Gamma globulin

[Rrrr]

I was wondering, does anybody know of a doctor who is willing to give Immunoglobulin in the UK? ... or even Europe at a stretch (not Dr Meirlier though). - if self-funding privately. It seems impossible to get the stuff for lover or money over here.

what about dr. myhill in england?

 

[Rrrr]

Further - I have wondered how 2cc of IGIM could be of any effect.
Why would it even come in 2cc vials?
That appears to be about 1/3 of a gram.
I have read where many years ago the IGIM was 20%.
Now it's about 16%.
Could that make that much of a difference?

Curious to note that 2cc of Gamastan equals approx 3cc of Gamunex - ie 1/3 gram.
That has never made sense to me.

Also if one looks at the open market pricing on FFF Enterprises note: (both Grifols brands)

$62 for Gamastan 2cc vial - 1/3 gram
$79 for Gamunex 10cc vial - 1 gram

How does that make sense?

FWIW the one doctor I saw (for SubQ) seemed to want to steer me away from Gamma replacement.
I had been on IVIG for about two years.
He said that many people with total IGG's in the 500's (like me) do fine w/o Gamma replacement.
(I am also low/out of range in three IGG subclasses and total IGA and one subclass).

He said that anyone would feel better with Gamma replacement because of the high protein content.
Compared it to the energy given from B12 injections. (Made me think that maybe Gamma acts like a performance enhancing drug).

Whatever - if one has CVID one needs Gamma replacement.

I almost wish I had stayed on monthly IVIG as I seem to do worse with SubQ.
Gotta make some decisions about this.

Months ago I asked my (now) prescribing doctor about doing the 1 gram/week that Dr T. recommends.
She said she did not see much results in her patients at that low dose.
She treats CFS, Lyme and immune deficiencies. Don't know what class of patients it did not help.
So she instead prescribes the Glutathione/ATP injections.

If I can no longer tolerate my usual CVID Gamma dose - I wonder if a gram a week would be of any help?
At least against viruses? And give some energy?

*What* ATP injections? There are ATP injections?

 

[Ema]

*What* ATP injections? There are ATP injections?

Douglas makes ATP tablets.

But I would want to know that I was low in adenosine before adding more to my system. I actually tested high in adenosine in the methylation panel.

I think high levels of adenosine may be toxic to the immune system and may damage the mitochondria by accumulation rather than being broken down properly into uric acid through the purinergic pathway. Adenosine can also be toxic to lymphocytes and cause them to malfunction.

Supplementing this could be a double edged sword considering we don't really know who is high or low in adenosine. All we know is it isn't working right!

 

[Rrrr]

hi all,

an update from the person who started this thread:

- i am still doing subq shots of micro doses of gg (Gamunex-C). i do about 2 cc's (which is 2/10th of a gram of gamma globulin) every few days. recently i was able to up it to 3 cc's at one time, or do the 2 cc's more frequently without bad effects.
- i re-introduced antiviral meds (famvir) last week and within a few days had a ton of energy. this happened before when i was on famvir, but the energy only lasted 1.5 months. we shall see what happens now. as some of you know, the whole point of my gamma globulin experiment was to do gamma globulin PLUS antivirals. so i am finally doing that. history: i was on the famvir for 10 months before i took a break from it about 2.5 months ago. so i have been on gamma globulin without famvir for about 2.5 months, and now just added back in the famvir with results that are very very positive.
- so, yes, i'm doing really really really well! i was able to walk 10 minutes yesterday and 20 minutes today. it has been years since i could do that. i can walk up the stairs without stopping. i went out during the day last weekend, and then was able to also go out at night. all in one day. many days i can't even go out once in the day. and very rarely can i go out at night, period.
- i am also doing some weight lifting: small 3 pound weights that are strapped to my wrists. that also says a lot about my strength coming back.
- also, i had a lot of GcMAF frozen in my freezer from my visit to dr. KDM about 3 yrs ago. (i think it is good in the freezer for 5 yrs.) i had a good response to GcMAF years ago, but stopped it due to intense hair loss. i now think that hair loss could have been from peri-menopause instead of GcMAF. so i finally re-introduced the GcMAF 3 days ago (ultra micro doses!!) after a number of years break from it. and so far i am not worse from re-starting GcMAF, and i think i am even doing better. (but it could just be from the famvir!)
- i also added in 1/4 tablet of the supplement Folapro, a Metagenics product (http://www.metagenics.com/mp/products/folapro), as per Rich Van K's simplified methylation protocol. Folapro is made of L-5-Methyltetrahydrofolate. this has helped me in the past, when i was on Rich Van K's protocol. i stopped his protocol when i became suddenly hyper-reactive to all supplements and had to stop everything, a few years ago. well, now i have re-introduced it into my treatment regime.
- and i am on vinpocetine, too, which helps the brain. i'm on 5 mg 2x/day. (http://www.jarrow.com/product/178/Vinpocetine)
- lastly, i have been doing some "brain re-wiring" called Dynamic Neural Retraining System (DNRS: http://www.dnrsystem.com/). it is annie hopper's program for chemical sensitivities, but also for ME/CFS and other "conditions" -- it is like the Gupta brain re-wiring some of you may have heard about. it is mostly about relaxing the hyperactive primitive part of your brain (called the limbic system). but it is more complex than just that.

so there you have it! again, these are the things i have added in recently that i now consider key to my current protocol and recent improvements:

- gamma globulin (been on for 3 months, micro doses)
- famvir (10 months, before gamma globulin, then stopped for 2.5 months, then restarted 8 days ago)
- vinpocetin (started 20 days ago)
- DNRS/annie hopper's program (started 2 wks ago)
- folapro (started 1.5 wks ago)
- gcmaf (only started 2-3 days ago)

and of course i'm also on all the other supplements i'm on all the time (and there are many).

things are going very well. time will tell what comes of all this.

 

[Rrrr]

Douglas makes ATP tablets.

But I would want to know that I was low in adenosine before adding more to my system. I actually tested high in adenosine in the methylation panel.

I think high levels of adenosine may be toxic to the immune system and may damage the mitochondria by accumulation rather than being broken down properly into uric acid through the purinergic pathway. Adenosine can also be toxic to lymphocytes and cause them to malfunction.

Supplementing this could be a double edged sword considering we don't really know who is high or low in adenosine. All we know is it isn't working right!

What methylation panel, @Ema?

 

[Ema]

What methylation panel, @Ema?

The one that RichvanK recommended...was it from Health Diagnostics?

 

[Sushi]

The one that RichvanK recommended...was it from Health Diagnostics?

Yes, Health Diagnostics.

 

[susank]

My understanding is that the ATP is the "driver" that makes the Glutathione work - when given IM.
Glutathione is usually given IV. Or it can come in a suppository. Or be nebulized (I think). IM is not the best way - supposedly - hence the added ATP. The injections are Glutathione/ATP/Lidocaine - the shots are very painful w/o Lido. IIRC the injections are 100 mg Glut, 1 mg ATP and 1cc 1% Lido - about 1.5 cc's injected - 2x/week.
Some folks get 1-2 grams Glutathione IV with their Myers cocktails or with their IV Vitamin C. Not together of course. Or get only IV Glutathione.

Not all pharmacies will add the ATP. Infuserve does not. Neither will McGuff.

And remember - never inject Lido IV/into a vein.

My doctor has her CFS patients on the Glut/ATP IM injections.
I get them from her and self-inject.

I have read where other folks across the country do the IM injections w/o ATP.
Their doctors call in the Rx to a compounding pharmacy.

I have done that. Received from a compounding pharmacy vials of Glut and vials of Lido.
IIRC I drew up 1cc of Glut in one syringe and .5 cc of Lido in a different syringe.
Then transferred via needle the Lido from the one syringe into the syringe with the Glut.
Then changed needles again - using 25g 5/8" or 1" to inject. 1" probably better. (metabolizes much better when in muscle vs accidentally SubQ). (I weigh 100 lbs FWIW).
I don't know if I can tell much of a difference with or w/o the ATP lately.

