GcMAF for XMRV--Gc protein-derived macrophage activating factor--anyone taking it?

[heapsreal]

thanks a lot klm.

i have done 4 gcmaf shots so far. dreading typing this and hate even hoping because nothing ever lasts...but i am feeling better. some more endurance on some days. just...something is better, hard to explain.

one day i had a doctors appt....dr. enlander recommended sinus drainage but this doctor wanted me to do abx/nasal spray/neti pot for a month. after the appt, instead of crawling home, i went to the mall (in freezing weather too). it felt so incredible to be out, that i shopped for almost 5 hrs and carried heavy bags. i felt horrible. my chest ached and i was sick for many days afterwards. but i stayed out of the house for 8 hrs total. for a short while, it was like old times - like 20 yrs ago. i dont think i would have ever had the incling to do such a thing if not for the GcMAF.

on several brain MRI's over the years, there has been evidence of significant sinusitis. no doctor ever did anything about it so i always assumed it was part of my whole head being inflamed. even a prominent manhattan ENT doctor didnt suggest drainage...but i wonder if it would really help me.

i never feel like i am getting enough air and i cant taste things too well anymore, but its so hard to know if its related to the CFS or not.....the symptoms are slow to worsen over time...i cant even remember if i was like this before.

xoxo

Daff, it can be hard to distinguish between sinus symptoms and cfs symptoms. i used a penicillin based abx for 2 weeks with doxy for my sinusitis and doc said to stay on doxy for a few months as previous short term abx treatments have only been short term. So far so could, the sinus rinses and flushes helped to but frontal sinuses are hard to get at and can give you a really sore head thats for sure. I think sinus infections for many of us i think are a strong co-infection.

cheers!!!

 

[Daffodil]

thanks heap. has anyone suggested drainage? my doc says drainage is surgery, which i was not aware of.

i am also skeptical about the rinses and the 1 month abx helping much.

i was reading about some deaths from neti pot, when 2 people used tap water which contained a brain-eating ameoba. how awful!

 

[Sushi]

thanks heap. has anyone suggested drainage? my doc says drainage is surgery, which i was not aware of.

i am also skeptical about the rinses and the 1 month abx helping much.

i was reading about some deaths from neti pot, when 2 people used tap water which contained a brain-eating ameoba. how awful!

I think sinus infections are common in ME patients--maybe the immune system is already overwhelmed and cannot cope with them, maybe other reasons.

If by sinus drainage they do mean surgery, there are a lot of pros and cons to investigate. Unless there is some clear anatomical abnormality, the benefits of surgery may not last.

Candida is often found in the sinuses and I add nystatin powder to the solution I use in my electrical nasal wash device (designed by an ENT) when sinuses are bad. I find that if I have an active sinus infection all my other symptoms are worse too.

Glad you are having a bit of good response to the GcMAF--hope it continues!

Best wishes,
Sushi

 

[richvank]

Hi, all.

I've recently heard from one person who had a serious sinus infection that high-dose molybdenum helped (up to just under 2,000 micrograms per day, which is the upper limit for moly recommended by the Institute of Medicine). I suspect that the reason this helped is that moly forms a cofactor for the aldehyde oxidase enzyme, and yeasts produce aldehyde. Perhaps other fungi do, also.

Best regards,

Rich

 

[heapsreal]

I think sinus infections are common in ME patients--maybe the immune system is already overwhelmed and cannot cope with them, maybe other reasons.

If by sinus drainage they do mean surgery, there are a lot of pros and cons to investigate. Unless there is some clear anatomical abnormality, the benefits of surgery may not last.

Candida is often found in the sinuses and I add nystatin powder to the solution I use in my electrical nasal wash device (designed by an ENT) when sinuses are bad. I find that if I have an active sinus infection all my other symptoms are worse too.

Glad you are having a bit of good response to the GcMAF--hope it continues!

Best wishes,
Sushi

I think sinusitis can be an isolated problem that some would get even if they didnt have cfs/me, but also many of us get it due to immune defiencies. The last 12 months is the first time in the 10 yrs of cfs/me that i have had sinus issues, also my nk function is the lowest it has been as well??? I have been on abx most of this year and it seems to have helped my sinus problems.

Daff, i think if u used saline bought from a pharmacy would be the safest bet as it is sterile and saline .9% is the same concentration as tears and saliva so would be alot more friendlier then tap water. Some over the counter nasal spray can help open up your sinuses short term and when this happens take advantage of this by then doing the saline rinses. They say not to use nasal sprays/decongestants longer then 3 days. WHat helped me antibiotic wise was zinnet for 2 weeks with doxy and i have stayed on the doxy and looking at staying on it for a few months.

cheers!!!

 

[Daffodil]

thanks a lot, guys.

the doctor is making me do neti pot (i'm boiling the water so i dont get ameobas eating my brain...thats all i need right? lol)...also abx....and nasal spray for a month. if its still a problem (i dont even know if it is a problem now or not), then i think he will give me a CT of the sinuses. maybe he will do drainage then.

i took my 5th GcMAF injection today. don't feel too good today.

xoxoxo

 

[Sushi]

thanks a lot, guys.

the doctor is making me do neti pot (i'm boiling the water so i dont get ameobas eating my brain...thats all i need right? lol)...
xoxoxo

You are adding sea salt, right? Plain boiled water is apt to hurt and well as not be the best thing as you need to match the natural salinity of the tissues. I also add some baking soda and xylitol to match the formula of one of the pharmacy nasal washes.

