it really helps to hear what other people are going

> through! I have had most every kind of test, blood and other that i

> think my doc could throw at me. i have had several MRI's, CT scans,

> EMG's, lumbar puncture, and i am going for a tilt table emg and an

> evoke test with an emg. my next question for you guy's is, have most

> of you gone through all of the same tests as me or is this kind of

> testing uncommon?

[Guest guest]

Hi Amy,

I am mostly housebound, definitely can't work, 28 years old and my

life has completely changed since August when my energy dropped. I

am in the process of doing test but so far have only had regular labs

and cardiology tests. When I meet my rheumatologist I will probably

do many more. I haven't been tested for sleep apnea or sleep

disorders.

~ ~

>

> i just wanted to thank everyone for their support and personal

> stories, it really helps to hear what other people are going

> through! I have had most every kind of test, blood and other that i

> think my doc could throw at me. i have had several MRI's, CT scans,

> EMG's, lumbar puncture, and i am going for a tilt table emg and an

> evoke test with an emg.

[Guest guest]

Hi Amy,

I am mostly housebound, definitely can't work, 28 years old and my

life has completely changed since August when my energy dropped. I

am in the process of doing test but so far have only had regular labs

and cardiology tests. When I meet my rheumatologist I will probably

do many more. I haven't been tested for sleep apnea or sleep

disorders.

~ ~

>

> i just wanted to thank everyone for their support and personal

> stories, it really helps to hear what other people are going

> through! I have had most every kind of test, blood and other that i

> think my doc could throw at me. i have had several MRI's, CT scans,

> EMG's, lumbar puncture, and i am going for a tilt table emg and an

> evoke test with an emg.

[Guest guest]

The main thing with diagnosing CfS and Fibro is too rule out everthing else

first... since there isn't a clear cut test for either one... This means

patients go through a multiple of tests before they get a diagnose. I am sure

many of us have been through the battery of tests out there... I finally said

enough is enough... got tired of being poked and prodded. Good Luck!

K2 wrote:

Hi Amy,

I'm in a very similar situation as you. I haven't had all those

tests, yet. I tend to be afraid of medical procedures and

medication, so it's been difficult for me -- I also don't want to

become a " professional patient " lol.

[Guest guest]

Hi Amy,

It does seem that the more we discuss details between us, the more

alike and different we find that we are. I have degenerative bone

disease that has caused me much pain and reconstruction of my spine

just before coming down with this disease. I was tested for apnea and

I have " open and obstuctive apneas " But because of my back, I am

unable to position myself for sleep in a way to use the cpap machine

so I go untreated. I still just stop breathing at night with no

obstuction and when my airway collapses...I stop breathing too. So my

oxygen level is not where it should be. Someone was asking about meds

and I am on alot of them. This year is especially hard because my

insurance through my husbands work decided to make him pay weekly for

his insurance but placed a 2600.00 deductible as of Jan 1, 2007 and

that applies to my scripts too. My meds monthly run over 1300.00 so I

guess I will meet that deductible next month. There is no plan out

there that can help me as I've done exhaustive research and am

excluded for one reason or another. If you want to know what has

finally helped me to get some of my life back, email me for list as I

don't want to fill up this forums space! LOL

God Bless,

>

> amysainato wrote:

> >

> > i just wanted to thank everyone for their support and personal

> > stories, it really helps to hear what other people are going

> > through! I have had most every kind of test, blood and other that i

> > think my doc could throw at me. i have had several MRI's, CT scans,

> > EMG's, lumbar puncture, and i am going for a tilt table emg and an

> > evoke test with an emg. my next question for you guy's is, have most

> > of you gone through all of the same tests as me or is this kind of

> > testing uncommon?

