boring update

[Guest guest]

Hello everyone. I wanted to let you know how I am doing. I call this a boring update because I have nothing exciting goign on. But sort of vaguely interesting I guess. I started LDN at the beginning o f November. I was tapering off steroids at the time so dont know if the time tapering would actually COUNT as LDN time or not. I would saay now ive been on purely LDN and no steroids for 1 1/2 months... So far i've felt MORE fatigue and worse worse worse.I thik its because im off the steroids so the steroid-induced artificial feeling of sterngth has gone and now i'm down to m y true level of weakness-possibly. Now, my hips ache all th etime and this disturbs my sleep.i have not seen my dioc yet to ask for a western blot test for lymedisease. I am one of the limbolanders too, negative MRI and negative spinal tap but all signs and symptoms suggest MS. I wanted to let you know that although I still cannot walk unassisted and am horribly weak, but the last 2 days i was able to do MORE.......and even this morning i feel pretty good compared to usual. usually I feel so awful, i can hardly hold up my head and i jsut spend most of the day lying down.but lately ive been more alert......for me this is a big improvement.I hope this lasts and isnt jsut some sort of temporary thing!!!!!

Nola

[Guest guest]

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> Hello everyone. I wanted to let you know how I am doing. I call this a boring

update because I have nothing exciting goign on. But sort of vaguely interesting

I guess. I started LDN at the beginning o f November. I was tapering off

steroids at the time so dont know if the time tapering would actually COUNT as

LDN time or not. I would saay now ive been on purely LDN and no steroids for 1

1/2 months... So far i've felt MORE fatigue and worse worse worse.I thik its

because im off the steroids so the steroid-induced artificial feeling of

sterngth has gone and now i'm down to m y true level of weakness-possibly. Now,

my hips ache all th etime and this disturbs my sleep.i have not seen my dioc yet

to ask for a western blot test for lymedisease. I am one of the limbolanders

too, negative MRI and negative spinal tap but all signs and symptoms suggest

MS. I wanted to let you know that although I still cannot walk unassisted and am

horribly weak, but the last 2 days i was able to do MORE.......and even this

morning i feel pretty good compared to usual. usually I feel so awful, i can

hardly hold up my head and i jsut spend most of the day lying down.but lately

ive been more alert......for me this is a big improvement.I hope this lasts

and isnt jsut some sort of temporary thing!!!!!

> Nola

>

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Nola, go ahead and get that Lyme test as a just-in-case. See if what I've

copied below and see if this fits you in any way.

has now been diagnosed with Lyme, she had been misdiagnosed as having MS.

below is what she wrote right after being dx'd with Lyme.

Author: McGarry

What's more--when I was able to convince my neurologist to prescribe LDN to me

last December, the first week or so on it were extraordinarily pain-filled for

me. I had done everything right, I was using the correct filler, getting it

through Skip's, etc. The pain I was experiencing radiated from my large joints,

outward.

Below is what wrote before being diagnosed with Lyme...she suspected Lyme

and now her new husband is showing signs of being infected with Lyme. Looks

like she transmitted her Lyme to him. LDN helped get her Lyme test &

diagnosis.

Author: McGarry

I'd like to discuss the transmittability of Lyme:

Now, I know it's infantile to believe that ticks are the ONLY insect that can

transmit Lyme to humans, as mosquitoes " enter " our system's barrier with just as

much of an assault and violation as ticks.

But...what about human-to-human? I just want to really, really understand why

there are SO many stories now emerging where WHOLE families are infected. If it

is transmittable to a fetus, then, in my opinion, it is perfectly plausible that

one could also transmit the bacteria to a significant other.

I have many times likened Lyme (in my own thought process) to HIV or AIDS.

Casually, not transmitted, but when you are really sharing yourselves with one

another, HIV can be passed. Borrelia is found in the same bodily fluids as the

virus that causes AIDS. Know what I mean?

Aside from pure scientific curiosity, my interest is vested:

Since choosing to spend his life with me, my husband has found out what

" floaters " really are....he sees them in the same capacity that I do,

unfortunately (hundreds and hundreds of them). He now gets the sporadic yet

frequent flu-like sensation throughout his body like I do, now has sheet-soaking

night-sweats, and even has developed vague neurological signs (buzzing thigh,

twitching all over, one violent twitch that'll last for a week). I don't think

these are sympathy pains.

Yes, I have been diagnosed with MS, but my continued cranial nerve involvement

(while the other sensory attacks have disappeared since LDN), HORRENDOUS JOINT

AND FEMUR BONE PAIN (not cramping, but joint and bone pain that disappears

immediately with application of heat), arrythmia (atrial premature complex found

on an ECG, though in report, stated " normal " ), cervical neck degeneration

(again, for NO reason! I am subluxated at C1 TRHOUGH C6!), tooth pain that has

made me so convinced that I have at least 4 molar cavities, that I simply could

not believe it when the dentists did extensive x-rays only to find perfectly

healthy teeth, massive floaters that span my entire vision are all things that

just don't fit quite well into the MS paradigm. Well, I know it fits into the

Lyme-induced concept...right?

I am just really petrified that I have given this to my husband. We are very

close...inseparable. What a cursed bi-product of an otherwise beautiful love!

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