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Equilibrant

Messages
59
Location
Pittsburgh, PA
I took 1000 mg Inosine m-f last week and felt horrible - flu-like, but tolerable. I'm off it right now and feel ok. I need to deal with my extended family this week because my Dad is sick, so I am not taking it now, but I plan to start a higher dose next week. I read all of your previous comments on inosine and I am hoping my flu-like reaction is a good thing. Let me know if you have any advice or you friend who sees Dr C can give me any info. Thanks!
 

sandy10m

One day at a time
Messages
21
Location
Berkeley CA
Hi to anyone who is watching this,
I am new to the blog. I will start Equilibrant this weekend. I have Lyme and already tried the Doxycycline route which knocked the Lyme down but not out. Never tested positive for Lyme until the new test from Advanced Laboratories in Sharon PA. Probably had it since I was a kid, 40 years, always getting bit by ticks on camping trips. Started with Banderol/Samento herbal treatments, but the viral components went unchecked, and my CFS has returned. Now I am on IV Rocephin (along with all supporting meds/supplements), along with low-dose Naltrexone (LDN) and Imunovir for immune support with good results, except for brain fog (taking Nootropil for that). I tested positive for acute EBV, which has improved, but Coxsackie is out of control. This is why I am adding Equilibrant. Thanks to all previous posters who warn everyone to start with 1/2 pill. That's where I will start. I will try to post about my experiences every few days. Wish me luck.
 

aquariusgirl

Senior Member
Messages
1,732
I took 1000 mg Inosine m-f last week and felt horrible - flu-like, but tolerable. I'm off it right now and feel ok. I need to deal with my extended family this week because my Dad is sick, so I am not taking it now, but I plan to start a higher dose next week. I read all of your previous comments on inosine and I am hoping my flu-like reaction is a good thing. Let me know if you have any advice or you friend who sees Dr C can give me any info. Thanks!
Hi to anyone who is watching this,
I am new to the blog. I will start Equilibrant this weekend. I have Lyme and already tried the Doxycycline route which knocked the Lyme down but not out. Never tested positive for Lyme until the new test from Advanced Laboratories in Sharon PA. Probably had it since I was a kid, 40 years, always getting bit by ticks on camping trips. Started with Banderol/Samento herbal treatments, but the viral components went unchecked, and my CFS has returned. Now I am on IV Rocephin (along with all supporting meds/supplements), along with low-dose Naltrexone (LDN) and Imunovir for immune support with good results, except for brain fog (taking Nootropil for that). I tested positive for acute EBV, which has improved, but Coxsackie is out of control. This is why I am adding Equilibrant. Thanks to all previous posters who warn everyone to start with 1/2 pill. That's where I will start. I will try to post about my experiences every few days. Wish me luck.

Hi can u say who u r working with?
 

sandy10m

One day at a time
Messages
21
Location
Berkeley CA
I am working with Gordon Medical Associates in Santa Rosa CA. Dr. Gordon and his staff actually have people fly in from all over the world to see him for treatment, so you might consider doing that if you can afford it. Not necessarily him, but maybe if you can find a doctor in Boston or something like that. I have to drive 1.5 hours each way, which is hard when you get so tired from everything, but he's great, one of the best, leading edge stuff.
 

globalpilot

Senior Member
Messages
626
Location
Ontario
I am working with Gordon Medical Associates in Santa Rosa CA. Dr. Gordon and his staff actually have people fly in from all over the world to see him for treatment, so you might consider doing that if you can afford it. Not necessarily him, but maybe if you can find a doctor in Boston or something like that. I have to drive 1.5 hours each way, which is hard when you get so tired from everything, but he's great, one of the best, leading edge stuff.

I'll second that. There was a post here earlier in the year about Dr Nathan and his fees. The initial fee was expensive but I have to say the service has been top notch. I've wanted to do 3 more tests since that initial visit. They have obliged and sent me the test kits - no cost to me , not for their time, not for the shipping. I spent 45 minutes with either their nurse or naturopath (not sure which) during which she taught me how to use GCMAF - $20.

Everytime time I ask about a test - they know about it and do it and facilitate it for me. It's so refreshing.

My initial apt was for 1.5 hours. I spent 2 hours and 20 minutes him - I know this because I recorded it. He still only charged for 1.5 hours.

They have not disappointed me yet in any way.
 

sandy10m

One day at a time
Messages
21
Location
Berkeley CA
Well, I started with 1/2 pill Equilibrant this morning. I felt nothing unusual, but maybe that's due to all the other medications I am taking for everything else. I will try 1/2 pill AM and 1/2 pill PM tomorrow (Sat) and see what that does. More to come.
 
