Further improvement for Dr. Deckoff-Jones

[Jemal]

Dr. Deckoff-Jones has made a new blog post. There have been more improvements for her and her daughter. The improvements seem to come every 2-3 months, so not quickly, but it does seem steadily. She is even thinking of working parttime again and her daughter has written almost 50.000 words for a writing contest!

http://treatingxmrv.blogspot.com/

They have been sick and not functioning for years, so this is very encouraging I think. Even for the sickest of us, it seems improvement is possible. With better treatments, who knows what will be possible? I think Judy Mikovits theorized that it would be a possiblity that we would regain (almost) full health. The road ahead might be long, but it really does give hope.

 

[Overstressed]

Hi Jemal,

yesterday, they brought the news that HIV-infections were on the rise again in Belgium. And because of that, the national radio called a professor and asked some questions, why this was the case. This professor emphasized that, although, less and less HIV+ people get AIDS, due to HAART, the cancer risk remains as before, and this is because the infection remains. They can also tell you when you might get cancer, this is:

Year of infection + 30 years

So, while I understand that getting your life back is a miracle, the science community must fo everything they can to eliminate the virus out of the body. And perhaps this will not be enough, due to the fact that the virus caused damage that is not reversible(gene muatations).

But to end with a positive note, it gives indeed much hope, and I truly hope that all of you regain your health and life!

OS.

 

[Jemal]

HIV infections are also on the rise in the Netherlands again, it was in the news this week (it doesn't sound like a coincidence that the same kind of news was released in Belgium). One of the factors contributing to rising HIV infections is HAART. People are less afraid to get infected with HIV...

I didn't know that the cancer risk is still high in HIV infected people. I am not immediately worried though, as at the moment 1 in 3 people get cancer. So even without a retrovirus the risk is still enormous that you will get this disease. Basically I want my life back first and then I will start worrying about the cancer risk. CFS is controlling me now, cancer isn't.

Anyway, scientists are hard at work to find a cure or effective treatment for HIV and I think they eventually will. The question is how long it will take. Their research will benefit us though and XMRV might be easier to treat as it seems to be a slowly replicating and mutating virus.

 

[Berthe]

:victory: Hi Jemal,

I loved the good news of Jamie and her daughter. It's so hopeful in periods of dispair. What I also loved about the article was the new medication she was taking, that was anti-inflammatory as well. My neuropathic pains are killing me and I often think this is what I have to grow old with. I had no idea that Jamie had this pains and that medication could mean improvement. She is making my day, whoeehhh!!!!

Love,
Berthe

P.S. I'm also looking for physicians in this area of the world who are willing to try anti-retrovirals.

 

[Jemal]

P.S. I'm also looking for physicians in this area of the world who are willing to try anti-retrovirals.

Did you try asking your regular doctor? Do you know if you are XMRV+?
I haven't taken the XMRV test yet, so I don't know my status. But even if I were XMRV+ I am not sure if I would dare to ask my doctor for antiviral medicines... I guess I can't handle rejection

 

[jenbooks]

I am so glad they're feeling better especially Ali who's so young. I just still don't know what better means. They were sicker than I realized. Now they are better but I find myself confused. Jamie did several 12 hour days at the WPI conference some months ago walking miles in the airport (I recall from her blog) and was able to be fine. Was she feeling sick but able to do it? When she is out for five hours not feeling sick does that mean she just feels normal like years ago, but that she is contrasting that with being out every day for many hours but with symptoms? I just don't know what it all means and the amount of drugs in the cocktail scares me. Will they all remain nontoxic for years and years? I am philosophically biased against drugs tho, so that's a personal view.

I remember being shocked when a cfs-er I frequently emailed with mentioned he could not climb the flight of stairs in his house without stopping halfway from weakness to catch his breath. I realized we all know so little of what other virtual selves are really experiencing.

I suffer a lot with an unstable physiology, I get really sick around toxic molds that others tolerate. Many chemicals in homes and clothing bother me, too. I suffer a lot and finding or building a nontoxic home in umpolluted area has proved elusive. But I am usually out and about. I forget I'm sick? I've noticed that mostly when I feel even better (in great state parks in a tent or after an hbot session for a few hours). I may have adapted to the symptoms and don't notice. I read that blog and remind myself I must be grateful for the protocol I do have and all it allows me to do. Thanksgiving is the day to remember how much hope there is for all of us and such a variety of ways to get better. For me it is environmental at this point. It was funny but I was speaking with a fellow mcs sufferer the other night. His mcs started after a bad cfs like virus and mold exposures. I said no matter how perturbing and persistent a symptom as soon as it goes away, I totally forget I ever had it. Until it comes back (with a mold or chemical exposure). He said he was exactly the same. What is that physiological amnesia about? It is important, a key perhaps to a pathway for some of us to heal.

Happy turkey day everybody.

 

[Jemal]

Yeah, it's always hard to understand what improvement means for someone. A lot of patiens consider themselves cured after a while, but they still have many symptoms and aren't their old selves. They are just normal enough that they can start functioning again. For people who have been bedbound for years any improvement is welcome though.

 

[eric_s]

I think Dr. Bell described that this year in one of his newsletters. He said that he has some patients who consider themselves cured, but usually it's just that they have lost the orthostatic intolerance. They still have other symptoms, but since they are able to live a more or less normal life, they see themselves as cured.

