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    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of, and finding treatments for, complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

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Hello Old Friends

LaurieL

Senior Member
Messages
447
Location
Midwest
I do not know where to start to describe my journey that I have been on since I left here and my experience with methylation and its many ups and downs. It is my hope that my own experience will not be dismissed, as at one time, I was completely dibilatated enough to lose my home, my career, and eventually some of my family members and friends. So many of us have been there, still there.

I am still not able to find any one cause of my demise and my trip into CFS. To be quite honest, I stopped looking. I am not here to push my beliefs on anyone. I stopped treating one thing, and started addressing the whole package.

My response to methylation was like many here, many ups and downs. Such confusing reactions. Eventually, it became clear that it still wasn't enough. This lead me to detoxification polymorhisms and how my own might fall into line with my methylation polymorphisms. Methylation starting working for me when I also addressed my difficulties in detoxing. It wasn't a "cure". And when I had it right, detoxing was not uncomfortable, no "herxing". I reiterate, I did not herx when detoxing and if I did feel bad, I knew I was off track and this just went against everything I had learned to be the "norm".

Across the many forums, there is a patent trail of the activation of simultaneous viruses. Those that were here when I was, will remember all the varying discussions on Autism polymorphisms, and the immunity polymorphisms, ie: Interferon and so on.

I began considering those and comparing mine. I beg to question, why do so many of us, if not most of us experience a loss of immunity to viruses. Many, simulataneously? So I started looking at my immunity polymorphisms, and how they might predispose me. When looking at these, I found direct connections to methylation, those Autism polymorphisms, and the detox polymorphisms. I began considering what virus had the ability to start this downward spiral and what makes me different from the "normal" people.

Out of all the most common ones in the panels posted, I couldn't find one. So I asked the question, if I have lost my ability to suppress viruses of the most commonly talked about, have I lost my ability to fight the ones most "normal" people come into contact with and are able to clear. That answer for me was yes. So I introduce you to the everyday viruses. And there is one in which fits the profile of demise.

I have never been diagnosed with this virus, but considering most of the population comes into contact with it, I had to ask, how could it affect me. I began treating not this particular virus, but around the parameters of it's discourse simultaneously with the detox and methylation protocol I developed for myself. I have not taken any pharmecuetical antivirals to date.

Anyone had a run in with HPV, Adenoviruses, Molluscum Cantagiosum, Fifth Disease, or how about just the plain old flu? Please consider all these in your multiple virus activation. If you have a panel describing activation of multiple viruses, you will also have trouble with these as well. One exposure to a supposed cause cannot explain an activation of so many viruses at one time, but genetics can.

I am not here to recommend courses of action, what to take or when, it doesn't interest me anymore. I have my "new normal" back, and I am pretty darn functional. By posting this, it is my way of giving back to many of you that have given me so much, and I thank you.
 

Wayne

Senior Member
Messages
4,308
Location
Ashland, Oregon
I have my "new normal" back, and I am pretty darn functional.

Thanks Lauriel for checking in, and congratulations on your apparently significant improvements! :thumbsup: There's a lot that you wrote, much of which I don't understand. I may get back with a few questions after I've had a chance to go over it a bit more. --- Improvement stories are always a delight to read. Thanks for sharing...

Wayne
 

Gingergrrl

Senior Member
Messages
16,171
@LaurieL I was not on the board back when you were posting but wanted to say that I am so glad you are feeling better. Also, what does "polymorphism" mean? I googled the word but not sure how it relates to CFS?
 

helen1

Senior Member
Messages
1,033
Location
Canada
Fabulous to hear about your new normal! You must be really enjoying it...
How did your treat your viral infections and how do you explain the non herxing?
Did you continue your methylation protocol while you treated possible infections?
 

place

Be Strong!
Messages
341
Location
US
Your approach to do multiple treatments at once has shown up here alot lately and that how they get better. It's they treat methyl, the gut/digestion and detox. Some do involve some change in diet, Paleo being the number one diet. I have all but the detox figured out. What are you doing for that?
 

SOC

Senior Member
Messages
7,849
Anyone had a run in with HPV, Adenoviruses, Molluscum Cantagiosum, Fifth Disease, or how about just the plain old flu?
Fifth Disease, aka Slapped Cheek Disease, is Parvo B19, which is fairly common in PWME. We know my daughter had it at about age 6. I have had multiple recurrences of it in the past 2 years (as long as I've been tested for it) and we both currently have active ParvoB19 infections.

Flu is always a problem for us. We now get flu vaccines because we tolerate the preservative-free killed flu virus vaccine and the flu can knock us back badly. We both had H1N1 after our GP decided we weren't eligible for the limited number of vaccines available. :rolleyes: