Discussion in 'Antivirals, Antibiotics and Immune Modulators' started by Live And Let Die, Apr 1, 2011.
Stressful/important/long conversations are not quite as draining as they once were.
So your getting along with the mrs better??lol
Go ahead and tell your jokes, Mr. Joke Maker. . . lol
Get one!! I need my laugh for the day! Thanks
They can say all they want to about XMRV not being associated withe ME/CFS, but AV's sure seem to make adifference most of the time!
Two interesting things about my sleep have changed since adding Klonopin/Flexirel to the regiment. First, I have begun to dream again, like every night. (does this mean I'm getting to a deeper sleep?). I haven't had a dream in over 10 years. They are normal dreams too, nothing wild or vivid, just dreams. Second, I am waking up at night, only for a brief moment to turn over/change positions, I hardley even think about it when it's happening. Waking up in the middle of sleep has never been a problem with me before.
Still taking Famvir 500mgs 3x a day. Sometimes its 2x a day because I forget to take the last one before I go to bed. I'm at about 8 weeks on it with insidious improvements and frustrating setbacks. It will be nice if I can continue for 6 months to really get a good solid trial in.
sounds good. if your waking up feeling refreshed then sleep is improving.
Its been about a month since I have updated, well, exactly a month.
Still on Famvir 500mgs 3x/day and the improvements come at a snails pace but in looking back they are there. Klonopin and Flexeril are helping symptoms greatly. I have lost 20 pounds, down from 227 to 207 since I'm simply not overeating anymore.
I'm coming up on 3 months on famvir and crashes are absolutely no where near as severe as they were prior. Looking back I recover much much quicker from overexertion and can now "feel it coming" and am able to step back and make the appropriate adjustments. That being said, I can do a LOT more than I could in the past. My productivity has increaded by multiples. It is now that I am finally look back and see how sick I was and how sick I still am. (The addition of klonopin and flexeril does have something to do with this).
I've also used Histame with some success. I do not feel as heavy or lethargic now after I eat. I have never taken a food allergy test and don't have the coordination to do the elimination diet.
Another factor is my choice to stop, yes stop, my multivitamin. I feel better when I don't take it plain and simple. I also don't get insatiably hungry anymore after cutting it out.
Current medication scheduele is as follows.
.12-.25 mg klonopin
10mg atenetol (not spelled right but its blood pressure medication)
6 hours later,
Take 3rd Famvir 6 hours after the 2nd.
I'm also taking 1 pill of Histame before every meal. When I can afford a box, I buy one, take it and just wait until I can afford another. The average price is 20 bucks a box which would last 10 days, so another $60 a month is considerable on top of my other meds. It would be ideal to consistently use histame as its doing something. I noticed the difference after finishing the first box and eating without it. Just seems to make digestion better?
Next on the list is trial of LDN. I will start at 2.5 mgs during the morning and move up to whatever the optimal dose is, I think its 4.5mgs. It seems to be best taken at night but I will give myself some time to get used to it before switching to nights. Flexeril allows me to fall asleep in 15 minutes TOPS and I'm not about to give that up just yet. I've got about 10 weeks worth of LDN so within that time I'll be able to know for sure if something is going on.
SO happy to hear you are improving!! Any improvement is good in regards to this crazy illness, even at a snails pace!!
What do the flexeril and klonopin do for you in terms of specific symptom relief (besides the label briefing)? And are they better used together ?
Klonopin helps the overstimulation (sensitivity to sound light, ect). It takes the "wired" out of the "tired but wired" feeling I have had most nights. I'm no doctor but for some reason our central nervous system is just unable to deal with external stimulus.
Flexeril before bed takes away the tension and pain in my muscles and allows me to relax and go to sleep. I also believe it is helping the quality of my sleep. I toss and turn a lot when I sleep, flexeril makes it so that I don't as much.
They are both very strong (at least for me when I first started taking them). They are also at the very least habituating, if not addictive. I'm sure dosage will (should) be different for age, sex, weight, ect...
I'd also like to add that I am not promoting use of them, however it has increased my functionality and quality of sleep and life. I don't think you should take them together. I normally give the klonopin a few hours before I take a flexeril at bedtime.
If you or anyone else decides to go this route, just be prepared for the fact that you will become at LEAST dependant on the medication. It isn't curing anything, they are both band aids of sorts, so is histame I imagine. But hell, I've been bleeding for a long time.
I'm at the point now where I realize that quality of life is far, far greater than quantity. I'm hoping that the LDN will help with mental clarity and muscle/joint pain after doing physical activities. Those are now my top two symptoms and neither are as bad as they were.
There was a day when I could only be on my feet for a small amount of time before I had to sit down for at least an hour. Yesterday, I washed and detailed my car outside, took 3 hours (it's 107 degrees in vegas right now), plus about 3 more hours of getting stuff done in the house. This would normally take it all out of me for a long time. Today, I feel little effect from what I did yesterday.