Messages
59
Location
Pittsburgh, PA
I'm starting on inosine again today. 4 x 500mg plus 6 x Equilibrant. I felt really decent, for me, after stopping the inosine last time, so I hope that means it helps. I started feeling a bit worse a few days ago, so I am glad to be starting up again, even though I know it does make me feel fluish.
Sandy10m -- keep us updated, it's seems it is a long, slow process.
 

RestingInHim

Realist
Messages
159
Location
Riverside, CA, USA
I had my 3rd appointment with Dr. Chia last week. I've been taking 5 Equilibrant per day (2 1/2 am & pm) for 3 1/2 weeks after lowering it from 6 to 5 to 4 then back to 5. He said I am progressing well and to stay on 5. I have been doing very well with only 1/2 day crashes about once-a-week. i just raised my activity level on my PR profile from 3 to 5!

He explained some things about the auto-immune issue which I'll write about in my blog on Health Rising soon...but want to say here that I realized how important it is to be monitored by a physician who understands infectious diseases and auto-immunity. There seems to be a tipping line that we don't want to cross. I know that is nearly impossible for those who live on the other side of the country and I'm not sure how insurance works with out-of-state docs, but well worth looking into long-distance treatment.

Dr. Chia also said he doesn't want to add any other supplements or meds to my treatment right now. I will see him again in 3 months. I was relieved to hear that, not wanting to mess up my good run of doing so much better...but ready to do whatever he recommended. He again cautioned me about over-doing.

Hope deferred makes the heart sick, but a longing fulfilled is a tree of life. (Proverbs 13:12 NIV)
 

sandy10m

One day at a time
Messages
21
Location
Berkeley CA
Hello everyone,
It's good to hear that RIH is doing better. Good for you. And, PGHCFS, keep the faith.
For my update, today was I was on 1 Equilibrant in AM and PM, so 2 total. I had no ill effects from that. Tomorrow I'm going to 2 + 1.
The IV treatments are changing a bit. My doctor added 10 ml DMSO 99% solution to the Rocephin IV on Mon, Tues, Wed. This is supposed to give the medicines an easier chance of crossing cell membranes so the medicine can do the work. I'm only doing 3 days of antibiotics (twice a day), with support IVs Mon-Fri.
I had a bit of a setback this morning at 1 am as I had very bad spleen or pancreas pain that lasted 5 hours. I had this last Monday early morning (1 am) too, and it scared me enough to go to the emergency room since it reminded me of chest pain. Fortunately, they found nothing wrong, but maybe my organs are complaining about all the chemicals in my system now. I don't know, but I stuck with the Rocephin IV on schedule this morning. So far no more pain. It's weird that the pain happens days after I've stopped the Rocephin and everything else. And that it's happened at the same time both weeks. I am doing nothing different on Sundays that would trigger this. Just roll with the punches, I guess. For the record, I just started Week 6 of the initial 8 weeks of Rocephin IV.
I went up to 0.35 cc of GcMAF tonight. I had very little reaction to the 0.25 cc last week, so that's the reason.
I am still tired from not sleeping last night (although I napped for 3 hours this afternoon), so I'll go to bed early tonight.
Sleep well everyone.
 

sandy10m

One day at a time
Messages
21
Location
Berkeley CA
It's me again. I'm still here. I'm up to 2+2 Equilibrant per day now. Today was a non-standard day because I actually felt more "normal" than I've felt in a long time. I am off Imunovir (this is my zero-pill week in the cycle), still on Rocephin IV 3 days MTW with added DMSO in the morning, off of phosphatidyl-choline because I ran out, still on IV Glutathione weekday mornings, still on GcMAF (although no reaction to it this week even at higher dose of 0.35 cc). Because too many things changed this week, it's hard to know if this "normal" day is a fluke or a sign of getting well. I'll keep posting as things happen, for those who are watching. Is anybody watching?
 

aquariusgirl

Senior Member
Messages
1,732
sandy10m: you bet! curious as to what's in the support IVs...are u doing glut IVs in the office or at home? Think abx + DMSO is inspired IF you can handle it.

