Old timer : cathy

[Guest guest]

hello ,

cathy u are one gutsy lady , u write from the heart and keep on writing. .i

have been sick 12 years, the first years were a blur of flu symtoms, virus

stuff on top of each other, too many mds who just treated the parts of me

they understood, not realizing this was one illness.Worst of all i was

intolerant of food, medicine, suppliments. When i found a cfids md , i

usually was left sicker from trying treatments.( i tried everything they had

to offer but was treatment reisitant from day one but it took me years to

believe that ! Sleeping 16-22 hours /day.

About 3-5 years into the illness, i had less flus, virus but still

sleeping less: 16- 14 hours/day,major allergy promblems and getting

reactions from minute quanities of everything.There wasnt anything that

really changed things much for me that i remeber. I started seeing an

alternative md: ivs, homopathics, more suppliments,most of which i barely

tolearted(99% ended up in a box in my closet) and had to run the ivs very

slowly. My hhv6 levels got better on hydrogen peroxide ivs but they scar my

veins.Getting iv glutathione helped. I had promblems with homopathics, taking

less than 10 % of the usual doses.One of those years in there was relatively

better as my allergies were less of a promblem( others i talk with also spoke

of that magical year: weather conditions ) My regular md had me on humibid as

needed( gufascon: cannot spell :Dr st ._: this helped my congestion) Being on

im gamma globulin shots could knock down any starting fevers /infections in

less than an hour.I got horribly sick on interferon, iv with licorice, ultra

clear, benedyrl( all left me sick for weeks in relapse) .

I started getting more cognitive sysmtoms and balance promblems were

evident to my family.All my effort and out of bed time was spent at mds

trying to get cured.All these mds, and tests further sapped my energy.I would

have been bettter off in bed resting/sleeping.

about 8-9 years into it i had mycoplasma diagnosed by pcr and started

anitbiotics. Fianlly, i found soemthing which made a dent in this illness

and my mds could also see a difference.On some levels i had more energy at

times and felt better at times, my cogntive at times would be better but i

still had the daily roller coaster of brain fog.My stomach got better on

antibiotics but my candida was worse . ( always trade offs with this

illness)I was finally winning a few battles but lost the war years ago . But,

i was increasingly frustrated and stressed out by the medical profession,

lack of progress with cfids knowledge/reserach and was starting to cut back

my md visits and test.( i was getting depressed trying things and going to

mds)

about ten years into it, my md sent me to an alternative guy as he was

so frustrated and couldnt help me.

The alternative md told me i had limited options for treatment and i

knew he was right. I couldnt detox properly, i had significant congnitive

promblems remained, very limited energy : multiple daily naps plus 11 -12

hours sleep /nite, couldnt tolearte most suppliments.

I started growth hormone secregatory but was so exhausted from the

weekly ivs i couldnt tell if it was helping me Then i added growth factor.

Over a period of months i saw very gradual improvements in my neurological

symtoms but still have episodes of brain fog, memory retrival promblems, my

energy level was slightly better but still stuck at a certain level, which if

i exceeded it, would nap in a very deep sleep.( disappointing)At times, i was

more alert and found some paperwork easier to do than i had in earlier years

but could slip back into a state of : not aware of things/what i was

saying/doing state.On some levels i knew my system was much better , : for

example detoxing: tolearte 2 scoops whey protein (good treatment) but

detoxed badly when i increased it beyond that, deeper sleep at nite for

short periods,only one nap day or occasionally none now but still need alot

sleep at nite.

i still have another year to try this out .I honestly dont know how much

more i will gain from this as it is so new and i have taken it orally which

is different from cheney injecting it and being such a treatment reisitant

patinet for many years. Then their is the issue of maintenace levels of this

for me.

if u knew me when i first got sick to now , i have improved to a higher

level but if u compare the cfids person i am now to the healthy person i was,

i am still severly limited in my life , activities,.

i am still trying selectively suppliments and medicaitons which i think

/or my md thinks would help my individual system.( kutapressin, whey protein,

)

somish.