xmrv or dysfunctional immune system

[heapsreal]

I know xmrv is a hot topic, but depending on which study(positive) its only 67% positive for xmrv, theres still 33% with cfs and no xmrv. I still cant help but think we have a dysfunctional immune system which leaves us open to different infections, maybe any infection found in cfs people are just opportunistic because of our poorly functioning immune system. Dr lerners latest study shows some appear to just have chronic ebv, ebv is usually controlled by an intact immune system. I have read in the past where some guru cfs docs as a last resort have used gamma globulins and immunoglobulins with success,, these have a general affect in strengthening the immune system, and to a lesser extent immunovir has had a modest amount of success.

Has anyone had experience with immunoglobulins/gammaglobulins or got any links to recent studies involving these medicines. I believe we have cfids, chronic fatigue immune dysfunction syndrom it best describes us. It appears to me in my personal research that the most common abnormality found in cfids is nk cell dysfunction as well as other lymphocyte abnormalities either high or low. Of coarse a retrovirus could be causing this but with 33% not testing positive to xmrv, im starting to think its opportunistic.

cheers!!!!!

 

[dsdmom]

Hi heapsreal,
I think we have to also realize that we dont' know for sure it's 67% of patients with cfs. It could be higher (or could also be lower - since we don't REALLY have a handle on this yet). It is my guess that xmrv IS causative and causes the immune dysfunction which opens us up to so many other things.

Anyway, I am waiting to hear if my neurologist can get ivig approved for me. I know the insurance company is going to say no at first so he will have to fight for it - we'll see how it goes. I'm nervous about it since I know people who really did not feel well with it, but we'll see...

 

[heapsreal]

please keep us updated on ivig.

cheers!!!!

 

[dannybex]

I'm in agreement with you both. Also...weren't there numbers from Lombardi's lab a couple months back that about 35% (???) were coming back positive? Certainly some of those patients perhaps have been misdiagnosed, but who knows for sure. Plus, there are so many different types of co-infections or chemical exposures -- some people have gut issues, others don't, some have orthostatic intolerance, others don't, some have methylation or sulfation issues,.etc., etc.

So even if XMRV is found in the vast majority of patients, I'm not sure that one (or two, or three) antiretroviral drugs (or natural remedies) will be 'the' answer for everyone. They might still have to treat or address other related issues.

???

 

[dsdmom]

Good point, danny. I wonder what will happen if we are all told that we do have xmrv and it is causative...will treating with antiretrovirals and hence, taking care of the virus, take care of everything else? Or will we have to rebuild our systems anyway.... I suppose it's possible that treating the virus will allow our bodies to get back to where it's supposed to be on it's own...maybe it would take longer than treating with other methods, but I guess only time will tell.

Anybody have the ability to travel a few years into the future and report back to us what is happening with CFS???

 

[IntuneJune]

Heapsreal, Dsdmom....the chicken or the egg...which first.... well....

One day, I hope we find out; but first if there was something (a virus?) "found" that could be addressed (treated) maybe we could be treated and have a little more of a normal life.

I have a dysfunctional immune system diagnosed maybe three years ago. I was diagnosed with FMS thirty years ago. Drop dead fatigue is also an issue I have dealt for as long. Also, there are times I must lay down before I fall down, but nothing to the extent I read about so many folks on this board.

For the immune deficiency, for two plus years I have been receiving IVIG, (intravenous immunoglobulins). My blood work has improved but my FMS symptoms, pain and fatigue have not appreciably improved. I do have a little more energy the week after, but it is not great.

Where I notice the improvement is in fewer upper and lower respiratory tract infections.

My infusions are very, very expensive, and every three weeks.

June

 

[liverock]

So even if XMRV is found in the vast majority of patients, I'm not sure that one (or two, or three) antiretroviral drugs (or natural remedies) will be 'the' answer for everyone. They might still have to treat or address other related issues.

???

I already quoted on the other thread expert opinion by a doctor who said AZT and other retrovirals stopped replication of HIV but did not reduce fatigue and also caused mitochondria damage.

