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Antiretroviral Trial

Charles555nc

Senior Member
Messages
572
I have a consistent pain under my right rib cage...I'm also passing out at mild exertion...I guess my question is, what tests should I ask my doctor to test me to rule out cancer? Its a real fear for me.
 

jimbob

ME/CFS84-XMRV+
Messages
321
Location
myrtle beach, s.c.
Strangely enough, I also have consistent pain under my right rib cage. I've had xrays, abdominal ct's, pelvic ct's and an ultrasound. Only thing found is minor sludge in my gallbladder. I know the fear of which you speak, believe me, but hopefully my results take the edge off for you.
 

Charles555nc

Senior Member
Messages
572
I suspected an infection in the gallbladder, I take malic acid and edta suppositories to lessen the pain. Anyone else feel like, when they go to sleep, like they die and are reawakened in the morning? So many neurological and cognitive issues...
 

undcvr

Senior Member
Messages
822
Location
NYC
I suspected an infection in the gallbladder, I take malic acid and edta suppositories to lessen the pain. Anyone else feel like, when they go to sleep, like they die and are reawakened in the morning? So many neurological and cognitive issues...

Charles555nc did u start taking enzymes for your hypercoagulation ? See to that soon, it will help in a a general way with your other issues slowly, but see to that soon.
 

omerbasket

Senior Member
Messages
510
thanks und. i was taking LiverLonger (recommended to me by dr. leo galland and dr. lombardi) but i seem to become lazy and sick of taking pills so i stop.

i am going to type out a proper chart hopefully tomorrow. i have to make a better effort with the supplements somehow. maybe deep down, i just dont have faith in them anymore...but i will do it.

as soon as my mind starts to clear a little with the azt, my heart really starts acting up. i can feel it already, the pressure increasing. there must be something i can do other than stop the drug.

i have to insist on seeing a cardiologist..maybe there is something?

thanks:)
sue
xoxo
It might be good to see a cradiologist, but aside from that, have you considered taking propranolol? It acts, if I'm not mistaken, as a beta blocker. It is supposed, as far as I know, to slow the heart rate, among other things it does. I took it for a few times when I had a driving tests - because in the first two tests I was so stressed that my leg shaked on the clutch. And when I took it, it worked like a magic on the physical symptoms. It didn't make me less stressed, but I had no shakes anymore. And again, if I'm correct, it should also slow the heart rate. They give it, I think, to people with hypertension.
 

undcvr

Senior Member
Messages
822
Location
NYC
Yes Propanolol is a beta blocker. Cardiac issues is also part of the theory that the viruses hide out in the heart muscle amongst other places, causing all the complications there. It is also the reason why excercise is so dangerous to us and why we get exhausted so quickly. Daff while you wait to see a cardio specialist you can take some Coq10 at high doses, that will help your heart too. Heart muscles use alot of Coq10 and it is still considered a semi-vitamin. The body can make some of it but not much.
The other theory is that what ever is affecting us hides out in the CNS too, causing events that are already stressful to be even more stressful. Its really a lose-lose situation. It makes us unable to cope with stress.
 
Messages
71
Location
Seattle Washington
Liver Ache

I have had the same pain under my right rib cage. It feels as if my liver is aching; I have described it like a headache in my liver. Do either of you have chemical sensitivities? I think it is our liver.
I had a test done years ago on my liver detoxification system and it showed that I had an overactive phase 1 and my phase 2 was so slow that it was off the chart, literally. The doctor at the time who was a M.D. who primarily worked with alternative medicine, told me that all he could tell me was to take a lot of antioxidants.
Pinky
 

Daffodil

Senior Member
Messages
5,875
hi all. i went to see my ID doctor today. he says that if i have not improved in this long- 10 to 11 months - on the meds, he would be surprised if i made any drastic improvements later on.

i guess stopping active viral replication means very little with this disease.

he said infected cells do not necessarily undergo apoptosis on their own.

so it looks like the fight is just beginning for those of us who were untreated for a long time...no end to this suffering yet.
 

