Discussion in 'Antivirals, Antibiotics and Immune Modulators' started by Ema, May 20, 2013.
no good at all.
do u feel better after the iv steroids??
I do feel better after the steroids. But I also feel weak and sad and like I've been thrown out of a moving car and run over a few times. I'm at the bottom of the hill again and scared I don't have it in me to start climbing again.
It's a bump. Just a little bump...
Bumpity Bump seems to be our lives. I hope this one will be a smallish speed bump for you. Get the
aspect. It sucks!
feel sorry for you, having big expectations and then coming crashing down is depressing?? Positives are u know u definately have adrenal insufficiency, so keep treating that and then look forward to other treatments etc?? The pathogen studies are coming out now, so interesting times when in doubt a valium sandwich never goes a stray.
So just for a small update...it's now not clear if it was actually my adrenals punking out or a giardia infection from the puppy. Apparently shaking, nausea, diarrhea and heart palps are also symptoms of a giardia infection and Ivey's fecal sample came back positive.
So I'm back on abx and no steroids again and am feeling ever so slightly better. Not out of bed yet, but maybe a little more hopeful that my body will work again.
I'm also trying phosphatidylserine which is also really scary considering all I've ever heard is how it lowers cortisol. But Dr Bryan Walsh seems adamant that it also helps resensitize the hypothalamus in low cortisol situations at a minimum dose of 800 mg so I am going to give it a shot. This could get expensive though considering it comes in 100 mg capsules!
I have to admit too that I am really nervous about the next cidofovir infusion considering how poorly the last one went. And sometimes the fear is worse than anything. May have to take a valium sandwich! It makes it hard to have to travel for it too.
That, if true (giardia) would be good news. I've had it and it was the pits.
Did Lerner give any input on this? Like could cicofovir have affected the adrenals?
If you do take the phosphatidylserine and want to take less than on gelcap (mine were gelcaps anyway), if you freeze them, you can cut them.
Best wishes on this.
Have u thought of buying bulk powdered phosphatidyle serine and then make your own caps, works out alot cheaper.
Yes, if it works out, I think I will definitely do that. Thanks for the link!
I'm also looking into getting the transdermal cream compounded. Walsh writes about joint pains at higher doses...wonder why that would happen?
That would require me to be moderate! I took 600 mg yesterday and it went OK so far. The studies I read say that there is no effect on the HPA below 800 mg. But another study says that you need at least 800 to get the resensitizing effects on the brain. So I think I will aim for 800-1000 mg/day and see where that gets me. Hopefully none of the side effects like joint pain...or low cortisol obviously!
No, Lerner is not big on input. But I don't think it was the cidofovir honestly. I think it was just a lot of stress in the last month and then possibly an infection on top of that. I hope so anyway. I'm so very tired of feeling like this again. Thanks for the good wishes!
are they reputable?
all i can say is i have used them a few times with no issues and will use them again.
Hi Ema, I have not been on site 4 long time. How are you doing, pls tell me great. Update for me, wen I went back to Lerner last month expecting him to add the valcyte to take (which I already did for a year in 2007), out of nowhere he said that he felt I shud b put on the Cidofavir since I have been sick so long and my viral titers so high for all virues. he shocked me since my last visit he ws so adverse to that treatment for me. Anyway I am sched for my first infusion on Monday 11/4, but I am not feeling very positive now abt doing it since u have been on for awhile and not sure how you are doing. He tells me he has many patients like me doing very well on it, getting much better....WHO ARE THESE PEOPLE. You know you can't ask him for much info and I wud luv to speak to these people and hear directly. He claims that you can get to a 7 on his scale. After being on the Valtrex 1mg 4xday since 8/31 for the EBV, I had my local CF docter do blood tests to c if my titers have changed at all, and no change at all. Please let me know if you have had any positive changes with the treatment or know of any other patients he is treating the same way who are responding well. what symptons can I expect after my first infusion. I am only concerned because I have to get on a plane and fly home. thank you
That's great news, @leeh! I wonder what made him change his mind?
I think it takes a LONG time for viral antibodies to drop. Like maybe a year or more. I wouldn't be discouraged yet with the Valtrex.
I had great progress with the cidofovir for about 3 months. I went up about two points on his scale. Unfortunately I had a great crash in August and I am still trying to pull myself out of it. But it was unrelated to the cidofovir and I continue on with my treatments.
I was slightly nauseous from the Probenecid as much as anything. I definitely felt a little pukey but nothing terrible. I also get a little hot the evening after the infusion and sometimes have trouble falling asleep and feel my heart pounding. But nothing awful, really. I actually don't notice many side effects at all anymore. If you feel pukey, you can ask them for Zofran. I think they give that out pretty frequently with the Probenecid. But truly, it's more boring to sit there for 6-7 hours than anything else.
I hope you have great success! I'm so glad you got your desired treatment...Please keep us posted.
I did my first Cidofovir infusion and it went really well. I had no side effects at all. Scares me to say that, prob start tonight. Does it get worse as you proceed w more infusions? What I understand from the nurses at Beaumont is including myself there are now 6 patients of Lerner's doing this.
