xmrv+ starting AV's tenofovir and raltegravir

[jimbob]

Just contacted the Gilead Co. and they're sending me paperwork to complete and send back for assistance on Viread. Have plenty of Ral at home to go with it. Talked my Dr. into signing for the Ral, so hopefully I can pull this off too. I'm counting on you Pinky to continue to improve girl, so don't let me down. Once I get the Viread, I won't hesitate to start both! Lets hope this combo does the trick.

 

[illsince1977]

I have the burning feet thing, too. Funny, I discussed it with my CFS specialist in 2010, even though I'd never mentioned it before as it is pretty low on my priority list of things worth asking about because it doesn't impair function nor is it painful - just somewhat uncomfortable. I got the feeling he had never heard of this particular symptom before. After years of having treatment guided by symptom clusters, I'm afraid I don't find them very valuable. On the other hand, testing doesn't seem particularly valuable either, as it has never lead to any treatments that lead to improvement for me.

 

[citybug]

I have past several months dry eye, eczema, no ear wax which I hadn't heard from others. I am changing thyroid meds, but I think it is related to the night sweats. Possibly estrogen besides the cytokine activation

 

[heapsreal]

anyone on the antiretro drugs with herpes infections ebv/cmv/hhv6 found there titre levels come down without specific avs for them. I understand there was a recent study that showed one of the retrodrugs was effective against ebv but anyone have any actual experience.

cheers!!!

 

[undcvr]

City - do you think the dry eye and the eczema cud be due to the dry winter conditions ? I get that alot too during the winter months. A humidifier in the home helped alot with that.

Heaps if you are talking about Isentress as effective against ebv/cmv/hhv6, it is very seldom given alone against any virus. It is an integrase inhibitor and viruses are known to very quickly mutate against that. That is why doctors wont prescribe it alone and I am surprised some on this thread are taking it by itself.
My doc is a virologist that specialises in hiv and will only give it to me along with my Valcyte.

 

[pinkytuscadaro]

Checking in day 7 on RV's : Good morning everybody, I am doing about the same on the RV's, they have not been difficult so far; just some dizziness and stomach upset.
1977 yes the feet burning is not a huge concern but is another odd thing that came along with this illness. It is bothersome for me though and I do have to put some kind of cold pack on my feet to fall asleeep.

Jimbob, I am on LDN too. It is suppose to be helpful did you see the article I posted earlier on this thread about it?

Heapsreal, that is a great question. I do not have a viral count on my hhv6 infection so I can not answer it. I am just assuming that if it helps xmrv it will help the other co infections too.

Does anybody else feel like their digestion is compromised? I have had this symptom where my tummy is dead, no natural movement. As I wrote earlier on my symptom list, I could take up to 12 hydrochloric acid capsules at a time with a meal and I would get no burn.
However that changed since taking AV's. The AV's really caused me stomach upset: I felt as if I had the flu the whole time I was on them. I had to quit them because I became allergic: My body started to itch all over but then at the same time my stomach started to produce acid better: I can not take over 3 HCL caps now or I feel a burn. I guess this must be a good sign but it has not translated into better health yet.
Hopefully to clarify things, I was on the AV's Valtrex and Famvir for about 3 months prior to starting the RV's. I had to quit the AV's becaue of an allergic reaction that I had that caused sever itching.
I was also on the AV valcyte almost 3 years ago and although I did not have a problem with itching while on Valcyte I did not do well on it and acutally ended up hospitalized from an infection that I got from a b12 shot while on it. I think it lowered my immunity. By far Valcyte was the hardest drug I have taken out of the AV's and RV's so far.
It is still early on for the RV's so only time will tell.
Wishing everybody good health.
pinky

 

[bertiedog]

Checking in day 7 on RV's : Good morning everybody, I am doing about the same on the RV's, they have not been difficult so far; just some dizziness and stomach upset.
1977 yes the feet burning is not a huge concern but is another odd thing that came along with this illness. It is bothersome for me though and I do have to put some kind of cold pack on my feet to fall asleeep.

