I tested low about 2 months ago and that was the first time I tested it. Could this be something that may be slowing down my treatment or making me feel worse?
I have Lyme, Bart, a little bit of Myco. I also have viruses like Parvo and slight Mono.
[ 05-27-2009, 11:08 AM: Message edited by: Buster ]
Posted by Buster (Member # 19472) on :
^
Posted by luvdogs (Member # 9507) on :
I have low IgG - subclasses 1 and 3. I was told that I would benefit from this. My overall globulins are low also. My 2 and 4 are also on the veryh low end of normal.
No vaccinations for me any more!
I guess that is one of the confirmation tests that insurance companies demand - they give you vaccines and see if they "stick".
I know many others get it bc of nerve conduction tests done on the legs.
It looks like there are two types of people that benefit from this treatment.
I, too, would like to know more.
I hae tried boosting my IgG with colostrum, IgG products as an alternative to IgG.
Posted by Buster (Member # 19472) on :
I'm going to talk to my doctor about it this week. I also have vasculitis (diagnosed from a spect scan) I have heard IVIG can help that.
Posted by Buster (Member # 19472) on :
I talked to my LLMD for a little over an hour last night. We are going to go ahead and move forward with the IVIG.
Apparently there is alot to do in order to have insurance pay for it or atleast cover half of it.
My LLMD believes this is most likely the sole reason I am not improving like others are on antibiotics/heparin/supplements/detox.
After I got to thinking about this, I would be willing to guess that many of us on this board that have drenched ourselves in antibiotics for years, maybe could have low gammaglobulin levels.
I talked to a girl that had been on IV antibiotics for 3.5 years with very very little improvement. A doctor started her on IVIG, within about 2-3 months she is now walking, going to school, feeding herself, and feeling much better.
COULD THIS BE ANOTHER PIECE OF THE PUZZLE???
Posted by sparkle7 (Member # 10397) on :
Do a search of Lymenet (click on the search link & enter keywords). This subject has been discussed here on a number of occasions.
Posted by davidx (Member # 8326) on :
I have been on IVIG for a few months and may have noticed some improvement for the first time in awhile. I am keeping my fingers crossed for the next few months as I remain on it!
Posted by KimDC (Member # 20699) on :
davidx,
Did your bloodwork show that you were deficient in IgG? Which subclass(es)? Is your insurance paying for IVIG? I am only slightly deficient in IgG1 and am doubtful that my insurance would pay for IVIG.
Thanks, Kim
P.S. Buster - I do think that this is a piece of the puzzle for chronic/unresolved lyme. But, it's a chiken and egg question. Has the long-term battle with lyme and co's impaired the immune system or has the impaired immune system prevented the body from healing?
Posted by LymeCFIDSMCS (Member # 13573) on :
I have IgG1 subclass deficiency. My understanding is that IgG1 relates to viral involvement, i.e. that I can't fight off viruses, but I'm not totally clear on this so if anyone can explain more that would be helpful.
I took have been taking natural immunoglobins and goat colostrum. They are somewhat helpful.
Buster, I'm curious if the girl you're talking about had any viral involvement or coinfections? What was her diagnosis -- Lyme?? Did she have a typical lyme presentation?
And DavidX, you too -- do you have viral involvement or coinfections? How has the IVIG helped?
Posted by Parisa (Member # 10526) on :
My husband has been on it for about a year and a half and it has helped him.
Posted by davidx (Member # 8326) on :
I don't think my bloodwork showed that I was deficient in IGG. I am dealing with neuro issues involving the nerves which is why I am on IVIG.
The IVIG is very expensive and my insurance has paid for some of the treatment and is "in process" on the rest of the claims. I haven't been denied yet so hopefully I don't run into that situation!
I do have coinfections...babs, bart, etc. Was treated with all sorts of antibiotics--oral and IV but the nerve issues have not resolves which is why I am on IVIG.
Posted by Buster (Member # 19472) on :
Well, my total IVIG count is down and 2 of the subclasses.
I still don't see this doctor for another few weeks to talk about it. Most of my symptoms are neuro. (Paralyzed GI tract, all muscles are very tight and do not ever relax, spasms, sleep is nearly impossible, and more...)
Posted by karenl (Member # 17753) on :
I am low in subclass 3. I was taking IGG 2000 daily and it also helps a little.
davidx, did you get herxes with the IVs. I am afraid that it could make bad herxes.Did you start initially with a low dose? I have bad neuro vibrating. Did it help for the neuro? How many did you need? Karen
Posted by Buster (Member # 19472) on :
From what I have been told, it can make you herx for about a day from several other lymies I have talked to. Every now and then, some people feel better right after them...
Posted by Parisa (Member # 10526) on :
My husband had herxes. The first treatment was the worst. Every treatment after that (he gets it once a month) the reaction was less and less. Now he has very little down time due to IVIG treatment. We didn't see any real progress until about four months out. If it works for you, it can be a big tool in the arsenal.
Posted by davidx (Member # 8326) on :
Karenl-
I do not herx from the IVIG but then again I do not think I have had herxes from any lyme treatment. I am being treated with IVIG not for lyme but because of the neurological damage. No one can say whether or not it's auto-immune but this treatment has the potential to help. The LLMD and neuro both agree that I should be on IVIG even though they look at things differently (neuro thinks post lyme auto immune and LLMD not so much). I don't really care who is right or wrong. I simply want to get better.
The initial dosage from what I remember is 2g/kg spread out over 5 days. From there your doctor will decide what to do. Although I am on a modified schedule this is approx the dosage I receive.
I don't know how long I will continue for. I go for many different tests periodically to check on things but I just don't know at this point. Hopefully I get all better and can stop some time!
-David
Posted by karenl (Member # 17753) on :
David, thanks for responding. Hope this treatment helps you to recover. I would like to try it but need to find a physician near by. After your IVs you can take the IGG 2000. It is a powder and helps. I think this treatment has potential. Wish you the best. Karen