I believe you and I are the only ones who travel, others are local. Lerner keeps saying he is getting great results but I wish I knew who these people could be. I would be happy to talk to anybody about this and wish they would say the same about these mystery patients; aside frm urself.
When I asked the nurse how the others are doing/do they tell you they feeling better, she side swiped the question by saying,not that she knows but no one has finished yet with all their infusions. I don't know why Lerner changed his mind about going the Cidofavir route.
It hopefully dawned on him that after my doing the Valcyte for a year in 2007 and getting worse, that I would not do it again or he says the Cidofovir covers multiple Virus, all of which I have and my CMV is so high, aside frm being in my spinal fluid. He said he does not know if it crosses the blood brain barrier (which I feel is necessary to get better), but feels it should.
It upsets me to hear what ur going through now, Lerner has not said to stop the treatment until your other issues get better? He is sure it is not caused by the Cidofavir?
Please get better, I am pulling for the both of us.
I'm so glad that your first infusion went well!
No, it doesn't typically get worse...the worst one for me was the first one (and probably mostly because I was so flipping nervous!).
I was doing really well on the cidofovir over the summer. I was a lot more active and I let myself get overexerted with activity and emotional and physical stresses. Then I started to worry. And then I fell and sprained the heck out of my ankle.
And then I got giardia from the new puppy who wouldn't let me sleep at night because she screamed for all of it! (She's perfect now...LOL)
And then I fell again on my ankle just when I was starting to feel better and sprained it even worse with black and blue almost all the way up to my calf from where I rolled it and a bloody knee and hands on the other side where I hit the asphalt.
And I've previously been diagnosed with adrenal insufficiency that was probably more likely low cortisol from HPA dysfunction that resolved after treatment, so I weaned off steroids last spring. My adrenals are probably still not up for that kind of intense stress and I should have stress dosed better and that would have helped my ankle and everything else heal more quickly. I got into a hole here as well.
I'm telling you all this detail only so you will understand why I say it was unrelated to the cidofovir...it was pretty clearly everything in my life BUT the cidofovir. Including probably a little of my own fear about getting better...and I'm working on that too. It was very scary all of a sudden for me to feel improvement and I was scared it wouldn't last. I hope I didn't sabotage myself subconsciously but I'm going to work on that too for the future.
So if I were you, I would just be hopeful and encouraged by your first treatment. I think most everyone who is able to tolerate it has gotten at least some improvement from it, even if no one has gotten a full remission.
Ema - I am glad I found you, I also see Dr. Lerner. He started out saying my hv6 was high and my ebv was low and put me on Valcyte. Then when I had some levels of toxicity with Valcyte, he put me on Valtrex. Valtrex made me have chest pains, so he put me on Famvir, which I have been on now for about 2 months.
When I questioned when I could go back on Valcyte, he said that my EBV was high, not by HV6! I since sent him an email indicating I was uncertain if his testing was done correctly, and he e-mailed me back immediately, and said he had reviewed my file and confirmed I was on the right path.
I've also asked for my files/tests so I can follow all this. .... So I have been seeing Dr. Lerner for 6 months with no improvement yet, but from what I have seen in other posts, it can up to 2 years for recovery. The reason I found your info relevant is that at my last appt in Oct he said if I felt no improvement in 3 months, he would try me on a infusion, but did not tell me what it was called. He seemed hesitant to go with the infusion, though.
Now I know what he had in mind, and that helps. Of course, you know you can't question him much. But at least I am on some treatment and I have to see this through. One thing I would recommend with any procedure, finding out the hard way, is that when you feel better---keep resting.
It's hard when you have some energy to go out, not to go, but I think if you continue to rest throughout the protocol you get better results in the end. Oh boy! This is all so crazy. Maybe I will pass you in the hall sometime at Dr. Lerners! My next appt. is the end of November. Hope you are on the mend.
So I just finished cidofovir #14. Wow, how time flies!
Unfortunately, I'm still in the midst of a crash but it is slowly improving (I think). I have been walking a lot more again outside but I'm still struggling big time with anxiety and panic attacks. This is a new fun twist for me. Usually I am too exhausted to panic so progress??
So Dr L has decided to add in Valcyte to go along with the Valtrex and the cidofovir. I've never taken Valcyte before and am a little nervous that it will make me feel worse. Plus that seems like a massive dose to take all together. I'm going to do it; I just hope it is the right decision.
Wow interesting cocktail, keep us posted.
How are u going with the adrenal dysfunction? Are u still requiring replacement doses of HC??
No, the serum testing didn't show that cortisol was a problem...but I don't know. The panic anxiety etc showed up when I started to be low cortisol 5 or so years ago too. I really wonder if I'm on the edge of adrenal insufficiency still but just not quite bad enough to be showing up on tests. I'm going to do a saliva test soon and see what that says too. It's possible that I just don't make enough cortisol for me and all of my infections too...
I haven't read all of the Lipkin thread, but are you all concerned about the lack of pathogens found? That also makes me worry that I'm trashing my body for nothing...
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