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My Rituximab experience for ME

Hutan

Senior Member
Messages
1,099
Location
New Zealand
At age 10, I had a year of what was diagnosed as ME. I recovered to full health.

I had shingles and glandular fever together at age 17 (but both mildly).

Since developing ME again at age 46 or so, I developed recurrent cold sores. If I miss two days in a row of Valtrex (2x500/day), I get a cold sore.

However, my son who developed ME at the same time has only had a couple of cold sores in the past 2.5 years since ME onset (no Valtrex).

I don't know what all that means. Perhaps there is something about ME that makes it easy for latent infections to activate if there is a genetic or environmental susceptibility.
 
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heapsreal

iherb 10% discount code OPA989,
Messages
10,089
Location
australia (brisbane)
I've had shingles multiple times, and at an age the doctors called "unusually young for shingles".

Recently at 43 i have had 3 shingles outbreaks within a couple of weeks. Side of my head and one both lower legs. 9 months ago had testing to that said i had good immunity to vzv. I had this test as i was considering vaccination .

I think our poor innate immune system is what allows this to happen .
 

heapsreal

iherb 10% discount code OPA989,
Messages
10,089
Location
australia (brisbane)
@redaxe
with what antivirals do, i think they stop viruses replicating ie making more virus but i think they dont stop viruses reactivating ie waking up and sucking the life out of us .

I think thats why we can still have viral crashes while on avs but recovery time will be quicker as viral load drops down.

I have often wondered if we could make these viruses reactivate on purpose while smashing them with avs. Its thought that avs only work on the viruses when they are reactivating.
 
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EtherSpin

Senior Member
Messages
257
Location
Melbourne , Australia
@SOC -



I'm highly skeptical that herpesviruses play an important role in ME, although I believe they can sometimes trigger it. One piece of evidence that I would be looking for would be a substantially higher rate of shingles. I have never heard of an ME patient even getting shingles - although I'm sure there must be some - yet if their ability to control herpesvirus infections were so impaired as to cause an ongoing illness, one would expect to see it frequently. Also, many of us never had any kind of obvious herpesvirus infection at all other than chicken pox as a kid (my mother and I included). No infectious mono (caused by EBV or CMV - some use the term for both), no cold sores, etc. - and these are all common in the population. I did have roseola as a kid, but almost all kids do - and it was neither unusually severe nor prolonged, and I had a generally healthy childhood.

if its a useful anecdote you can have my summary - glandular fever knocked me around badly at age 13, month off school, rapid weight loss (suddenly looked gawky! all ears,nose and bones!) and I got small fibre neuropathy that has meant permanent thermal allodynia. then i had a break from herpes, at age 27 got something that presented like glandular fever but didn't show up on tests - this started my ME in the official sense,the energy pool dropping to under 40% when at my best, cognitive dysfunction arriving. this was 07. then from 2008 -2009 my ME got worse as I took time off work once a quarter to regain strength and also with shingles - I had three bouts. in 2010 I was finally finished off and began to phase out of the work force when I got CMV and my fatigue and cog fog levels at least doubled and POTS arrived fairly immediately.

I'm hoping ritux could form part of a regime for us where we either go into a clinic once a week or periodically book in for a week stay in a clinic for ritux, antivirals and perhaps some folistatin and thymosin 4 in conjunction with an exercise program to make the most of those . - basically our own version of what dialysis is for renal problem patients
 

redaxe

Senior Member
Messages
230
How do we know that we (or at least some of us) weren't hit by a mutated strain of EBV or HHV6 that produces a different pathology to infectious mono? Presumably you'd carry some resistance to the virus but being a new strain it could do some damage to the immune system or establish a higher level of non-permissive activity?

That could explain the cluster outbreaks. I do understand one inconsistency about the 'viral reactivation' theory is what tips your immune system from keeping the viruses essentially in latency to having a massive jail break that you can't control? And why does it seem often occur in clusters - It seems uncanny how many people on here report their families also have CFS/ME. That doesn't seem to follow the regular pattern of autoimmune diseases.

I suspect I may have been involved in a cluster outbreak as I can say that at the approximate time this started another person in my old exercise training group got hit as well after what seemed like a persistent relapsing cold or flu.
 

minkeygirl

But I Look So Good.
Messages
4,678
Location
Left Coast
@redaxe


I have often wondered if we could make these viruses reactivate on purpose while smashing them with avs. Its thought that avs only work on the viruses when they are reactivating.

Last year I had a viral reactivation while on 500 mgs Famvir. I believe it was due to stress from dental work.

I upped my dose to 1000 mgs and within 2 days all the new symptoms, sore throat, swollen glands, crippling fatigue were gone.

