Gamma globulin

[Daffodil]

susan I also was considering injecting in hospital bathroom haha

I will PM you. it is very hard at present for me to read. brain is extremely bad. thank you so much for your help

my CD8 count is still high. my doctor says this indicates virus, but he tested for EBV and it was negative.

long ago, when I was seeing Lerner, I remember that Valtrex lowered my RNase L from like 2500 to 150 (Valcyte did not). so I would like to ask my doctor if I can add Valtrex to this regimen, when I next speak to him.

 

[Rrrr]

daffodil, in terms of injecting in the hospital bathroom: i have done something similar a number of times. when i have taken a new med or supplement for the first time, i sometimes sit on the bench outside the hospital ER lobby, just in case. i wait an hour or so to see if i have a bad reaction. if not, i leave. but i'm ready to rush in, if need be. i have not had to yet!

 

[Rrrr]

UPDATE FROM THE PERSON WHO STARTED THIS THREAD

- As many of you know, I started micro doses of gamma globulin (many different brands, but landing on Gamunex-C) on Feb 20, 2014
- Now 4 months into the protocol, I have to say that I'm doing quite well. I'm getting out more, doing more, sometimes feeling (gasp) rather symptom-free for a few hours. Other times, not, of course.
- I am doing about 2 cc's of Gamunex-C (which is 2/10th of a gram) every other day, sometimes 2 days in a row, and then a day off.
- I'm no longer SUPER sick the next days after a Gamunex-C shot, so that is good.
- But sometimes the day after a shot I *am* somewhat weaker, and since I'm shooting up every other day, I'm often weaker. But I want to keep doing it every other day, if I can. My goal is to eventually do the shot daily.
- I also added in, or re-added in, antivirals (famvir), the supplement called vinpocetin (helps the brain), injectable GcMAF (micro doses of 1/10th of cc once a week) and I'm doing the brain re-wiring program called DNRS (annie hopper's program) via the DVD set (cost $250).
- I'm also on a host of other supplements, of course, like all of us.

i actually think all of these mentioned above are helping me. Who knows which is helping the most. Whatever help I was getting from the gamma globulin, it just increased a lot when i re-introduced the antivirals. So certainly gamma globulin AND antivirals were a good idea for me (as per this Italian study: http://forums.phoenixrising.me/inde...patients-with-chronic-fatigue-syndrome.26506/)

 

[Daffodil]

hi susan. so I asked my local specialist if I should have an epi-pen when I first inject. he said I should do my first injection supervised and be observed for at least an hour. this poses a big problem because he is fully booked for a while. he is the only doctor I see.

I did make an appointment with a GP I haven't seen for years. I stopped seeing him because he refused to prescribe any off-label meds for CFS. I can ask him to observe me but since I haven't seen him for years and he is not the one who prescribed the Gamunex, he might just tell me he is not comfortable doing that. It is a strange request after not seeing a doctor for many years lol

my specialist told me to go to the ER and tell them I need to be observed. ...but I don't know why he thinks they will help me with this?! this is not an emergency and this is not even a drug prescribed to me by anyone in Canada. I am sure they will tell me to buzz off.

I don't want to do this in the bathroom! that doesn't seem sanitary. but I am NOT waiting another 2 weeks to get an appointment with my specialist. I am already 3 weeks late with this and have declined so much, it is scary.

I will just try the GP first, I guess. I just looked up the Baxter 300XL pump I am renting. may as well be a spaceship with this fog lol
xoxo

oxox

 

[Little Bluestem]

my specialist told me to go to the ER and tell them I need to be observed. ...but I don't know why he thinks they will help me with this?! this is not an emergency and this is not even a drug prescribed to me by anyone in Canada.

Maybe he told you to go the ER because he has had other patients do it. While it is not an emergency, it is a situation that could become an emergency. That is why you need to be observed. You might call the ER and ask if you could come in to do your first infusion.

 

[Daffodil]

hi all. thanks blue.

so I called the ER and they said I could come in.

