my IVIG (IV gammaglobulin therapy) seems is finally starting to work after 3 and half months.

my immunologist said at least that long to see any results, six months for adequate results, a year for good results.

my LLMD feels the IVIG will make the antibiotics much more effective since my immune system will be producing enough antibodies to allow the abx to do their job with greater efficiency.

and feeling i may have a good summer coming. keep you guys updated on how that works out.

probably be on the IVIG for a year.

the previous infusion made me herx like crazy. i couldn't believe it.

it was very weird. must have been killing spirochetes by the induction of antibodies at a replication period.

also rocking a course of pulsed rocephin. only in week 3 of, if effects are good, probably a couple month course.

keep u updated.

cheerio

Any oral subsitutes for ivig?

Your take on colostrum, and if so what brand is best, from what country? I feel this is an infection hazard, since Bb can cross many barriers.

One or more honey bee products might have some kind of ivig in it, I vaguely recall.

Thanx for post update and your opinion on what I mention.

Good Luck,

it can be given in booster shots but can not nearly reach any semblance of an adequate level as to make any mark on an impaired immune system.

i don't know much to anything about colostrum or bee venom but it has close to zero proven efficacy in the medical community.

no doctor would prescribe colostrum or bee venom for an immune impaired patient.

gammaglobulins are a filtered blood product made up of protein antibodies.

colostrum is basically a milk product. it may have some beneficial proteins but has never been proven to have any benefit for the immune impaired.

i have no comment on bee venom. i view most if not all nutritional supplements as basically worthless.

I am glad you are seeing results already. You give me encouragement as I am going to have this therapy also.

Any additional info would be great. Did you have any problems wtih you ins. co?

I am not quite comfortable with this yet I guess regarding the blood component of it.

my immunologist the pharmacology company he uses are great. in the past, before i used them, they accepted what ever the insurance would give them and charged the patient nothing.

but the insurance companies threatened them with a lawsuit for price fixing. so i pay what i "can". which is not much at all considering the price of the medication.

i do it at home every third friday. the first few times it made me really sleepy. the time before last it made me REALLY sick. my LLMD believes that it may have enduced a herx. anyhow...

this last infusion was the first one that went down with no hitches and i actually felt better after.

the only other person i personally know who used IVIG (for a completely different reason) said it took 6 months to see any effect. i am at three full months now. and it also cleared up my sinus infection as well.

i look forward to seeing how effective it continues to be.

the person i mentioned was on the product from 8-18 years old. doctors thought he wouldn't live. he is doing great now. what he had was worse or as bad as Lyme. he literally couldn't breath.

serious stuff that Mayo and others couldn't figure out. his mother who is nurse figured it must have been triggered by his immune system, and voila!

i have absolutely no concern with the blood product. my immunologist is one of the pioneers in the IVIG field and he never sees problems.

if you have any other questions just holla!

Is you Immunologist LL, or just progressive and open minded? Was your immune pannel abnormal? With the steep cost of IVIg, many MDs are loath to use it without diagnostic proof, and insurance cos don't want to pay for it.
Perhaps other LLMDs will take notice of this trend?

A neuro I saw said he wanted to use a PICC for 2-3 months of bi weekly IVIg. He's thinks a higher dose is more efficacious. His specialty is reinnervation with long-term IVIg, but he's intrigued by the application for Lyme. He claims IVIg can "convert" malfunctioning abs and boost the Immune system simultaneously. I question if this will be efficacious in order to eradicate bb.

thanx zip

I agree w/ most of what you said

I wasn't thinking of bee venom, or mellitin, the latter's main functional constituent for Bb.
I thought some other products contained some kind of igg I'm probably incorrect on this.

ask you ivig doc if Magnesium oral, preferably i.m. form is compatible with the igg; Ca might also be needed.

both Mg-chloride and Mg-sulfate can be given parenterally. ask your doc which one might be most compatible with the igg.

