• Welcome to Phoenix Rising!

    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 (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

    To become a member, simply click the Register button at the top right.

Antiviral hit me like a sledge hammer yesterday

Messages
36
And the good news today I feel like a human being again. Much less joint pain and on and on. It is all related to one thing whatever that may be. I am hoping yesterday was just side affects of my body fighting off some enterovirus or some kind of herxheimer from dead virus or whatever circulating through me.
I just have to slow down today and not do to much. That is my pitfall. Have so much to catch up on but have to limit self.:hug:
 

Misfit Toy

Senior Member
Messages
4,178
Location
USA
Every antiviral makes me have horrible pain. Whenever I'm on an antiviral I think it's a Herxheimer reaction that I'm having. But I come to find out from others on here, that it's a side effect due to the medicine. I think the antiviral is helping by killing off the virus, but it's actually just causing me to be sick. Wish I could find one that I could take but unfortunately I can't. The famvir? Not sure.
 
Messages
36
Every antiviral makes me have horrible pain. Whenever I'm on an antiviral I think it's a Herxheimer reaction that I'm having. But I come to find out from others on here, that it's a side effect due to the medicine. I think the antiviral is helping by killing off the virus, but it's actually just causing me to be sick. Wish I could find one that I could take but unfortunately I can't. The famvir? Not sure.
I had a whole year of intravenous antibiotics because the Dr. thought I had lyme. Then I had penicillin shots twice a week for about 4 months, then oral antibiotics. Don't think I had lyme because never got better like I saw so many patients get better and feel great with these drugs. It felt like a virus when it attacked me on October 1992 and it still feels like the same virus is in my system. I feel it came from drinking from a contaminated water source. When first got sick my first positive test showed inflammation at the terminal ileum where those little bugger enteroviruses like to congregate. I am still sore in that region especially when you push on it. No Chrohn's or any other intestinal disease except or a lazy gallbladder. If it is lyme disease it never goes away, at least in my case.
 

msf

Senior Member
Messages
3,650
Hey, I also have this symptom (pain in the terminal ileum). I have tested negative for Enterovirus (Redlabs), but positive for Yersinia, which is known to cause this, although many other bugs do too (including TB, apparently)
 
Messages
36
Hey, I also have this symptom (pain in the terminal ileum). I have tested negative for Enterovirus (Redlabs), but positive for Yersinia, which is known to cause this, although many other bugs do too (including TB, apparently)
They initially looked for yersinia but did not find it. Can that make you really chronically ill?
 

msf

Senior Member
Messages
3,650
Yes, it can. I have been ill for a year now, and I'm 95% sure Yersinia was the trigger. Some people have IgA antibodies to it for years, and some doctors believe this is because they are still infected with it. I don't know which test you had done, but I think the best test is probably an immunoblot for both IgA and IgG. This is because the pattern of antibodies in any given individual seems to change over time, so you might be looking for the wrong one with an ELISA.

If I was you, I would try to see someone who is knowledgeable about GI pathogens, since there are probably dozens of different organisms that can cause chronic illness.
 
Messages
36
Yes, it can. I have been ill for a year now, and I'm 95% sure Yersinia was the trigger. Some people have IgA antibodies to it for years, and some doctors believe this is because they are still infected with it. I don't know which test you had done, but I think the best test is probably an immunoblot for both IgA and IgG. This is because the pattern of antibodies in any given individual seems to change over time, so you might be looking for the wrong one with an ELISA.

If I was you, I would try to see someone who is knowledgeable about GI pathogens, since there are probably dozens of different organisms that can cause chronic illness.
I will do that. I don't think they even knew about enteroviruses 22 years ago. They initially found inflammation in my stomach, mild inflammation throughout entire small intestine and severe inflammation at the terminal ileum and my colon. Stupid me drank from a roadside well up in the catskills ny that someone told me the water was safe to drink. It was shortly after that I woke up sick one morning. I called the town and told them where the well was and they tested the water. They sent me a letter of apology stating they didn't know who put the roadside well there and that it was highly contaminated with human and animal waste. It turns out there was a house right above it in the woods that you could not see and the septic was leaching right into that pipe. I think they looked for the usual bugs including yersinia but could not find any. I am not sure what other things they looked for. Whatever bug it is has attacked my GI tract and still shows inflammation in my stomach as recent as a year ago. They looked for helicobactor pylori but not there.
It also entered my central nervous system and still get almost seizure like episodes, severe headaches, muscle twitching, intolerance on days to sunlight, sound and god forbid I get behind a small stinky diesel school bus. Also ringing in ears is so loud I have lost some hearing. Joints in neck and especially mid back really hurt and snap/pop.
Sinuses get clogged and Dr. says ear drums get inflamed from something. Being so sensitive to sound the irritation to the ears makes me off balance many days. Always feel clogged. Miss riding my motorcycle but too off balance.
Have to look up yersinia after posting this and see if it can linger. It feels like a virus though with the night sweats and low grade fevers on and off. Thanks again, Glenn
 

msf

Senior Member
Messages
3,650
I think I might have fallen ill in the same way...it seems very likely that it was a GI pathogen in your case, and I would just warn you that Yersinia is very hard to culture, so failing to find it in the water supply does not necessarily mean that it wasn't there.
 
Messages
36
I think I might have fallen ill in the same way...it seems very likely that it was a GI pathogen in your case, and I would just warn you that Yersinia is very hard to culture, so failing to find it in the water supply does not necessarily mean that it wasn't there.
Do you have a good infectious disease doctor that is open minded to look for all this stuff? Who helped you get the blood work to see if you had IGG to the bug
 

msf

Senior Member
Messages
3,650
Sorry, I just noticed that you said you had a whole year of IV antibiotics...I imagine this would have killed any GI pathogen, unless the organism was resistant to the whatever antibiotic you were prescribed (I think Yersinia is resistant to Penicillin, for example).
 
Messages
36
What were you meaning to treat here???
Not sure if had Lyme disease or still have it but from your picture I was about your age with my second son just born and I came down with some kind of virus or lyme and have never recuperated. What ever it is started with my intestinal tract and worked its way into my central nervous system, joints, heart and lungs. When ever you try to be active physically you will pay dearly for the next day or so. I used to ski, walk for miles hunting and now stuck on the damn couch many days. There is a Dr. in California who is also a researcher who has found that 80% of people similar to me have ran/dna found on biopsies from their stomachs with enterovirus. In well people there was none. That says something to me. Trying an antiviral now to see if any improvement. Call it post viral syndrome which is what the Mayo Clinic told me or post lyme syndrome or me/cfs.
Be well.
 

cman89

Senior Member
Messages
429
Location
Hayden, Idaho
Not sure if had Lyme disease or still have it but from your picture I was about your age with my second son just born and I came down with some kind of virus or lyme and have never recuperated. What ever it is started with my intestinal tract and worked its way into my central nervous system, joints, heart and lungs. When ever you try to be active physically you will pay dearly for the next day or so. I used to ski, walk for miles hunting and now stuck on the damn couch many days. There is a Dr. in California who is also a researcher who has found that 80% of people similar to me have ran/dna found on biopsies from their stomachs with enterovirus. In well people there was none. That says something to me. Trying an antiviral now to see if any improvement. Call it post viral syndrome which is what the Mayo Clinic told me or post lyme syndrome or me/cfs.
Be well.
thanks mate. I probably have a bacterial only origin, but could be something else....