Equilibrant

[PGHCFS]

"Extra tired" that's funny, what I mean is miserable, flu like, headache, fatigue, can't sleep, can't think. It would be great to just be tired.

 

[RestingInHim]

Yah...I hear you! Not fun.

I just lowered my dose to 4 today, which Dr. C told me to do if I did better on 5...so I'm kinda holding my breath.

 

[RestingInHim]

I try to watch old movies to distract me. Sometimes it works.

 

[PGHCFS]

I'm confused about what to do. I feel like I should slowly raise the dose to the full dosage, I think I rushed it before, but then I hear you are going down in dose. I don't know which direction to go. I haven't really felt any better since I have been on it, some better days, some the same bad. You are just going off of how you feel right? I need to keep better records of how I feel like you do. Some days I start off pretty good, then by noon I am no good.

 

[RestingInHim]

I gradually increased my dose every 7-10 days, but only after I felt better each time. By the time I saw dr. C on my 2nd appt I had just moved to 6 so I only wound up being on 6 for 2 days. Since my fatigue had increased, even though my pain had decreased...and based on my blood tests, he told me to bring it down to 5. If I felt better on 5, try 4. If not better on 4, go back to five. I've been back on 5 31/2 weeks. I wasn't sure I wanted to go down to 4 because I have felt better last couple weeks, but I know he has a reason for telling me to adjust it.. The most difficult part of all this is realizing you will feel worse before you feel better..and aren't sure you will feel better. But I figure this is my best medical hope, so I'm sticking with it for the 2 years, at least. Personally, I wouldn't attempt this without dr. C, or a doctor of like mind, overseeing and guiding me. Hope this helps. Don't give up, Pittsburgh

 

[RestingInHim]

You might want to ck thread re: Dr. Chia: http://forums.phoenixrising.me/index.php?threads/dr-chias-treatments.20709/page-2

 

[PGHCFS]

Hello all, any news?
I went through a pretty rough time, but I have my Equilibrant at 6 per day now and I added Olive Leaf (my wife felt I felt better when I was taking it) -- I actually feel a bit less flu symptoms, still fatigued, and I have lots of tingling in my feet and legs -- also, cold all the time. Overall, I would say slightly better.
I added Alpha Lipoic acid to my supplements hoping that it will help with the tingling and numbness.
Hope you are all doing a bit better. I am looking forward to some warmer weather here in Pittsburgh.
Also, thanks Restinginhim for all the updates on Dr Chia, keep them coming!

 

[PGHCFS]

Pretty good the last few days, more energy, much less miserable. I will stick with current dose of Equilibrant but increase Olive Leaf a bit. I might add Lysine at some point. It's supposed to be 75 degrees here tomorrow! I might actually venture outdoors for some sunshine.

 

[Mij]

Pretty good the last few days, more energy, much less miserable. I will stick with current dose of Equilibrant but increase Olive Leaf a bit. I might add Lysine at some point. It's supposed to be 75 degrees here tomorrow! I might actually venture outdoors for some sunshine.

Great! Are you taking Inosine too?

 

[PGHCFS]

I am not taking Inosine right now. I started feeling very bad for awhile possibly from doing too much at once, so I am trying to slow down. I will most likely add inosine again in the future.

 

[PGHCFS]

http://www.davidmsinger.com/2013/04/14/the-lens/
David Singer with a 4-part radio series about me/cfs. This radio program is going to air in Pittsburgh next week, I am interviewed in part one. I think it is a good series for people new to me/cfs.

 

[Mij]

I am not taking Inosine right now. I started feeling very bad for awhile possibly from doing too much at once, so I am trying to slow down. I will most likely add inosine again in the future.

My friend who's a long time patient of Dr.Chia saw him this past Monday and is asking Dr.Chia's permission to post something here soon regarding this treatment.

 

[PGHCFS]

Ok, I'll keep an eye out for it.
(Should I start taking it again?)

 

[Mij]

yes

 

[PGHCFS]

Interesting. I will try it again starting Sunday. My band plays Saturday night and I don't want to feel any worse that night. I seem to get strong flu like symptoms from Inosine -- which I hope is a good sign, but a pain in the butt all the same.
Thanks.

 

[RestingInHim]

Can't believe it's been a month since I posted here. It's been a good month and a full one!

I went down to 5, then 4 1/2, then 4 Equilibrant. I didn't do as well on 4 1/2 and did worse on 4, so am back to consistent dosage of 5. This may be my optimum dose. I see Dr.C this week. I'm wondering if he will put me on another anti-viral, as he mentioned last appointment. I don't want to mess up this good streak, but I will follow his advice. I am so thankful to, apparently, be in the subset of PWMEs with what he treats!

I'll be writing a new blog entry for Health Rising after my appointment, though don't know when it will post. Stay tuned...

 

[RestingInHim]

http://www.davidmsinger.com/2013/04/14/the-lens/
David Singer with a 4-part radio series about me/cfs. This radio program is going to air in Pittsburgh next week, I am interviewed in part one. I think it is a good series for people new to me/cfs.

WOW! Thank you for posting this! I didn't realize you had been ill for 7 years...and can't believe it took 6 years for you to get a diagnosis! This 4-part program is short but thorough. I'm sending the link to some friends....something I rarely, if ever,do! Thanks for helping to put a face...or a voice and name, at least, to this illness!

Resting...

 

[PGHCFS]

Seven years after an extreme illness (maybe mono, never diagnosed), but the first 6 were on and off being sick (more on), I would have times where I felt really normal, just needed a daily nap. Then 2 years ago I got pneumonia and never recovered.
I feel better now on Equilibrant then when I started in January, so I am hopeful it is working. I am taking 6 E per day right now. I think I will add Inosine today, but I am a little nervous about it to be honest because, like you, I'm feeling pretty good right now.
Let me know when your update is posted, I look forward to hearing what Dr C has to say.
Also, in that interview, my blood boils when that "doctor" comes on talking about "childrens" being abused, ugh, it's such a smack in the face. I am so thankful to have PR so I can read others going through the same things that I am.

 

[RestingInHim]

I am so glad you are doing better! I just realized last night my Dr. C appointment is May 2...in 10 days. Your mentioning daily naps is a wake-up call (is that a pun?) to me. I am having a very hard time getting the rest I know I have to get so I won't have a major set-back...as Dr. C warned. When I feel well...I don't always make good choices.

I agree with you about the interview...when I first listened to it, I focused more on how i thought the reporter refuted that. But the 2nd time, I realized it was a patient who refuted it...which, for a person without ME, wouldn't have as much credibility as the doctor. I also thought having Dr. Mikovitis, because she is controversial, might not be viewed as credible. However, she made some good points. The patients and the reporter had the best comments. At least it gets the subject out there in the public. I'm thinking about sending the link to friends on ME/CFS Awareness Day, will listen to it again first.

Not resting enough!

 

[PGHCFS]

I thought the reporter, David Singer, did an excellent job showing both sides. I know he had a very difficult time finding doctors in Pittsburgh (i cant find any!) and getting interviews with cfs experts. It's not an easy subject to report on since there are so many points of view, but I thank him for doing a great job of getting the conversation started.