posted
Mu son had two years of IVIG (I think 15 treatments total), every 8 weeks for two days at a time. They were covered by insurance. He noticed an increase in energy, but, unfortunately, his chronic pain, irregular sleep patterns and memory problems have not resolved.
When he started, he would get migraines and heart palpitations. His dosages were tweaked, the IV drip was slowed down and these things resolved.
Migraines are very common with IVIG.
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beaches
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Thanks surprise and handp. handp hope your son is doing better.
Anyone else have input? Thanks in advance.
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t9im
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Hi beaches:
Our daughter has just had her 5th treatment.
Her LLMD indicated it can take 6 to 7 treatments before she starts to see results. Treatment is two days every month.
Unfortunately the MD's office did some changes and she missed a month so I can't say if we are really seeing any benefits yet.
Side effects are the severe head aches. They have been lessening each treatment.
While she has Lyme and Bart this is for an immune deficiency which can be from the Lyme, Bart or a side effect from the long term meds like mepron.
-------------------- Tim Posts: 1111 | From Glastonbury, CT | Registered: Apr 2010
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beaches
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Thanks so much Tim for the post. I don't understand the "two days every month." That can mean 2 days in a row or one day every 2 weeks or other increments.
Wow, I didn't realize it could take 6/7 treatments to see results. That's a bit disappointing.
Thank you again.
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beaches
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up and hoping for more replies. Thanks in advance.
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posted
For me, I can’t go over an infusion rate of 60 units/per minute. There are different kinds of ivigg and different doses. For me, I found doing 3 days verse 2 days was better. I think I used gammagaurd. I did my infusion every 4-6 week in the hospital from 7am-7pm over 3 days. They gave me tylenol and benedryl before the infusion and if they didn’t I got a low grade fever. (I run low 96.7, so 99.8 is like high).
The infusion would start (benedryl has opposite effect for me, I become wired!) but I would pass out within an hour. They would wake me for lunch and I could barely feed myself, and then I would pass out and wake up about 30 minutes before the infusion ended. After the infusion was ok, tired, but ok.
I would do this for 3 days in a row. And I functioned the rest of the month normally. I would work full time, work out, go out, pretty much do anything I wanted. As the month got toward the end I noticed a huge different in my energy level, by week 6 I would become back to my lymie self, tired, etc. Also, all the numbness and tingling would come back, i couldn’t think as clearly etc.
Even though the infusions were SO hard to take, it was worth it for me, because I was functional all month and only sacrificed 3 days. It’s like magic.
But I was doing for “cidp” and insurance stopped paying after almost 2 years. I haven’t done it now for 2 years in July. In Sepetember we checked my auto-immune levels because I just feel so tired and sick all the time..and I am auto-immune difficient now.. Even though I had never been auto-immune before…
I guess it’s good because I can restart the ivigg…I just don’t know who i can get to write for me..my doctor can write it but insurance won’t accept her..and my neurologist won’t write for auto-immune..and it’s really hard to find a facility that can do the infusion at such a slow rate..and on on …so I am trying to figure out all this stuff..but it takes time and I work full time and feel crappy..
Any way I highly recommend it..look at the different kinds because I think gammagaurd worked so well for me but i know there are other brands that do other things..I in the SF bay area so if u know of anyone keep me posted.
Good luck!
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t9im
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Hi beaches:
Our daughter goes for treatment once every 4 to 5 weeks (depending on scheduling).
IVIG drug is Octogam.
Treatment is 2 consecutive days appx. 8 hours per day.
Infusion speed started at 90 units on the first treatment. Increased up to 120 on 3rd and 4th. We had the nurse slow this down down to 110 on the 5th treatment.
Main side effect is the migraine headache (brain capillaries swell) with vomiting and fever. Not sure of the odds of this happening but it does with our daughter. The side effect has decreased with every treatment.
To manage the headache she takes a steroid starting on the 1st treatment day, with Tylenol and Motrin.
This is a drug which is $8,600 / per treatment and requires pre authorization from the insurer. Then there is the separate fusion company & MD charges.
-------------------- Tim Posts: 1111 | From Glastonbury, CT | Registered: Apr 2010
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posted
If you recieve an IVIG...how would that affect a western blot test?
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surprise
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It totally affects a WB test, because you have donor antibodies inside you. Need to wait a full 8 weeks for donor antibodies to clear.
One way to help stave off side effects of IVIG: Hydrate, hydrate, hydrate before and after.
-------------------- Lyme positive PCR blood, and positive Bartonella henselae Igenex, 2011. low positive Fry biofilm test, 2012. Update 7/16- After extensive treatments, doing okay! Posts: 2518 | From USA | Registered: Nov 2011
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beaches
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Thank you so much for the replies. Smiles, thank you for your thorough answer. And good luck! I hope you can restart the IVIG soon through your insurance with a doc who will prescribe it for you.
Tim, thanks for the additional info. I've read that migraine from the IVIG can be brutal. Do you think it's best to have the infusion done 2 days in a row or once every 2 weeks? Have you noticed any improvements as of the 5th treatment?
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t9im
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Hi Beaches:
Both our LLMD and Immunologist are of the opinion she needs 2 consecutive days and it will take at least a year (she has an immune deficiency).
On improvements, for our daughter the jury is still out. I have had conversations with other parents (at the Fusion center) where their child has improved considerably after treatment(s). Some quicker than others. All have been on 2 consecutive day treatments.
On our daughter's first treatment due to the migraine (with vomiting, fever spike to 103, up all night with cold compresses, etc.) day 2 was a week after day 1 of treatment.
Now while we have seen some improvement in the last month but this may also be due to adding a 3rd med to her treatment protocol.
-------------------- Tim Posts: 1111 | From Glastonbury, CT | Registered: Apr 2010
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ktkdommer
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My 18 year old son did one high dose IVIG treatment last month without issue. He drank a lot the day before and during took motrin for potential migraine. He did a 5 hour drip at an infusion center. Insurance has approved 6 sessions of IVIG. Friday he will have his 2nd. He told the doctor he felt a lot better the 3 days after IVIG. He did not take any steroids. I would say his energy level is up consistently. He is being treated for immune issues after undiagnosed Lyme for 16 years but more importantly for PANS. I know to be patient and not to expect to much right away. Good luck everyone!
-------------------- Things are never dull. After 3 fighting Lyme, 2 are in remission. Youngest is still sick, age 22. He has new diagnosed Chiari Malformation and Ehlers Danlos Syndrome. Posts: 1366 | From Perrysburg, Ohio | Registered: Nov 2010
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beaches
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Thanks Tim for the additional info. BTW, your mailbox is full!
And thanks Kari for your reply. It's great that your son felt a lot better so quickly. I hope that continues.
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beaches
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up for more replies...
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Sammi
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beaches, do you have an immune deficiency?
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beaches
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Long story Sammi. Will send you a PM.
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beaches
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up!
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beaches
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I understand that IVIG helps the immune system ward off viruses and bacterial infections but I am wondering if anyone here actually feels better and functions better with this treatment.
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