 

[jenbooks]

That's interesting what Dr. Bell said.

 

[serg1942]

Hi folks,

Just to put an example, I am bedridden an average of 20 hours daily. However yesterday I was able to go out to the airport at 4:30 am, go to a clinic in Belgium, and then take a flight back at 6:20 pm. I arrived home at 22:30 pm, destroyed...But I made it. I weigh 1 kg less though, and I am paying for the effort...

Am I good, bad? Ok, I don't have OI, or POST. Then by body uses adrenaline to function when I push myself, at the expenses of loosing weight and paying afterwards with a strong worsening of my symptoms...But still, I can do these things...So we should look at the whole picture, not just what we can do, but how we feel by doing things, how we'll feel afterwards, etc.

Sergio

 

[Enid]

Lovely to hear. Please can we have some like this this to enlighten the UK.

 

[jdeckoffjones]

Hi Sergio,

I think you hit the nail on the head. Push/crash is one of the most debilitating symptoms, and the hardest to fathom mechanistically. I'm aware that reading my blog is a bit confusing in terms of understanding our uphill course. 3 months ago, when I went to Reno and Ali attempted school, we were hovering a little below 80 KPS points. We were both running on adrenaline and the amazing thing is we didn't crash completely. We both dipped slowly, about 10 KPS points over a month or so, then started slowly up again. I was feeling kind of stuck when I started Actos and it helped noticably. At this point, we are solidly above 80 KPS points. I haven't been anywhere near as active as I was those few days in Reno, but most of the time we both feel better now than we did then. For the most part, it is more trustworthy too. We still have our ups and downs, as before treatment, but if you look at the entire course of treatment, we've averaged about 10 KPS points every 3 months.

Best wishes,
Jamie

 

[George]

Hey Jamie
Welcome to the boards. I know a lot of people will be pleased to see you here and eager to ask questions. I have a question for you that you might or might not have thoughts on. . . what or how much should the ME/CFS community push the research/government for or towards. I wonder if as patients we know what we need to be doing. What is acceptable and what is not-acceptable in terms of asking for information, trials, treatment options etc.

It seems we lack us a chief, a direction, an overall plan of attack, so we seem to be just hanging out waiting for the apples to fall into our laps. What advice would you give if asked. (consider yourself asked, grins)

 

[jdeckoffjones]

Hey George,

I'm not experienced in the worlds of politics or advocacy. All of my energy is going into trying to understand the science and interpret it medically to best advantage. Clinical trials of antiretrovirals are essential, in my opinion, although I am concerned that ill conceived clinical trials may fail to establish the power of this treatment for CFS, since improvement is so slow and seems to require adjunctive therapies. This is most likely because the virus is already integrated into large numbers of cells which must be replaced by apoptosis. The drugs we have only prevent replication, but can't prevent the immune activating effects of provirus, which may still be transcriptional. Strategies for silencing integrated virus and downregulating the inflammatory cascade will likely be necessary, especially for those of us who have been sick for such a very long time.

Jamie

 

[George]

Smart Lady. (big grins)

I'd like to ask if you have had the opportunity to take Ampligen? We have been talking on another thread about the possibility that viral load may be directly related to severity of illness and that the only way to reduce illness symptoms would be to drop the "active/replicating" viral load. If Ampligen does in fact up the NK cell function this may help and be a good product in addition to anti-retrovirals.

Could you comment on this or do you have any thoughts??

Thanks again for stopping in and answering questions. It helps all of us to get a better understanding of what is possible for the patient community in the future.

 

[jdeckoffjones]

I have no personal experience with Ampligen. I have heard from more Ampligen failures than successes, but my mail is obviously skewed in favor of treatment failures. My instinct though is to stay away from immune stimulators. I think that the manifestations of the illness are due to immune activation, so Ampligen seems like it is barking up the wrong tree to me. You can't blast this virus in hopes of eliminating it, like Hep C. It's going to be there no matter what. We need to find strategies to live with it. Revving an already overrevved system seems counterproductive to me. But as I said, no personal experience with Ampligen.

Jamie

 

[George]

Whooohoo conversation. (grins)

When you say strategies to live with the virus, would that be as a retrovirus it will be with us life long and therefore the potential for reactivation would be lifelong as well? How do you see the virus as affecting you life long term? And do you have an opinion on the time table that we may be looking at for the development of target specific drugs??

 

[jdeckoffjones]

I think the virus, or more likely viruses, are there to stay. I expect to take antiretrovirals for the duration. My guess is that specific drugs are at least 3 years and more likely 5 years away. There are a lot of drugs that didn't make it for HIV on the shelves that might work for X, so that might shave some time off. But it looks like things will proceed sequentially. Probably at least another year for the detection issues. Then arguing about whether it is associated or causative for another couple of years. It is possible that the drug companies will smell the money sooner once there is an accepted, readily available, quick assay.

Jamie

 

[floydguy]

Hi Jamie,

Originally you were monitoring TGF Beta1 and C4a as markers of your progress. As you and Ali have gotten better, have these two things gone down? Have you found anything else to objectively measure your improvement?

Thanks!

Andrew

 

[jenbooks]

I made a post here but decided rather than shift the thread discussion, I'd start a separate post about it.

http://www.forums.aboutmecfs.org/showthread.php?8855-I-Hate-the-Karnofsky-Scale&p=140089#post140089