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Any Help for Post Treatment Syndrome
Hello,
Has anyone done anything that actually helps the post treatment symptoms, fatigue, lethargy, depression, etc? There are thousands of posts regarding this situation, but I haven't seen anyone talking about things that they have tried that worked.
I am also curious if there is any research out there about what actually happened to our bodies that caused these continuing conditions? Someone must have done some research, but I have never been able to find anything published. If nothing else, I'd just like to know what was damaged so I can understand the process.
My history: Treatment in 2001, 6 months, cleared the virus, been sick and disabled for the last 13 years. Sometimes better, sometimes worse. Stress wipes me out.
Has anyone done anything that actually helps the post treatment symptoms, fatigue, lethargy, depression, etc? There are thousands of posts regarding this situation, but I haven't seen anyone talking about things that they have tried that worked.
I am also curious if there is any research out there about what actually happened to our bodies that caused these continuing conditions? Someone must have done some research, but I have never been able to find anything published. If nothing else, I'd just like to know what was damaged so I can understand the process.
My history: Treatment in 2001, 6 months, cleared the virus, been sick and disabled for the last 13 years. Sometimes better, sometimes worse. Stress wipes me out.
Best Answer
it was my liver consultant that treated me who finally gave me the diagnosis after 5 years of back and forth.
LDN=low dose naltrexone-it's an opiate receptor antagonist used in the treatment of opoid addiction and also alcoholism but in low doses is being tried to dampen the immune system.
Oh, can't wait for a report back.
Get some good questions written down. Make sure you record the call so you don't forget a thing... even ask that they record everything on the Mayo side and send you a copy - especially if you are going to pay for a phone consult.
Best of luck and this is really exciting!
Get some good questions written down. Make sure you record the call so you don't forget a thing... even ask that they record everything on the Mayo side and send you a copy - especially if you are going to pay for a phone consult.
Best of luck and this is really exciting!
so do I-first port of call,the folk who did this to us-they have the most knowledge of PIS. (they do know about it,don't be fobbed off).
I think I will try and contact Mayo. What have I got to lose? Just money, but if you compare that to years lost, you get the idea. I had been doing well for a few years. This downturn is a shock to me. I am now seeing a Naturopath. She is giving me IV's with Phosphatidycholine and Glutahione. Not sure if it's doing anything yet.
I think the Hep C or Liver department is a good idea.
I think the Hep C or Liver department is a good idea.
WoW, 3+ years! You really are an early adapter!
Mayo won't say anything unless you are a patient with them! My doctor (a nd his brother and father) studied there and contacted a couple of friends that are still there. They were very careful about what they are treating PIS with but at least they did confirm that they were using LDN but would not say anything else.
When I went thru the Mayo site I did notice that they did do phone consultations $$$ but if your insurance would cover a trip to one it would certainly be worth it... it was explained to me that one stays for about 3 days while you are seen by multiple specialist in various fields - a true holistic medical world.
I guess if you were going to call I would start with the Hep C/Liver Dept...
Mayo won't say anything unless you are a patient with them! My doctor (a nd his brother and father) studied there and contacted a couple of friends that are still there. They were very careful about what they are treating PIS with but at least they did confirm that they were using LDN but would not say anything else.
When I went thru the Mayo site I did notice that they did do phone consultations $$$ but if your insurance would cover a trip to one it would certainly be worth it... it was explained to me that one stays for about 3 days while you are seen by multiple specialist in various fields - a true holistic medical world.
I guess if you were going to call I would start with the Hep C/Liver Dept...
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