commercial and research lit. use Mg-chloride in one or more steps when isolating either Bb itself and/or antigens and/or antibodies.

no time to go hunt for the material on this, but a search on techniques at commercial or research sites having to do with the isolation and identification of Bb WILL show MgCl being used.

my immunologist is, so i've been told, one of the pioneers in IVIG usage.

his speciality is both pediatric AIDS and primary immune deficiencies....

but he has worked with Lyme patients and is friendly both in the collegial and personal sense with Dr. L in NY and the neurologist Dr. K in CT who is also using IVIG for Lyme.

he is extremely open minded. an academic and full time professor at a major teaching college in NY and has an international reputation for his early work with AIDS in the early 80's.

as a bonus he is a hell of a nice guy.

in and of itself IVIG will not cure or remit Lyme. Dr. B has written very briefly about that. it will certainly promote the immune system and in synchronocity with abx be very effective.

at the chronic Lyme state there are simply too many spirochetes and too great a immune suppression for the added protein antibodies from IVIG to successfully dwindle the bacterial load. abx are necessary.

my tests were abnormal but not extremely abnormal excpet for t cell mitogen lymphocyte testing. studies at westcherster medical in the 90's by some major Lyme docs found that in vitro Lyme dose attack and lower the t cell mitogen lymphocytes.

but by insurance standards the latter is only good supplemental evidence since there is no proof of the efficacy either for IVIG for Lyme or IVIG to bring up t cell mitogen levels. hopefully as the bacterium load diminishes the t cell mitogens will increase . we will watch it.

my doc may have been able to appease the company partially with his reputation. but he did tell me that the criteria for IVIG has gone up and the insurance company is asking for more solid testing evidence.

at the six month mark i will be reviewed by the insurance company and the immunologist has made it pertinant to me that i must get secondary evidence from a neuro to keep getting the IVIG.

i have a Lyme neuro but unfortunatley they don't return calls!

i'll update again at about the six month point. i'll be on IV rocephin pulsed and treating for babs for another 3 months (3 so far) concurrently over that time.

quote:

---

Originally posted by pq:

I wasn't thinking of bee venom, or mellitin, the latter's main functional constituent for Bb.
I thought some other products contained some kind of igg I'm probably incorrect on this.

commercial and research lit. use Mg-chloride in one or more steps when isolating either Bb itself and/or antigens and/or antibodies.

no time to go hunt for the material on this, but a search on techniques at commercial or research sites having to do with the isolation and identification of Bb WILL show MgCl being used.

See Marnie's posts on Mg and antibodies for expositional overview on antibodies and Mg.

---

from the little research i did concerning marnie's philosophy on magnesium i have to disagree with her.

she primairly based it on a patent (not a study but a ten year old patent) by an Italian doctor who never indeed showed efficacy for its use beside a couple of anecdotal testimonials on his behalf.

if the theory held very, very high doses IV Mg would be needed over a long period of time, which could be beneficial but can also of side effects concerning internal organs.

dr b suggests time released magnesium oral or IM in his guidlines but not as immuno-modulator. check the guidelines, i don't want to misquote him.

again i'm no chemist.

Mg is still a very good neuromuscular and anti-inflammatory but i haven't to my limited knowledge seen any evidence as an immuno-modulator.

an expert nutritionist who knows the immunes sys., or nutritional biochemist who is into Mg and other minerals will be able to tell you about the uses of i.v. Mg, and, in particular, Mg-chloride. pre-1960s lit, back to the turn of the century would contain most of the pertinant findings.

good luck

"at the six month mark i will be reviewed by the insurance company and the immunologist has made it pertinant to me that i must get secondary evidence from a neuro to keep getting the IVIG."

Appears the Neuro will want a brain scan or EMG to help bolster the validty for continued IVIg use. My Neuro felt that Lyme neuropathy supported by EMG would augment his support for IVIg.

BTW-what abx are you on?