Best,
Sushi

 

[Nielk]

Sushi,

You should become a doctor. You have so much knowledge and you're helping people all over the place.
It's much appreciated!

 

[Daffodil]

i agree. thanks sushi! this is special salt that came with the neti pot.....

xooxoxox

 

[Sushi]

Sushi,

You should become a doctor. You have so much knowledge and you're helping people all over the place.
It's much appreciated!

Thanks! Just been sick a long time and tried a lot of things!

Sushi

 

[heapsreal]

i agree. thanks sushi! this is special salt that came with the neti pot.....

xooxoxox

.9% saline is what you are looking for, maybe ask your gp for some freebies as its commonly used with injections and drips etc or just ask the pharmacy.

 

[Daffodil]

after 4th injection, i began experiencing ...loose bowel movements...not quite diarrhea....but close...multiple times a day. i am on abx...maybe its cuz of that but i think it might be the GcMAF. purchased probiotics today. a little worried...i dont want anyone to tell me to stop this gcmaf!

i think someone mentioned they had a phase of diarrhea during the treatment...?

 

[heapsreal]

after 4th injection, i began experiencing ...loose bowel movements...not quite diarrhea....but close...multiple times a day. i am on abx...maybe its cuz of that but i think it might be the GcMAF. purchased probiotics today. a little worried...i dont want anyone to tell me to stop this gcmaf!

i think someone mentioned they had a phase of diarrhea during the treatment...?

ABx can cause diarrhoea, also look into sacchromyce as it can help with diarrhoea and help with other side efects of abx like gut flora etc.
http://www.iherb.com/Jarrow-Formulas-Saccharomyces-Boulardii-MOS-180-Veggie-Caps/37658?at=0

cheers!!!

 

[Sushi]

after 4th injection, i began experiencing ...loose bowel movements...not quite diarrhea....but close...multiple times a day. i am on abx...maybe its cuz of that but i think it might be the GcMAF. purchased probiotics today. a little worried...i dont want anyone to tell me to stop this gcmaf!

i think someone mentioned they had a phase of diarrhea during the treatment...?

Sounds more like a side effect of ABX rather than GcMAF--least I haven't heard of that with GcMAF and have with ABX. Take those probiotics!

Sushi

 

[Klmrav]

thanks a lot klm.

i have done 4 gcmaf shots so far. dreading typing this and hate even hoping because nothing ever lasts...but i am feeling better. some more endurance on some days. just...something is better, hard to explain.

one day i had a doctors appt....dr. enlander recommended sinus drainage but this doctor wanted me to do abx/nasal spray/neti pot for a month. after the appt, instead of crawling home, i went to the mall (in freezing weather too). it felt so incredible to be out, that i shopped for almost 5 hrs and carried heavy bags. i felt horrible. my chest ached and i was sick for many days afterwards. but i stayed out of the house for 8 hrs total. for a short while, it was like old times - like 20 yrs ago. i dont think i would have ever had the incling to do such a thing if not for the GcMAF.

on several brain MRI's over the years, there has been evidence of significant sinusitis. no doctor ever did anything about it so i always assumed it was part of my whole head being inflamed. even a prominent manhattan ENT doctor didnt suggest drainage...but i wonder if it would really help me.

i never feel like i am getting enough air and i cant taste things too well anymore, but its so hard to know if its related to the CFS or not.....the symptoms are slow to worsen over time...i cant even remember if i was like this before.

xoxo

Hi Daff,
Thought this link to a mercola article might be helpful...
http://articles.mercola.com/sites/a...asal-congestion.aspx?e_cid=20120312_DNL_art_1
Good luck Seeing Dr. E tomorrow!

 

[Daffodil]

thanks a lot, again. i looked up abx and maybe the gut problems are associated with them....i got some expensive probitics; perhaps they will help. i dont feel anything changing in my sinuses so far.

i am worried also about reaching a plateau. with almost every treatment, i feel a little better and then just stop...and eventually deteriorate again. its too early to worry i know....but i still feel so bad most of the time. lol i cant believe its been 5 weeks and am complaining already. i guess the 2 trips to the mall gave me a taste of what i am missing.

 

[Sushi]

i looked up abx and maybe the gut problems are associated with them....i got some expensive probitics; perhaps they will help. i dont feel anything changing in my sinuses so far.

Yes, good probiotics are expensive, but, they also need to match what is going on in your gut. Have you had gut/stool tests to check that? Probiotics differ a lot as to their ingredients.

Best,
Sushi

 

[Daffodil]

hi sushi. i have had several gut dysbiosis tests, all negative. even the new soluble cd14.

today was better gutwise, perhaps cuz of the probiotics.

today was a bad day CFS wise. hope tomorrow is better.

hope you are still doing well

xoxoxo
sue

 

[globalpilot]

Apparently, we can only culture 1% of the known bacteria. With this knowledge, it's possible the dysbiosis tests may not be very helpful, IMO.

The latest technology being used to identify bacteria is individual genome sequencing of the bacteria, know as the microbiome.

Hopefully, soon this technology will be commercially available and we can better match probiotics and antifungals etc.

Please see this talk presented at teh 'defeat autism now' conference in October 2011.

http://www.autism.com/pro_videoflv.asp?flv=s2&h=480&w=640&VID=273

GP

hi sushi. i have had several gut dysbiosis tests, all negative. even the new soluble cd14.

today was better gutwise, perhaps cuz of the probiotics.

today was a bad day CFS wise. hope tomorrow is better.

hope you are still doing well

xoxoxo
sue

 

[Daffodil]

i have a source who told me something similar recently