A few months later, while on 1000 mgs Famvir I had another reactivation.

This time I stopped Famvir for 4 days then smashed it with 1000 mgs (very physically painful which I expected) and again within 2
Days I was better.

I have not had a reactivation since. I will say I'm not back to where I was before the reactivation but far better than I was.

So maybe there is something the heaps theory?
 
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EtherSpin

Senior Member
Messages
257
Location
Melbourne , Australia
How do we know that we (or at least some of us) weren't hit by a mutated strain of EBV or HHV6 that produces a different pathology to infectious mono? Presumably you'd carry some resistance to the virus but being a new strain it could do some damage to the immune system or establish a higher level of non-permissive activity?

A relative (in her late 60s now) had what she calls CFS around 25 years ago, she was in Papua New Guinea and got a virus that presented like glandular fever but tested negative (to anything) and the villagers recognised it , described it and said it was common to have had it in their region. she had severe cognitive fog and utter exhaustion and changed her foods around what she felt helped her - she claims now to have a relapse every 2 or 3 years but that she staves it off by switching to this diet, funnily enough all the foods she talked about were high in lysine . I suspect a dozen herpes viruses are globetrotting undetected.
 

redaxe

Senior Member
Messages
230
Well the theory on HHV6 is interesting. Apparently there are 2 varieties but they are really separate species. The B variety is apparently almost universally carried and generally presents no more than a cold to an infant.

The A variety is rarer and much more nasty according to the experts and this one seems to be the found in people with CFS/ME. So with HHV6 it might not be a latent virus that's reactivated from childhood (the B virus) it could be that some of us got hit by the nastier A variety.

It doesn't help the testing is so rudimentary. The standard antibody tests don't distinguish between varieties and there is no early antigen test either,. Heck I even tried to get a IgG test in Australia - I can't even seem to get that done. So it seems like I've got to fly to America if I want to get a consultation about it.
 

RYO

Senior Member
Messages
350
Location
USA
Did you or other study participants experience significant muscle symptoms as part of you CFS/ ME.

Did ritux help with "muscle stamina"?

Thank you.

I hope you continue to improve.
 

funkyqueen

Senior Member
Messages
123
Location
South of France
Hi there,

Some news on my Rtx's experience :

( this is the copy/paste of my post on Rebecca's thread, http://forums.phoenixrising.me/index.php?threads/still-doing-great-since-rituxan.40201/#post-645676 )




@Rebecca2z I'm really happy for you , thanks for keeping us updated !

As for me, Rituximab still working,even if i do not answer as well as you , far of that.. :(
The phrase of Professor @Jonathan Edwards resonates in my head: "... although we noticed that the Ritux worked less well on severe / very severe MEers " ... :(

However, for nothing in the world I do not regret having the incredible chance to follow this protocol
(you ask about what was the Haukeland's protocol, i do not remember exactly the study, but, i'm pretty sure, i have the same as Haukeland - i'm sure i receive 1gr for each infusions, but not sure for the time between each ones), so :
1gr at day O
1gr at day 14
1gr at week 12
1gr at week 24
1gr at week 40
and the last one at week 60

.and....i know i really do not want to talk publicly about what kind of symptoms are improved to me, thanks to Ritux, but i can say.. i share with you the sames ones that you told us ;-)

Like you, my greatest wish is that this drug can be accessible to all MEers...

Did you note any side effects to Rtx? In my case, thank God/or chance, -and for the moment- , very little: just my skin has become finer, (you know, like those who are under high doses of corticosteroids? but much less than them) and I guess i can impute it to Ritux but is very light, and my doctor told me that was not an early dermatoporosis, so all is ok :)

@@Raines , i'm really sad for you that you sister was joking :'(
 
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Tammy

Senior Member
Messages
2,181
Location
New Mexico
don't think so. No link has been found despite 30 years of people trying very hard to find one. More or less everyone has EBV and there is no link in time between infectious mononucleosis and RA.
I did a quick google on EBV and RA.............there seems to be numerous articles on this subject indicating a possible link between EBV and RA as well as other "autoimmune disorders"
 

Jonathan Edwards

"Gibberish"
Messages
5,256
I did a quick google on EBV and RA.............there seems to be numerous articles on this subject indicating a possible link between EBV and RA as well as other "autoimmune disorders"

Yes, many, many people, like my good friend Patrick Venables, have made a career out of trying to link EBV to RA or lupus or whatever. But now that the dust has settled nothing was ever really pinned down. Immunology is full of theories but less full of convincing evidence. Everyone wants to find a trigger infection because they think you have to have an environmental factor. But you don't.
 

