Persistent sore throat (PVFS)

[godlovesatrier]

Hi all,

Looking for some experiences with some symptoms I'm having. I had glandular fever (ebv) in July confirmed when I went into hospital via blood test. I'm about 4 weeks into recovery now. For the first 2 weeks I was recovering without symptoms, then a mild sore throat came back and has got slightly worse but remained at a certain level. It feels like the kind of sore throat you would get from a nasty cold, it's at that level, but it's all day and all night. I've had it for just over 2 weeks now. I just wondered how long people had experienced this kind of sore throat after they got their ME/CFS diagnosis and how long it went on for.

I don't think I've ever had a sore throat quite this bad, even when I first got ME it was more of a dull ache/annoyance. Whereas now it's always there. I Can control the pain by taking 1.6g of andrographis paniculata every 3 or 4 hours. I'm also taking laurcidin 1 scoop a day in an attempt to get what I think might be reactivated ebv under control.

BUt would be interested to know how long these symptoms lasted. Last time I had these symptoms I experienced them for about 12 to 16 months, but was taking siberian ginseng at the time which helped massively. So far I've tried the following for it without being able to do anything more than pain relieve it for 1 to 3 hours

Andrographis Paniculata (pain relief 3-4 hours)
l-lysine (mild pain relief 2 hours)
olive leaf extract - no effect
gcmaf - I've tried the cream, seems to have made it worse if anything.
Lauricidin - can't tell if it's reduced or had any effect yet on the throat, not convinced it has.
omega 3/flax seed oil - no effect
b12 oils - no effect
magnesium spray - no effect
quercitin powder - no effect
magnesium ascorbate/vit c transdermal patches - very slight pain relief for maybe 30 minutes.

food - when I eat I feel a bit better for maybe 20 to 30 minutes, then it comes back.

Thanks in advance,

 

[*GG*]

I've basically had a sore throat for over 17 years now, my illness started with EBV/mononucleosis.

GG

 

[Mary]

@godlovesatrier - I've had 3 different types of sore throats that I can identify. In the early stages of getting ill, I would get a sore throat every time I got over-tired. Also my feet hurt with a burning feeling, as though I had worn ill-fitting shoes, only I hadn't. I eventually identified this as being linked to my adrenal glands and a pantothenic acid deficiency, with the help of a book by Adelle Davis on nutrition. I started taking pantothenic acid, which helped. Be aware though that pantothenic acid can deplete taurine and taurine helps protect the brain against glutamate-induced excitotoxicity (I developed a severe sensitive to msg in all its iterations after many years on pantothenic acid, which was reversed when I stopped the pantothenic acid and started taking taurine).

I'm also prone to strep infections, and for those I use colloidal silver. Antibiotics also work of course but the colloidal silver seems more effective. At one time I had strep with such frequency I would have had to take ABX almost constantly, not a good thing.

And then there are sore throats linked to EBV and other viruses. For this I use andrographis and echinacea.

I don't get blood work each time I get a sore throat. I just go by what seems most likely, and if the andrographis and echinacea don't do the job, then I add in colloidal silver which usually knocks it out;

Have you been tested for strep?

 

[Rufous McKinney]

BUt would be interested to know how long these symptoms lasted.

Sore throat - at times feeling like strep-worthy- and nearly being unable to speak- is a common symptom...for years now. It worsens when I am more rundown. My throat goes off around 2-3 pm daily.

I'm very hoarse sounding, lost my singing voice which was quite pleasant; a phone call or lunch with a friend and chatting for a while- even if I am careful- is extremely painful.

Something that is quickly soothing to the throat is elderberry syrup.

 

[Wolfcub]

As @Mary mentioned, colloidal silver may be worth trying?
( a friend of mine recently healed mouth ulcers in her cat, who sadly has late stage kidney failure, by syringing colloidal silver in his mouth.)

Echinacea is good. It is very healing and anti inflammatory too. Unwise to use if someone has an auto-immune condition though.
I use Echinacea angustifolia (root) tincture. It can be diluted in a little water.

Another helpful one for inflammation is Myrrh tincture, if available . I haven't seen it around for some time. That tastes very strong and bitter. Just a warning! The first time I drank it I nearly exploded with shock!
The tincture has to be made with alcohol, as Myrrh is a resin and will not dissolve in anything else as far as I know.
It must always be let down with a little water as it is horrible to take neat. Way too shocking.

Echinacea and Myrrh have some direct anti-bacterial action also. Myrrh is a wonderful healer, and quickly clears ulceration or wounds if applied externally as a lotion, and healing internally. It is quite safe to use, but can sometimes cause a slightly looser bowel movement.