Jimbob, I am on LDN too. It is suppose to be helpful did you see the article I posted earlier on this thread about it?

Heapsreal, that is a great question. I do not have a viral count on my hhv6 infection so I can not answer it. I am just assuming that if it helps xmrv it will help the other co infections too.

Does anybody else feel like their digestion is compromised? I have had this symptom where my tummy is dead, no natural movement. As I wrote earlier on my symptom list, I could take up to 12 hydrochloric acid capsules at a time with a meal and I would get no burn.
However that changed since taking AV's. The AV's really caused me stomach upset: I felt as if I had the flu the whole time I was on them. I had to quit them because I became allergic: My body started to itch all over but then at the same time my stomach started to produce acid better: I can not take over 3 HCL caps now or I feel a burn. I guess this must be a good sign but it has not translated into better health yet.
Hopefully to clarify things, I was on the AV's Valtrex and Famvir for about 3 months prior to starting the RV's. I had to quit the AV's becaue of an allergic reaction that I had that caused sever itching.
I was also on the AV valcyte almost 3 years ago and although I did not have a problem with itching while on Valcyte I did not do well on it and acutally ended up hospitalized from an infection that I got from a b12 shot while on it. I think it lowered my immunity. By far Valcyte was the hardest drug I have taken out of the AV's and RV's so far.
It is still early on for the RV's so only time will tell.
Wishing everybody good health.
pinky

Hi Pinky
The low stomach acid is caused by low cortisol here is a link with the explanation -

http://en.wikipedia.org/wiki/Cortisol

I know this is true because I didn't used to be able to produce hardly any stomach acid prior to taking 5mg Prednisolone and a bit of h/c. Now I don't need any extra betaine.

Also it is quite common if the adrenals are trashed like they so often are in ME/CFs that we need some fludrocortisone so we can hang on to some sodium. Just half a tab of fludro has got rid of the severe POTS I used to have and now I can be upright without a problem. I do need a low dose betablocker for this too. You will notice the section on Sodium in the Wiki link. You can test for this by being in the dark and shining a torch into one eye. The pupils should contract but if the sodium balance is off then this doesn't happen, the pupils either fluctuate or go very large. This used to happen to me but now they are fine. This has only happened since the Fludro was added.

Good luck with your AVs.

Pam

 

[pinkytuscadaro]

Hello Pam,
Thank you for your information. I had been on cortisol fludrocortisone and prednisone to treat my adrenals in 2009 and 2010. I am now taking only 10mg of cortisone a day, down from 30mg, no prednisone or fludrocortisone.. You have reminded me that yes my stomach acid production began to get better when these were started. Maybe it had nothing to do with the av's? Although it was during the time that I was taking the av
's and my stomach got so sick that I really felt that my stomach acid production kicked in on it's own and that is about the same time I was lowering my cortisone and prednisone dose.
I cut back on or quit these 3 meds because I did not think they were doing much for me and when I last saw my NP she wanted me to get a dexa bone scan to check if I had bone loss from taking prednisone. I weaned myself off of prednisone after that appointment.
I know you are not on prednisone.
The POTS I have is really bad. When I get some energy I am going to try and find the article that you referred to.
Maybe the fludrocortisone was doing more for me than I realized?
Thanks again.
Pinky

 

[undcvr]

I wish you had tried the Shark Liver Oil while on the Valcyte it is the only thing keeping Valcyte's strong side effects at bay, that and bone marrow soup
and I am on the very high dose of the Valcyte too.

Colonising your gut with good bacteria again can do the trick too. But only with strains that are indigenous to our guts in the first place.

