-------------------- Suspected Lyme 07 Test neg One band migrating in IgG region unable to identify.Igenex Jan.09IFA titer 1:40 IND IgM neg pos 31 +++ 34 IND 39 IND 41 IND 83-93 + DX:Neuroborreliosis Posts: 5850 | From Kentucky | Registered: Dec 2008
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sutherngrl
Frequent Contributor (1K+ posts)
Member # 16270
posted
I think for some of us with LD that maybe one part of our immune system is already "too" boosted and possibly needs to be calmed down.
Thjs is just an idea I have formed due to my own experience with lyme treatment.
It might work for some.
Posts: 4035 | From Mississippi | Registered: Jul 2008
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dmc
Frequent Contributor (1K+ posts)
Member # 5102
posted
ya think $5000 a month expensive for Tigecy IV?
"A single infusion of IVIg may cost about $3000 for a child to $10,000 for adults. For a child the cost is lower as a small IVIg dose is used. If you have insurance you will see the cost of infusion may go to 100,000. "
Posts: 2675 | From ct, usa | Registered: Jan 2004
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Hoosiers51
Frequent Contributor (1K+ posts)
Member # 15759
posted
I would love it if it was readily available, like Vit C infusions (ha, I can dream), and we could all just try it to see what happens.
If I had to guess what holds people back....it would be the hassle of getting it approved (insurance companies have strict guidelines for who can receive it and who can't), and the fact that there is uncertainty/risk, considering it's a blood product.
And maybe also the fact that it seems to help some and not others, and like IV antibiotics, it seems to be a slow road for some people, not an immediate fix.
Posts: 4590 | From Midwest | Registered: Jun 2008
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IckyTicky
Frequent Contributor (1K+ posts)
Member # 21466
posted
Who the heck can afford that! No wonder nobody can get better. My gosh..
-------------------- IGM: 18+, 23+, 30+, 31+++, 34+, 39IND, 41++, 58+++, 66+, 83-93IND IGG: 31+, 39IND, 41+ Also positive for Mycoplasma Pneumoniae and RMSF. Whole family of 5 dx with Lyme. Posts: 1014 | From Texas | Registered: Jul 2009
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Hoosiers51
Frequent Contributor (1K+ posts)
Member # 15759
posted
I know I talk about LDN all the time....but from my experience, it does seem to help the immune system. I do it in conjunction with antibiotics.
www.lowdosenaltrexone.org for info on why it works, prescribing info, etc. This stuff is cheap! I pay like $30 a month.
Posts: 4590 | From Midwest | Registered: Jun 2008
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IckyTicky
Frequent Contributor (1K+ posts)
Member # 21466
posted
Thanks Hooisers
-------------------- IGM: 18+, 23+, 30+, 31+++, 34+, 39IND, 41++, 58+++, 66+, 83-93IND IGG: 31+, 39IND, 41+ Also positive for Mycoplasma Pneumoniae and RMSF. Whole family of 5 dx with Lyme. Posts: 1014 | From Texas | Registered: Jul 2009
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karenl
Frequent Contributor (1K+ posts)
Member # 17753
posted
If you read the label of IVIG I remember that bood infections are listed as a contraindication.I know this label was the reason I decided against the IVs and was gradually taking IVIG 2000 powder.
Posts: 1834 | From US | Registered: Oct 2008
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Pinelady
Frequent Contributor (5K+ posts)
Member # 18524
posted
I found these article useful for those that would like to delve into the information.
They explain some details as to why we can't make progress.
I now understand why the college kids have to get by on a pittance for their research.
They either have to lie and state directive as something else or anything to get funds to work.
Research has steadily declined since this started.
Soon none of them will have a right to look for anything....And we the people will be stuck in the muck.
We will get no where until we change this. By law those that already have patents are silenced.
-------------------- Suspected Lyme 07 Test neg One band migrating in IgG region unable to identify.Igenex Jan.09IFA titer 1:40 IND IgM neg pos 31 +++ 34 IND 39 IND 41 IND 83-93 + DX:Neuroborreliosis Posts: 5850 | From Kentucky | Registered: Dec 2008
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posted
I've been on IVIG for some time now and for me it seems to help regulate my immune system rather than boost it. My body seemed to be attacking itself and was "too boosted" (auto-immune?) and the IVIG seems to have stopped that process and has allowed my body to heal for the first time since i began treatment.
It is expensive but you need to check with your particular insurance to see what they cover and for what conditions. It should just be a section in your policy that you can read.
IVIG is basically just gamma globulins (antibodies).
-------------------- Same nightmare, different day! Posts: 401 | From East Coast | Registered: Nov 2005
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lymetwister
Frequent Contributor (1K+ posts)
Member # 19590
posted
And I on the other hand had a 5 day course of IVIG and it nearly killed me. It sent me into a downward spiral that would take a year to come out of.
In the end, I don't think it did me a bit of good and I would never touch the stuff again.
Gary
Posts: 1227 | From District of Columbia | Registered: Mar 2009
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canefan17
Frequent Contributor (5K+ posts)
Member # 22149
posted
Doesn't Xymogen have a product similar to this?
sutherngrl
Frequent Contributor (1K+ posts)
Member # 16270
posted
What Davidx said, that his body seemed to be attacking itself. Thats the way my body felt for the whole first year of my lyme treatment, where I had absolutely no improvement.
Then for reasons that would take too long to explain, I went on very strong steroids for 3 weeks. Don't know if you can compare steroids with IVIG; but basically I feel that it slowed down the attack on my body.
After that I re-started treating for LD and for the first time it seemed like the antibiotics started to work. 8 or 9 months into the second year of treatment I started improving. Now 2 years plus 1 month in, I am beginning to really see a big change.
I guess my point is that some of us need our immune system regulated either up or down. As bad as most ppl think the steroids can be, I believe in my case they helped regulate my immune system in the right direction.
Vitamin D, when it reaches a very high level......upper normal level around 80 to 100, acts also as an immune modulator.
Posts: 4035 | From Mississippi | Registered: Jul 2008
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