First Cidofovir Infusion Done!

[Tristen]

Hi Ema,

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 had no side effects at all while on Vistide. Just began to slowly feel better around month 3 to month 9, continued on for a full year because I had been severe for so long and maybe to ensure we put the bugs down. I went from being mostly bedbound severe and having to be driven to those early appointments, and helped into the clinic, to driving myself after 3 months. I was on it a full year and made approx 60-70% improvement, which I'm very grateful for. I had tested very high viral load of CMV with reactivated EBV. Tested negative several times for other herpes including HHV6&7. I now test negative for CMV with the EBV being back in latency. I'm with Dr P who has seen significant improvements with the drug.

 

[leeh]

I had no side effects at all while on Vistide. Just began to slowly feel better around month 3 to month 9, continued on for a full year because I had been severe for so long and maybe to ensure we put the bugs down. I went from being mostly bedbound severe and having to be driven to those early appointments, and helped into the clinic, to driving myself after 3 months. I was on it a full year and made approx 60-70% improvement, which I'm very grateful for. I had tested very high viral load of CMV with reactivated EBV. Tested negative several times for other herpes including HHV6&7. I now test negative for CMV with the EBV being back in latency. I'm with Dr P who has seen significant improvements with the drug.

Hi Tristen & Ema, ( I don't know how to get this response to both of you)

Tristen thank you for ur post abt ur experience with Dr. P & Vistide and happy to hear your doing so well for so long. What makes you feel ur at 70% vs. 90 to 100%? I do not expect 100% nor did Lerner ever say so, but curious what still sets you back or not ur true normal. I wish there were one forum of all the people who did IV infusion of Vistide or Cidofavir. Ema I hope ur doing better. Please let us know.

I have completed my Third IV and I am really not having much to complain about, even with the travel.

I do find for about a week after my infusion, I have much more difficulty going to sleep. I have always used .5 to 1mg klonapin to sleep and it is not working as well, since on the Cido, for that period of time. Aside from the sleep & slight nausea the evening after infusion, this is not a big deal (at least not yet). I think??? it has to do with the amount of Hydration he orders to be done 2 hours before, more while the drug administered for 3 hours, than another by itself again for 1.5 hours (I think total 2.5 liters hydration). Yes, you feel like you can float or balloon after that, so that is not so fun, but I have experienced much worse... like a spinal tap leak. He changed me frm Valtrex 1 mg 4x/day to Famvir same dosing. He changed since he said the Famvir is easier on ur Kidneys and tht is one of the big concerns with this drug.
After my second infusion and on Valtrex for 3 months, he did his usual labs but added the CMV, EBV, HHV6. All my viral ( EBV, HHV6, CMV, HSV1simplex) off the rickter scale to start, also MPn. I mentioned I even have CMV in my spinal fluid.
Both my CMV & EBV have decreased since on these drugs but my HHV6 increased. That scares me abt the increase in the HHV6 since when I was on Valcyte protocol for one year, both my EBV & HHV6 skyrocketed, no one cud explain why, even after I went off the Valcyte (and believe I got worse since the Valcyte), it took so many months for those titers to go down to my standard abnormal High levels. I will ask Dr. Lerner abt this next week after my 4th infusion. So that is where I stand so far. I get different/varied answers from the nurses in the short stay unit of the hospital wen I ask how his other patients are doing and the same with Dr. Lerner's two nurses. Dr. Lerner keeps saying he is very happy with the results, better than he expected...who knows.

 

[Ema]

@leeh, the best way to alert us to the post is to put the "@" symbol in front of our username so it will alert us automatically. You can see how I did this in this post with your username.

I'm so happy that things are going well for you with the infusions. They really are mostly just boring and not an ordeal at all.

I am doing better now finally. I actually went out Christmas shopping for about 3 hours this afternoon. I was beat on the way home but I feel fine again now. So hopefully things are on the upswing again.

Lerner added Valcyte to my Valtrex and cidofovir cocktail last time I was there so hopefully my body is coping with the onslaught.

As far as the nurses at the short stay unit, you have to consider that they don't see the patients every time. And a solid two thirds either don't respond or can't tolerate the med. So that makes the 1/3 that do well on cidofovir a smallish population that would be difficult to track in a busy unit. Plus when they start feeling well, they probably stop going for infusions!

I think Lerner's nurses also have to be careful about what they say. I imagine he is very particular about things like that too.

I hope you continue to improve!

 

[leeh]

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 Emma, I just read this. I posted an update on my Cidofavir infusions at the end of this Thread somewhere. I do not know how to post properly or make sure they get to the correct people. If you get a chance, read it. I am amazed he put you on Valcyte too. I did Valcyte the entire year 2007, the last two months my doctor even went up to a higher dose than what ws being done by Montoya & others. I wrote before that I had no luck with it and feel it made me get even worse mentally & physically, never had a day that I felt half way descent again, as I had prior.