 

[bertiedog]

Hello Pam,
Thank you for your information. I had been on cortisol fludrocortisone and prednisone to treat my adrenals in 2009 and 2010. I am now taking only 10mg of cortisone a day, down from 30mg, no prednisone or fludrocortisone.. You have reminded me that yes my stomach acid production began to get better when these were started. Maybe it had nothing to do with the av's? Although it was during the time that I was taking the av
's and my stomach got so sick that I really felt that my stomach acid production kicked in on it's own and that is about the same time I was lowering my cortisone and prednisone dose.
I cut back on or quit these 3 meds because I did not think they were doing much for me and when I last saw my NP she wanted me to get a dexa bone scan to check if I had bone loss from taking prednisone. I weaned myself off of prednisone after that appointment.
I know you are not on prednisone.
The POTS I have is really bad. When I get some energy I am going to try and find the article that you referred to.
Maybe the fludrocortisone was doing more for me than I realized?
Thanks again.
Pinky

Hi Pinky

I have been on Prednisolone for over 8 years now and had a DEXA bona scan late December. I was really worried it would come out very bad especially as I am 62 and 9 years menopausal. However I was delighted to hear that I had the bones of a 30 year old.

I think this is to do with the fact I have been using some T3 as part of my thyroid replacement plus low dose Estriadol. I also take lots of magnesium and good quality supplements and eat a lot of dairy because it suits me.

It would seem to be true that if one's adrenals just aren't producing sufficient cortisol etc and we just take up to a replacement dose there is no problem regarding the bones provided we provide good quality nutrition.

Pam

 

[Forebearance]

I seem to remember someone saying that burning on the soles of the feet is a symptom of one of the Lyme co-infections. One of those "B" infections. What are they called again? Babesia and Bartonella?

 

[pinkytuscadaro]

Pam,
I am also on t3 eat dairy and use bio identical hormones. I have spent my life savings and every extra penny I have acquired since getting ill on supplements.. Between you and me I am overwhelmed by supplements. They are everywhere in my house: in all my cupboards beside my bed in my bathroom....etc and I really wonder if they have made any long term difference in this illness? I quit the prednisone because I don't think it was helping me. I really don't know anymore.
I woke up this moring depressed with my nerves feeling very agitated. I hope that it is not the meds since it is very hard for me to tolerate this.
Time will tell.
No other changes to report.
Pinky

 

[ukxmrv]

I know what you mean about the supplements. I'm overwhelmed as well. Mine are under the table. On a chair and then old bottles in a drawer.

Wishing you all the best Pinky!

XMRV+

 

[heapsreal]

wow! i thought u were describing my place, i thinking if we could click our fingers and cure cfs alot of vitamin/herb shops would notice their sales go down, way down. lol. I think with supplements we have to remember that we take them for general health mainly.

cheers!!!

 

[pinkytuscadaro]

Yes, It is really a crime, us chronically ill people grasping at straws.
Doctors or naturopaths who treat CFS over the years not taking insurance, charging a fortune, selling their supplements at huge mark ups and not ever one "I'm sorry" when I got no results, just a big bill that I better pay at the end of each visit. (I have had some wonderful caring doctors too and I now have a Great NP)
I remember about 5 years ago a CFS clinic opened up in Bellevue Washington about an hour from where I live.
I scheduled an appointment and was told to bring all of my supplements with me. That was a tall order
Well I was very happy when I managed to arrive at the clinic with my garbage bag of supplements and then when I was checking in I realized in all of the to do to get to my appointment I forgot my wallet. OMG, I apologized to the lady at the front desk and told her that I would phone in my credit card# as soon as I made it home that day and in the mean time was willing to leave my purse or whatever they needed for collateral. The receptionist called the doctor and told her about the situation; I was told that I needed to reschedule my appointment. Didn't they understand how hard it was for me to even get there? They were suppose to be a CFS clinic after all?
I am ashamed at the amount of money I have spent trying to get well over all of these years.
It is actually embarrassing that I could have been such a sucker over and over....
and I even feel self centered, I could have used that money to help a family member or a homeless person.
What do you do? We only have one life and when we are out of commission that costs us and everyone else a lot of money too?
I just hope that we are on the right track with the RV's if not I do not know if I have anymore in me.

