Discussion in 'Antivirals, Antibiotics and Immune Modulators' started by heapsreal, Jun 27, 2011.
I have been off valcyte for over a week now, again. It just makes me feel like crap as well as really depressed. I have only done 2 short courses of a few weeks of valcyte, its hard to really confirm if its helping but i think i do feel better after using valcyte then before i used it, very subtle improvement. But im going to put it on the back burner for awhile and talk more about it with my doc. Still using famvir though and will continue for awhile longer.
I have started a few treatments altogether that have helped me in the past, cycloferon and very low doses of pregnenolone.
Cyclo has helped me in the past improve my nk function.
I have tested low in adrenal hormones dhea and cortisol, pregnenolone can help with cortisol and other hormones. Pregnenolone has helped me with inflammation and energy in the past but greatly over stimulated me way too much even with low doses. I think i have overcome my problems with preg by slowly upping my dhea first and in very small amounts. Im now at 20mg a day of oral dhea, preg i use a transdremal cream which is 100mg per ml and i only just dab my finger in the jar which i estimate is 5mg or less per dose, but i can feel it helping.
Symptom wise i feel like i have been hanging on by the skin of my teeth to working fulltime, but the last 6 months i have had to overcome chronic sinus issue and then the valcyte really knocked me. I have just come off 3 weeks holidays and survived my first week back at work ok which is a change. Its hard to tell with these new changes in my treatments if its helping me or its stopping the valcyte, but feeling abit better i will take. Its really hard to judge any sort of progress as cfs is so up and down. I think we really need to give it 3-6 months and turn around and see where we are at, if i do that for the last 6 months it doesnt look good. I will blame the sinuses for most of that.
This year is my decade year with cfs/me. i think the antivirals have kept me able to keep working but overall i cant say that some symptoms are worse or better. I think the longer i have cfs the more my symptoms have changed more then anything. That real foggy brain was very yuk the first few years, now i still have it and it doesnt seem as bad but then again sometimes i think we sort of get use to living with it, but the fogg has its moments where it is unbearable. One thing i definately know is worse is my memory, especially names even people i have know for quite awhile but maybe dont cross paths as often as others. The other memory problems i have is shortly after being told something, its in one ear and out the other, unless im really concentrating. SO having to concentrate for long periods can destroy me. I also think i get through work as it can be adrenaline charged for short periods and then after that the memory/brain fog kick in strong, the lights are on but know one is home type thing. I use to be able to do some exercise, mainly weight training and recover ok, but have never really been able to do any type of cardio where breathing and heart rate increase for long periods since having cfs, even though i was quite fit prior. I have attempted a few very short light weight sessions and expect to feel stiff the next few days but not only do i get stiff, the PEM really knocks me, almost like i have no recovery ability. Sleep is now just about non existant but is managed ok with meds but do go through some bumpy periods with sleep. My medication dosages havent changed since almost the start of my cfs.
Overall, if i can just bum around the house, watch some tv and internet time, lie down every so often to rest(once i could nap, now i never nap or cant) my symptoms are very tolerable, although boredom kicks in. Its a strange feeling to have no energy but be able to rest but feel completely bored out of my brains, only another cfser would understand. But when im active i feel like crap, i come home from work, my head pounds. At the end of the working week the first day im definately a zombie, hopefully after that the next couple of days im just dealing with boredom. When things around the house need to be done like mowing the lawn, which usually gets to a good height after continually putting it off, this will knock the stuffing out of me. Even visiting people for long periods does me in has its tiring having to try and be social, so this is avoided alot. SO my days off are planned on recovering and being bored so i can go back to work and be beaten up, sort of like the movie ground hog day, lol.
So thats my little catch up wth where i am at. On dr lerners energy index score i think my days vary between a 2 and a 7, very ocassionally an 8, but averaging a 5-6. Hows that for rating my cfs, clear as mud!! http://www.treatmentcenterforcfs.com/energy_index_score/index.html
I think there are other poor buggers alot worse then me and others functioning better, some function at a consistant level and others like me are up and down like a yoyo. Maybe the people who are still working, function more like yoyo's. If i was a millionaire and didnt have to work i would be consistantly rating higher. So i feel sorry for the poor buggers who cant work and are rating at the lower end.
I hope everyone starts to feel better soon. Come on Norway!!