I talked to a really nice RN who is now able to work part time after very long-standing CFS. she says she almost died many times. what helped her is IVIG.

problem is, everyone I talk to says that while it is good to start low, you have to increase and I wont be able to afford to. anyway, I guess I should worry about that later.

I think KDM uses it for only 6 months but I am not sure why.

 

[RYO]

It is interesting to read about mechanism of action of IVIG. A friend takes it for her CIDP.

" IVIg is thought to down-regulate antibody production by B-cells, interfere with B-cell proliferation via a blockade of cell surface receptors and prevent the activation of certain subtypes of B-cell. In addition, IVIg can affect innate immunity by interrupting the steps in the complement activation cascade and blocking Fc-receptor mediated activity, which results in down-regulation of macrophage activity. In conclusion, IVIg has numerous modes of action, which culminate in the down-regulation of the immune response"

I wonder whether those that experience improvement is because of immunosuppressive effect vs potentiation of viral clearance.

Based upon Rituximab results, it suggests autoimmune component to CFS/ME.

There are two small studies that did not show benefit for IVIG. It would be nice if either study described inclusion criteria in more detail. An area for future research may to study effects of IVIG on CFS / ME patients that have history of sudden viral illness as trigger.

http://www.ncbi.nlm.nih.gov/pubmed?term=2239975

http://www.ncbi.nlm.nih.gov/pubmed?term=9236484

To those who have noticed improvement on this thread, did your CFS / ME start with sudden viral illness trigger?

 

[Daffodil]

hi all. so I think I have some sad news to report about my case. yesterday, I took the grueling trip to buffalo (which I was able to do thanks to 2 benzos) and since I was downtown when I returned, I decided to just go to the ER then and there despite the late hour.

after a 3 hour wait, it looked like I was going to be out of luck but finally this amazing doctor's assistant agreed to help me. (Canada just started the doctor's assistant position and I couldn't be happier about that). anyway. it took a while to find a nurse who was comfortable with helping me, since no one there had even used that sort of pump or given subQ with a pump. i could have figured it all out myself but my condition at that time was extremely poor.

the pharmacy had sent me a weird butterfly needle that was thick and bent at a 90 degree angle. when i tried to stick it in, only the ti[p of it seemed to puncture the skin and it would not go any further. weird. maybe this is to make sure it is only subQ. i really didn't care for the needle.

so nothing happened; no bad reaction or any reaction at all.

i got home after 4 am...i was hoping i might feel something this morning....and i am incredibly ill, but i think its just from the activities of yesterday and last night and being up for almost 24 hrs. i am not sure i feel anything from the immunoglobulin.

maybe i sill cannot be sure yet. anyway, i guess i was hoping for something extreme. lets see what happens.

xo

 

[Daffodil]

does anyone know what became of synthetic immunoglobulins? are they still in trials?
thanks

 

[Ema]

does anyone know what became of synthetic immunoglobulins? are they still in trials?
thanks

It's called Hexagard. I haven't seen anything more on it since the press releases last fall though.

ETA: It looks like it's probably a ways off still...

http://immunologynews.blogspot.com/2013/11/generating-alternative-to-ivig-therapy.html

 

[Daffodil]

thanks ema. I read a 2006 article about a Canadian doctor doing something similar so I thought maybe it would be closer to market now. it looks like a long way off.

 

[susank]

Daf - at least you did not have a bad reaction! That is a good sign.

I am sure you are tired.
See how you feel after rested up.

The times when folks feel anything on Gamma can vary.
Some folks feel the "hangover" the day or two days after infusion.
I think that is when the antibody levels peak doing it SubQ.
See how you feel the next few days.

At some point you should feel better on it.

Do you have a headache at all?

I did not think you would like the Huber needles.

I cannot imagine why you were sent those unless the pharmacist (or tech?)misunderstood and thought you were infusing IV with a port.
Even though self pay - but with nurse infusing. Self IV a no-no.

If you continue on - a gram a week? (how many vials did you buy?) I would request different needles be sent for sure.

