Valcyte so far

[Cort]

I've only had one other doctor even bring it up and he had the balls to say it to my face, sort of.

He had replaced my old PCP and asked me every which way he could to try to get me to say I was depressed. When I called him on it was shocked that I knew what he was doing. Duh. How obvious can you be?

I don't remember what I said, if I even addressed it, but I immediately went home and got a new pcp.

This guy didn't even have the nerve to say it to my face.

If you saw bus letter to my PCP you wouldn't believe. Not only does he not know about ME but he is clueless about immune disorders like CVID.

just had another idea. Thanks cort you get me thinking.

It's like these guys get so burned out during medical school they stop learning..

Here's a symptom description thread I just created - I thought it was tied to this thread but it wasn't ...where was that description of fleshing burning off one's arms.....?

• http://www.cortjohnson.org/forums/t...fibromyalgia-symptom-description-thread.2845/

 

[Who Me?]

@Cort and we all know that you could put 1000 of us in the same room and none of us would have the same symptoms.

 

[Cort]

How's it going now?

 

[Who Me?]

@Cort interesting. The last two weeks I've had nothing but problems at home. First a gas leak then a plumbing issue yet to be repaired.

It's been two weeks of phone calls and people traipsing in and out. The most consecutive days rest I've had is 2 which is not enough.

Also in the middle if this I had a bad reaction to something, I think progesterone, and that flattened me. Horrible fog. Could hardly breath.

I should finally be able to rest hopefully Friday for about 5 days. It remains to be seen how bad I'll crash and how long it will take me to recover. Then I have a quick trip out.

If it's not an epic crash the only difference would be valcyte. 450 mgs

In October I get labs and I'm going to ask to recheck viruses and see if something is helping.

The ID doc told me I didn't need to take famvir with it but of course i didn't listen. Lol

I am having lots of hip pain. I don't know if its related.

 

[Zapped]

I scanned your Valcyte posts since I had tried it for a month a couple of years back - got a chuckle or two as well.

I made the mistake of starting and staying with 900mg for 30 days, also self directed. At that time I felt like the rat in the trap - I no longer wanted the cheese - I wanted out! (Now, I have $8k still lingering in the dark and cool.)

While I'm not on Valcyte now (and not likely to re-up) I have an idea that might help with your gut problems, as it has immediately helped me. It's not necessarily related to Valcyte but maybe it can facilitate your efforts???

(I know you like white space... ,)

There's a Kindle Book at Amazon I recently read, 'The Inside Tract', Gerald E. Mullins, MD (Gastroenterologist).
It's only $3 (as it's a 2011 edn. He's prolific; and Andrew Weil endorsed him in the foreward). You might grab a copy if only to check the chapter on his protocol for supplements for the gut.

While you likely know some of the stuff already since you have IBS, you can cover that material in 20 minutes. You'll be surprised at a couple of his experienced (and referenced) recommendations.

He credibly reviews ~10 specific, readily available supplements. I got a handful of them cumulatively and ended up otherwise replacing Protonix for GERD and got major relief from other IBS symptoms quickly.

'Just a thought since you feel Valcyte may be causing some related distress. Post results if you give it a go.

Good luck from a fellow longtime PWC.

 

[Who Me?]

Thanks for the info. I had IBS long before I started the Valcyte that I am able to manage with diet. The Valcyte problem at 675 and above was not IBS. It was horrible painful bloat that never ended. Since that is a side effect of Valcyte it was just easier for me to back down.

And many people do well at 450 and from a cost perspective, it works out much better for me.

Thanks for the paragraphs breaks.

 

[Who Me?]

Labs next week. CBC CMP and CMV EBV and hhv6.

I'm not sure when I get results. Maybe a week?

 

[Who Me?]

I realize I haven't updated for awhile. I am really not noticing much. I can't take more than 450 mgs without having really uncomfortable Gi side effects which I can't tolerate

The last few days if I exert myself at all I get a sore throat. That usually means a viral reactivation although I think this has more to do with my mpn since my numbers are stupid high and I have other symptoms I think are mpn related.

I think I'm going to stop the Valcyte and see how I feel. I've been on it almost 10 months and I'm not noticing much

All labs have been fine.

 

[Cort]

What is MPN and what are your numbers?

Interesting about the sore throat. I had a sore throat for at least ten years after I got sick.