Do you believe your recent sinus problems made your symptoms worse, or were the sinuses just a pain in the butt to have? I've got the same constant problem and antibiotics clear them for a couple days then they run wild again. I think it happens simply because our immune system is off battling other infections/ viruses, etc.
Hi Grape funk, im with you, i think for me its my immune system thats off and pick up the sinus stuff. I have had cfs for 10 yrs and only last year started having sinus issues. I find it really hard to tell the difference between sinus problems and worsening cfs until symptoms of sinuses get really bad. I dont get a runny nose, i get post nasal drip and then when this stopps is when pressure starts to build in sinuses and i get really bad headaches and my face actually aches, so the infection is in the frontal sinuses above the eye brows. I had to stay on a couple of abx for about 6 weeks to clear it but it returned after a few weeks. Noticing it quickly helped as 2 weeks of doxy cleared it, so far no dramas with it. Im hoping that starting the cycloferon will help boost my immune system and fight off any sinuses issues that may arise as well as any reactivation of cmv/ebv. I think long term these infections etc cause adrenal fatigue which is why im trying to get my adrenal hormones back into normal range.
Heaps my sinus problems cleared up 90% by cutting out most of the food stuff I tested intolerant too, before then I can remember sitting at the kitchen table head over a bowl of steaming water with Vick in feeling like @@@@ so desperate for something to help. Don't know ehether it would be a consideration for you. I had to cut out wheat, dairy, eggs, sugar, casein, so basically - not a lot left!! But I definitely improved within 2 weeks of cutting the right stuff out.
On the subject of memory mine has gone noticeablly worse since taking the Zopiclone, so I really need to come off it, is there nothing herbal that will help you sleep so you can abandon the drugs?
I sympathise with your situation, how you struggle on with working is an immense achievement and I only have the utmost admiration and respect for you.
Oh if only you could take the time you needed to rest and take things a little easier - but you're right what we really still need is a cure. I'm a lot further down the scale from you but I'm also a lot older which I think does impact on your ability to fight this illness, but there again, I had a long working full active life so swings and roundabouts I guess. You just keep looking after you.
Hi MAryb, i follow a low carb diet so very minimal wheat and sugar, i eat eggs but not alot. Sinuses have been good since using abx for long enough to get rid of it, so i think i have sorted for now, we will see how i go coming into winter here in australia, but have abx on hand if i need them. I have tried everything for sleep and i do add natural stuff sometimes but most things i get a tolerence to. im hoping that improving adrenal hormones will help improve sleep, but sorting my adrenals is going to take time i think. touch wood, of late my sleep has been more consistant although still on meds. If everything starts to improve like energy, stamina and recovery, then i will look at tapering off meds but at the moment i think trying to stop sleep meds would make me alot worse.
Maryb , how do u know the zopiclone is worsening your memory? At the moment i find if i dont use sleep meds im dammed if i do and dammed if i dont. I could probably abandon sleep meds if i didnt have to work and fit into normal society. I just wouldnt be able to work if i had to start work at say 8am and only went to sleep at say 5 am, this has happened to me occassionally but would happen alot more without zopiclone. This is usually when i take sick days. Pregnenolone can help with inflammation and dhea being within normal range im hoping can lower interleukin 6 which is an inflammatory cytokine know to cause sleep problems. Well thats the theory im working on, time will tell.
Heaps re Zopiclone - I was okay memory wise for a few years, even with brain fog I didn't have the problems I have now, I look at celebrities on tv and can't remember their names, People like you say who I don't come across often, like ex work colleagues, it just won't come, I always make a point of focusing on the memory and if I really can't will look it up, I won't be beaten on it but it does worry me, this has been getting steadily worse over the past 12months, I've been on Z for about 3years now, I'm positive its related to this drug.
I understand completely why you can't have a period of worsening sleep, work has to be your priority , I know the one night I forgot to take my pill I was still awake at 3.30am and only realised a short time later I hadn't taken it, I battled on and had a rotten day just doing nothing but waiting for evening to come so i could get to bed. I have that luxury, you don't.
Re the diet, I think the dairy was the biggest culprit with my sinuses but we're all very different, also though if you are intolerant even a small amount of that food would make you react. Sometimes the reactions are very small and you can't connect them to the food without a great deal of detective work. Do you work with a nutritionist?