If you stay with the pump - get the proper infusion set needles. RMS or EMED. Assuming those work with the Baxter pump. They do for the Freedom60 pump.

If ditching the pump get buttefrly needles. The same needles used for blood draws.
Terumo or BD 25g 3/4".

Sus

 

[Daffodil]

hi susan. thanks! you know a lot about this.

I am going to ask the local doctor if there s some way to get the needles and pump here and not have to pay American money.

I bought 12 vials...enough for about 3 months...that is all I am allowed to bring over the border.

I don't think the pharmacist misunderstood...I was very clear about everything.

jeez what a weird needle that was.

I wonder if it might be possible to find IG cheaper somewhere, somehow. I am too far gone for these micro doses to help I know it.

sometimes I feel like my doctor knows its too late for me but won't say it. in fact, I am sure of it

 

[susank]

Thoughts:
Folks that take Gamma for immune deficiencies note that it takes sometimes months to feel anything.
That is for high doses. Maybe they mean "feel anything" in ref. to decrease in infections.

But most folks on IVIG report that the days before their next infusion is due - they have less energy.

So the Gamma is high protein - which probably helps with energy. The antibodies themselves work against infections - and whatever else is the enigma of Gamma replacement.

I cannot remember the timing of when Rrrr said she felt better with her microdosing.
The day of injection? The next day? Days later? Sometimes not at all? Felt worse?

I have noted that I don't feel much different hours after infusing gram. Perhaps a bit more mental clarity, more energy and maybe a bit of a headache. (Although lately I have chronic headaches which could be Lyme related).
The day after a gram I am usually no worse off with my general unwell feeling. It almost seems that two days after I infuse in when I feel the worst.

I have read where Dr. T has said that CFS folks find 1/3 of a gram or a gram of Gamma a week helpful.

Don't quite understand that. Because it helps with energy? (except when it doesn't and one has side effects/feels sicker). Or the antibodies are neutralizing pathogens/whatever - even at that small dose?

For folks that are not Imm. Def. the small doses should not help in that way I don't think.
They have enough antibodies. Unless they come up against something like Rabies.

I find I straddle a fine line in my dosing.

Example: I was off Gammagard SubQ about two weeks before changing to Gamunex.
(The longer I took Gamunex the worse I felt) (Thought to change brands).

The day or so after my first Gamunex infusion I felt much better. Was so happy! The changed brand was going to work! Then - within weeks it was the same old thing. I felt worse days after infusions.

Perhaps I would do better with a gram every two weeks?

Perhaps my body does not like the frequency of the new "invader"?

I guess one has to find the brand, dose and timing that makes them feel better.

I am having a similar dilemna with Rocephin. Will post about that on another thread.

 

[susank]

Daf - I am wondering what you are paying for supplies?

The pump rental, hubers, larger syringes etc.

If $90 that is enough to buy a gram of Gamunex!!

 

[susank]

Daf - cannot remember. Did you do a pneumovax challenge?
If yes and failed - do you have the paperwork?

You have had your IGG and IGA and subclasses tested?
Find your paperwork.

I have an idea.

 

[Daffodil]

hi susan. I paid $1457 I think...something like that...for 12 vials + supplies + pump rental.

I do not have immune deficiency but my subclasses have not been tested for a long time. my total IGG is low-normal.

in Canada, you have to have pretty severe deficiency to qualify for IG through the government.

my doctor said not to add Valtrex for me.

 

[Daffodil]

hello. I think I have hijacked Rrrr's thread lol. sorry about that.

just wanted to report that yesterday and today have been better. I have been humming and singing around the house...a rarity these days.

 

[maryb]

Good to hear

 

[Rrrr]

hello. I think I have hijacked Rrrr's thread lol. sorry about that.

just wanted to report that yesterday and today have been better. I have been humming and singing around the house...a rarity these days.

great to hear! how many injections have you done? how often and how much?

update on me: i'm doing well! not healed, but much better than before i started gg.