I realize I haven't updated for awhile. I am really not noticing much. I can't take more than 450 mgs without having really uncomfortable Gi side effects which I can't tolerate

The last few days if I exert myself at all I get a sore throat. That usually means a viral reactivation although I think this has more to do with my mpn since my numbers are stupid high and I have other symptoms I think are mpn related.

I think I'm going to stop the Valcyte and see how I feel. I've been on it almost 10 months and I'm not noticing much

All labs have been fine.

 

[Cort]

@Cort and we all know that you could put 1000 of us in the same room and none of us would have the same symptoms.

We don't make things easy for anyone...

 

[Who Me?]

@Cort. MPN is mycoplasmam pneumonia and I'm pretty convinced this has been causing issues for me. big things. I really notice breathing issues which I've been complaining about for awhile, and it can cause a ton of other things. Found this last night. Don't know the guy.

http://www.drgregemerson.com/fact-file/mycoplasma

 

[Seanko]

In the end, did Valcyte reduce your symptoms?
I know it is hard to be objective in these circumstances when there is no control Minx to compare before & after.

 

[Who Me?]

@Seanko i don't think it did much for me but I know @Strike me lucky has good results from it.

I would still try it again if I had a doc who would support me.

 

[Zapped]

@Seanko i don't think it did much for me but I know @Strike me lucky has good results from it.

I would still try it again if I had a doc who would support me.

@Minx. I hope you don't mind me adding my 2 cents here... . I think you're making a wise choice stopping, especially given the complications Valcyte can induce, and they can sneak in if someone's not watching the blood every 10 days or so.

As I said above, I too tried it but only for a month and front-end loaded (2 x 450mg at that time). At the end
of the month I felt like I was going to die if I continued so I stopped and, subequently, at least returned to baseline.
(The doc didn't know from Shanghei what she was doing; I had just convinced her to rx based on Montoya's early
Trials.)

In hindsight, and having tried many other synthesized protocols (before and after), and analyzed it from A to Z in my own purview of many years, I have come to an opinion that this malaise is systemic in nature and not (necessarily) caused by a pathogen (but may be in some cases). Otherwise, all the lab research would have eked out some notable turnarounds. (Admittedly, some of the anti virals have immune modulating effects but if they were really holding replication at bay or killing the viruses then presumably a lot of people would have felt far better by now. Some have reported feeling 'somewhat' better after antiviral treatment... .)

Assuming you have been around the 'open sesame' block, I'm wondering what you now think in this regard?

 

[Who Me?]

@Zapped. sorry you had a problem but I had no problem with 450 mgs and only stopped because I didn't feel any better. I'm not concerned about problems with any meds I take because the risk to improve this non-life I have is worth it.

I'm not able to read your post but I can tell you I feel hugely better on Famvir and felt hugely better on acyclovir. I believe I said @Strike me lucky also gets huge benefits from Valcyte.

 

[Seanko]

@Minx yes @Strike me lucky has been educating me about various anti-virals in another thread.

I guess as we break ME/CFS into sub-groups we'll find that some people respond to anti-virals & others do not, in he same way as Norwegian researchers are seeing with the use of Rituximab to re-boot the immune system.

 

[Who Me?]

I'm not sitting around for another 5 or 10 years to find out if rituximab works and if I'm in a sub-set. There are lots of questions about it and infections which I have. I can't afford to wait.

Yes @Strike me lucky is very knowledgable

 

[Zapped]

I'm not sitting around for another 5 or 10 years to find out if rituximab works and if I'm in a sub-set. There are lots of questions about it and infections which I have. I can't afford to wait.

Yes @Strike me lucky is very knowledgable

Oh, I understand clearly! I'm running out of time as well but my 'potion' is aimed at symtoms, self-initiated treatment.
And I agree to each his/her own.

I guess what I'm questioning is a SWAG - and making a statement, based on a lot of years of study and observations while steadily declining from classic CFS - as defined, and as the real PWC's know it to be... .

In a few years we'll likely see some # of PWC's on the other side of the grass or at best, sicker from taking Valcyte, Draco and the whole back lab of 'anti virals' when they might have been better off taking sleeping pills, stimulants and sedatives, ie to feel better, today... - until and unless a culprit is tagged.

Some might call it quackery. I see it as pragmatism.

 

[Who Me?]

And I just don't give a sh*t.

 

[Zapped]

And I just don't give a sh*t.

I"m convinced!

Oh, and I hope you get whatever help you want.

Ciao.

Life's a bitch