I will say - the first time I injected the Glut/ATP/Lido with 1" needle in VentroGlut - within hours I was thinking - wow - this stuff is great.

Subsequent injections I did not get that feeling. Typical for me. I think something is gonna be great - tolerable - etc - then it doesn't happen or things get worse.

I still do the Glut injections because Glut is great stuff. It's gotta be doing something good whether I feel it or not.

Don't folks do coffee enemas because of glutathione?

 

[susank]

Re: Infuserve
I have only been buying from them for a few months.
I had always heard good things about them from the Lyme community in regards to infused/injected antibiotics etc.
They have a website which has lots of info. They are really really nice folks. Prescriptions required of course.

They sell Immunoglobulins, Glutathione, antibiotics, compounded drugs etc.

I recently had an insurance change and with my new insurance will not even bother going through the hassle of getting some of my Lyme meds through them.

Glutathione: I explained above.

Rocephin (as Ceftriaxone): Also great stuff. I felt it's effects when I got it IV for resp. infections.
Was too afraid to take it for Lyme due to the gallbladder issues it can cause.
I am now so sick and desperate I will risk my gallbladder to save my brain.
I will take Actigall while on Rocephin.

I do not have a port or a Picc line so have been injecting it IM. With Lidocaine as Roc. is a very painful IM injection. I hope at some point my doctor will allow me to infuse it IV with a butterfly needle.

My doctor called in the Rx for the Ceftr., Lido, needles and syringes. Got my first shipment from Infuserve today.
The pharmacist was kind enough to caution me that inadequate dosing could cause resistance.
I think the gal from my doctor's office messed up and only called in for 1 gram/week. Not good.
I think - for my purposes at least - that I should be doing a gram/day for four days with three days off.
Awaiting clarification. So be mindful of low doses and resistance issues.

Immunoglobulins: I think that Infuserve can serve as a special pharmacy for some folks depending on their insurance. I don't know if my new insurance will work with them. I don't even know if my new insurance will even approve me for Gamma replacement. Also don't know if I want to continue with it - have been having troubles with it lately - even smaller doses.

I have been spoiled with my old insurance that would allow me to "push" the Gamma SubQ with a butterfly needle.
I think Medicare and Medicare Advantage plans require patients to use the pump. Which means paying a rental fee for the pump and co-insurance for all the tubing and supplies. And using their approved in-network pharmacies.

I have CVID so should be on about 30 grams Gamma/month.

It may happen that I will have to do very low doses (SubQ) and self-pay. For that I would turn to Infuserve.
They don't keep the 1g Gamunex vials in stock - but would try to get them. I think the 1g vials of most Gamma brands can be difficult to get sometimes. I just heard there might be a temporary shortage of the 1g Gammagard vials across the country.

I think Infuserve does have the 1g vials of Octogam in stock. It is a cheaper brand. Not approved SubQ but I think some folks do infuse it SubQ off-label. It is a 5% brand - which means 20cc = 1 gram.
Dunno about Hizentra. Or the IM version Gamastan.

Anyway - were I to get my Gamma from Infuserve I am 99.99% positive my doctor could Rx for me to infuse as I have been doing - ie w/o a pump. Then I would get the vials and butterfly needles and smaller syringes.
Would pay more for the Gamma - but have the freedom of infusing how I want to - and not have to pay for the usual SubQ supplies. I think a BF needle costs about 75 cents. Needle (for drawing) and syringe to infuse about half that.

Sorry so wordy - am very tired. Kindly, Susank

 

[kermit frogsquire]

what about dr. myhill in england?

Dr Myhill predominantly uses supplements - I've never heard anyone have IVIG from her. In other words, her clinic is just a very expensive way to buy B vitamins and carnitine.

