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Do you always get better once your immune system starts working again?

snowathlete

Senior Member
Messages
5,374
Location
UK
Following starting methylation protocol treatment, my immune system has turned back on (previously it wasnt right and i never caught anything - though i accept that my statement that it wasnt on previously, probably isnt accurate).

I think the immune system differences in ME/CFS are a fairly reliable hallmark of the illness, and so getting out of that rut where it isnt functioning normally has been a key aim of mine for a while now.

The last month or so I've started getting colds and stuff (suffering now as it goes) but im wondering if other people have had similar experiences of the immune system starting to work again (regardless of what treatment caused it to happen) and whether you then got better from your ME/CFS and to what degree you improved.
 

kurt

Senior Member
Messages
1,186
Location
USA
Most definitely yes. Prior to finding treatments that worked I never got the colds everyone else in my family caught, but instead I would have the malaise that could last for weeks. But now with several treatments helping, methylation support, rehydration, and some strong immune-stimulating supplements, I get the colds, and get them pretty much like I did before CFS. This has not led to remission of CFS, but there are some noticeable improvements.
 

SOC

Senior Member
Messages
7,849
Snow, I hate to be a downer here, so maybe other people have different experiences than mine, but your experience (based on other posts) has sounded a lot like mine. Going from sensitivities and not catching things to getting colds and flu to catching everything in sight was a step in the downward progression for me.
 

heapsreal

iherb 10% discount code OPA989,
Messages
10,089
Location
australia (brisbane)
Snow, I hate to be a downer here, so maybe other people have different experiences than mine, but your experience (based on other posts) has sounded a lot like mine. Going from sensitivities and not catching things to getting colds and flu to catching everything in sight was a step in the downward progression for me.

I agree with soc in that its not a good gauge, initially with me/cfs i never use to get colds etc but now a few years on i seem to catch colds/flus sinus issues etc have had some improvement in cfs but very up and down, i wouldnt say it correlates to improvement .

cheers!!!
 

Freddd

Senior Member
Messages
5,184
Location
Salt Lake City
I caught everything in sight before I had the crash in 1987. After that I was very isolated and was exposed to very little and caught less, but I was taking 16 grams of C which turned off my strep suseptability like a switch. When my system started working I had a flurry of stuff, skin infections, sore throat - a very peculiar sore throat in the middle of the summer 2003, painfully swollen glands, and now I don't get sick and I feel decent adjusted for age.
 

Sallysblooms

P.O.T.S. now SO MUCH BETTER!
Messages
1,768
Location
Southern USA
What supplements do you take for the immune system? Do you have a doctor that knows supplements? They have helped me a lot.
 

Sing

Senior Member
Messages
1,782
Location
New England
My experience is that I don't catch nearly as many colds and bugs as initially; however, that is because I gradually learned to stay within my "energy envelope". First of all, I had to quit the jobs I had, because I could no longer do them in terms of energy and cognition, and because trying to make those efforts also brought on another flu-like illness. I slowly learned what my energy envelope was and what I needed to do to stay within in, most of the time. I also gathered and learned some treatments to help. The net result was far fewer infections and overt illnesses. BUT, all I have to do is exceed my energy envelope or go without those medications and treatments which sustain a certain level of functioning, and I am right back where I was. I KNOW, from many years of experience, that I have the exact same underlying illness or condition every single day--ME/CFS. In my experience and opinion it does not improve, and nothing out there yet is a cure. With aging or years of having this condition, more problems and limitations come on board. So, although the official idea is that it does not get worse, what does get worse is the patient. On the other hand, one's strategies can keep improving so that there can be some improvements in specific ways.
 

meandthecat

Senior Member
Messages
206
Location
West country UK
I've been ill for 6yrs now and been one of those that didn't catch a thing, a cold would start, you know when you recognise it, but just before symptoms emerge, it would go.

I have just started to get colds; I started with sublingual methylcobalamin a couple of months ago and it is powerful stuff. I have come so far and feel a resilience that has been absent for so long.

I am cautiously optimistic
 

snowathlete

Senior Member
Messages
5,374
Location
UK
In my experience and opinion it does not improve, and nothing out there yet is a cure. With aging or years of having this condition, more problems and limitations come on board. So, although the official idea is that it does not get worse, what does get worse is the patient.
It does seem that most people, the longer they have it, do seem to get more problems and limitations. Im hoping that isnt whats happening here.

Some people do seem to get better, a small portion of people with the illness. Of course, thats subjective for a number of reasons. Im just hoping it turns out to be the case for me.
I have just started to get colds; I started with sublingual methylcobalamin a couple of months ago and it is powerful stuff. I have come so far and feel a resilience that has been absent for so long.