Tammy

Senior Member
Messages
2,181
Location
New Mexico
Yes, many, many people, like my good friend Patrick Venables, have made a career out of trying to link EBV to RA or lupus or whatever. But now that the dust has settled nothing was ever really pinned down. Immunology is full of theories but less full of convincing evidence. Everyone wants to find a trigger infection because they think you have to have an environmental factor. But you don't.
Well...................the body just doesn't get sick, inflamed, etc.etc. etc. for no good reason and there seems to be plenty of researchers who think that a link between virus and autoimmune is important enough from the information that they have already gathered to continue looking into this. I applaud the researchers who don't give up trying to find root cause for disease.
 

Jonathan Edwards

"Gibberish"
Messages
5,256
Well...................the body just doesn't get sick, inflamed, etc.etc. etc. for no good reason and there seems to be plenty of researchers who think that a link between virus and autoimmune is important enough from the information that they have already gathered to continue looking into this. I applaud the researchers who don't give up trying to find root cause for disease.

I am not suggesting there is no cause but the idea that we have to have either a genetic or an environmental cause is just plain wrong - the epidemiology textbooks tell us that. The trouble is that immunologists tend not to read any epidemiology. Most autoimmune diseases have genetic predispositions but the ret of the causation appears to be chance - like in many cancers. And we have very good explanations from within the immune system for why that should be so. The immune system makes antibodies and T cell receptors at random. So I am not suggesting 'no good reason' - I am suggesting that we need to make sure that the reasons actually fit the evidence.

Lots of researchers think viruses are involved because their teachers thought that and the same back to 1950 when viruses came to be understood. The reality is that nobody has in fact gathered any information to link viruses as causes to autoimmunity - with maybe a few exceptions (I am not sure I can think of any convincing ones though).

We are all trying to find the root causation of disease but personally I think we should move on from speculations from fifty year ago to something that fits with the figures!!
 
Messages
2,087
I am not suggesting there is no cause but the idea that we have to have either a genetic or an environmental cause is just plain wrong.
We are all trying to find the root causation of disease but personally I think we should move on from speculations from fifty year ago to something that fits with the figures!!

Do the figures suggest onset associated with virus. ? I'm not suggesting root cause, and it's been discussed in other threads but isn't there a theory that the problem exists prior to an infection but only appears post infection.

Could this theory hold water ( for some cases ) if autoimmunity were the issue ?
 

Aurator

Senior Member
Messages
625
I am not suggesting there is no cause but the idea that we have to have either a genetic or an environmental cause is just plain wrong - the epidemiology textbooks tell us that. The trouble is that immunologists tend not to read any epidemiology. Most autoimmune diseases have genetic predispositions but the ret of the causation appears to be chance - like in many cancers. And we have very good explanations from within the immune system for why that should be so. The immune system makes antibodies and T cell receptors at random. So I am not suggesting 'no good reason' - I am suggesting that we need to make sure that the reasons actually fit the evidence.
The rudimentary machinery in the scientific part of my brain struggles even with basic things, so I do apologise and hope you'll bear with me.

I've no idea what kind of a disease ME/CFS is. Just to help me be a little clearer about what it might be, am I right in thinking that if classic ME/CFS is in fact an autoimmune disease, then the frequent incidence of an acute infection marking the beginning of ME/CFS for a patient has nothing to do with the onset of the illness/disease? I'm quite prepared to accept that it doesn't, whether it's autoimmune or not. On the other hand, if ME/CFS isn't an autoimmune disease, might the acute infection be a causal factor in the development of the disease, and, if so, what might be going on biologically speaking to explain the cause/effect relationship? Even more basic, what sort of a disease would it be?
 

beaker

ME/cfs 1986
Messages
773
Location
USA
I am not suggesting there is no cause but the idea that we have to have either a genetic or an environmental cause is just plain wrong - the epidemiology textbooks tell us that. The trouble is that immunologists tend not to read any epidemiology. Most autoimmune diseases have genetic predispositions but the ret of the causation appears to be chance - like in many cancers. And we have very good explanations from within the immune system for why that should be so. The immune system makes antibodies and T cell receptors at random. So I am not suggesting 'no good reason' - I am suggesting that we need to make sure that the reasons actually fit the evidence.

Lots of researchers think viruses are involved because their teachers thought that and the same back to 1950 when viruses came to be understood. The reality is that nobody has in fact gathered any information to link viruses as causes to autoimmunity - with maybe a few exceptions (I am not sure I can think of any convincing ones though).

We are all trying to find the root causation of disease but personally I think we should move on from speculations from fifty year ago to something that fits with the figures!!

However "chance" does not fit w/ cluster outbreaks of ME. It seems to me rather important to figure out this aspect of the disease to prevent it from happening in the future.