 

[godlovesatrier]

Sadly I tried echinecia augustifolia and it had no effect. It may have made it worse I don't know. Been taking 15g of andrographis paniculaa each day, but I am noticing that whilst it appears to reduce dormant load, it stimulates the immune system which seems to make the sore throat worse. L-lysine also stimulates energy levels which also makes the sore throat worse. I'm stopping all today in hopes my body will crash/relax and the throat will start to go down, it's getting a tad swollen now

I've spent so much the last month or two on supps, driving me mental. I'll try the col silver, only thing I haven't tried. This is 100% viral though. Seeing dr tomorrow for blood tests.

What I will do is take my anti bac anti viral tonic 3x a day again, that doesn't normally over stimulate and can sometimes help...varies a bit.

THanks all, in some respects I would like a positive mono test, but convinced NHS don't give out anti virals for it.

One question does anyone know if valtrex is any good for acute ebv? I have a box here but I am paranoid it will damage my mitos. Even so it's fast becoming my only option.

THanks!

 

[godlovesatrier]

@Mary the panth acid sounds interesting. I wouldn't be surprised if that would help me. Although honestly nothing seems to be working, or if it does work it merely dampens things. I think drugs like valtrex may be my only hope but reading about it shows a lot of mixed reviews. The drug side effects are so strong I need to be careful. I don't suffer from bad brain fog just like you don't, but my brain needs to function for work.

 

[godlovesatrier]

Just to add to my frustration. I managed to get blood tests from my GP, was a bit surprised but glad they took it seriously. Got ebv, full bloods and liver tests. But the service in the UK is so bad that I can't get tested until 22nd Sept or 30th Sept and I have to drive 35 minutes there and back at the crack of dawn if I want one a week sooner. The website also gives me mixed results, showing me different dates for the same location. Honestly nobody would want to try and access anything in the UK at the moment, it's hard work.

 

[Reading_Steiner]

couldn't find another topic about this, although its apparently a common symptom ? I only started having throat problem this year though, so 4.5 years with cfs/me without any sore throat. I think it represents a progression of symptoms if not severity of the disease.

I wondered if it was just me though because its a very strange sensation. Its like a prickling burning sensation which is totally unlike the sort of dull warm swollen feeling of a throat infection, theres no swelling of the throat. The closest thing I can compare it to is how I react to Black Mould, but without the 'instantaneous whole body inflammation' that I get from that. I am wondering today... could it be the sensation of autoimmunity towards the thyroid ?

This sore throat thing is actually one of the most annoying symptoms that I have experienced as its quite painful and distracting. As I said it comes and goes though and the trigger isn't obvious although it seems to be somewhat related to overexertion on some days. I also seemed to experience the same reaction to hayfever but a more intense version, I couldn't go outside at all and I wore a mask indoors... hoping not to experience that again next year.

 

[Pyrrhus]

I wondered if it was just me though because its a very strange sensation.

As I said it comes and goes though and the trigger isn't obvious although it seems to be somewhat related to overexertion on some days.

You're not alone. Persistent sore throats seem to be common in ME.

I get a mild, slightly scratchy, sore throat when I over-exert myself. I also have a history of herpangina.

 

[Learner1]

Seems like everyone has a persistent sore throat, it's either allergies or an infection of some sort, either viral or bacterial. Solving the allergy issues leads to one set of solutions, viral infections to others, and bacterial infections to yet another set of solutions.

Ongoing, persistent sore throat is something that should be dealt with. It would be very difficult to improve from me/cfs without addressing a symptom like this. I had a hidden case of Epstein-Barr, and that antiviral Valcyte was a real game changer for me.

 

[godlovesatrier]

Mine has finally gone in the last week. Replaced by weakness and general tiredness/mild fatigue. Although I now have a persistent skin rash which has spread to both under arms. On my third cream and I still can't get rid of it. Strangely this makes me think the original immune exhaustion issue I had has gone into remission replaced by generalised weakness and PEM etc. Strange how our symptoms metamorphosise into a worsened state over the years.

I do wonder though if deconditioning due to no exercise ultimately makes this decline much more pronounced and worse.

My immunes system is depressed at the moment (no known reason) and I have sores in my mouth that won't heal over, very painful and frustrating.

 

[sometexan84]

I've dealt w/ sore throat issues as well.

I'm wondering if anyone gets a sore throat in addition to headaches and somewhat dry mouth. Particularly in the mornings?

There's a large % of CFS patients w/ sleep apnea, specifically Obstructive sleep apnoea hypopnoea syndrome (OSAHS). Curious to see if others match on this

 

[starlily88]

This sore throat thing is actually one of the most annoying symptoms that I have experienced as its quite painful and distracting. As I said it comes and goes though and the trigger isn't obvious although it seems to be somewhat related to overexertion on some days. I also seemed to experience the same reaction to hayfever but a more intense version, I couldn't go outside at all and I wore a mask indoors... hoping not to experience that again next year.

I have been dealing with a daily sore throat most of 2020- and I don't remember having one every day in early days of CFS/ME. Usually when over exertion or Post Malaise - I get big painful lymph glands and feverish feeling.
Now it's like I have non-stop nasal drip, allergies, sneezing, sinus pressure, sinus headache all year, but especially after being outside to go to dr appt/store. It's like I am allergic to any air, but where I live the humidity and barometric pressure are huge factors.