Does not mean that will happen to you. I feel you will go thru more cycles of ups nd downs w Valcyte. I felt very fluish the first few weeks, then got some crazy wonderful/almost high, burst of energy for about 2 weeks, then got anxiety like never before, my teeth hurt, my feet hurt, cud not sleep at all and depression. All I cud do is lay down and freak out about everything. That slowly dissipated. I started to feel better, even started to wake up early on my own and did not feel exhausted around month 5/6 both mentally & physically. I really thought I was recovering, and then all of a sudden at month 7, all the CFS scary red lights/monsters started again. I just got worse & worse (aside frm my EBV & HHV6 titers skyrocketing).

Yes, I upped my anti when I started to feel better, but if you cannot do more and handle it, I do not consider that better.
Do you know what is going on w ur Viral Titers (going up/down/same)? What ws his thinking to add Valcyte?

It will be hard for you on all these drugs to figure out side effects. I do know many others that experienced the same varied roller coaster effects wen on valcyte. So if you experience this stuff, prob the Valcyte. I also know many that could not handle it and went off of it quickly. Wish you the best.

 

[Tristen]

Hi Leeh, it's difficult to measure my overall improvements in percentages because of having so many symptoms with each improving to different degrees. So, I just try to sum it all up.
-My most significant improvement was with the Orthostatic Intolerance with POTS and NMH ......100% improvement. I no longer have those debilitating symptoms.....gone. This was my most severe and disabling symptom prior to tx.
-Next best was with the cognitive symptoms, brain fog, focus, concentration, memory all improved by like 70%.
-Next is the extreme fatigue/exhaustion.....improved 50%.
-Sleep problems, which for me was getting at best 5 hours per night, improved to getting 6.5 hours of sleep= 30% improvement.
-PEM which was severe for me before tx, was the symptom where I got the least improvement with maybe 10%. Dr P told me that this would be the last symptom to improve over time in my recovery. He was right. Since tx 3 years ago, my PEM has improved maybe 50%.

-Labwork showed significant improvements mostly in immune function, but endocrine as well. Some values, that had been grossly abnormal, returned to normal, with the rest being just sub-clinical; close to normal.

-VO2 max. improved from severely impaired to just inside normal. Surely this has improved even more the last 3 years since tx.....as demonstrated by the improved PEM.

-Animation. Prior to tx, I looked and felt like the undead. I was pale/ashen colored, my eyes like back holes in the sky. I looked as though I had end stage terminal cancer. After tx, I had color, was smiling, laughing, interacting.

-Dreams. I had no dreams at all (no exaggeration) for many years. It was like I just went off into a dark abyss during sleep. After tx, I was once again dreaming. Not a disabling symptom, but it meant a lot to me, and was surely indicative of neurological improvements.

Thank you for saying that your happy that I'm doing so well, for so long. Made me smile.

 

[Stephen12]

Hi Ema,

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.

@Ema
Thank you for your thread on your cidofovir treatment. It has been very informative. I am considering doing cidofovir and could travel to Beaumont Hospital for the infusions.

I was wondering:
Do you/will you get the infusions every two weeks indefinitely, or for a specified number of months?
Do you have a contact name (a nurse that you work with) at Beaumont I could speak with about doing the cidofovir infusions there?

Good luck w/ your treatment.
Steve

 

[apogan]

@Ema
Not sure I did this right (above). It was a wonderful surprise to have met you at 'infusion central' aka Beaumont. Thanks for looking me up. I did not love this procedure, but I am a needle phob, so... My arm hurt the whole time, I think the nurse got it in screwy. No side effects though. Did your arm hurt during? See you on the 30th? Hope you are well.

 

[Ema]

@Ema
Thank you for your thread on your cidofovir treatment. It has been very informative. I am considering doing cidofovir and could travel to Beaumont Hospital for the infusions.

I was wondering:
Do you/will you get the infusions every two weeks indefinitely, or for a specified number of months?
Do you have a contact name (a nurse that you work with) at Beaumont I could speak with about doing the cidofovir infusions there?

Good luck w/ your treatment.
Steve

Hi Steve -

Thanks for the well wishes!

I am getting the infusions every two weeks. I think the treatment is for a minimum of three months. At this point, Dr L seems to be carrying on indefinitely so long as I keep improving and my labs don't show any signs of toxicity.

I would say though that most people seem to go from 6-9 months with L provided that they tolerate the first infusion well.

I usually have a different nurse every time at Beaumont and they are all nice. But they don't know much about the treatment unfortunately...they just insert the IV and hang the prescribed meds for the most part.

Are you thinking about seeing Dr L?

