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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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Any advice?

Soundthealarm21

Senior Member
Messages
420
Location
Dallas, TX
@SOC

Well i'm obviously not the only person that read it that way given the context. @Misfit Toy read it the same way that I did.

"And having a nasty virus, or multiple nasty viruses, replicating uncontrolled in your body is not scary and seriously bad for your health?"

"And living your life the way you are now doesn't scare the hell out if you? NOT taking necessary meds has scary consequences also.

I'm not suggesting you should take Valcyte. If you don't have chronic hhv6 or CMV, then you probably don't need Valcyte and the risks clearly outweigh the benefits. Also, some people with MCS-type symptoms can't take much of anything."


I don't possibly see how you can assume that after making statements directly addressing me and then going into anecdotes about you and your daughter that I would not think you were drawing parallels to me. Do you not see how I could have interpreted it that way? I'm not a selfish person so of course it's not always about me.

Either way I don't want to get into an argument over something so frivolous. I'm sorry there was a miscommunication between us.
 

Allyson

Senior Member
Messages
1,684
Location
Australia, Melbourne
Thanks alot Ally, very kind of you. I will look into these things with my GP. Have been checked many times for Lyme and been negative, looking through my blood tests my calcium and albumin are always high, and my random blood glucose is always slightly less than 4 so maybe thats somewhere to start. My TSH is also always sub 1 so will check that out. Hopefully will lead to something.

Thanks,
Tom

good luck - the GP may need some info on POTS tho - it is a very common ME symptoms but few are tested for it and even fewer docs seem to know anything about it

here are some sites to ask for a POTS doctor near you

good North American Doctors for ME etc

https://www.facebook.com/groups/1438285386415297/

good Australian Doctors

https://www.facebook.com/groups/287952358017187/
 

Allyson

Senior Member
Messages
1,684
Location
Australia, Melbourne
I found this website that explains things well. https://www.alpha1.org/newly-diagnosed/what-is-alpha-1

How many copies of the gene mutation do you have, and are you experiencing lung or other symptoms? Is your doctor being helpful?

THanks for that Caledonia - I have just had the test go for results next week
doc actually know a bit about it and said my parents - as they were smokers would have had serious issues e to the combo of smoking and Alpha I . will let you know when I have the result.


Thanks again for the link - super!

ALlly
 
Messages
73
@Allyson interestingly the doctor thought i might have Ehlers-Danlos without me prompting him, but going to have more tests next week. I do have another question if anyone can answer it. I stopped taking l-carnitine mid-week because i thought it might be making me feel worse, and I did improve towards the end of the week (although who's to say that was because of a lack of carnitine). Furthermore i started taking D-ribose this morning (the CorvalenM), and immediately had to go to bed for 2 hours. I've now woken up and still feel very tired and a bit nauseous. Has anyone felt like this before? Thanks :)
 

Allyson

Senior Member
Messages
1,684
Location
Australia, Melbourne
@Allyson interestingly the doctor thought i might have Ehlers-Danlos without me prompting him, but going to have more tests next week. I do have another question if anyone can answer it. I stopped taking l-carnitine mid-week because i thought it might be making me feel worse, and I did improve towards the end of the week (although who's to say that was because of a lack of carnitine). Furthermore i started taking D-ribose this morning (the CorvalenM), and immediately had to go to bed for 2 hours. I've now woken up and still feel very tired and a bit nauseous. Has anyone felt like this before? Thanks :)

try and see how your feeling bad suddenly relates to
1 how much time you haave sent right recently

2 when you last ate

both will mess you around due to lack of blood to the brain - IE POTS
have you hd a TTT yet?
ALly