Just what we need!! We find we have the virus and have to wait years till suitable drugs are developed.:Retro mad:

http://www.forums.aboutmecfs.org/sh...logy-Study-on-CFS-Published&p=98449#post98449

 

[taniaaust1]

I know xmrv is a hot topic, but depending on which study(positive) its only 67% positive for xmrv, theres still 33% with cfs and no xmrv. Of coarse a retrovirus could be causing this but with 33% not testing positive to xmrv, im starting to think its opportunistic.

cheers!!!!!

I think it was found to be far higher than 67%, i think on further testing after that, didnt they find it in 96%???? (i may have that a little wrong but im sure it was in the 80s or 90s.. please someone tell me if ive got this wrong). There are rumours that at least one of the postive studies being held too is something like 80% .

I thou are thinking like you, i think there could be someone which predisposes us to catching it in the first place.

 

[dsdmom]

I have a dysfunctional immune system diagnosed maybe three years ago. I was diagnosed with FMS thirty years ago. Drop dead fatigue is also an issue I have dealt for as long. Also, there are times I must lay down before I fall down, but nothing to the extent I read about so many folks on this board.

For the immune deficiency, for two plus years I have been receiving IVIG, (intravenous immunoglobulins). My blood work has improved but my FMS symptoms, pain and fatigue have not appreciably improved. I do have a little more energy the week after, but it is not great.

Where I notice the improvement is in fewer upper and lower respiratory tract infections.

My infusions are very, very expensive, and every three weeks.

June

June,
When you say you have a dysfunctional immune system - how so? And what blood work has improved on ivig? I'm just curious what markers have changed for you. Also - are you by chance in the Boston area? Just curious where you're having ivig...

 

[IntuneJune]

IVIG and immune issues

DSDMOM,

I live in RI, my immunologist is at Beth Israel Hospital. I am receiving infusions in RI.

It is easy for a doctor to order blood work; total IgG, IgG, IgM, IgA, etc, and the subclasses 1,2,3,4.

The only problem is the doctor has to suspect an immune deficiency as these tests are not routine.

One of the Immune Deficiency Foundation's mantra is "when you hear hooves, think zebras, not horses." Or something to that effect..... in other words, think outside the box.

I am on vacation, not home and it is harder for me to think things through. Hope I am making sense.

June

 

[dsdmom]

Hi June,
My neurologist is trying to get my ivig approved based on small fiber neuropathy.
I was just curious if you have had any of the other tests done - such as NK cell function, cytokines, etc....
I am in the boston area but see Nancy Klimas in Miami as my immunologist and those are the tests I have had done. It will be interesting to see if any of those change with ivig although nancy didn't think it would do much to the nk function.
how do you feel when you get ivig? do you feel sick?

 

[glenp]

Heapsreal

There is a poster "april haun" who says gammaglobulin has helped her here is the link ----

http://cfsknowledgecenter.ning.com/...2477197:Comment:60598&xg_source=msg_com_forum

Quote
the only thing that produced a notable difference was gammaglobulin by IV once a month. that was back in 1992, 93. by the 4th month i was able to tell when i was getting close to the time for my next IV. I was slowing down, thinking was hard, etc. it was like, wow, where's the IV, let's do this!!
End quote

glen

 

[SOC]

I'm convinced there's some kind of genetic factor, XMRV or not. First, because we have at least 3 ME/CFS cases in my family with not enough physical contact between the first and the other 2 for there to have been transmission and we have multiple generational cases of things like Hodgkin's Lymphoma. Second, because the patterns we've seen so far don't suggest a clear direct transmission path (although that could certainly change as more research comes available). Third, because I'm pretty sure I heard someone like Dr M or Dr P say that it was likely.

Neither ME/CFS doc we've seen has even suggested immune system testing.... I'm starting to wonder about that....

 

[alex3619]

Hi dsdmom,

I'll have a go at transporting into the future, and when I get their I will contact the future PR and report. Of course, I will be time travelling the slow way.

Bye
Alex

Anybody have the ability to travel a few years into the future and report back to us what is happening with CFS???