I've been on IVIG for over two yrs now, with excellent results

No longer have the serious sino-pulmonary infections, and my perpherial neuropathy seems to be completely under control--at this time.

Nero-muscleur( moderate muscleur weakness on testing) issues seemed to have resolved also--this was the latest and last symptom to resolve.

Few things that I can add to the party here:

I just survived a review per the usage of IVIG by my insurance carrier---since I had already had the EMG, with muscle and nerve biopsy done--we just resubmitted this testing

Why?

Nerve regeneration doesn't happen all that fast--and the previous testing was still considered *current* testing

Foggy, the above information is for your benefit--did they do the biospies when they did the EMG? If so, you should be home free--if your insurance is private

Medicare, and Medicaid have different classifications, and testing protocals--you may have to review those to see where you fit in.

Zip: When you are reviewed, discuss with your immuno--per what your current troughs levels have been, as to how long you would need to be off the IVIG for your levels to drop below normal again.

In some people it can drop as quickly as one month, in some it can take as long as three months'

You may also want to ask about vaccination challenges--if needed for insurance approval

Most major insurance carriers are using AMC mangement--which is an automated management system that was designed by a doctor--so there would not be a need for expensive case managers.

Needless to say, this doc is sitting on the money now.....wish I had thought of it first

The good news--my case slid right though this system--per CVID diagnosis, which if my memory serves me, is also your DX., so most likely you will slide though, too.

With regards to supplements that will boost a truly depressed immune system--one that requires IVIG to maintain it's functionality

Forget it--all the transfer factor in the world, and Mg, and CA are not going to replace IVIG--and I'm a PharmD with 23 yrs experince.

I'm not saying they don't help with other symptoms relating to Lyme--but it's really a moot issue on this topic matter.

But for those of you with a scientific bent, here's an interesting medical abstract with regards to CVID(Common Variable Immune Deficientcy, which generally means low IgG subclasses "AND" one other component, and /or antibody class of the immune system is also malfunctioning)

Low IgG subclasses are just that( hypogammaglobulinemia) and are not CVID
http://cdli.asm.org/cgi/content/full/5/3/399

Adenosine Deaminase Deficientcy and Purine Nucleoside Phosphorylase Deficientcy in Common Variable Immune Deficientcy

Zip, if you get a chance--read this medical model---and see just how you feel/think this relates to Borrelia--because I feel there is something to this with regards to patients like us.

my neuro is part of the columbia lyme center and should have no problem helping me if they would only actually do the paperwork!

i'll read the info later thanks....

my immunologist was most suprised by the severly low levels of my t-cell mitogen lymphocytes (con a, pwm, etc).

when these results came in he felt, in his clinical opinoin, that my hypogammaglobulinemia was most likely caused by the Lyme since studies have shown that borrelia lowers these counts (i can get you the link from pubmed if you like).

of course it is not specifically indicative of borrrelia but it 'makes sense'. wondering if you had this testing done?

the immunologist feels my condition is both chicken and egg. but considering i am starting to see results after only 3 months is a good sign.

the only other person i knew who has used this product it took them at least six months for any results.

i thought CVID and hypogammaglobulinemia were the same diagnosis?

anyhow the doc called me friday to tell me that my circulating immune complex went down from 40 in october to 33 in march. <24 being in normal range.

quote:

---

Originally posted by Foggy:

BTW-what abx are you on?

---

i've been treating babesia with mepron, artemesia and biaxin since beginning of feb, will continue for minimum of 4 months per LLMD's order.

i just started another round of rocephin.

i had a 1.5 yr delayed dianosis and my first LLMD put me on rocephin 2 gms a day for 10 weeks (after six weeks of doxy oral) in which i had a very good response, but consequently relapsed...

and then got much worse. but i think i was also bitten again, not sure.

ironically it was almost to the day one year later that i started the second go of the rocephin.

i am now doing 2gms twice a day 4 days a week. just finished week 3. per LLMD minimum treatment will be 12-20 weeks depending on response, etc.