I can usually take walks in the summer - not that many - but this summer - even 10 minutes in the air - got me severe allergy symptoms, ending up with a week or 2 of sore throat.
Nothing helps it at all - not Tylenol, tea/honey, Sore throat spray, nasal lavage, etc.

From these posts it seems like part of our disease that I did not get before - I went to new ENT - and he insisted that my sinuses are perfect - he didn't seem to care that I am in constant pain, oh well. Starlily88

 

[Judee]

It feels like the kind of sore throat you would get from a nasty cold

Do you see the crimson crescents when you look down your throat? One ME/CFS doctor used to always diagnose his patients by looking for those (among other things, I think.) https://forums.phoenixrising.me/threads/do-you-have-crimson-crescents.4088/page-7
Post #140 has a picture. I tried to take a picture of my throat right now because I do have them currently but it's difficult to do and get the correct lighting. They come and go.

You could try thymus and vitamin c. It almost always gets rid of the problem for me after 1-2 doses. I use swanson brand thymus and an ascorbate vitamin c. I open the caps and mix with some water and then gargle the mixture before swallowing. It starts to numb the area within about 1 min. Doesn't taste good but it works better than anything I have tried.

 

[gbells]

I've basically had a sore throat for over 17 years now, my illness started with EBV/mononucleosis.

GG

This was an early ME symptom for me. I recall getting an infection from a past girlfriend who most likely had HHV6 after contracting mononucleosis. After having a period of violent global muscle fasciculations I developed tender, enlarged lymph nodes in my neck, a chronically sore throat which then became so inflammed I had to see a ENT specialist MD for gagging and difficulty swallowing. This improved and now is about 95% better post immunotherapy.

 

[starlily88]

This was an early ME symptom for me. I recall getting an infection from a past girlfriend who most likely had HHV6 after contracting mononucleosis. After having a period of violent global muscle fasciculations I developed tender, enlarged lymph nodes in my neck, a chronically sore throat which then became so inflammed I had to see a ENT specialist MD for gagging and difficulty swallowing. This improved and now is about 95% better post immunotherapy.

Thanks for your post. I got mononucleosis - and never got better. Extensive testing showed high titers of EBV virus which includes an HV6 virus, high T cell counts, B cell counts low, etc. I also had quite large lymph nodes in my neck. I have difficulty in swallowing which is worse now - have Barrett's esophagus.

Can you tell me what you did to get better? What kind of doctor did Immunotherapy and what does that entail?
I got sick so long ago - there were only 10-12 drs in States who did CFS - so I had no one here, so not one Dr knew what to do for me, thanks Starlily88

 

[gbells]

The thing these viruses are not harmful to everyone, just to a few million of us unlucky ducks. Quack!

Can you tell me what you did to get better? What kind of doctor did Immunotherapy and what does that entail?

Check out my Self-Experimentation blog. That follows the development of the treatment. Basically the hypothesis is that specific supplement combinations that have been shown in vitro to unblock viral checkpoint apoptosis targets can in vivo trigger and maximize apoptosis (death) of virally infected cells. Once the cells are dead the inflammation and energy drain stops and this includes the throat inflammation that is behind the gagging and difficulty swallowing. I haven't released specific product information yet because I wanted to reach the final endpoint to show efficacy and safety before moving it forward. Eventually I want to work with a supplement manufacturer to get it made. The regimen is too complicated to just type up a paragraph and have people do it. It needs MD supervision in case adverse events come up and I'm not a MD (I am a chiropractor who has ME, systemic lupus erythematosis and pericarditis).

In the meantime, if you have a history of these viral infections you can try sleeping with a grounding strap plugged into an electrical outlet and use C3 time release curcumin and licoricce (up to 6 pieces per day) to improve sleep quality and slow viral spread.

 

[godlovesatrier]

I do have the dry throat issue. More or less the same as your all saying here. If I am crashing then gagging or choking is much worse. It's like the body forgets how to contract the muscles in the throat.

Currently though I'm suffering with mailais weakness and tiredness. Similar ish to the symptoms I had pre ME diagnosis in my teenage years. I'm thinking of trying buhner's energy formula next month. I've never tried it before but I'm not convinced it will help. I tried taking valtrex for a week but that didn't seem to help much. I was taking tiny doses though as that's all I can tolerate working full time.

Also incredibly tired after eating which for me hasn't happened in ages. Or I feel very unwell after eating properly cooked food. I recently had some doxycycline and I think that's effected my gut flora quite badly.

 

[Judee]

I recently had some doxycycline and I think that's effected my gut flora quite badly.

I have been on several antibiotics lately and doxy made me feel the worst of all. @Pyrrhus said in a recent post that doxy "mildly impairs mitochondria" so I wonder if that might be something happening as well. I did feel extra draggy on it.