I am cautiously optimistic

Im hoping this happens for me too. Im certainly pleased to hear its working for you, so it seems.
The thing that makes me optimistic is that my change occured so obviously after having started methylation protocol.
Right now this cold feels pretty dreadful, but its also a bit strange:
I caught it last in the family, a full week after my daughter, and about 4-5 days after my wife. My symptoms dont seem typical. The sore throat is (thats how ALL my colds have always started, all my life) but i dont have a running or stuffy nose yet, and i would normally by now have that. I do feel very fluey though, and strangest of all, i just feel lightheaded, like i am about to pass out. Ive had that most of today and its a really strong feeling - similar to when you have drunk way in excess (something i have not done since i was in my early twenties) and are about to pass out from it. Even writting this, i feel like i could go unconcious any moment.......uhhh, here i go.....no, only kidding.
 

ukxmrv

Senior Member
Messages
4,413
Location
London
I swing between the two over long periods of time, maybe 7 years of catching nothing, then 7 years of catching everything, then another 7 years and back again etc. Sore throats, viral symptoms, colds, sinus infections, gastric flus etc have plagued me for 30 years but in very different levels of intensity and sometimes it is "just" the sore throats/glands with no colds / flus etc . Even these can be weak or strong sore throats/glands.

My ME symptoms can move in patterns independant of one another. If charted over long periods of time it may be that other groups of symptoms move in longer or shorter patterns. I'm thinking of an orrey now with different sets of symptoms as planets moving in different paths.

Overall I am getting sicker and sicker but the actual symptoms may vary in intensity from decade to decade. Less or more viral symptoms doesn't relate to all over functioning or things like PEM for me.
 

SOC

Senior Member
Messages
7,849
I caught it last in the family, a full week after my daughter, and about 4-5 days after my wife. My symptoms dont seem typical. The sore throat is (thats how ALL my colds have always started, all my life) but i dont have a running or stuffy nose yet, and i would normally by now have that. I do feel very fluey though, and strangest of all, i just feel lightheaded, like i am about to pass out. Ive had that most of today and its a really strong feeling - similar to when you have drunk way in excess (something i have not done since i was in my early twenties) and are about to pass out from it. Even writting this, i feel like i could go unconcious any moment.......uhhh, here i go.....no, only kidding.

FWIW, HHV-6 and HHV-7 reside in salivary glands. Sore throat and swollen glands (especially near the parotid and submandibular glands) could signify a reactivation of one of these viruses. Since these viruses reactivate and are suppressed again by healthy people with healthy immune systems, this is ordinarily not a big deal. OTOH, if these symptoms persist in the absence of the usual cold symptoms (runny nose, etc), or if the occur with increasing frequency, you might want to consider a persistent HHV-6/HHV-7 infection. Not that it will do you a lot of good unless you can convince a doc to treat you with antivirals. Maybe in the early days, herbal antivirals and immune support supplements would help...?
 

snowathlete

Senior Member
Messages
5,374
Location
UK
up until i started the protocol, i got nothing, not even a sore throat.

Interesing SOC what your saying about it maybe being a herpes infection. I plan to start some antivirals for herpes infection soon. I read a whole bunch of research, and asked losts of people on here their experiences with herpes anti virals - most everyone i asked, has replied now. The best is clearly Valcyte, with some people having full remision, but its hyper expensive, so actually only really an option if you have insurance. With the NHS in the UK, hardly anyone has insurance like that, so its not an option for me (though i do actually have a health insurance policy through work, so i ought to check that, but think it isnt going to pay out for this).
The second best alternative, seems to be Famvir, which is much cheaper. Not quite as good, but probably the best of the rest.
Some people dont get on with these antivirals, but i usually tollerate meds well.

My GP said no to them basically, though she said she might run some of the tests (I have an appointment this coming week) if i am found to have a problem in the blood, then i can argue to have the antivirals, not on the basis of the ME, but on the basis of the herpes infection, and i expect to have more luck with that approach.

I will probably have to buy generics online from India and the like. I was going to go ahead without testing because they arent that reliable the tests, and cost. But my family want me to test first, and my mum is talking about helping with costs. She wants me to go to the Breakspear clinic in Hertfordshire, UK. Their prices for tests are reasonable compared to other private blood test clinics. The consultation will set you back 200, then there are cheaper follow ups.
My mum wants me to test other stuff too and look into other treatments as well, which i probably will, but it all costs money of course. Im selling my car to help fund it.

The way i see it, i am still relatively early in the illness, and have to take my chance while I can. I'll call my mum this morning and try and get the ball rolling.
 

greenshots

Senior Member
Messages
399
Location
California
What supplements do you take for the immune system? Do you have a doctor that knows supplements? They have helped me a lot.

I agree, my daughter's doctor started her on Moducare, Vit c, Ora triplex, and bioactive colostrum since she had autism & PANDAS (strep) but 2 years later, her immune system is great. Of course, we've gotten her methylation cycle working well but she was doing great on those even before that. I'm starting some of them now in order to get through this cold & flu season but you need to do so carefully,

Angela