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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 (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

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Do you have ME/CFS with or without sore throat?

How often do you have sore throat since you got ME/CFS?

  • Almost never

    Votes: 27 26.0%
  • Once or twice a year

    Votes: 10 9.6%
  • More than twice a year

    Votes: 67 64.4%

  • Total voters
    104
Messages
23
Location
New Mexico
Dear #Merry

Since I started the Simplified Methylation Protocol last September, I have had few sore throats. I can't remember when I had the last one and would have to read through my medical diary to give you a more accurate account.

I also have chronic right-sided sore throats (Me/CFS since 1996). Has the Methylation Protocol still kept your sore throats at bay?
Thank you!
 

Rebeccare

Moose Enthusiast
Messages
9,064
Location
Massachusetts
I also have sore throats most of the time. It's not a bad sore throat, like when you have strep or the flu. It's usually mild--it feels as though I went to a Red Sox game the previous day and had been cheering a bit to much. Usually it's worse when the rest of my symptoms are also acting up.
 

*GG*

senior member
Messages
6,389
Location
Concord, NH
I also have sore throats most of the time. It's not a bad sore throat, like when you have strep or the flu. It's usually mild--it feels as though I went to a Red Sox game the previous day and had been cheering a bit to much. Usually it's worse when the rest of my symptoms are also acting up.

Same here, just not into baseball ;)

GG
 

Lipac

Senior Member
Messages
160
Location
michigan
DISCLAIMER: I have BAD MCS. I get a sore throat from anything perfumed, in about a minute. Also paints, propane, some cooking smells, exhaust on roads,,,, so I gets lots of them.
I need a bubble in the desert.
 
Messages
23
Location
New Mexico
Dear @BadBadBear ,
Sore throat is a big big deal for me, I'm interested what the doctor gave you Famvir "for" (my doc will give me just about anything, but there has to be a reason), was it for EBV? (I have IGM+)

SIncerely, RMM
 
Messages
32
Location
New Salem, Massachusetts
Hi,
Yes I'm another one who has sore throat all the time.
It is mild if I remember to be taciturn, but if I talk more than about half an hour, or if I raise my voice, then it is very bad and I lose my voice for several days.
But this is a new symptom that came on 3 years ago. Before that I had CFS for 25 years and hardly ever got a sore throat.
I have exactly the same story!
 

BadBadBear

Senior Member
Messages
571
Location
Rocky Mountains
Dear @BadBadBear ,
Sore throat is a big big deal for me, I'm interested what the doctor gave you Famvir "for" (my doc will give me just about anything, but there has to be a reason), was it for EBV? (I have IGM+)

SIncerely, RMM

Hi RMM, I seem to have chronic EBV, no IGM but my EA numbers stay high. I have been using Famvir + Celebrex for about 3.5 months and the sore throat resolved fairly soon after starting the meds. My jaw glands are not nearly as swollen, though the right side has not reduced as much as the left.
 
Messages
23
Location
New Mexico
Dear @BadBadBear,

I JUST EDITED THIS!

I am highly interested in your Famvir + Celebrex protocol, do you know where this treatment originated (I like to research before trying)? (OOPS I JUST FOUND OUT THAT IT IS PRIDGEN) Did your local MD/ND agree to prescribe this?

My jaw glands are generally not swollen, they get hard and painful instead.
Thank you.
 

BadBadBear

Senior Member
Messages
571
Location
Rocky Mountains
Dear @BadBadBear,

I JUST EDITED THIS!

I am highly interested in your Famvir + Celebrex protocol, do you know where this treatment originated (I like to research before trying)? (OOPS I JUST FOUND OUT THAT IT IS PRIDGEN) Did your local MD/ND agree to prescribe this?

My jaw glands are generally not swollen, they get hard and painful instead.
Thank you.

I see an Integrative MD and she is letting me try a protocol similar to Pridgen. I take more Famvir @1g per day, and less Celebrex @200 mg per day.

