posted
I read a story somewhere (thought I bookmarked it but didn't) about something called I.V. IG and how it helped somebody with Lyme.
Have you heard of this and why aren't more doctors using this? Is it expensive? Do insurance companies not cover it or is it not studied enough or what?
Anyone know what I'm talking about?
-------------------- "~*~My smile hides my bite~*~." Posts: 506 | From N/A | Registered: Jun 2008
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Tracy9
Frequent Contributor (1K+ posts)
Member # 7521
posted
My LL neuro is looking into this for me. I am having an EMG done and punch skin biopsy. I honestly don't know a whole lot about it, but I know it is to treat neuropathy.
13 years Lyme & Co.; Small Fiber Neuropathy; Myasthenia Gravis, Adrenal Insufficiency. On chemo for 2 1/2 years as experimental treatment for MG. Posts: 4480 | From Northeastern Connecticut | Registered: Jun 2005
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posted
My daughter was on IVIG for 6 months, her EMGs and other nerve conduction studies showed that she had critical polyneuropathy with demeylinating features.
The treatment helped some of the "knife-like" pain in her hands and feet, but really her condition remained unchanged.
It takes 2,000 donors to make one bag of IVIG, and each bag costs the insurance company around $15,000.
There is a nationwide IVIG shortage, and there always will be, as it takes so many donors/bag.
Since my daughter was not having much of an impact from the treatment, we decided to stop it for those reasons,
why waste it when someone who really needs it could benefit.
I was praying it was going to be the magic bullet for my daughter, but I guess there is no such thing when it comes to Lyme disease.
Posts: 371 | From CT | Registered: Jun 2008
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posted
That sucks. I'm sorry it didn't work for your daughter. I keep thinking there has to be something that is the magic bullet. My heart is so heavy thinking about everyone with this horrible disease and it hurts so bad when I hear of kids suffering with the same disease I have.
It takes all I have to push through a day, all of the strength I have, every day is a struggle. I can't imagine children having to endure the same test of will that I fight with every day. They are truly brave. It sickens me to think any child has to suffer. It's unfair.
-------------------- "~*~My smile hides my bite~*~." Posts: 506 | From N/A | Registered: Jun 2008
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posted
I loaned out my Cure Unknown book, but from what I remember the IVIG is used to treat an autoimmune neuropathy caused by lyme.
It calms the immune system down and helps prevent it from attacking your own body. They use it in different autoimmune disorders.
They say that it is "molecular mimicry" where certain antibodies for borrelia attack the myelin covering our nerves instead of the bacteria by mistake.
posted
Well, that's not the one they talk about in the book...but I would THINK that ANY neuropathy caused by an autoimmune response would benefit from IVIG.
The problem is PROVING all this to the insurance company so they will pay $15,000.
The certain neuropathy in the book can be determined by doing a skin punch biopsy and EMG...and I guess with positive results, most insurances will pay.
posted
Went today to a Doc diagnosed with CIDP using EMG which may qualify me for IVIg.. One thing is that the underlying cause must also be sought out and treated.
I was in th room today with a guy who had been on it was going on IV Roc. and he said underlying cause even though IVIg made him feel a difference but again....must find cause...
Which leads questions like chronic or autoimmune lyme...
But there are other combination of modulators which are also mentioned...
posted
My husband has been treating for about nine months now with IVIG for his dermatomyositis/Lyme. It has definitely helped with the muscle wasting and muscle pain. The rest of the symptoms are hard to sort out as he is also doing a mixture of IV antibiotics.
At this point, I don't think the IVIG will cure the Lyme and coinfections all by itself or if it does it might take a long, long time (just like antibiotics). I do feel it is helping my husband's immune system reregulate itself. My husband was in a really bad place before the IVIG started. It's amazing how far things have turned around in the past nine months.
If you are having serious neuropathy or muscle wasting and can qualify with insurance, I think it is worth it to try it out.
Posts: 984 | From San Diego | Registered: Nov 2006
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djf2005
Frequent Contributor (1K+ posts)
Member # 11449
posted
one other thing to note, this therpay is successful sometimes when iv abx and other oral combinations have failed to produce result..
ive not heard it be curative, merely having the possability of being helpful in otherwise bleak cases.
good luck
ps- there is a llmd neuro in nyc who specializes in this tx. hes expensive and not the nicest from what i hear but good on this subject
derek
-------------------- "Experience is not what happens to you; it is what you do with what happens to you."
glm1111
Frequent Contributor (5K+ posts)
Member # 16556
posted
I was given IVIG for about 1 1/2 yrs. My head had gone completely numb and I was somewhat incoherent.
I had also been on oral antibiotics and IV rocephin for almost 4 yrs. I remember the cost for IVIG was around $5,000.00 per/tx once a month. I think it may have helped some.
I did need the antibiotics initially, but the thing that started turning things around was when I started getting rid of the parasites & worms. BIG FACTOR IN LYME DISEASE
-------------------- PARASITES/WORMS ARE NOW RECOGNIZED AS THE NUMBER 1 CO-INFECTION IN LYME DISEASE BY ILADS* Posts: 6418 | From philadelphia pa | Registered: Jul 2008
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posted
I went to see a Doctor Y yesterday. Does this sound familiar to anyone???? I wonder if the EMG is enough to prove CIDP or is a skin biopsy alaso needed?
glm how did you get rid of parasites and worms ABs?
