Gamma globulin

[susank]

Daf - I have been sick for years - almost 20 years. I did not start IVIG until about five years ago and it really helped.
That was when it was discovered that in addition to EBV I had CVID (immune def.) and Lyme.
Right before I started IVIG I really really crashed - could hardly function. Perhaps that is when I was infected with Lyme. Dunno. I felt better on IVIG and Bicillin.
Remember we spoke on the phone and I mentioned that when I started on Bicillin I actually was able to do more - and even was able to gallop my horse!
Of course as things go with me - after time if a drug made me feel better - that wears off - or something.
When on IVIG I did 10 or 20 grams every three weeks.
I switched to SubQ about two years ago. I still feel terrible but think the Gamunex still does help.
Even at 10-12 grams per month. A few weeks ago I had to get IV saline - and it was around the time I had done a SubQ infusion - and I think that the saline helped with the side effects of the infusion.
I am hoping to get home health care to give me at least one IV saline infusion per week.
Independent of the SubQ Gamma I will still do myself.
Anyway - I just did some research on Gammanorm.
Looks like the smallest vial is 6cc = 1 gram.
I assume that would be the size you would be getting?
Or 10cc vial = 1.65 grams..
So a bit thicker/more concentrated than Gamunex.
And once vial opened it all must be used that day.
6cc IM - dunno. Cannot imagine. Unless you did three IM injections of 2 cc's.
If you do it IM be sure to have the doctor show you the proper injection sites - including the Ventrolgluteal muscles.
I used the VG muscles to do my Bicillin (thick Penicillin) very slow - injections. They were 2 cc's.
I want you to be prepared for your appointment. I don't know why you want to use and pay for a pump.
BF needles are about 50 cents.
The BF needles are 23 or 25 g - 3/4" long with 3" or 12" tubing. Use one BF and one syringe per infusion.
The BF needles do not go straight in like an IM injection.
They go in at an angle - almost parallel to the skin. Looks like an IV placement but is SubQ.
Easy peasy and cheap. You should ask KDM about this. Have them at least show you how to do it with a BF needle. With a correspondingly much smaller syringe.
Just for a visual - imagine if you were to give it IM - straight in with a 1" needle.
Imagine the same needle and syringe - inserted at an angle into fat i/o straight in for muscle.
That would be the BF needle way. Taped to site for protection and so needle won't move so you can walk around.
Doing these slow infusions that require hydration - walking to the bathroom with ease a good thing!

Or - dunno - as thick as I think Gammanorm might be - could you use diabetic needles - go straight in but not into muscle? Three sites of 2cc using 3cc syringes?
I have some B12 SubQ needles that are 27ga 1/2" - that fit on BD 3cc syringes.
Could take bathroom breaks between injections. Space them out.

Sorry wrote so much.
Mods - if I am out of line please let me know and I will modify my post.
I don't want Daf to go to all this trouble and expense to get the wrong supplies.
It happens.

 

[susank]

Daf - me again - sorry.
I can't believe you paid $10/day for a pump.
Also I called your needle set a harpoon after you described what Infuserve sent you.
I don't think what you got were SubQ infusion needle sets.

Infusion sets have needles that are usually 26 or 27 g and 3,6, or 9 mm long.
Tiny "thumbtack" needles with tubing.
That tubing attaches to flow rate tubing to moderate infusion speed if using a pump.*
If no pump used - then no flow rate tubing used - one can self push the Gamma with the "thumbtack" infusion needle set attached directly to the syringe.

*Depending on the pump. The Freedom60 pump requires flow rate tubing. Other sophisticated pumps probably not.

This all difficult to visualize without seeing the items in person.
Ask Dr KDM what options you have.
-IM
-SubQ with pump and proper needle sets
-SubQ w/o pump using proper thumbtack needle infusion sets, or BF needles, or diabetic needles.

 

[02138]

i know a MA, USA, doctor who charges $70/wk for an in-house shot of it for those who are not covered by insurance. he gets a big multi-use vial of it, and then everyone gets their shot at once, so that divides up the cost. he has a ton of lyme and me/cfs patients.

I'd very much like to know who that doctor is; I'm in MA and would like to pursue this. (Sushi, thanks much)

 

[Sushi]

I'd very much like to know who that doctor is; I'm in MA and would like to pursue this.

You will need to tag @Rrrr so that the member sees your post.

 

[susank]

Anxiously awaiting hearing something from Daf. Any news? Hopefully good!

 

[Sushi]

Anxiously awaiting hearing something from Daf. Any news? Hopefully good!

You could tag her. She has mentioned IVIG in other threads, so you could check her other posts.

 

[susank]

Thanks. I don't know how to tag - guess will learn. Daf is back though? I thought she would have posted about Brussels on this thread.

 

[August59]

Thanks. I don't know how to tag - guess will learn. Daf is back though? I thought she would have posted about Brussels on this thread.