Ema

 

[Ema]

@Ema
Not sure I did this right (above). It was a wonderful surprise to have met you at 'infusion central' aka Beaumont. Thanks for looking me up. I did not love this procedure, but I am a needle phob, so... My arm hurt the whole time, I think the nurse got it in screwy. No side effects though. Did your arm hurt during? See you on the 30th? Hope you are well.

@apogan,

It was nice to meet you too!

I hope your infusion went smoothly and your arm is feeling better. I think sometimes they get it closer to a nerve than others. Most times I can hardly feel the IV but other times it feels sort of irritated the whole time. Usually it gets better pretty quickly once it comes out though.

I don't know why I can't seem to get my schedule straight at ALL! I will be in IN for the next one on the 30th and then back at Beaumont on 1/13. Will I see you then?

Hope you have a great holiday!

Ema

 

[apogan]

Ema. I'll be there on the 13th with bells on! See you then. Have a great holiday.

 

[Stephen12]

Hi Steve -

Thanks for the well wishes!

I am getting the infusions every two weeks. I think the treatment is for a minimum of three months. At this point, Dr L seems to be carrying on indefinitely so long as I keep improving and my labs don't show any signs of toxicity.

I would say though that most people seem to go from 6-9 months with L provided that they tolerate the first infusion well.

I usually have a different nurse every time at Beaumont and they are all nice. But they don't know much about the treatment unfortunately...they just insert the IV and hang the prescribed meds for the most part.

Are you thinking about seeing Dr L?

Ema

Ema,
I've seen Dr. Lerner in the past. I now see a doc in California that could facilitate the infusions. It sounds like there's a fair risk of complications for some people (even though folks like yourself have had a smooth experience w/ cidofovir).

Do you know which department at Beaumont you get your infusions?

A Merry Christmas and Happy New Year to all and hope the new year brings better health and more treatment progress.

 

[Ema]

Ema,
I've seen Dr. Lerner in the past. I now see a doc in California that could facilitate the infusions. It sounds like there's a fair risk of complications for some people (even though folks like yourself have had a smooth experience w/ cidofovir).

Do you know which department at Beaumont you get your infusions?

A Merry Christmas and Happy New Year to all and hope the new year brings better health and more treatment progress.

It's the Medical Short Stay unit.

Good luck!

 

[leeh]

Hi Leeh, it's difficult to measure my overall improvements in percentages because of having so many symptoms with each improving to different degrees. So, I just try to sum it all up.
-My most significant improvement was with the Orthostatic Intolerance with POTS and NMH ......100% improvement. I no longer have those debilitating symptoms.....gone. This was my most severe and disabling symptom prior to tx.
-Next best was with the cognitive symptoms, brain fog, focus, concentration, memory all improved by like 70%.
-Next is the extreme fatigue/exhaustion.....improved 50%.
-Sleep problems, which for me was getting at best 5 hours per night, improved to getting 6.5 hours of sleep= 30% improvement.
-PEM which was severe for me before tx, was the symptom where I got the least improvement with maybe 10%. Dr P told me that this would be the last symptom to improve over time in my recovery. He was right. Since tx 3 years ago, my PEM has improved maybe 50%.

-Labwork showed significant improvements mostly in immune function, but endocrine as well. Some values, that had been grossly abnormal, returned to normal, with the rest being just sub-clinical; close to normal.

-VO2 max. improved from severely impaired to just inside normal. Surely this has improved even more the last 3 years since tx.....as demonstrated by the improved PEM.

-Animation. Prior to tx, I looked and felt like the undead. I was pale/ashen colored, my eyes like back holes in the sky. I looked as though I had end stage terminal cancer. After tx, I had color, was smiling, laughing, interacting.

-Dreams. I had no dreams at all (no exaggeration) for many years. It was like I just went off into a dark abyss during sleep. After tx, I was once again dreaming. Not a disabling symptom, but it meant a lot to me, and was surely indicative of neurological improvements.

Thank you for saying that your happy that I'm doing so well, for so long. Made me smile.

 

[leeh]

I want to thank u Tristen for ur explanation of progress since on Vist/Cido. I appreciate your candid response.

I completed my 5th infusion on 12/30 nd will do 6th on 1/13. I have nooo problems w the infusions, no side effects at all, but I have also not seen 1 ounce of improvement. A slight improvement for me wud just to be able to get up in the morning after 10 to 12 hours good sleep (which I get) and feel somewhat non lethargic and up to talking a shower or not sheer exhaustion after just writing this response. I think? Dr. Lerner is also surprised. I am getting pretty upset about it, and I just feel (espec in my case where the CMV is in my spinal fluid), that unless a drug can penetrate the blood brain barrier (which Cidofavir has not been proven to do), it will not work effectively. I have asked Dr. Lerner and he does not directly dispute my view, just tells me to stay w it and feels strongly tht it will help. I think he is just so happy I am having no side effects at all or complaints abt the IV. He said a few had to go off due to eye problems, which can occur, it starts w bad pain. I feel, and espec in my situation tht this illness is a systemic CNS disease. In addition, why I have systemic inflammation in my entire body, tht effected my, brain w foci/lesions, DJD/DDD neck/spine, PsA hips and now shoulders and none of the normal type drugs tht prevent or calm down the inflammation help. This is just my theory that no one has been able to dispute or negate of all the MD's or Surgeons I see, espec since none of these conditions run in my family nor is my body type a contributing problem.

