I have been a lurker here these past 5 years and decided to stop all that and join up. That being said, here is my question:
Has anyone done IVIG and had good positive results? My insurance will not pay despite my first appeal. I shall keep after them on that and any suggestions to help with that would be appreciated. In the meantime, I will bite the bullet and pay out of pocket. Not an easy thing to do, but if will put me over what seems to be my final hurdle I will suck it up.
My doc states that there have been clinical trials done and it was successful enough to be considered his first choice to proceed given my situation. Yes, I have one low immunuglobulin value. don't have it in front of me but will furnish if anyone has any knowledge. If anyone has access to those clinical trial results, I would love to get my hands on them to help with the appeal also.
I have tried a google search and have been unsuccessful at finding out anything relative to lyme disease. I have also tried a search here and while there is enough info to help me understand what it is supposed to do, I am wondering if anyone in this great big support group here has more info.
Thanks ahead of time for all your help!!!!!
Posts: 132 | From SE Pa | Registered: May 2006
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posted
Let me take a giant stab in the dark and say your doctor is a nuerologist in CT by the name of Dr. K
Posts: 559 | From Cary, NC | Registered: May 2006
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posted
Here's my advice, make damned sure you have autoimmune lyme, Or, make damned sure the IVIG has very high levels of antibodies against Borrelia Burdoferri, Bartonella, and Babesia.
Posts: 559 | From Cary, NC | Registered: May 2006
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He just seems to feel that since I am a "non-responder", or at least a good candidate for relapse due to a sluggish immune system, that IVIG might help. What does IVIG due that it, according to the above opinion, requires one to have autoimmune lyme. I do not appear to have that.
I also am unaware of a way to determine that the IVIG has antibodies to Bb, bart, babs, etc. Lymescience, if this is info that is not something in your opinion that should be displayed on this forum, please private email me with it. Otherwise could you explain a little bit more?
Posts: 132 | From SE Pa | Registered: May 2006
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Foggy
Frequent Contributor (1K+ posts)
Member # 1584
posted
Do a search for past posts. I recall from some posts that's it's been hit or miss and not a panacea.
I couldn't justify the risk:reward ratio if insurance wouldn't cover.
Posts: 2451 | From Lyme Central | Registered: Aug 2001
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Marnie
Frequent Contributor (5K+ posts)
Member # 773
posted
From what I have read, it may not be a one-time thing...you may need additional treatments...and they are VERY expensive.
Antibodies work by locking onto the cell walls of most bacteria. So, the cell wall deficient and the cyst forms are not knocked off by antibodies.
We need Bb to remain in the cell wall form or even the cell wall deficient form which can be destroyed by other means.
Since there are so many strains of Bb (http://jcm.asm.org/cgi/content/full/39/7/2500) and it is capable of altering its outer wall gene expression, this is an ongoing battle as our own immune keeps trying to make the right "key" to fit the "lock". Most of the "keys" are damaged (fab portion) because it takes Mg and Ca to make HEALTHY antibodies. Restoring those minerals restored the "health" of our own antibodies specifically made to fight Bb.
Here's the documentation on the above:
Characterization of the physiological requirements for the bactericidal effects of a monoclonal antibody to OspB of Borrelia burgdorferi by confocal microscopy.
The bactericidal effect of Fab-CB2 is not dependent on the induction of spirochetal proteases but
is dependent on the presence of Ca2+ and Mg2+.
Supplementation of Ca2(+)- and Mg2(+)-free medium with these cations restored the bactericidal effects of Fab-CB2.
The mechanism by which a Fab fragment of an antibody destroys a bacterium directly may represent a novel form of antibody-organism interaction.
PMID: 9125579
A ``novel form of antibody-organism interaction?'' I don't THINK so!
E. Required by immunological process. Magnesium, immunity, and allergy: Mg is required for several steps of immunological reactions 1. Lymphoblastic transformation, a prerequisite of secretion of antibodies by lymphoblasts, requires Ca2+ and Mg2+ 2. Mg is required for synthesis of proteins, immunoglobulins included 3. Antibody-induced complement activation is Mg dependent 4. The antigen-immunoglobulin-complement reaction induces degranulation of the mastocyte
Arch Phys Med Rehabil. 2003 Sep;84(9):E34-E35. Related Articles, Links
Return of muscle strength and function after use of intravenous immunoglobulin for Lyme disease-associated acute demyelinating polyneuropathy.
Patient: A 58-year-old man with babesiosis and Lyme disease.
At follow-up 8 weeks later, muscle strength had fully returned.
Discussion: This case illustrates that Lyme disease-associated demyelinating polyneuropathy may be treated with IVIG. The potential use of IVIG in this population is based on its efficacy in those with acute demyelinating neuropathy of alternative etiologies. Conclusion: IVIG can be considered as a treatment option for demyelinating polyneuropathy associated with Lyme disease.