To "Tag" a member, so that they will receive a notification that there member name has been referenced in a post, use the "@" symbol as prefix to there member name ( i.e. - @susank )

 

[Daffodil]

Thanks. I don't know how to tag - guess will learn. Daf is back though? I thought she would have posted about Brussels on this thread.

hi susan! sushi just told me you asked about my brussels trip. unless someone messages, tags, replies, or likes, i just have no idea that a question was asked lol

here is a link to that thread:

http://forums.phoenixrising.me/index.php?threads/recent-kdm-appointment.36282/

 

[Daffodil]

@susan.......so i wonder if i can ask a question. because the american pharmacy charges $10/day for a pump rental since i am not buying the meds from them this time, i decided to buy a used syringe pump from ebay for $80. i ordered it really early - like a month before i needed it - so i wouldnt have to worry....but just my luck, the thing has been stuck at customs for weeks. it looks it it is a restricted item and probably won't be released into canada.

anyway, i was supposed to start the medicine 5 days ago and i think my head is feeling much worse because i am not taking it. i dont want to risk ordering another pump, so it occurred to me this morning that i might as well just push the syringe plunger in myself. its only 1.65 g per infusion - what can happen? i will just push it slowly.

didnt you once say you did it that way?

how are you doing now?

thanks!
xox

 

[Ema]

its only 1.65 g per infusion - what can happen? i will just push it slowly.

You can do it that way. Just make sure that the liquid isn't cold as it gets thick and harder to push.

If I was only doing a gram or two, I probably wouldn't bother with the pump at all either.

 

[Daffodil]

You can do it that way. Just make sure that the liquid isn't cold as it gets thick and harder to push.

If I was only doing a gram or two, I probably wouldn't bother with the pump at all either.

thanks ema! i feel so foolish for not doing this sooner..its like the fog prevents me from thinking at all!

 

[DataDude]

Hi @susank -- noticing you had planned to resume your experiments with Rocephin. Wondering if you ended up trying that, and what the results were -- did your symptoms improve and stay away, how were the side effects, and what is your status?

Hoping this finds you well and thanks for any insight you can offer. I'm asking because Rocephin has been suggested for me due to a Lyme diagnosis with CFS symptoms.

Best

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

 

[justy]

Hi, just wanted to add my experience of what I am doing (just started today) my Dr prescribed 3ml of Gammanorm 2 x weekly by sub q injection - no pump, no slow push.

Today I had my first one. The nurse used a longer needle to draw the GG out of the vial and then put a shorter thicker needle on the syringe to inject. She wanted to do IM but the Dr said I could do Sub Q as I feel happier doing that myself sp convinced her to do it that way.

She did it as a straight forward injection but did it a little slowly, but still only taking a few minuets at the most. I hope this is OK as I haven't heard of anyone doing it like this before.

afterwards I felt dizzy for a few hours but this seems to be wearing off now. I have the next one on thrus by the nirse, then next week I start to do it myself. I had to sit in the clinic for an hour after the first dose to make sure no adverse reaction and then I was good to go.

 

[maryb]

So glad you've had it @justy, small steps

 

[AndyPandy]

That's great @justy!

 

[justy]

An update on my sub q gamma globulin injections.

I had to have a break for a while as the last shot - 3ml rapid push sub q left me unable to stand due to dizziness for three weeks and so sick...

So I started up again a couple of weeks ago at super low micro dose 1ml (165mg ml) x twice weekly, using a butterfly needle, tubing and a slow hand push. That was sort of ok - still felt nasty afterwards. The next week I upped it to 1.5 ml and same method for sub q injection and I have had a massive crash. Am so ill. I feel like I have the most intense flu of all time - all my joints and muscles hurt like hell, especially my small joints - fingers, toes, anlkles and wrists. I have a killer headache that goes on and on and I have the worst brain fog I have ever experienced.

I wonder if the even tiny dose could cause a herx? (I have Lyme and Bart) as after the first couple of doses I had burning foot pain as well...is it waking up my immune system or boosting it which is allowing the infections to come out more? or it could just be side effects...

I was told inititally this would wear off after a few shots, but if anything it is getting worse. Such a horrible thing to deal with after feeling so much more functional for the past two months after the glutathione and vitamin ivs a I did. Now back to mainly bedbound, unable to do much - feeling low and afraid to take more, but on the other hand wanting to push on if this is just normal or the Lyme reacting or something.

I have written to my Dr, and I also see them again in 3 weeks (if im well enough to travel)...Yesterday was honestly the sickest I have ever felt apart from when I ahd pneumonia and flu.

 

[maryb]

Oh Justy, so sorry for you. I feel the frustration, everything we do seems to make us worse when all we're doing is trying so hard to get well. Sorry I don't have any answers, don't know much about GG. I'm sure the clinic will give you advice. All I would say is if you want to be well enough to travel, should you bother with another injection now? Are you having more IV's when you get there?

 

[Valentijn]

I wonder if the even tiny dose could cause a herx? (I have Lyme and Bart)

Doesn't sound like a proper Jarisch-Herxheimer reaction

And if it's going to make you unable to travel, best to stop taking it before hand. I skipped/delayed one or two doses of antibiotics when I had to get driven down to Belgium, because the drugs made my hypotension so awful.

 

[justy]

why not, would you mind elaborating?

Doesn't sound like a proper Jarisch-Herxheimer reaction

I had intense flu like feeling, joint pain, headache, fatigue and feeling hot - its usually worse the day after the injection - I thought this was classic Herx reaction.