 

[alex3619]

Hi Sickofcfs,

There is something that might explain it: is there a common ancestor? If a grandparent, for example, had XMRV and passed it on, but the parents didn't get sick, this could explain it. It all depends on your family, and this is hard for me to judge.

Bye
Alex

I'm convinced there's some kind of genetic factor, XMRV or not. First, because we have at least 3 ME/CFS cases in my family with not enough physical contact between the first and the other 2 for there to have been transmission and we have multiple generational cases of things like Hodgkin's Lymphoma. Second, because the patterns we've seen so far don't suggest a clear direct transmission path (although that could certainly change as more research comes available). Third, because I'm pretty sure I heard someone like Dr M or Dr P say that it was likely.

Neither ME/CFS doc we've seen has even suggested immune system testing.... I'm starting to wonder about that....

 

[glenp]

working brains

It sure is nice to have the posts here - and those still with good working brains!! I think it is us patients that have to do it.

I also believe that it has a lot to do with genes. Perhaps our grandparents or parents developed a "secret illness" between the births of their children. First children not affected but the ones after this "secret illness" Can these illnesses damage the DNA? And now the generations to come. I think Alex can shed light here. Tg we have some many "good" brains here. Some children are breast fed and others not - so maybe something there too.

I think Corts doing the polls is going to help us. We need many more extensive polls, but who is to do it?? Yes I think the answers all lie here with us to figure much oif it out

glen

 

[alex3619]

Hi glenp

I know a little on this topic but not much. Retroviruses are top of the list for damaging DNA, but mutagenic toxins are probably more common as a risk factor. The other issue is how genes are expressed. Illnesses in pregnancy, or premature birth, seem to be able to alter gene expression, and this might make us vulnerable to a host of things. In the final analysis, all that can be said is "maybe" because the science isn't there yet.

Oxidative stress can also damage DNA, and problems with the methylation cycle can inhibit the body's capacity to repair DNA damage.

Something else that should be mentioned are teratogenic toxins: they don't alter the DNA but they change the way the body forms and develops by intering with growith. There are many such toxins suspected, but relatively few actually proved that I am aware of. Again, there is too little research to be sure.

Bye
Alex

I
Can these illnesses damage the DNA?

 

[IntuneJune]

DSDMOM and HEAPSREAL

Heapsreal

There is a poster "april haun" who says gammaglobulin has helped her here is the link ----

http://cfsknowledgecenter.ning.com/...2477197:Comment:60598&xg_source=msg_com_forum

Quote
the only thing that produced a notable difference was gammaglobulin by IV once a month. that was back in 1992, 93. by the 4th month i was able to tell when i was getting close to the time for my next IV. I was slowing down, thinking was hard, etc. it was like, wow, where's the IV, let's do this!!
End quote

glen

What Glen reposted above....................

When I first started IVIG I did feel better, maybe I would have used the word, appreciably.... the thinking was clearer and I was not as exhausted, and yes, when you get close to the next infusion, you can really feel run down, out of gas and you are ready for the next infusion.

The same is true now but just not as dramatic. And overall, I am not improved as far as the FMS symptoms go. Not at all.

I do not get sick from the infusion, as a matter of fact, I get the sense my body is a big sponge just soaking up the good stuff. I used to be premedicated "just in case" but slept through the entire infusion and did not like driving home drugged. Now I get nothing.

June

 

[SOC]

Hi Sickofcfs,

There is something that might explain it: is there a common ancestor? If a grandparent, for example, had XMRV and passed it on, but the parents didn't get sick, this could explain it. It all depends on your family, and this is hard for me to judge.

With the ME/CFS cases, there's a biological connection, that is, a common ancestor. The first known case is my father's brother, then me, then my daughter. I imagine we're inheriting either a genetic immune abnormality, or perhaps, as you suggest, XMRV in the DNA somehow.... ?

 

[IntuneJune]

Primary immune deficiencies are also "in the genes."

With all the workups I have had over the years, I was only diagnosed with a PIDD a few years ago (if Hollywood wanted to resurect "Golden Girls, I could apply). No one else in the family has been diagnosed, though. My mom did suffer with FMS symptoms, but not chronic infections to my knowledge.

June