You said you were on 50 gms infused over 3hrs since 1/05.

I beleive the does goes by weight, correct? I am rather skinny and the dr. presc. 400 mg. I don't know much about this and am nervous.

I was suppose to have started this a few months ago and now reading the success all of you have had I am so sorry I have put it off.

I am sure you understand how difficult it is to follow through with things when you feel so crappy and confused.

Anyone have extra papers they want to get rid of, just dump them on my desk..lol

I will get on this tom. #1 priority. My dr. also wants me to stay on IV anti. Is this usually what is done?

He told me I have tried everything in the book and it is certainly worth a try.

I don't care about a herx or getting more sick only that maybe for once there will a light at the end of this long tunnel even temporarily.

How great it wuld be to have an enjoyable summer!

I know you have all written various things and comprehension is not a strong point for me but all in all what I understand it sounds like you are all happy with the results.

As always, this board is so helpful I am glad I found all you wonderful people.

Do you see Dr. L in NY. That's who I see. He referred me to a top notch neuro in NY, Dr. La. I have neuropathy in my face, arms and legs. Dr. L referred me to him because he is expert in neurapathy. EMG showed something going on in the nerves in my ankle. He recommended a dose of steroids, I'm on my second week and still no relief. I asked if IVIG were an option and he said insurance would not pay.

I've been ill for the past three years chasing down a diagnosis - one doctor thought it was mercury poisoning, another Sick Building Syndrome, and finally another believing it's lyme and babesia (gone untreated for 8 years)-- could be all of the above.

my e-mail is [email protected]

Thanks!!

quote:

---

Originally posted by LymeinME:
Zip

Do you see Dr. L in NY. That's who I see. He referred me to a top notch neuro in NY, Dr. La. I have neuropathy in my face, arms and legs. Dr. L referred me to him because he is expert in neurapathy. EMG showed something going on in the nerves in my ankle. He recommended a dose of steroids, I'm on my second week and still no relief. I asked if IVIG were an option and he said insurance would not pay.

Anyway, my major question was if you see Dr. L. I think he's great, only hard to get him to followup with the specialists he sends me to. And doesn't give me a clear treatment plan. Do you have these problems.

---

On the right track now but progress is slow. My IGg level is 600...do you know if this is considered low anough for IVIg therapy. My LLMD wants me to do the gammuglobulin since I have the picc line but she has never prescribed it to another patient. I am suppose to check with my ins. co. this week.

Your posts on this subject have been excellent and I read them with great interest. I had theorized that my slow progress (major neuro symptoms) was due in part to low IGg and an exhausted defense system that stopped manufacturing the antibodies to fight the fight. I personally think all lyme patients should have their immunoglobulin levels checked...I think there is a direct correlation with how long the bacteria has been left untreated in your system and your immun. levels. Would love to see statistics on this.

Is there only one gammuglobulin product?

Thanks for your sharing your knowledge on this subject.

There are many types of gammglobulin.

A few are Gamimune, Sandoglobulin, Venoglobulin,Gammagard, Gammar-IV, polygam, Iveegam. I believe some are manufactured in other countries.

I am new to this IVIG so others will chime in to give you more details.

Seems like there is so much to learn yet my drs and nurses seem like it is not a major deal.

I guess after being through so much it is difficult to be very trusting.

However, it sounds very promising to me to help with all the neuro problems and immune problems.

I found it instantly helpful.

I did have a weird reaction a couple of times. In the beginning I had some low grade fevers but I do not think that was lyme related as that can be common.

About two months ago I had a weird reaction with what I thought was chest pain, and then wheezing, for several weeks. I got extremely worried as thrombotic events can be associated with IVIG, and since hypercoagulation can be a problem in lyme and chronic infection, and since IVIG inevitably increases blood viscosity (you can search pubmed for this)...but all tests were normal and the symptoms abated, and besides, the chest pain apparently was chest wall tenderness. So I wondered if it was some odd kind of kill of something, lyme or whatever, based on the antibodies in that batch.

