Oxymatrine: What to expect with fatigue and how long? (And my on-going journey, info and questions.)

Jennifer J

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I'm so sorry to hear this! I don't suppose you could explain your situation to whoever has this housing opportunity?
Thanks @Mary. :) I'm trying. It's the bureaucratic government, they don't give much room to vary on things.

Additional problem is getting anyone to recognize it medically and to believe how bad off you are with ME/CFS and MCS. Also telling them I'm being treated for an enterovirus, with a chinese herb, and need time. Haha - that one doesn't fly with most the medical world or ones who quickly look at a google of any of this.

And need for them (and I'm still trying to find) a medical doctor who will support me. What a mess.

I'll keep giving it my best though and hopefully oxymatrine or something added will kick in enough in time that I can pull it off.

I don't personally notice any difference between liposomal and regular melatonin. I have had the worst insomnia and reversed circadian rhythms the last few weeks. Nothing will break the cycle, I just have to wait for it to pass. That said, when I'm not struggling like this, phosphatidylserine and melatonin are helpful.
Thank you @Diwi9. :) Good to know about the regular vs liposomal melatonin for you and to hear that the phosphatidylserine and melatonin are helpful. Sorry your sleep hasn't been well the past few weeks. I hope it passes soon for you.
 

Mary

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Additional problem is getting anyone to recognize it medically and to believe how bad off you are with ME/CFS and MCS. Also telling them I'm being treated for an enterovirus, with a chinese herb, and need time. Haha - that one doesn't fly with most the medical world or ones who quickly look at a google of any of this.

And need for them (and I'm still trying to find) a medical doctor who will support me. What a mess.
You're so right, unfortunately, about all of that! :aghhh:

I don't know exactly where you are I believe you are further south than me in California. There's a Dr. Shikhman at the Institute of Specialized Medicine in Sorrento Valley - San Diego area - who is supposed to be good and takes Anthem Blue Cross - he might be a possibility for you (or not) http://www.ifsmed.com/conditions-and-treatments

I know at least one person on the board has seen him and maybe more - you can do a search at the top of the page if you're interested.

I wonder if Dr. Chia would write a letter for you or something to give to the faceless bureaucrats in charge of your housing options?? I saw him once (maybe twice, can't remember :confused:) and he was a very nice man, seemed to really care about his patients. He wasn't able to help me, oxymatrine did nothing for me. Although inosine helped a little.

I'll cross my fingers for you! :hug:
 

Jennifer J

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I wonder if Dr. Chia would write a letter for you or something to give to the faceless bureaucrats in charge of your housing options?? I saw him once (maybe twice, can't remember :confused:) and he was a very nice man, seemed to really care about his patients. He wasn't able to help me, oxymatrine did nothing for me. Although inosine helped a little.
Thanks @Mary for all you wrote in your post. Sorry oxymatrine didn't work for you and good to hear that inosine helped some. Dr. Shikhman perhaps someday. He's not far yet toooo far for me to drive and he isn't taking Medicare/MediCal now.

Also if I remember right, unless I'm mixing him up with another doctor, I don't think he does ME/CFS diagnosis. That at this point would cause me problems. Though he still may be worthwhile for dealing with all the other that we have going on and finding other things going on.

I'm debating what is the best way to proceed. I haven't seen Dr. Chia in 5 years and only once. I can't drive there nor find anyone to drive me. I was hoping oxymatrine would give me enough ability to make a follow-up appt. I called their office and they said it would be a year for an appt for me. I explained that I started oxymatrine etc yet they insisted since I hadn't seen him in so long it needs to be a comprehensive one.

I was going to write him and see what he would prescribe next, etc. Yet I think that will be futile energy wise which I need to use wisely. I'm almost positive doctors can't advice you on treatments if they haven't seen you in over a year.

I'm just wondering at this point 3.5 months into oxymatrine treatment, if it's alright to start adding other things. And what? I'm trying to read all I can about people who have seen him to see what may be the next step then I'll see if I can find another doctor will prescribe it for me (and somethings can get over the counter).

Thinking about LDN, yet still titrating up my oxymatrine with affects from that so not sure if I ought to throw that into the mix yet.

Also looking at the other antivirals, etc that he prescribed to others and see if their diagnosis also was high Coxsackie B5 and B4 and at what point they were adding treatments to oxymatrine (or Equilibrant).

Wish I could see him. Yet very thankful for everyone who has shared on the forums and in blogs. The information is so valuable. Thank you to everyone for your contributions. :thumbsup::thumbsup: :hug:
 

Mary

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I'm just wondering at this point 3.5 months into oxymatrine treatment, if it's alright to start adding other things. And what?
Also looking at the other antivirals, etc that he prescribed to others and see if their diagnosis also was high Coxsackie B5 and B4 and at what point they were adding treatments to oxymatrine (or Equilibrant).
Hi @Jennifer J - I'm wondering if @Hip could help you here? I believe he's very familiar with Dr. Chia's protocol and also Coxsackie B viruses. I did test positive for Coxsackie B (I can't remember which one) and it wasn't high as I recall, though my HHV-6 was quite high. I have found andrographis to be very good for my immune system, I get sick less frequently and recover quite a bit more frequently than I used to. I also believe it was the chief reason my NK cell function rose from about 13 (can't remember exactly) to around 25, in about 2 years I believe. I still take it, and a low dose is effective for me - 1-2 capsules a day as maintenance and 3 or 4 when I'm sick. It's an immune modulator, so I stop it periodically to give my body a break.

Here's a review of Chinese herbal medicine (including andrographis) for "hand, foot and mouth disease" in children which is caused by one of the coxsackie B viruses, showing a positive result: https://www.sciencedirect.com/science/article/pii/S2095754818300425
 

Hip

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I'm just wondering at this point 3.5 months into oxymatrine treatment, if it's alright to start adding other things. And what?
Dr Chia says inosine can be taken with oxymatrine in order to augment the effects. 1

Dr Chia often adds the antiviral lamivudine (Epivir) 150 mg twice daily to patients' medications. 1 Chia says this well-tolerated drug has anti-enterovirus effects.
 

Jennifer J

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@Hip, thank you (and @Mary for tagging Hip)! :)

I just read through all Christine's blogs. I'm going to read Quioxtic's blogs and search what I can here and elsewhere. Kind of concerned about not having a doctor with experience helping me with this as I read about all the back and forth changes in dosage of equilibrant and other that Dr. Chia had her trying.

@Hip I wasn't sure if you'd know off the top of your head, I'm about 115 mg am and 115 pm of oxymatrine. It's been very slow titrating it up, it's 3 and 1/2 months since I started. Just wasn't sure if it would be good to add LDN or inosine or lamivudine (Epivir) while I'm still working my oxymatrine dose up. Do you recollect anything about this with others?

I just know if possible really need something to change for the better for me soon so I don't lose my chance with a housing voucher I've been waiting for 10 years for and also to get out of this asbestos situation I'm stuck in.

Here's to good moments.
 

Hip

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Just wasn't sure if it would be good to add LDN or inosine or lamivudine (Epivir) while I'm still working my oxymatrine dose up. Do you recollect anything about this with others?
All I've heard is that Dr Chia may add in inosine or lamivudine (Epivir), but not sure when or in which circumstances.