Was you head spinning from IVIg?
-------------------- Raymond Leave the gun, take the cannolis Posts: 214 | From Rhode Island | Registered: Nov 2007
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I recived it for 4 months (paid out of pocket) as a trial treatment.
I was one of the ones it worked for.
6 months into treatment, after starting babesia treatment, I began burning...everywhere. It just got worse. I was on IV for 15 months, lost my gallbladder in the middle of hyperbaric, attained a resistant staph infection in my ear, then a fungus, rare one later once the IVIG treatment was stopped.
I lived on oxycotin, xanax and others. I now take the lowest dose as to not reap all hell coming off of them. Was able to go from 200 MG's of oxy a day to 20-40 to ease myself off.
I do not reach for my pills to get out of bed. I thought I would live like that forever.
I am not and will not..and thank god I won't have too.
YES, I improved GREATLY from my IV treatment and after 11 months of babesia treatment. IVIG though is what brought me back to life. I started working, unpacked a 2,800 SQ FT home by MYSELF, traveled home BY MYSELF. STOPPED HAVING MY HERXES. I had one more month of IV ROCHEPHIN then my picc migrated and we could not get insurance to cover IVIG. SO...I fell on my A!%!%#$ so hard...
A month ago, we started me back on IVIG. I am not dying anymore. It was so hard to feel so horrible..dying on the vine, then to get better then to be sent back to bedridden hell.
Thoose of you who know my posts over the last 2 years know how sick I was.
I am not that sick anymore.
Take your antibiotics.
Detox.
Look at your tests results and question everything, even the best of the doctors advice.
I did.
I use 3 LLMD's who well, I am lucky and blessed to see. 2 our western, one a natural doc.
Anyone with that crazy neuropathy, have a immune work up. Not just the CD-57 stricker panel. This is only one aspect to our all individual and distinct immune systems.
Anyone who goes to the physician who created this panel knows so MUCH about IVIG and CPID and what tests you need to see if you are a POSSIBLE canidate for this treatment.
2 months (sometimes longer, depending how long you have gone with this neurapthy and it's damage) should show you if the treatment is for you.
For me, the pain was my worst and last symptom that made life unbearable.
I am having a hard time right now, but I am up for my IVIG on Monday. I still am not downing pain meds.
I ran 2-3 miles a few times last week.
I am traveling to Orange, CT in 2 weeks to see a certain famous Lyme Neuro Mentioned in the Cure Unknown who discusses IVIG. I think in my case...it hits the nail on the head. I pray he get's it covered for me.
This is NOT everyone's answer, but I am so happy someone pointed me to this direction.
Feel free to contact me.
Jen
Posts: 111 | From San Francisco | Registered: Feb 2007
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posted
Jen, thank you so much for sharing your story and your experience with IVIG.
I began getting IMIG shots in my back a few months ago, but I had allergic reactions every time. I also herxed from them, and had worsened neuropathy. I did feel a little better though each time I got through the pain though! The pain would last about a week to 10 days, and then it would start to lift and I would see a tiny bit of improvement.
My question is though, did you receive steroids before you received an injection? My LLMD explained that since it is a blood product it is almost inevitable. He wrote me a prescription for Prednisone. I'm also wondering if the IVIG made you herx too?
Thank you again for sharing your story! I know it'll help many people.
Posts: 710 | From West Coast | Registered: May 2008
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CD57
Frequent Contributor (1K+ posts)
Member # 11749
posted
hi -- is IVIG used for poor immune systems? How often do you have to get it to benefit? Once/month? Once/week?
Posts: 3528 | From US | Registered: Apr 2007
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posted
My daughter did IVIG for several months, with no impact. I am glad it has helped some of you, though.
She also saw Dr. Y. I have heard of many Lyme patient seeing Dr. Y and being diagnosed or suspect of having CIDP. My daughters new neurologist believes she does not have CIDP, and is looking into other causes, since the treatment didn't work.
I think it's very interesting that so many Lyme patients have Demeylinating Polyneuropathy. Maybe a study should be done, if that's the case?
Posts: 43 | From NY | Registered: Oct 2008
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Marnie
Frequent Contributor (5K+ posts)
Member # 773
Many arthritic patients have high levels of IgG4 already present in their joints.
Ask your LLMD about interleukin-8.
IL-8 is a powerful chemotactic factor for neutrophils. Macrophages and endothelial cells secrete IL-8 in order to attract neutrophils and allow them to adhere to vascular endothelial cells. This helps the neutrophils migrate and enter the tissue where they are needed especially during inflammation and infection.
Our neutrophils (most abundant WBC) contain calprotectin which binds Ca and Zn.
HIF-1 is downregulating HO-1 (reduces inflammation) and
HIF-1 induction attenuates (weakens) interleukin-8 synthesis in human endothelial cells (not good).