>

[Guest guest]

Hi Amy,

It does seem that the more we discuss details between us, the more

alike and different we find that we are. I have degenerative bone

disease that has caused me much pain and reconstruction of my spine

just before coming down with this disease. I was tested for apnea and

I have " open and obstuctive apneas " But because of my back, I am

unable to position myself for sleep in a way to use the cpap machine

so I go untreated. I still just stop breathing at night with no

obstuction and when my airway collapses...I stop breathing too. So my

oxygen level is not where it should be. Someone was asking about meds

and I am on alot of them. This year is especially hard because my

insurance through my husbands work decided to make him pay weekly for

his insurance but placed a 2600.00 deductible as of Jan 1, 2007 and

that applies to my scripts too. My meds monthly run over 1300.00 so I

guess I will meet that deductible next month. There is no plan out

there that can help me as I've done exhaustive research and am

excluded for one reason or another. If you want to know what has

finally helped me to get some of my life back, email me for list as I

don't want to fill up this forums space! LOL

God Bless,

>

> amysainato wrote:

> >

> > i just wanted to thank everyone for their support and personal

> > stories, it really helps to hear what other people are going

> > through! I have had most every kind of test, blood and other that i

> > think my doc could throw at me. i have had several MRI's, CT scans,

> > EMG's, lumbar puncture, and i am going for a tilt table emg and an

> > evoke test with an emg. my next question for you guy's is, have most

> > of you gone through all of the same tests as me or is this kind of

> > testing uncommon?

>

[Guest guest]

Hi Amy and all,

I'm new here myself. I was diagnosed with fibro in 2002. I'm presently

working as a waitress which is absolutely killing me but I have to work. I

make it through the day with lots of prayer and pain meds (oxycodone). Then

I come home and collapse. I know I'm pushing my body more than it can

handle right now but I don't really have much choice. My doctor also feels

I may have CFS but I haven't been officially diagnosed with that yet.

Anyway, I just wanted to answer your question about working. I just got

home so need to get something to eat and then rest for a bit before doing my

studies for church tomorrow.

Bel

[Guest guest]

Hi Amy, et al.,

I have had all those tests, minus the lumbar puncture. I couldn't have it

done unless it was life or death as I am afraid of having a spinal tap! My

tests were all normal as well. They ruled out everything, including cancer,

diabetes, lupus, MS and even muscular sclerosis. I still don't know if I

believe it's ME/CFS because it's just such a hard thing to diagnose.

I work by butt off everyday. I have three children, plus I volunteer a lot

and sit on several Boards. I can't stand not having something to do. Yes, it

hurts a great deal and I feel like I am going to pass out at times, but as long

as I CAN do it, I will. I fear that someday I won't have a choice. I have

heard it said that it's better to pace one's self as the burn out won't come so

soon, but my family needs me and I don't want to cause my children undue stress

worrying about me.

My worst symptom isn't fatigue; it's the vertigo, muscle aches and brain fog.

I hate that my memory fails me all the time.

I just want to say that I believe that CFS can affect many people, even those

going through drug withdrawal, or post traumatic stress disorder, etc.. ME is a

specific type of CF. Someone can have CFS without having ME. I have done as

much research as I can on this subject (limited as the information is) and have

found across the Board that ME and CFS are not exactly the same thing. I know

that this is not exactly a popular opinion as it confuses things, but I wonder

if anyone else has come to the same conclusion.

Sikes wrote:

Hi Amy,

My tests have been a little different from yours. I haven's done any

MRIs, CTRs, EMGs, spinal taps, or tilt tables. I may in the future, but

there were so many things wrong with my blood tests that we decided to

deal with those things first. novel. Hope it helps.

amysainato wrote:

>

> i just wanted to thank everyone for their support and personal

> stories, it really helps to hear what other people are going

> through! I have had most every kind of test, blood and other that i

> think my doc could throw at me. i have had several MRI's, CT scans,

> EMG's, lumbar puncture, and i am going for a tilt table emg and an

> evoke test with an emg. my next question for you guy's is, have most

> of you gone through all of the same tests as me or is this kind of

> testing uncommon?