Regarding ATP and the mitochondria, if you look on the Cleveland Clinic website about mitochondrial dysfunction, their consensus is that virtually all chronic illnesses cause mitochondrial dysfunction as a secondardy effect and therefore it is neither here nor there when subtle abnormalities are found. The important thing is to treat the underlying illness.

B12 injections did nothing for me - I think perhaps any benefit is placebo.

 

[Ema]

I have been spoiled with my old insurance that would allow me to "push" the Gamma SubQ with a butterfly needle.
I think Medicare and Medicare Advantage plans require patients to use the pump. Which means paying a rental fee for the pump and co-insurance for all the tubing and supplies. And using their approved in-network pharmacies.

I have CVID so should be on about 30 grams Gamma/month.

I would check on this with your Medicare plan.

Typically, SCIG is billed under Medicare Pt B, not your Pt D prescription plan, for whatever unknown reason. The cost of the supplies is usually rolled into the cost of the meds and not billed separately like it is with private insurance.

With traditional Medicare, since it's billed through Pt B and not Pt D, you can also use whatever pharmacy you want. You are not limited to their specialty pharmacy.

Then you can buy whatever supplies you want and infuse however you and your doctor decide, if Medicare declines to cover those costs, because they are insignificant.

It might be different though for Medicare Advantage plans. It's worth finding out though.

 

[Daffodil]

Rrrrr...your post has me jumping - or wanting to jump, rather - for joy.

someone up there asked if 1 gram a week of immunoglobulin could help..my doctor says 'yes' and he is the best.

 

[Ema]

I infused Hizentra last night, my usual 10 g, and I have to say that my leg is a LOT more swollen and hurting than usual. My last infusion was 5/11.

I think infusing every 2-3 weeks (trying to save up my supplies while going through insurance nightmares since 12/23/13) is a lot harder on my system than doing it every week. I think the body gets used to it when it's done regularly and doesn't react so violently.

I don't have any option at this point to break up the dose because the bottles are no longer sterile once open and I am down to 10g bottles only.

 

[Rrrr]

@Ema, can you ask for 1 gram bottles instead? that is what i did. so sorry about your leg! are you injecting in yr leg? i inject in my belly.

 

[Rrrr]

i have yet to read and respond to the earlier posts. i will soon, i hope.

right after my last post (which was full of me bragging about how well i was doing), i spent a day in bed. :-( why does that always happen? right after i tell everyone how great i'm doing, i then crash. jeeeeesh.

but today was another great day. really amazing. i was able to go out much of the day. freaking amazing.

 

[Ema]

@Ema, can you ask for 1 gram bottles instead? that is what i did. so sorry about your leg! are you injecting in yr leg? i inject in my belly.

If and when Medicare approves my prescription, I will get smaller bottles again so can dose multiple times a week in smaller quantities. But it has been almost 6 months and I'm starting to lose hope that it will ever get approved again.

My leg and flanks work best for me typically. Usually there is very little swelling or pain. When I use my belly, I look pregnant and feel like I've been kicked by a donkey!

 

[susank]

Ema -10g Hizentra is 5cc?
Are you rationing your Hizentra bottles?
Or rationing your infusion supplies - ie tubing for the pump etc?

 

[Ema]

Ema -10g Hizentra is 5cc?
Are you rationing your Hizentra bottles?
Or rationing your infusion supplies - ie tubing for the pump etc?

No, it's 50ccs.

I'm rationing the Hizentra. Only one bottle left now so cross fingers the insurance gets their act together soon!

 

[susank]

Yeah - just realized that. Sorry!

 

[deleder2k]

I was wondering, does anybody know of a doctor who is willing to give Immunoglobulin in the UK? ... or even Europe at a stretch (not Dr Meirlier though). - if self-funding privately. It seems impossible to get the stuff for lover or money over here.

Dr. Mette Johnsgaard at the Balder clinic in Oslo. http://balderklinikken.no/information-in-english
She has 60 patients on Gammanorm at the moment. Around half of them are experiencing a significant effect.