PMID: 13680780
The above link no longer works which is very puzzling since it was a ``cut and paste'' on my part. If whoever is reading this has access to a hard copy of this journal, I urge that person to find it and copy it. The Sept. 2003 issue of that journal may be found in hospital or medical school libraries.
Immunoglobulins are very expensive (I believe they have to be obtained from MANY donated units of blood) and are ``reserved'' for very serious life threatening situations such as flesh eating staph infections which kill in a matter of hours.
But I still believe in Freedom of Information.
Now...about those cell wall deficient forms...here are some old class notes I got off the internet years ago. Since this looks to be "basic" microbiology, I will assume it is accurate:
How to lyse a gram-negative bacteria (e.g. E. coli):
1. Add a chelating agent of divalent metals (e.g. EDTA) to disrupt outer membrane lipopolysaccharides
2. Add lysozyme to break up peptidoglycan layer
3. cell wall is now structurally weakened and cannot protect the protoplast from
osmotic shock
4. osmotically shock the cell to disrupt protoplast and release cytoplasmic contents (i.e. high osmotic shock using sucrose solution; low osmotic shock using pure water),
5. or use mechanical shear/cavitation (French Press, Menton Gaulin press)
Keep in mind that this is talking about a bacteria that has a LPS (sugar) cell wall, not UNIQUE Zn+cholesterol cell wall like Bb has!!!
Still...once the layer has been penetrated, the other things will help out to finish the job. I suspect even changes in barometric pressure are helpful, but I can't prove it.
I don't know why the cell wall deficient forms are in the greatest numbers. I remember a long time ago, Bowen lab said they see mainly the CWD forms. Are they the offspring who have not yet formed their cell walls or are they "moms" who have shed their cell walls to "feed" the babies?
Posts: 9481 | From Sunshine State | Registered: Mar 2001
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liz28
Unregistered
posted
First tell the board what you have been taking for the past five years that didn't work. It may be that an obvious antibiotic has not been added to the mix yet. It's hard to say anything about alternative treatments until you know which mainstream ones have been used--mainstream being a relative term here.
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liz28
Unregistered
posted
First tell the board what you have been taking for the past five years that didn't work. It may be that an obvious antibiotic has not been added to the mix yet. It's hard to say anything about alternative treatments until you know which mainstream ones have been used--mainstream being a relative term here.
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I had done a search here, but it appears that there are mixed results from the few who have used this. I guess I shouldn't have expected anything but that, given the nature of this darn disease.
I am aware that IVIG is NOT a cure. In my docs' experience after 2 or at most 3 treatments results will be seen--if they are going to be seen. I will be doing IV doxy, tinidazole immediate prior to and after with the hopes together I will get a needed boost to kick this once and for all, or at least a remission of sorts to rest my body.
Marnie, I have always been amazed at the chemical knowledge you have. Unfortunately I have a hard time following. My background in computer programming and business/logic takes me down a few levels of the chemical processes and then I just get lost. Thanks for the research article. I am a big fan of the magnesium supplementation! Has helped me alot, even though I have only been able to take oral mag.
Posts: 132 | From SE Pa | Registered: May 2006
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posted
I will gladly fill in the past 5 years of treatment, but remember you asked!
started with doxy and biaxin to reduce germ load. Followed with 5 months IM Bicillin and tinidazole. Many months of tetra and tetra w/zith.
Rifampin with something, can't remember what. had to stop due to side effects. Mepron with zith for 2 months only cuz liver enzymes when sky high. took 5 weeks off, enzymes went back to normal within 2 weeks. then ketek pulsed with tinidazole. then doxy, biaxin pulsed with tinidazole. then cipro and bixin pulsed with tinidazole.
I think I've been pretty thorough mixing up abx to cover cell-wall, CWD and cyst, plus bart and babs neither or which I have ever tested positive for.I am aware that the tests are often meaningless, hence treatment for both. Have not used artemesia but I do not show symptoms of babs.
Also saw an alternative doc early on so I take Dr zhang's allicin, CoQ10, multivitamin with lots of B's, Magnesium. Occasional, Alpha lipoic, Grape seed extract. Took transfer factor for a while and a mushroom immune system booster when I'm on my off days of pulsing.
I have asthma and some food allergies so am careful about which supplement I can take.
Posts: 132 | From SE Pa | Registered: May 2006
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posted
IgA deficeincy is common in chronic lyme disease, auto-immune diseases, narcolepsy, celiac . . to name a few that I have run across. Its important to check antibodies status to pneumonia etc and be vaccinated accordingly.
Taking a low dose maintence dose of abx as well as getting immediate medical care at the onset of illness is good.
Most in my family have an IgA of 8 - 10, at that level we would be insurance eligible for but would not consider IVIG.
