Losing my voice

[Fritz]

Hi everyone,

I have had CFS for three years now and am wondering how common it is to lose your voice to a large extent when you have a flare up.

My plan to deal with CFS in the first 2.5 years mainly involved pacing and magnesium supplements. In the past few months I had more time and started following Dr Myhill's advice on her site (incl diet) and had my blood tested at Acumen.

Maybe I should just be patient and see if my voice improves along with the rest of my body but if you have any ideas/tips then that would be much appreciated.

Thanks!

 

[Who Me?]

Welcome @Fritz this disease is so screwy it affects everyone differently.

I don't lose my voice but I get a sore throat and it gets raspy when I talk. I have not figured it out and it's been a few years. It could be virus, histamine, inflammation? I just don't know.

Cruise around here to see what everyone is doing. You have to tailor what you do to your specific symptoms and the cause if you know what they are. Or like me and try different things that others have tried and see if you have success.

Magnesium can be very helpful for some people, but alone, even with pacing I'm not sure how much it will help. This is a complicated disease and usually takes a multi-faceted approach.

Do you know what labs were run? Knowing that and the results will be helpful for people who want to add to this.

There are some Brits here. @Empty might be able to help with UK stuff.

Good luck

 

[Fritz]

Welcome @Fritz this disease is so screwy it affects everyone differently.

I don't lose my voice but I get a sore throat and it gets raspy when I talk. I have not figured it out and it's been a few years. It could be virus, histamine, inflammation? I just don't know.

Cruise around here to see what everyone is doing. You have to tailor what you do to your specific symptoms and the cause if you know what they are. Or like me and others try different things that others have tried and see if you have success.

Magnesium can be very helpful for some people, but alone, even with pacing I'm not sure how much it will help. This is a complicated disease and usually takes a multi-faceted approach.

Do you know what labs were run? Knowing that and the results will be helpful for people who want to add to this.

There are some Brits here. @Empty might be able to help with UK stuff.

Good luck

Thanks for the quick response. It's great to talk to other people about this annoying disease (I have been trying to hide it for the past few years). I will post my lab results later today along with a summary of supplements I am now taking.

Thanks again.

 

[Who Me?]

I thought you were in the UK Because you talked about myhill, but was I wrong?

There are lots of docs doing things, Chia, Montoya, Klimas. Also look under resources for Hips CFS roadmap. I'll look for it tomorrow if you don't find it.

I'm sure more people will post tomorrow.

 

[Merry]

Hi, Fritz. During telephone conversations I sometimes begin to lose my voice, and at that point I say goodbye. I have never lost my voice completely. I have just assumed that the muscles that produce sound become fatigued like any other muscles. As the years of illness have gone on, I have had less and less reason to talk.

Good luck to you.

 

[Seven]

FYI, it can be a hypothyroid symptoms. Since CFS tends to give thyroid issues, might be good idea to check. For me it stopped once I got to right levels.

I am talking about the out of nowhere I have energy but no voice. If it is the one where I cannot talk because I am crashed, that one all I can do is rest and I get it back. So no voice during crash( CFS crash one) vs Horsness : I can talk but sounds deep (this is the Thyroid one for me)

 

[Fritz]

Thanks for the quick response. It's great to talk to other people about this annoying disease (I have been trying to hide it for the past few years). I will post my lab results later today along with a summary of supplements I am now taking.

Thanks again.

Hi Who Me,

My lab results are

ATP
Low whole-cell ATP
26% blocking of active sites leading to low mt-ATP and very poor provision of "new" mt-ATP
Quite marked blocking of translator function
Rather low ATP-related magnesium
Poor ADP to ATP re-conversion

DNA Adducts
Low-normal DNA-related zinc (23g/ml vs ref range of 21-74)
A tissue-breakdown peptide with the GSH-triplet at one end
Hypomethylation of several areas of the genome

Chemicals on TL sites
Methyl Paraben and Malondialdehyde


Based on advice from my new GP who recommended I do these tests, I am taking a number of supplements - Zinc (50mg), Magnesium (2x160mg), Probiotics (VSL #3 and I just started drinking Kefir milk), Glutathione, Reservatrol and 5-HTP. He also recommended COQ-10 but I stopped taking that b/c it causes some side-effects (chest pain). I also cut down my carb intake at the same time (to stop yeast growth) but I did this too quickly and ended up being dizzy and weak since my insulin levels needed time to adjust. I am taking Epsom salt baths to try and get rid of some of the parabens.

Thanks

 

[Fritz]

FYI, it can be a hypothyroid symptoms. Since CFS tends to give thyroid issues, might be good idea to check. For me it stopped once I got to right levels.

I am talking about the out of nowhere I have energy but no voice. If it is the one where I cannot talk because I am crashed, that one all I can do is rest and I get it back. So no voice during crash( CFS crash one) vs Horsness : I can talk but sounds deep (this is the Thyroid one for me)

Thanks. I went to the endocrinologist two years ago but he could not find anything (except low-normal Total T, slightly below low end of range of Free T and afternoon Cortisol on low end of range). But I will look into this again with my new GP, especially since Dr Myhill is suggesting that low-normal T4 for example may be too low for CFS patients.

 

[Who Me?]

@Fritz. I'm the last one to ask about blood work etc. I'm clueless. The info will be good for others to suggest things.

@Remy should be able to help.

 

[Remy]

It could be hypothyroid for sure. But for me it was histamine and naughty mast cells...it comes and goes.

 

[Cort]

Hi everyone,

I have had CFS for three years now and am wondering how common it is to lose your voice to a large extent when you have a flare up.

My plan to deal with CFS in the first 2.5 years mainly involved pacing and magnesium supplements. In the past few months I had more time and started following Dr Myhill's advice on her site (incl diet) and had my blood tested at Acumen.

Maybe I should just be patient and see if my voice improves along with the rest of my body but if you have any ideas/tips then that would be much appreciated.

Thanks!

I remember someone who lost their voice minor surgery. She could really use her voice before it - I'll tell you that. What helped her greatly in that case were saline IV's. Thought I would just throw that in to the mix. Many people who can get them use saline IV's after a relapse.

 

[Merida]

I get throat-clearing and raspy. Interesting that the severe throat-clearing started after a terrible viral infection in 1988. If I get very severe I take a few days of prednisone. But I don't like to do this. Yes, have wondered if an enlarged thyroid gland contributes. My son has this too - very sick after well documented case of EBV at age 5. He is 35 now, still dealing with throat -clearing issues on and off.