Is your insurance covering this?
 

sandy10m

One day at a time
Messages
21
Location
Berkeley CA
The Rocephin always requires Ursodiol to keep gall stones from forming (one of the bad side effects from Rocephin). I am also doing Phosphatidyl-Choline (PC) and Glutathione IVs for support. The PC is supposed to help purge toxins (particularly from the brain to help brain fog), and Glutathione is supposed to help the liver purge toxins. I am doing everything at home with a PICC line IV in my arm. I tried getting weekly heplocks, but my veins would not support them. I was leery of the PICC line, but after a few days the mild pain went away, and now I hardly think about it. The PICC line is the BEST way to go for long-term IV therapy. Insurance will pay for it if it is preauthorized. My insurance is Tricare because I am retired military, so they don't pay for a lot, but they do pay for some of the medications and some of the supplies (syringes, needles, saline syringes, heparin syringes, stuff like that), but I am doing a lot of it on my own dime. This is an act of desperation for me, so I'm going all-out in trying to win against these bugs. The cost is high, but that's why I have an emergency savings account, for just this sort of thing.
 

sandy10m

One day at a time
Messages
21
Location
Berkeley CA
I forgot to mention that I had "one hour of hope" yesterday (Thursday). I was driving back from the clinic (after buying more IV supplies), and for 1 hour my brain fog was gone, and I had great energy. It was the first time in 3 months that I felt like my personality was coming back. I have felt numb, for lack of a better term, in every way from being sick and the medications. That one hour gave me hope that things are finally starting to work. I just finished Week 6 of the initial 8 weeks of Rocephin. I think that the DMSO and/or the Equilibrant are doing something very good for me. Wed afternoon I felt a little bit better too. Today (Fri) I feel like I am having a pretty good day. So, there is hope.
 

sandy10m

One day at a time
Messages
21
Location
Berkeley CA
The doctor said "several months" for the PICC line. I read this as "until you feel better or stop feeling better." So, it could be a few months, or it could be a year. No telling. I'm thinking at least until Christmas. I really don't even think about having the PICC line anymore, except when I take a shower and have to cover it up (can't get it wet) and when I wear the arm band to keep the tubing in place under my clothes. That is essentially all the bother of having one.

My "good days" continued with Sat when I decided to do some light hiking, about 20 min with a friend. It was hard to get started, but once I got through the initial winded phase, my body settled into the hike, and I actually enjoyed it. And my body didn't crash hard when I got home. I was more tired in the evening than previously, but I was surprised it wasn't more than that. Today I feel pretty good, and I'm going to go to lunch and maybe repeat that hike again, since it's another pretty day here.

I'm up to 3 + 3 on Equilibrant now without any of the crashing symptoms that were described in this blog. I also have another supplement called Larrea RX, which is the Larrea Tridentata without the harmful turpines (which is why it's so much more expensive than the regular Arizona brand). No turpines means you can take it long term, which is what you need. This is supposed to go after herpes viruses, including EBV. I will start that as soon as it arrives.

I am concerned that the DMSO might be causing some hair loss, though (as seen on the shower floor). I know that low thyroid can cause that too, and I was on thyroid medicine for many years, until I started taking the Naltrexone and was hyped up if I took both, so I weaned myself off the thyroid meds and haven't needed them. It might be time to add a little to the morning again and see what happens.

That's the latest from here. I hope everyone is doing well.
 

sandy10m

One day at a time
Messages
21
Location
Berkeley CA
Update: my doctor thinks that the upper abdominal pain (right under the center of the ribcage) might be due to gall stones, despite the fact that I'm taking Ursodiol to keep that from happening while on the Rocephin. Because of that, I won't continue on Rocephin after the initial 8 weeks but will switch to Claforan (Cefotaxime). So, I will take a 1 week break after the Rocephin then start the Claforan (with DMSO) the following week. I will stay on the Ursodiol for 1 month to make sure the remaining Rocephin in my system doesn't form any stones.

Also, I started taking a small dose of the long-acting T3 thyroid meds that I had from before. So far my body isn't disagreeing with that, so I'm sticking with it for now.

I hiked Sat and Sun, skipped Mon, then hiked today (Tues), same distance and trail. I seem to be doing okay with that, so I'll keep doing it as long as my body doesn't object.

I am very concerned that my brain still isn't recovering, despite the Piracetam/Nootropil and Namenda. My energy is slowly returning, but my brain is still numb. The Larrea RX hasn't arrived yet, so maybe that will help some.

More news at 11.
 
Messages
59
Location
Pittsburgh, PA
Could be the Equilibrant, could be the Inosine -- not sure why, but I feel a lot better right now (knock wood). Actually had energy to mow half the lawn and then the day after still felt well enough to play frisbee with my son. I'm cautiously hopeful right now.
 

sandy10m

One day at a time
Messages
21
Location
Berkeley CA
That's great news! I have continued to do the hikes about 30 min each day (most days), but my brain is still numb and won't focus. I have another appt with my doctor tomorrow (Thur) to try to figure out why. And, I'm still waiting for the Larrea RX, 2 weeks after I ordered it. Crappy company.