I also wanted to comment on the high level of intelligence that many if not most of the people who post on PR seem to have.
Wow, that really encourages me that we will get well one day and it gives this illness more legitimacy too at least to me.
I am not even sure anymore if I use to be smart but I think I was; I know I was enthusiastic and driven.
I guess what I'm saying is that I'm glad to see that not everybody is as lost as me since it seems that I could not think my way out of a wet paper bag anymore and if it were left to people like me to get us well, we would all be in big trouble.
Pinky

 

[heapsreal]

The thing is there is not many people out there to help us, so we become our own doctors, then again theres no proven treatments either, only symptom management. We dont know whats going to help unless we try them, these places atleast give us an idea of what has helped others, so points us in the right direction. I have wasted alot of money on supplements and medications but i have found what works for me, its no cure, but there are somethings that definately help. So dont feel bad about spending alot of money, call it a learning curve, plus u have probably kept a few people in a job too.

cheers!!

Yes, It is really a crime, us chronically ill people grasping at straws.
Doctors or naturopaths who treat CFS over the years not taking insurance, charging a fortune, selling their supplements at huge mark ups and not ever one "I'm sorry" when I got no results, just a big bill that I better pay at the end of each visit.
I remember about 5 years ago a CFS clinic opened up in Bellevue Washington about an hour from where I live.
I scheduled an appointment and was told to bring all of my supplements with me. That was a tall order
Well I was very happy when I managed to arrive at the clinic with my garbage bag of supplements and then when I was checking in I realized in all of the to do to get to my appointment I forgot my wallet. OMG, I apologized to the lady at the front desk and told her that I would phone in my credit card# as soon as I made it home that day and in the mean time was willing to leave my purse or whatever they needed for collateral. The receptionist called the doctor and told her about the situation; I was told that I needed to reschedule my appointment. Didn't they understand how hard it was for me to even get there? They were suppose to be a CFS clinic after all?
I am ashamed at the amount of money I have spent trying to get well over all of these years.
It is actually embarrassing that I could have been such a sucker over and over....
and I even feel self centered, I could have used that money to help a family member or a homeless person.
What do you do? We only have one life and when we are out of commission that costs us and everyone else a lot of money too?
I just hope that we are on the right track with the RV's if not I do not know if I have anymore in me.

I also wanted to comment on the high level of intelligence that many if not most of the people who post on PR seem to have.
Wow, that really encourages me that we will get well one day and it gives this illness more legitimacy too at least to me.
I am not even sure anymore if I use to be smart but I think I was; I know I was enthusiastic and driven.
I guess what I'm saying is that I'm glad to see that not everybody is as lost as me since it seems that I could not think my way out of a wet paper bag anymore and if it were left to people like me to get us well, we would all be in big trouble.
Pinky

 

[pinkytuscadaro]

Heaps,
I just checked out your profile and see that you have been sick since 2002.
I'm sorry for the bitterness but I have been dealing with this for 24 years and I know there are others who have been sick much longer.
Time does takes it's toll.
Pinky

 

[heapsreal]

i understand, just trying to put a positive spin on it. I hope i dont get to 24 years with cfs but i dont like my chances.

 

[pinkytuscadaro]

Heaps,
Thank you, and you did put a positive spin on it; I have had one of those days. I in no way want to make less of what you have been through as the first year of CFS is as full of loss as the last year but the years do add up.
I think we are on the horizon of a new day for those with CFS and because you have not had it for 20 pluss years I think that you will be well again, I pray you will.
I'm sure that many of us who have been sick for decades will get well too. I can say however that over the years, I have lost a lot of my life force. If I woke up tomorrow well though I'm sure I could find it again.
Thanks again Heaps for your input it is so nice to have others who are in the same situation to converse with. What a blessing PR has been.
Pinky (Lynn)

 

[ukxmrv]

I think I may know a little of what you are feeling, Lynn. I've had ME since the 80's and there has been no sign of a remission or lasting improvememt. Spent money on finding a cure. I could have owned my own home by now or had savings but it all went on treatment.

Embarrassed to admit that time and energy went on some really stupid things in the past. I could have spent that time with family or friends or on something with a lasting benefit. Hindsight is a wonderful thing.

So much of my focus is on XMRV and treatment now. Obviously, if it all goes wrong, I'll focus on the next new thing but it gets harder and harder each time.