Last week I tried gamunex which is the purest and I got a rather bad migraine that night.

I drip this stuff extremely slow or I react to it. Generally it gives me more energy and my muscles feel stronger, I walk faster etc. In fact, I've gotten used to doing it for at least six months now so I feel it moved me up another notch or two. I am not doing any drugs of any kind. IVIG, home hyperbaric, some other alternative stuff, and researching even more alternative stuff.

lymeinme-

i don't see Dr. L but my immunologist is very friendly with and referred him to but i had an LLMD already. i've met him once for a consultation and he is a really thorough doctor and nice guy.

i spoke to a couple of people personally that have seen dr.L and he has been able to really really help them, including a woman was paralyzed and he was able to put her into complete remission.

tickitout -

400mg is very low, wouldn't do much i don't think. sounds like the amount that may be in a gammaglobulin booster shot.

and yes i am on IV abx concurrently.

betsy -

600 is low for overall IgG but not superlow. but you have to test for what are called immunoglobulin sublevels which are IgG 1,2,3,4.

you can also check something called your circulating immune complex. if it is high means you have an unequivocal active infection.

mine went from close to 40 in Nov to around 30 at my April appt. below 24 is normal.

yes low IgG and lack of antibody production can increase cytokine production and cause neuropathy. many neuro's use IVIG for parathesias or neuropathy patients.

the insurance companies are stringent with the meds because it so expensive to produce.

even though my EMG was completely negative my neurologist is involved in Lyme and said that it is often found that many Lyme patients neuropathy is in the smaller neural fibers which the testing cannot pickup. or something to that degree. i don't recall exactly.

Lymeonysnicket -

doesn't seem to make sense that you would need a ny metro area doctor for your insurance when you are from texas. i can recommend my doctor but i am sure there are many good immunologists who work with your insurance company in texas.

if you start working with a doctor in ny you would have to make frequent trips for appts, etc.

i don't want to speak for yankeeinblack but i think she is in texas. she may be able to point you towards the right direction.

Zip: CVID is characterized by a decrease in one or more antibody classes, usually IgG, and IgA, in some it can be a decrease in all three major types, IgG, IgA, and IgM

So hypogammaglobulinemia is part of the CVID problem

But it is also reconnized as a seperate type of deficientcy-called Selective IgG subclass deficientcy(as you know), these folks can just have one IgG subclass low, and all other antibody types (IgM,IgA) test normal--and still be considered immune deficient

Because if that certain subclass of IgG is low---you can have a very tough time fighting off infections that the certain subclass is low in--such as IgG subclass three---certain types of bacterias', and viral agents---such as CMV, EBV, HHV-6, ect.

Your T cell mitrogen problem would also places you into a CVID diagnosis--and I agree, it certainly could be caused by borrelia

All the more so by Babesia, and bartonella--which are well known to be *very* immuno-supressive

With regards to my testing--my T-cell functions were all normal, but, yes, I also went thru all the same testing that you did

I'm really starting to believe that we have seen the same doctor--I have a place in NYC, so it's an easy in and out for me.

I was orginally dx.ed in Texas, by an immunilogist that wasn't too terriably familiar with what borrelia could do to the immune system, so I searched out other doctors'

Why?

Because, with regard to insurance caps, and such--one really needs to do their best as to **why** they are having this type of immune deficientcy--if it is truly genetic--you will most likely need to be treated with IVIG for the rest of your life---and
if your insurance doesn't change very often( most large companies change their policies often--so it's really not a problem for me, I was just in denial)) you will run a million dollar cap out in 3-4 yrs with this treatment

Or you will need to apply for SSDI--and wait two yrs for Medicaid/Medicare, or if you are still able to maintain gainful employment---either change jobs, or apply for High-Risk Insurance---which usually takes two yrs to aquire--due to the large amount of people on the waiting list--waiting to get on the plan.