LOL mary, exactly what u say with names is my problem. Sometimes if i can remember their last name their first name will come to me or if they are married etc, sometime if i can recall their partner and say the partners name in my head then i can recall the other persons name. Its strange because their name is their in my head but its just a process of trying to get it out. Does that sound like you?? I cant really explain whats causing it, but know its common with cfsers, i think its apart of the neurological problems with cfs. I also think sleep is apart of the neurological problems we have as well. My doc has said that the hypothalamus is damaged in alot of cfsers and probably worsens over time, the hypothalamus controls many functions in the body including sleep.
I dont work with a nutrionist, just found what works for me through trial and error. Also pre cfs i was into alot of weight training and low carb diets are popular to lose weight. Initially with cfs i put on alot of weight and just through low carb eating i have lost most of this weight but still have abit to go but without being able to exercise, losing this last bit is almost impossible. When they find a cure i will be able to exercise the rest off??????
Heapo / Mary B
Do you ever take inosine as a substitute to cycloferon ? Iv'e heard it's not nearly as expensive and although a supplement, can have potent properties similar to immunovir. I believe KdeM stated this.
I have tried inosine a few times, the first time it really helped but since then i have never been able to repeat this. I havent tried immunovir but my compounding chemist is trying to source some for me, but it depends on the price he gets. Im currently back on cyclo.
Wow heaps, I kept wanting to grab a quote that I could relate to and respond but after I read everything your wrote, WOW could I relate to ALL of it.
The boredom!! A lady was telling me about her 80 year old mom dying of Cancer and how she had always been so vital. In the end she was never in a lot of pain but lacked energy. Her daughter/my client was saying that it was hard to watch her mom going stir crazy, unable to do all she used to enjoy. I did feel bad for the woman but I thought "That is me every day and has been me for 20 years now!!!" It is absolutely maddening.
Regarding anti virals, I feel a lot like you do. Im not sure if they really helped but sometimes I notice that maybe some things are better. This illness is such a roller coaster it is often times hard to tell what is making us better or worse...and what is simply the course of this ridiculous illness.
I have been working a lot these last few weeks and doing very well. I would say I am at about a 7 for most of the day. I have to talk with clients all day and when I speak some days I am amazed at the "BIG" words that are right there for me to use and how everything I say just flows. I actually sound intelligent. The very next day I cant even recall the simplest words that I use daily. The good days with the energy and the cognitive abilities are sure wonderful though. I also believe that when I can, and at the current time I can, get out and work and get my mind focused else where, I do SO MUCH better.
With all that said, I do take Famvir daily. I feel I am worse off when I stop it, than before I started it and that is the only reason I stay on it. I also take antibiotics for co-infections. I dont like being on so many drugs but am afraid they are keeping me just barely going. I also believe adding Resveratrol has helped me. I take a fairly good size dose and a good brand. I know it doesnt sound like it would do much, but Im going through a decent time and Im afraid to drop any of my current regimen. The skin care company I carry has oddly come out with a sublingual form of sweet wormwood. It is a treatment for hyperpigmented skin as it is treating the inflammation from within and working on the immune system that is attacking the skin. I have not tried Arteseunate or Artemisinin yet so I might try adding this form into my routine and see what happens.
Oh, and as far as sinus issues. I had a long bout out of the blue a couple of years back and went through all kinds of antibiotics with no success. It took a two week course of Diflucan to get it under control. I also learned that the Netti pot nearly drowned me but never did a thing for my infection. My doc believes most sinus infections are fungal. And, I believe any time we are fighting something else it distracts our immune system and our virus' and other bugs have a field day!!
Good luck to you Heaps. I enjoy your posts. It is nice to be able to relate to others!!
^ This. I think heaps and m1she11e are the two on this forum with the most common symptoms and reactions to things as I do. Or perhaps they just explain things in a way that relates.
m1sh11e, i just got back from florida for 10 days and forgot to call. Well, my kid caught pink eye and an ear infection some how like half way through it so that ended most plans.
What I did notice is that, despite keeping the same dosage and medications, I slowly declined each day energy wise. The second, and i mean the second, I walked off the plane and into the las vegas airport I immediately noticed the improvement. Humidity or allergies is the only thing I can think of. I was born and raised there, you'd think i'd be used to it.
btw it was pretty hot down there for end feb, early march huh? Normally means a nasty summer.
Heat has been knocking me to, here in the land of Oz its just starting to come into autumn, feeling better because of this plus a few other things i have been tinkering with.
