Why has my PEM changed to severe respiratory, throat problems

[starlily88]

don't use Amazon, if I can avoid it. They don't pay taxes.

Thanks for your help on Elderberry. Yes I get a severe cold/or beginning of flu each time I have gone to Dr last two months, but I am overdoing the errands. Last Monday Night I got the severe sore throat, so I haven't moved in last 7 days. Wish I could cancel my appts but I have to have crown on my tooth................. Starlily88 PS I have never bought anything on Amazon - it's a good place to read comments on the effects other people have with elderberry, etc.

 

[Wishful]

Yes I get a severe cold/or beginning of flu each time I have gone to Dr

Probably not an actual viral infection. The first few episodes of my ME felt exactly like a viral infection starting, but the symptoms disappeared by the next day, totally unviral-like. So, it's more likely part of your immune system activating and causing the symptoms (maybe via kynurenines or various cytokines). Immunostimulants might make things worse. Immunosuppressants might not block the right part of the immune system. It's possible something might help, but it might not be an obvious treatment, so it's a matter of trying lots of things and seeing if anything helps.

 

[Wishful]

Thats good to know, based upon your considerable experience.

Hah! Hardly considerable. I tried sambuca (made with elderberries) a few times, just to verify that it was responsible for triggering worse symptoms. Yes indeed it was. It didn't take much ( tsp or so?). So that's what I'm basing my warning on. For anyone with ME experimenting with elderberries, I do suggest starting with small amounts.

For those who don't react badly to it, I think it may have potential as an effective immunostimulant.

 

[starlily88]

Probably not an actual viral infection. The first few episodes of my ME felt exactly like a viral infection starting, but the symptoms disappeared by the next

Thanks for your reply. I had to go to lab for blood work I get monthly, then Walgreens. Gone 1 1/2 hrs.
I rushed home (wore mask so cold would not enter my lungs) - and got sore throat right away, but not severe.

I took Mucinex 5 ml (normal is 20 ml), now I just have extreme exhaustion.
Dreading Thursday - have to see my Neurologist for sleep meds. .
I used to be able to sleep 12 hours - and keep sleeping throughout a week - this got me better.
Now I can barely sleep 4/5 hours with meds - nothing works anymore with thyroid disease.
Starlily88

 

[Lieselotte]

@starlily88 sorry to hear about your suffering. This disease is so cruel when even the things you do to get better - like seeing the doctor - end up making you worse.

I have had thyroid disease (hypo) for quite some years. A few years into it, my thyroid started getting worse, for no reason - I mean, I wasn't doing anything differently! I went to a functional medicine practitioner that someone had told me about, I thought what the heck let me give it a try. All my doctor did was put me on a horse-dose of thyroid meds. I knew there had to be something better.

The functional guy found that my gut was wrecked. I went on a paleo diet and also did liver supplements, lots of testing and other stuff. I was able to lower my thyroid meds in half! It helped me at the time although I did get CFS a few years later... Just goes to show that it's only part of the story.

Just wanted to share my story because sometimes the gut influences thyroid and we wouldn't even think of it. This disease is a big easter egg hunt.

Hang in there

 

[starlily88]

The functional guy found that my gut was wrecked. I went on a paleo diet and also did liver supplements, lots of testing and other stuff. I was able to lower my thyroid meds in half! It helped me at the time although I did get CFS a few years later... Just goes to show that it's only part of the story.

Thanks L, and so sorry you got CFS. I have de Quervain thyroiditis which is rare, only 1 in 300,000 get it, and it is quite painful. It is supposed to self resolve in 18 months - over 90-95% do. 1-5% don't, and I am sure I am not self resolved.

Unfortunately due to my Gastroparesis I could not use food to get better. Instead I could not eat for most of last 18 months - anything I could get in before, made me very sick, so had to live on Ramen noodles, mashed potato cup. Got such bad GERD and reflux, On Nexium 2 times/day. When I try to go to Once/day, I get the reflux again.

My Neurologist put me on 1/2 reglan 2 times/day - even though it was poison to me in my '20's. I don't like taking it, but domperidone doesn't work.

Sure having an inert colon, GP, and ME/CFS, multiple other diseases made this not resolve.
I just spent last 18 days only taking thyroid meds every other day.
Think this is why I am getting so sick when I go to Dr.
Neighbor who is a Dr said my thyroid is real swelled up - and I think it's a sore throat referred pain from my painful thyroid.

I started taking the meds every day now - and just got my labs. My TSH shot up, strangely so did my FreeT4 and Free T3. Starlily88