She is cautious about overloading my liver, but I wish the Celebrex dose was higher. I didn't realize how much pain I had until it was gone. Now the Celebrex wears off between lunch and dinner and it hurts! I try to remember to take boswellia, baby aspirin, and propolis at lunch and that works similarly to Celebrex for me.

My glands get swollen, hard, and painful. Feels like a walnut. Now occasionally it feels like I might get a sore throat, but I don't. Just have that feeling of throat congestion or something but it passes.

I would have sore throats previously for months and months at a time, they'd clear for a few weeks or months then settle in again.
 
Messages
23
Location
New Mexico
I see an Integrative MD and she is letting me try a protocol similar to Pridgen. I take more Famvir @1g per day, and less Celebrex @200 mg per day.

She is cautious about overloading my liver, but I wish the Celebrex dose was higher. I didn't realize how much pain I had until it was gone. Now the Celebrex wears off between lunch and dinner and it hurts! I try to remember to take boswellia, baby aspirin, and propolis at lunch and that works similarly to Celebrex for me.

My glands get swollen, hard, and painful. Feels like a walnut. Now occasionally it feels like I might get a sore throat, but I don't. Just have that feeling of throat congestion or something but it passes.

I would have sore throats previously for months and months at a time, they'd clear for a few weeks or months then settle in again.

Dear @BadBadBear,
Thank you so much for the helpful info. I too see an integrative MD, who is also always worried about my liver! I have to try something, QOL is pretty bad with all this throat pain. Although not a happy situation, I've adapted to my 50% life for these 21 yrs, as I'm sure those of us with long term CFS have as well. I do feel that if I can target the infection/inflammation it will make a dent in the fatigue as well.
Sincerely, RMM
 

Seven7

Seven
Messages
3,444
Location
USA
That was never a symptom of mi e.
Then like year 10 I had it for a few months( a relapse phase) then not have it at the moments either
 

manasi12

Senior Member
Messages
172
My illness started with sore throat. Now since last two years , I have sore throat and mild fever for almost 5-6 months in a year . It goes away with antibiotics for a few days and again comes back. If I dont take antibiotics , fever doesnt go away.
Apart from CFS , I have few autoantibodies too. Any suggestions please as doctors are clueless as usual..
 

percyval577

nucleus caudatus et al
Messages
1,302
Location
Ik waak up
I used to have a sore throat feeling only during summer. Than I found out that eating some more salt (in chips for example) helps.
I always had the idea that Epstein-Barr-Virus liked to reappear (so, maybe it´s not common). By accident I found out that onions are good. I eat them with meet or sausages, and as much onion as possible, I swear!
 

percyval577

nucleus caudatus et al
Messages
1,302
Location
Ik waak up
I´ve stopped eating sugar, and after a mysterious slime production from above the tung, the doctor found only very few candida albicans (after further selftreatment especially with tabasco). It was not found anymore three weeks later after treatement with only 25g nystatin, nor any bacteria of interest.
Of course I am not convinced anymore from anything I am told now. If I should be a doctor, I should have asked myself, if there might be anywhere else a candida infection.
Anyway, I can get a sore throat now (not just the very one that used to appear during summer) quit immediatly from drinking beer without taking vit C. On the other hand, drinking none beer and/or having no sore throat doesn´t change my state of mind (in these days, but in days I felt better I mostly didn´t like to drink any alcohol, feeling bad from it).
So I am curious what´s going on there and in the whole.
Some fungi, that would make sence. I need to watch further on sugar issues.
 

Sundancer

Senior Member
Messages
569
Location
Holland
first half year constantly, then it sometimes disappeared.
Now only with bad PEM and when whatever virus jumps into my body, or emotional stress.
so, with overload
 

andyguitar

Moderator
Messages
6,595
Location
South east England
No suprise to me that onions help @percyval577 as they are a potent anti-fungal. There are more than one species of fungi that can cause sore throats, and many other symptoms, so the test for candida wont tell you if you have them. Same goes for Nystatin. Not effective on all species of fungi.