Daffodil

Senior Member
Messages
5,875
thanks, moon.

Question for dr. mikovits: Is the inflammation from XMRV being caused by viral reservoirs? If so, how can it be managed? Will the reservoirs decay over time?



A: That is the hypothesis and what is seen in animal models of this family of viruses. We don’t know what the reservoirs are..but it is possible that some are short lived..Long lived reservoirs would not decay over time rather could harbor virus for the life of the infected host as in all other human retrovirus infections (HTLV, HIV)
 

undcvr

Senior Member
Messages
822
Location
NYC
Daff I am sorry to hear that the ARV trial did not go so well. But the last few posts that you put up, you were going through so much, it seemed better that you just came off it at that point. Just keep your daily regimen of nutrient rich foods high and it will help some. Not a cure but will definately help. I think that I am about 6.5, and I got to this point all on my own just with supplements, eg, eggs, garlic, brewer's yeast, Bifidum probiotics, etc. To me all these together, at the same time has definitely done something.
 

mojoey

Senior Member
Messages
1,213
I haven't thought about DCA and gcmaf in combination but that sounds intriguing. DCA to render apoptosis in infected cells plus gcmaf to gobble up infected cells and active virus. I haven't heard anything about DCA for CFS though. Have you heard of any other patients trying this and to what effect?
 

citybug

Senior Member
Messages
538
Location
NY
undcvr I started 4.5 mg low dose naltrexone LDN just because was amount recommended years ago by Bihari.

Charles A dr recently thought I had cancer and did CA-125 and CEA called tumor markers on the test. and regular white red blood count. said why not get a colonoscopy. (mine showed I have an infection, haven't found it).

Daffodil, are you saying below ribcage or heart level under right side? I think i get inflammation or something that causes soreness with the rapid heart rate. have a script to fill for propranolol. has anyone been taking it? I agree building up with good diet, any immune system boosters. Everything I tried in the past and didn't work as far as PEM, I now think maybe would have helped in not getting to such a bad state. Someone said Cheney site says broccoli twice a day. I think I do better on the days I can make soup veggie broth.
 

Daffodil

Senior Member
Messages
5,875
thanks all. i am still on the ARV's. i wake up very inflammaed and remain so for throughout the day. it really hasnt done much for me at all. i am kind of surprised because there should be SOME reservoir decay, unless the entire XMRV population exists in post-mitotic, long-lived cells? how awful.

i just hope that whatever intravenous treatment we will need, it won't be more than a 1-time deal cuz i will not be able to afford it more than once (if that!). and that's if i make it until they figure out what to do.
 

citybug

Senior Member
Messages
538
Location
NY
hi sue, did you have the igenex test for lyme? If lyme makes harder to treat... My friend with lyme has a lot of brain symptoms, getting relief with iv antibiotics.
 

TheMoonIsBlue

Senior Member
Messages
442
Hi, I believe Lauricidin does have Antiviral properties...not sure about RV's, but their website has a lot of info about viruses, bacteria, dosing info, etc. I think there was an old thread on Lauricidin I'll try to dig up for you.

P.S. Just found the thread....it is up under the Antivirals, Antibiotics and Immune Modulators section
 

undcvr

Senior Member
Messages
822
Location
NYC
Monolaurin is supposed to the the part of coconut oil that is anti viral. You have to take about 2 tbl a day for over a few months.
 

Daffodil

Senior Member
Messages
5,875
thanks guys. yes i have been tested for lyme multiple times, including testing at igenex.

i've sort of given up on the idea that i will be helped much with ARV's alone. at best, it might be keeping the disease from progressing at the same pace it was before. I don't even think the reservoirs will decay over time. I think they are long-lived (just a guess).

i am in agony so this is very unfortunate. i will have to wait for whatever the WPI will do, such as IVIG or Rituxan or something...which I have no idea how I will afford. And the travel will be excrutiating.