Aa
Two years off treatment and still suffering!
My therapist suggested I start looking for answers on the internet again...
I have been cured and off all meds for two years but still suffering and do not know where to turn.
I have been diagnosed with Chronic Fatigue, Systemic Yeast Infection, crazy weight gain (50 lbs), gurd, muscle weakness and the list goes on and on!
At my last liver docs appt they "apologized for destroying my life" and said that maybe I would recover in 6 or 7 years. They gave no suggestions for a speedier recovery saying my system was in chaos. This was at the University of Pittsburgh, UPMC.
Cleveland Clinic is somewhat nearby but whenever I tell my story no one seems to believe me or have any answers. It gets more exhausting and depressing with any new visit.
I am sorry to leave out details but there are just sooo many blood-tests that are a bit off I would not know where to start. If I can add any to this please ask.
frank
At my SSI re-hearing the work expert concluded that there were NO jobs for me due to medical poisoning and the need to sleep every 4 or 5 hours.
I have been cured and off all meds for two years but still suffering and do not know where to turn.
I have been diagnosed with Chronic Fatigue, Systemic Yeast Infection, crazy weight gain (50 lbs), gurd, muscle weakness and the list goes on and on!
At my last liver docs appt they "apologized for destroying my life" and said that maybe I would recover in 6 or 7 years. They gave no suggestions for a speedier recovery saying my system was in chaos. This was at the University of Pittsburgh, UPMC.
Cleveland Clinic is somewhat nearby but whenever I tell my story no one seems to believe me or have any answers. It gets more exhausting and depressing with any new visit.
I am sorry to leave out details but there are just sooo many blood-tests that are a bit off I would not know where to start. If I can add any to this please ask.
frank
At my SSI re-hearing the work expert concluded that there were NO jobs for me due to medical poisoning and the need to sleep every 4 or 5 hours.
yeppers, had all the viral load checked, a number of times! Pretty sure began at around under 300,000 but will have to check the old booklets/notes.
My GP studied at the Mayo and he has asked them about PIS being used with LDN. They informed that they are but would not tell him anything else (since he is no longer a part of the super secret team (UGH)... so we are going to have to start our own program... couldnt be fast enough for me to begin!
I think it was more than 11 years for me so Dee you def have time mess up yourself with Big Pharma junk, hehehe
Thanks for your continued interest,
your friend,
frank
p.s. sorry, I cant keep my eyes open anymore!!!
My GP studied at the Mayo and he has asked them about PIS being used with LDN. They informed that they are but would not tell him anything else (since he is no longer a part of the super secret team (UGH)... so we are going to have to start our own program... couldnt be fast enough for me to begin!
I think it was more than 11 years for me so Dee you def have time mess up yourself with Big Pharma junk, hehehe
Thanks for your continued interest,
your friend,
frank
p.s. sorry, I cant keep my eyes open anymore!!!
Hey there Frank, did you ever get your viral load checked? I know that was back in 2007 when he checked you for HCV but not the viral load.
Just thinking about what you have been through what you continue to go through.
Did you try the LDN? I hope you don't mind the questions.
I am hoping that you and DD find some answers.
This is almost as bad as trying to find out what is wrong before you are diagnosed with HCV. It took me over 11 years to find out I was HCV positive. Almost too late for me.
d
Just thinking about what you have been through what you continue to go through.
Did you try the LDN? I hope you don't mind the questions.
I am hoping that you and DD find some answers.
This is almost as bad as trying to find out what is wrong before you are diagnosed with HCV. It took me over 11 years to find out I was HCV positive. Almost too late for me.
d
Quick update:
Seems that even with all the connections my GP cant get much from his Mayo Clinic friends.
What they would tell him was that The Mayo Clinic is treating PIS with LDN and that is all.
It is great to have confirmation from the Great and Might Mayo but... too bad Mayo is sooooooo secretive!
Got a zillion things to catch up with... not sure how many peeps will see this and should post a new thread on it all... so Watch Your MH Screen!
lol
f
p.s. Once my GP figures it all out I will be testing out LDN against my PIS!
Seems that even with all the connections my GP cant get much from his Mayo Clinic friends.
What they would tell him was that The Mayo Clinic is treating PIS with LDN and that is all.
It is great to have confirmation from the Great and Might Mayo but... too bad Mayo is sooooooo secretive!
Got a zillion things to catch up with... not sure how many peeps will see this and should post a new thread on it all... so Watch Your MH Screen!
lol
f
p.s. Once my GP figures it all out I will be testing out LDN against my PIS!
Thanks Dee,
I dont think I am any different than all the fighters, like yourself, who advocate for ourselves and others who come to this site everyday.
It pains me when I see or hear about others who cant or wont advocate for themselves and just allow the medical/big pharma run over those so desperate for help!
Keep up the GREAT work yourself,
f
I dont think I am any different than all the fighters, like yourself, who advocate for ourselves and others who come to this site everyday.
It pains me when I see or hear about others who cant or wont advocate for themselves and just allow the medical/big pharma run over those so desperate for help!
Keep up the GREAT work yourself,
f
Hi Frank, I really admire you for not giving up, for continuing to look to find out what is wrong.
Take care
D
Take care
D
WoW, cant believe that you found this thread MMS...
...sorry to hear your ongoing issues... it seems that you have cleared the virus in blood tests at least CONGRATS!
I have been fighting for 1.5 years to get back on Vyvanse (somewhat similar to Nuvigil) and just yesterday picked up my first script after this long battle to be back on the main med that helps my main disability of Chronic Fatigue Syndrome!!!
All my other numbers are normal except Iron which is all messed up in every way.
I too have a brand new GP who had studied at one of the Mayo Clinics. His father studied at another Mayo and a brother at another Mayo so he is going to gather a team of family and Mayo colleagues to discuss my ongoing situation and the Mayo P.I.S. (Post-Interferon Syndrome) analysis.
We also talked about Low Dose Naltrexone (LDN) and the possibility of adding this to my cocktail of meds... The new doc is pretty excited to have me as a new patient and re-establish research buddies at Mayo - which I have been looking for now for many years!
If you look up P.I.S. (Post-Interferon Syndrome) you will find others suffering long term and maybe educate your doctor to the new Mayo term.
Best of luck in your goal toward a healthy future,
frank
...sorry to hear your ongoing issues... it seems that you have cleared the virus in blood tests at least CONGRATS!
I have been fighting for 1.5 years to get back on Vyvanse (somewhat similar to Nuvigil) and just yesterday picked up my first script after this long battle to be back on the main med that helps my main disability of Chronic Fatigue Syndrome!!!
All my other numbers are normal except Iron which is all messed up in every way.
I too have a brand new GP who had studied at one of the Mayo Clinics. His father studied at another Mayo and a brother at another Mayo so he is going to gather a team of family and Mayo colleagues to discuss my ongoing situation and the Mayo P.I.S. (Post-Interferon Syndrome) analysis.
We also talked about Low Dose Naltrexone (LDN) and the possibility of adding this to my cocktail of meds... The new doc is pretty excited to have me as a new patient and re-establish research buddies at Mayo - which I have been looking for now for many years!
If you look up P.I.S. (Post-Interferon Syndrome) you will find others suffering long term and maybe educate your doctor to the new Mayo term.
Best of luck in your goal toward a healthy future,
frank
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