WILL WE EVER GET BETTER? please read on

[SaveMe]

A virus throws off the immune system to where it dysfunctions.

I'm not trying to be pessimistic, but even if they treat the virus, the immune system is still damaged.

thus the two most promising treatments are anti-retrovirals and immune modulator drugs.

Damn, we are screwed----even more so than HIV patients.

Yet the needle-sticking drug abusers and prostitutes have access to better care than the CFS person who was exposed to a virus in nature??

 

[ukxmrv]

Depends which virus you have. Children of my generation had loads of viri and their immune systems often coped. Obviously some didn't.

Then there are people ill for a month or even a year or two with EBV who are treated and seem to make a full recovery. Look at the work of Dr Lerner for example. Some never recover.

A retrovirus is a different thing of course. If you read more on this forum you will learn about XMRV and the efforts people are making to try and treat that.

It may possibly help you to find out what you are infected with, then treat that infection. It may not be a virus, something else totally different could be causing your symptoms.

You will find lots of different and old threads that may be of interest to you on this forum and other groups. People with CFS have been debating these issues for decades.

 

[Sushi]

I'm not trying to be pessimistic, but even if they treat the virus, the immune system is still damaged.

Damn, we are screwed

Or, another possibility. Assuming our immune system is damaged, assuming we find a way to treat the cause (XMRV or a party with a big invitation list?), a possible next step could be stem cell infusion. The price in Panama (reputable) seems to keep going down.:victory:

Sushi

 

[SaveMe]

Or, another possibility. Assuming our immune system is damaged, assuming we find a way to treat the cause (XMRV or a party with a big invitation list?), a possible next step could be stem cell infusion. The price in Panama (reputable) seems to keep going down.:victory:

Sushi

Yes but we will never be cured, we will never have a normal functioning body no matter how many stem cell treatments no matter how advanced medical technology becomes. This sucks.

 

[leaves]

Oh well... Nobody promised me life would be a picnic.

 

[SaveMe]

Oh well... Nobody promised me life would be a picnic.

Everyone who is healthy from the start is entitled to one.

We have a physical, organic illness in 2011 with no answers ---this is BS

 

[Jenny]

SaveMe - There is some hope. I know quite a few people who have recovered 95% at least. And I myself had 12 years remission, when I was living a normal life and only had occasional mild symptoms.

I hope you feel a little better soon.

Jenny

 

[Sushi]

Yes but we will never be cured, we will never have a normal functioning body no matter how many stem cell treatments no matter how advanced medical technology becomes. This sucks.

After being sick for so long, I'd rejoice at a "functional" body that will allow me to work, take care of myself, have a bit of fun. Don't think I'd even recognize what a normally functioning body would feel like after so long! I'm just trying to look at the sunny side of realistic!

Sushi

 

[SaveMe]

SaveMe - There is some hope. I know quite a few people who have recovered 95% at least. And I myself had 12 years remission, when I was living a normal life and only had occasional mild symptoms.

I hope you feel a little better soon.

Jenny

Really? anything trigger your remission? One guy told me a stomach bug. Did you rest alot or exercise moderately? Ive had this for <2years, what to do?

 

[SaveMe]

After being sick for so long, I'd rejoice at a "functional" body that will allow me to work, take care of myself, have a bit of fun. Don't think I'd even recognize what a normally functioning body would feel like after so long! I'm just trying to look at the sunny side of realistic!

Sushi

Why me? I ask that every day

 

[Lala]

Saveme, I believe our immune systems are able to repair as are other parts of our body. In other case you would die soon after birth, I think. Mine was able to recover after treatment with antibiotics. I suffered severe immune deficiency and now I have only mild deficiency in cellular immunity. My complement system, for example, was so low in the past, it was unmeasurable and now it is back in normal. The problem is that treatment is usually long and very difficult as viruses and bacteria causing immune deficiency are extremely hard to eradicate. I have seen first positive results in my immune tests after 1 and 1/4 year of continuous antibiotics, which of course is no fun.

 

[SaveMe]

antibiotics----what did you have LYme?

 

[SaveMe]

DO YOU HAVE ANY OF THESE SYMPTOMS ? how many

1. Exhaustion
2. Widespread muscle pains
3. Headaches
4. Brain fogs- (attn./concentration) can stare blankly for long periods of time, where did I park the car? (short term memory loss) A distinct shift in cognitive function during onset. Disorientation- lost in amusement park. Where am I? Metal fatigue. Sluggish thinking.
5. Excessive mucus in throat that I spit up
6. Sunlight sensitivity really hurts my eyes, tear up easily
7. Initial rapid, sudden weight loss during onset of virus
8. Loss of strength, (cant make a strong fist)
9. P.E.M (bike ride incident, even during exercise) wiped out the following day
10. Dizziness (especially during exercise)
11. Un-refreshing sleep
12. Feeling that I am approaching death (episodes) horrible malaise
13. Pulsating/Pounding/Faint head upon standing  Orthostatic Intolerance
14. Pain/Temp sensitivity (colder than usual, hot flashes, pat on the back incident)
15. Swollen lymph nodes in neck and groin area felt by doctor
16. Missed days of school, cant get up from chair/bedwhat happened to my internal energy supply?
17. Grinding/Snap, crackle, pop neck (stiff in mornings)

How many of these do you have? Thanks

 

[Lala]

I believe chlamydia pneumoniae, I have always tested negative for lyme, but the answer is: you never know.

 

[ukxmrv]

I'm happy to take drugs for every day of what is left with my life. It's not a problem. After 27ish years of horror, any improvement would be a relief.

This may be hard to come to terms with when newly ill. I do appreciate this. Funnily enough I never asked why me. Just a difference in personal styles.

You have come to this disease at an exciting time. There is finally some hope (well for me anyway).

Keep reading other threads and you may find things that will help you now.

XMRV+

 

[SaveMe]

I'm happy to take drugs for every day of what is left with my life. It's not a problem. After 27ish years of horror, any improvement would be a relief.

This may be hard to come to terms with when newly ill. I do appreciate this. Funnily enough I never asked why me. Just a difference in personal styles.

You have come to this disease at an exciting time. There is finally some hope (well for me anyway).

Keep reading other threads and you may find things that will help you now.

XMRV+

when were you xmrx+ what is the treatment 4 that? thanks man