Good to see your getting better. keep us updated on how u go with LDN. Have you thought about alternating something else with klonopin to help avoid tolerance and to keep it working? Although tolerance seems to be an individual thing as i have heard of some needing to increase their dosage regularly and others have stayed on the same dose for years. Personally when i find one of my sleeping pills stops working, instead of incresing the dose i just stop using it for awhile and when i return to it, it starts working again, even though most nights i take something different, with the occassional long break of a few weeks from some meds.
Yeah, I've thought of those things. I haven't alternated too much. The effects are still pretty much the same. I'm not near 2mgs of klonopin per day (1.25mgs is max) and I refuse to go that high. Flexeril still does the trick although I can tell that it isn't quite as potent. My wife said last night, while I was asleep, I was able to, with one swipe of my leg, take all the blankets from her side of the bed over to mine. lol. For the time being though, I'm just enjoying the feeling of becoming more stable and losing some weight.
I will be adding ldn shortly. Havent gotten around to getting a nice glass jar for my mixture.
Thought I would update. I don't often think of cfs anymore but, while I am not cured, I am greatly improved.
Klonopin in small amounts during the day is better than one larger dose once a day.
Haven't had anything resembling a crash in months.
Can do anything I want pretty much unless it increases my heart rate. That's still bad, but no where near what it was.
At the time of writing this I weight 183lbs. 6 months ago or so I was up around 228. Least week I hit 178lbs (thats a 50 lb weight loss). I simply don't over eat anymore and eat better generally speaking and am much, much more active (giving up beer might have also had something to do with it, don't get me started, I love beer. . .).
Histame is absolutely amazing stuff for me. Takes the heavy feeling away from anything I eat dot period.
Have doctors appt in a month, going to check testosterone and various other things. I feel like I'm just one "thing" away from being 100% but I don't know what it is. . .
I can safely say I am no longer chronically fatigued. Now, if you take away the meds, I'm 100% sure I go right back down to where I was.
Have they figured out a cure yet? Chop chop mr scientist. . .
cool, good to see your getting better. I wish i could give up beer and lose some weight but i rarely drink now, lol. You sound like your in the same place i am, just sorting all the hormone mess that cfs has done
Had Dr Appt yesterday. Bloodwork ordered for the usual, ebv, hhv6 plus testosterone levels kidney liver adrenal cbc immune pannel ect. We will see. I told him it felt like theres just one more thing missing to be 100%. I think I'm at a consistant 75% right now. He mentioned it could be testosterone levels.
(Pre treatment I think Dr Lerner was right. I probably was a 2.5 out of 10.)
I do remember a dr appt about 4 or 5 years ago with a different dr. This was before I knew anything about cfs and was complaining about the same symptoms. Testosterone levels were in the low 200's. He stated there was a debate as to if that is normal or not. He apparently thought it was fine and mumbled something about marijuana use lowering testosterone. . .
I guess cfs patients look stoned. . . meh, I guess we do.
he was not a very good doctor in my opinion.
I'll update later once I get around to going to the lab.
I know where ya coming from, u feel better on famvir and viruses are sorted but something still not right, When u find out let me know. Good to see you have improved.
Funny blood lab story
I go in and just happen to glance at the paper and it says HHV 1 and 2, not HHV6. . . My doctors writing clearly stated hhv6.
Me: "It's supposed to be HHV6, not 1 and 2"
Phlebotomist: "We don't have that"
Phlebotomist: "I don't think we can do that"
Me: "Sure you can, its half the reason I'm here"
Phlebotomist: "I'll have to call for verification"
Phlebotomist was very nice and capable, its just one of those things that I bet they NEVER test for. Even the infectious disease doctor I went to before Dr. Lerner forgot to test for it and he was VERY extensive. So everything worked out ok, blood came out, went into the bottles and we wait.
Blood work came back. Strange results since I feel better since starting Famvir 500mgs 3x a day.
EBV Ab VCA, IgM 2.6 HIGH
EBV Early Antigen Ab, IgG 1.2 HIGH
EBV Av VCA, IgG 4.1 HIGH
EBV Nuclear Antigen Ab, IgG >8.0 HIGH
Absolute CD 3 2469 HIGH but just barely above the range 622-2402
ABS. CD 8 Suppressor 1143 HIGH range 109-897
% CD 8 Pos. Lymph. 38.1 HIGH range 12.0-35.5
AB NK (CD56/16) 162 range 24-406
% NK (CD 56/16) 5.4% range 1.4-19.4
Cortisol 14.9 range 2.3-19.4
Testosterone Serum 541 range 348-1197
TSH smack in the middle of the range at 2.01
HHV6 IgG 12.48 High positive is >.99
Sedimentation Rate-Westergren 2mm/hr range 0-23
I have no idea at this point which way to proceed so I'll just continue on my current regiment.
Wow your CD 3 and 8 lvls are good. I understand that it is the ratio of CD4 to CD8 that is important too.
When was the last time you had your ebv tests done ? I understand it takes awhile for those lvls to go down. Mine took at least 6 months.
last time I had my ebv test done was Dr Lerner, so, over a year and a half ago. Before Valtrex or Famvir.
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