HIF-1 also upregulates COX4-2 and "forced expression of the more efficient COX4-2 under normoxic conditions results in the generation of more reactive oxygen species and an increase in caspase activity".
Might work *if Bb was not able to rebuild its cell walls* that are damaged by those free radicals. Unfortunately, it can.
"Borrelia burgdorferi, the spirochetal agent of Lyme disease, is susceptible to killing by a variety of polymorphonuclear leukocyte (PMN) components.
Some are most effective against metabolically active B. burgdorferi. The abundant PMN cytoplasmic protein calprotectin, elevated 10- to 100-fold in inflammation, inhibits the growth of spirochetes through chelation of the essential cation, Zn.
Since the action of some therapeutic antibiotics depends on bacterial division, we investigated the antibiotic sensitivities of spirochetes in calprotectin.
In physiologic calprotectin, B. burgdorferi is not eliminated by therapeutic doses of penicillin G; in contrast, doxycycline is effective.
Calprotectin may modify the clearance of spirochetes at sites of inflammation.
TRPM7/ChaK1..TRPM7 is a channel that lets Mg and Ca (and Na) go in and out as well as functioning as a kinase (kinases transfers phosphate...not happening).
It appears the "G protein" activates transducin which closes the Ca-Na channels...this is what the WFL can do that we can't (without photon help).
Which is what we need to happen...close the Ca-Na channel.
This is a "catch 22" re: doxy because sufficient Mg (and Ca) are absolutely needed by our OWN antibodies to react to Bb's OspB (Osp A is downregulated once Bb enters us).
And I really don't like what the abx. do to our beneficial bacteria which use Mn to replicate...and thus "compete" with Bb for Mn.
Meanwhile...seriously consider a trip to Wally Mart and a purchase of Double Strength Glucosomine Chondroitin...3 a day with dinner.
Be patient...this is a slow process.
But...I believe you will...slowly...begin to notice a difference.
I don't think Bb can tolerate SO4 = sulfate (and/or iron).
[ 08. November 2008, 07:28 PM: Message edited by: Marnie ]
Posts: 9424 | From Sunshine State | Registered: Mar 2001
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posted
To answer some questions regarding my experience.
I did not herx very much at the time of recieveing the first 4 months. It was a progressive upwards thing for me.
IVIG does a multitude of things not only for your immune system and just "boosting" it.
It can regulate it, calm it down so it stops attacking itself. Like in my case it had attacked it self so much it left damage to my nerves. This showed in a nerve test.
Also, my IGg subclasses showed abnormality then went back to normal.
Do the search on IVIG. It was interesting, in the last 6 months I have seen over a 100 more postings then I did when I first researched it.
Remeber, it's not a magic bullet for everyone. Though if you are a good canidate, you will likely have a good response. My symptoms were similar to CPID symptoms.
This is discussed in the book the CURE UNKNOWN.
Have a immune work up along with a in depth nerve condution study if you have neurapathy that is hell. Or if you have immune compromising conditions. Lyme does not attack the whole immune. Parts yes, the whole no.
I had a rare blood disease that has to do with a weak immune, ITP stuck up by a virus as a 4 year old that put me in a hospital for 4 months.
This told on of My LLMD's that there may be something different about my immune and that it would more then likely develop autoimmune problems. That is what ITP is.
I have hashimoto's as well, like alot of us.
My neuropathy hell did not start like I said until 4-6 months into treatment.
The last time I did the thereapy (I don't do shots, I recieve it by IV) I did feel herxy though wich I think is because I was not on as much treatment and at a higher bacterial lode at that time.
Within a week though I went from bedridden relapse to working out. I will never NEVER stop this treatment. Not worth it for me.
Posts: 111 | From San Francisco | Registered: Feb 2007
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posted
I should start IVIg next week, I have anti bodies for one of the types of thyrodism that is link to hasimoto's plus EMG/NCS showed CIDP...I'm hoping ot will calm my immune system as two of my four subclaases of IgG 4 were below normal.
Anyone know about this? Also did it help anyone with his/her brain fog???? My main problem where my pain is is in my spinal cord...although I do feel it elsewhere, headaches in the morning.
Everything I read is either dtd 1996, 1998 etc through 2008. Anyone have more current info on this and where they are heading with treatment for this IVIg treatment? I'm one who believe's it times to pull put ALL THE STOPS TO TREAT OUR DISEASE AFTER ALL THEY DID FOR HIV patients who also got HIPPA aproved with stipulations about prexsiting conditions.
Hopefully it will help us who do show autoimmune markers I have read also chemo and stem cell can be an alternative to treatment. Anyone know about this?
I am fight with MET LIFE about diability because they don't know what 1)lyme entails 2)CIPD and other autoimmune diseases caused by it.
What amazaes me is that there is so much out there about mycoplams pneumonia, chlaymydia etc relationshiop to lyme AND AND realtionship to autoimmune diseases such as CIDP BUT who is deffending our cause, the people we pay allot of money to for treatment?
Also does CIDP effect gastointestinal system?
-------------------- Raymond Leave the gun, take the cannolis Posts: 214 | From Rhode Island | Registered: Nov 2007
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