Of more concern is getting rid of the ASO titers that are over 550, they are impeding all progress.
Just a few thoughts . . Elle
edited - it amazes me how bad my spelling has become or was it always this bad and my proofreading has become better?
[ 26. May 2006, 06:43 PM: Message edited by: elle ]
-------------------- When I feel blue . . . . . . its time to take another breath Posts: 296 | From East Coast | Registered: Aug 2005
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If it was determined that my platelet count was very, very low and my spleen was unable to be removed, then I wouldn't have a choice . . . I have an elderly friend that gets these IVIG weekly in a series of 4 weekly "treatments" every few months to maintain life.
This is not a proceedure that I would casually voluteer for.
My personal opinion only . .
-------------------- When I feel blue . . . . . . its time to take another breath Posts: 296 | From East Coast | Registered: Aug 2005
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posted
My friend, you never treated Babesia, a common mistake:( If you don't treat ALL the co-infections, you can't truly tackle the Lyme. Also, IV Levaquin is the drug of choice for Bartonella, and I might add, you never took that. Also, its a good idea to add a second drug with a Low MIC for Bartonella to the IV levaquin as it usually takes two drugs to kill that bug, one drug simply won't do the trick, it will only make it stop growing, whereas you would rather have it dead.
Posts: 559 | From Cary, NC | Registered: May 2006
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posted
Hi- I have had about 6 IVIG treatments ( had one last Friday) not for Lyme but for my low platelets. I haven't noticed it helping the lyme any and it only helps me with my platelets for about a month or so. It is VERY expensive.. my insurance statements show it costing about 14k per treatment.. I don't feel particularly great or anything after getting it.. just an opinion, although I guess it can work miracles for some people..
Posts: 37 | From NJ | Registered: Feb 2006
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Just a question though--tried to treat babs, mepron did quite the number on my liver. I am assuming malarone would do the same, albeit at a slower rate. Artemesin is in the pea family, a legume, of which I am allergic to. Not sure if it would trigger a reaction and do not want to find out either. Besides, artemesin without mepron is not advised. I do NOT have any symptoms of babs.
Also, according to the Dr B or per Scott's recent notes from one of the conferences he attended, he states that if one relapses quickly after stopping abx, one probably has untreated co-infections. I had to stop all abx after the mepron for 6 weeks. I did have some symptoms return but slowly over that time. This leads me to agree with my doc that co-infections are probably taken care of.
I hesitate to say that with 100% certainty because my husband had babs. Since I know we were infected within the same 6 week period, chances are good that I may have been exposed. He, however, showed a positive result on his MDL test. Mine never showed anything but negative despite test after test there and at Igenex.
that being said, I thank everyone for their input. It always helps to have a second set of eyes to see if someone misses anything.
I want to trust my doc's opinion. He was doing IM Bicillin before I saw much discussion of that on this board. But, at the same time, one just doesn't know with this disease.
Anyone else have their two-cents to put into the mix. Wish I had a crstal ball to solve this one. Heck, I would of used the thing 10 years ago and never had to have this wonderful disease.
Posts: 132 | From SE Pa | Registered: May 2006
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posted
Hi Gardenoflyme, I think you and my husband are seeing the same doctor and he seems to think that the IVIG (didn't know it was called that) is somehow a great thing!
When my dh was in the office getting his IV dressing changed, the doctor came in to ask if he was the one interested in the gamaglobulin. My dh said he was and asked about the cost. The office guy who does billing said it was $1700.00 a week.
I was hoping to read on here better reports as to the success rate.
At this point, hubby is on the IV rocephin with zithromax and some other one (darn, can't remember) . . . he just started so we need to wait and see how it goes.
How long should it take to have an idea if a treatment is working?
Posts: 160 | From Abington, PA, USA | Registered: May 2005
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posted
Hi Danser. Yes, I believe we do have the same doc. Glad your DH finally got his PICC line. I think I am also supposed to get one soon, but it has been a week since my last visit and I've not received a call from their office. I would also be getting the IVIG one week per month. At least that is what it sounds like. Who knows for sure?
My understanding is that 2 or 3 cycles would be sufficient IF it is going to help. I guess time will tell.
Hopefully there will be a few more from this board who may come along with their input. It is so difficult to know which road to take when offered more than one.
Good luck to the DH. May the IV help him with his symptoms!!
Posts: 132 | From SE Pa | Registered: May 2006
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I have been on IVIG now for over a year. I do 10grams every other week, sometimes more.
I have noticed that it helps with stamina and energy. There is no doubt in my mind that it has helped me, but it has not been a miracle cure by any means.
In my case, I tested postive for one type of immune deficiency.
If you are looking for "the answer" or a cure, I'm afraid it does not offer that, but it does help the body fight.
Anneke
Posts: 364 | From California | Registered: Sep 2005
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