Famvir is good for treating genital herpes and shingles, but it has very low activity against HHV-6, EBV, and CMV. Neuroimmune patients tend to have multiple herpes virus infections. Famvir needs to be used at very high doses to affect the viruses involved in the disease, but it is actually better than valcyte and cidofovir at penetrating into the CNS. I take 2,000 mgs (4 tablets) four times a day, a total of 8 grams a day.
Could you or would you please say a little more about this satoshikasumi
How long is this dose for?
Are you being monitored or working with a consultant?
Are the any issue with toxicity or kidney damage?
Do you notice any side effects?
I ask purely for personal reasons.
In the UK it is outlawed by the Not-so-nice-guidelines for use of ME/CFS as I have encountered.
After being extremely allergic to Aciclovir, I was given Famvir (famciclovir) for viral blisters that developed shortly after I was hospitalised for surgery, following very severe root canal infection that tracked up behind my nose and left eye.
I was very scared to take it because of my reaction to Aciclovir. To my amazement it cleared not only the blisters but also my horrible head sensations ceased and other symptoms and I became more mobile. I thought it was a fluke until I happened again some six weeks later. As the effects wore off, I gradually reverted back to being bedbound. The male doctors at my practice thought I was barking mad and refused to prescribe any without the oral, nasal or eye blisters. Finally a lady GP prescribed me some and although this time it took longer, I improved again. Unfortunately she was then overruled and I wasnt given anymore from the doctors.
In my experience.....If you take antivirals to treat ME/CFS in the UK it is totally unmonitored, I have been unable to find any Dr Private or otherwise to help me. My OI and Pots are so very bad that I doubt I could fly to the states but that would be my dream as I have experienced firsthand the difference they make to me. I have no-one to ask and would love to be able to take advice from Lerner, Peterson or Montoya; there is just no-one here who I know will even discuss this.
Any input from anyone would be greatly appreciated,
Hey Josh, thanks for keeping pink eye and ear infections away from me.... It would have been fun to sit and talk and laugh about this BS disease again!!!
I do think that humidity and maybe mold hit me hard. My horrible set back a few years back was environmental for sure. I guess Florida is not the place for you and parts of Florida (wetlands) was not the place for me. Still looking to build me a bubble!!
Wow satoshikasumi, that is a heavy dose of Famvir! There is controversy though over whether it kills HHV6. I talked about it some place else on here. Basically, some believe it is effective, was just never approved way back when as effective for HHV6. Who knows?? I was taking 500 mg, 3 times a day and my insurance was fighting me all the way. My hair was falling out too. 8 grams a day would never be covered by my insurance and I would be bald if it was. Sheesh! Interested in seeing how that goes for you!!
250mg twice a day of famvir has been enough to help me lower cmv viral load, tried more but didnt notice much of a difference with larger doses. I think there is enough people from here to show that famvir helpes with more then its approved uses, helps with ebv, cmv, hhv6.
I plan to take Famvir up to a year; this is under the supervision of a doctor. If I am not responding we may raise the dose or switch to a more toxic drug. All antivirals stress the kidneys so it is important to drink a ton of water and get labs done from time to time. With this drug it's once a month labs, with the stronger antivirals you have to be tested weekly.
As far as it being "outlawed" for ME/CFS I am not from the UK and cannot give advice about your system. But something to think about- find a doctor who is willing to change your diagnosis. If your diagnosis is common variable immune deficiency and unspecified viral disease of CNS, you can get these things covered, but not if it's called "chronic fatigue syndrome".
I'm not promising you could qualify for other diagnoses, but it is possible that if you had your nk cell function tested it would be low, you might have an IGG subclass deficiency, and you might have a positive PCR for some kind of herpesvirus if you had the panel done. My point is, there are other diagnostic labels that DON'T EXCLUDE you from having CFS but they suggest specific treatment.
The key point is that the alternate labels are given based on lab results + your symptoms, whereas CFS is based on your symptoms and ruling out the exclusionary conditions.
Two more points: the Montoya/Valcyte and Dr. Lerner's studies suggest that antivirals take about a year to work for most people. With Ampligen the best results are seen at 1-2 years. Even with rituxan the average response took 6 months in the Norwegian study.
I have not had any side effects with 8gm famvir so far.
I ran across CVID on Wikipedia while looking at something else. Wikipedia is hardly a top-notch resource, but it was still interesting to see how much the description of CVID there sounded like ME/CFS. I wonder why more of us have not been diagnosed with CVID. It would certainly make it easier to get treatment.
You can also try a Google Site Search
Separate names with a comma.