If I don't c any improvement by end of month 4 (8 IV's), I am sure I will stop unless someone can convince me otherwise. Not because of side effects....because of nothing.


Tristen, how come other Dr.Peterson patients who have done the IV (Vist or Cido) and got better do not speak out, that he claims got better in one of his reports. Do you know any of these patients?

Did you go back to a somewhat normal life style? Do you work, exercise, socialize? Can you perform several tasks/functions in a day without relapse or downward spiral? If your PEM only improved 50%, I wud think this effects/impacts everything else you can or cannot do? I hope you don't mind all my questions.


How are you doing Ema? What is Lerner saying to you abt ur status (better/same/worse) w the IV's?

 

[Tristen]

Hi Leeh, I would give it at least 6 months before making a decision about stopping. So many variables between all of us affecting length of time before seeing treatment success. What works for one, maybe not the next. Good sign that Dr Lerner thinks it's going to help you.

The OI was my most debilitating symptom, and to have that gone is where I come up with most of my rating level of recovery. PEM is the symptom where I see the least recovery, and that does prevent me from being able to work. I basically went from 90% bed bound, to maybe 50% homebound. I'm able to get out and do more activities such as shopping, socializing, etc......but I still have to be very careful with pacing myself, or I will crash. But the crashes are much less severe and take much less time to recover from. So no, I'm not back to a "normal" life style......just much better.

The people I met at Dr P's who had made progress on Vistide, are not on PR.....anyhow, I don't know them if they are. I'm not in touch with any of those people.

Also, I thought Vistide did cross the BBB......but I didn't delve into that much.

 

[Ema]

So I finished #18...and that is all for cidofovir.

And I can't help but feel like I failed because I'm not cured.

I'm not sorry that I tried it, and I do think I did get some improvement from it but it was very expensive, invasive with all the IVs and blood work every 2 weeks and time/travel intensive.

I'm pretty bummed, honestly but relieved too that I can have a break now for a bit from it all.

 

[Sushi]

So I finished #18...and that is all for cidofovir.

And I can't help but feel like I failed because I'm not cured.

I'm not sorry that I tried it, and I do think I did get some improvement from it but it was very expensive, invasive with all the IVs and blood work every 2 weeks and time/travel intensive.

I'm pretty bummed, honestly but relieved too that I can have a break now for a bit from it all.

What does Lerner say? Is it possible the the effects will continue after stopping? Does he think the treatment was helpful?

Understand the bummed part--such a major investment of time, energy, money and hope!

Sushi

 

[heapsreal]

@Ema are u still on valcyte or another antiviral??

 

[Hip]

Yea Ema, I estimate 60-70% improvement on that tx. Many do even better than that.

It eliminated my OI completely. We still get a good laugh describing what I looked like when I first crawled into his office. I looked very beat up, very sick unable to stay upright more than a few minutes. Could not drive. After 6 months on the tx, I was upright and driving myself the 8 hours to his office. I finished that Tx end of 2009 and have not relapsed.

Are you referring to cidofovir infusions eliminating your OI completely, @Tristen?

Do you know if it is common for cidofovir or other antivirals to improve or eliminate OI?

What type of orthostatic intolerance (OI) did you have, by the way? POTS? Orthostatic hypotension?

 

[Ema]

What does Lerner say? Is it possible the the effects will continue after stopping? Does he think the treatment was helpful?

Understand the bummed part--such a major investment of time, energy, money and hope!

Sushi

Lerner didn't really say much. My impression was that he also felt that the risks were one thing if the benefit was also there, but there was no point in taking those risks without the benefit.

He seemed to think that the treatment was more helpful than I did, possibly. I moved up a whole point on his energy index score! But unfortunately, that doesn't really change my life in any meaningful way. He did acknowledge that it was not nearly *enough* improvement though.

@heapsreal, I remain on Valcyte and Valtrex for the foreseeable future and hope for some continued improvement. I also just took 25 mg of modafinil! Cross your fingers...

@Hip, the antivirals definitely influenced my OI as well. I was on Florinef when I started cidofovir and I was able to successfully wean that med without a return of my OI until my crash in August. At that point, the OI was back again until I started Valcyte and then it went away again for the most part.

I'm still bummed this morning a little bit though. I'll just have to try to keep focusing on the relieved part...