The insurance information is just ment to help anyone esle reading this thread--as I know you already have that covered

BTW, Got the medical abstract that you posted some time back with regards to T-cell mitrogen and Borrelia--believe me--it's made the rounds in my circle of coneheads!!

I'm glad to hear than your immune complexes are *down*, mine were high before IVIG also, and have decreased (now normal) since starting treatment.

Hello Tickitout:

The amount of IVIG is usually per diagnosis, your 400mg--is 40 grams, so you would be doing a slightly lower dose than Zip. So it would depend on how often you are getting the IVIG, as to whether this is a high, or low dose for you.

Different brands have different concentration levels, some are 5%, some are 10%--please read with care what I post further down in this post with regard to different concentration levels--it can affect hypercoagulation issues. This may not be a problem for you, but it's not so bad to know about it anyway.

Another concern: Some brands of IVIG--such as PanGlobulin---contain very high levels of IgA ( exact: 720mg) and for those who are either very deficient in IgA, or completely absent in IgA, you could recieve the mother of all "herxes"--also known as anaphylactic shock( don't worry, your doctor has tested you for this prior to recieving IVIG, and it's pretty rare)--that's why they always send an epi-pen with each dosage--if you home infuse.

And just plain and simple--some brands contain sugars---which can be tough on renal function over time.

Hello Lymeonysnicket:
Yes, Zip is right, my main residence is Texas, and I work at a major oncology centre there twice monthly( one week on, one week off) as a Pharm D, general all-round conehead.

I'll send you the names that I am aware of---but you still may be better off on the East coast--read the first part of my posting about my experince in Texas. That was two yrs ago--things could have changed.

You will need to find someone who takes your insurance if you need IVIG, it is too expensive to pay for yourself.

Hello Betsy:

Your doctor should pursue testing for subclass deficientcy--with your totals being 600--you may be low enough for treatment--it depends on what your insurance policy states, "Per Plan"

Most immunilogist consider treatment once the IgG total has dropped below 700

I was typing this while you responded to Zip,it doesn't look like it's low enough right now, but maybe have your doctor re-check you at another time?

Hello OxygenBabe:

We have talked about IVIG before, that's a small dosage--any reason why they don't place you on a higher dosage?

No one where I work has heard of using such a small dosage--unless it is Sub-Q??( and we deal with alot of gamma where I work)

On that low of a dosage--I would not think you need to worry about hypercoagulation problems--unless you are a genetic clotter( genetic thrombophilia, such as Factor V Leiden, Lupus anticoagulate, anticardiolipid syndrome, ect.)

If you are worried about IVIG and viscousity problems( at the dosage and infusion rate you mentioned, you probaly don't) you may want to be pre-hydrated prior to infusion--which means two things---either they run saline solution thru you at the same time as the IVIG--thru a double lumen cathater, or infuse the saline solution prior to the IVIG

Or you may want to use a gamma product with only a 5% concentration---Gammanex contains 10%

I had to switch from Gammanex to Octagamm--which also contains no additives---because I am a genetic thrombophiliac (Factor V Leiden)

The other issue is to infuse slowly--which you already do

By slow--I mean about 25 grams over 4-6 hours

You would want to discuss all your needs--per your indiviual experinces--with the Pharmacist who fills you IVIG order.

IVIG can cause chest pains--usually nothing serious--it can just irriate the chest wall--due to the viscousity of the product.

But if it gets serious--contact your doctor---and if it is right after a dosage---contact your local ER, and your doctor--no sense taking chances

BTW: I'm not trying to play the expert, but I went back to work last yr, after 4 yrs off--so when it was time to head out to conferences---for a few new CEU's, I headed right for conferences on IVIG, and immune deficienctys( one was six days long)

And Thrombophilia( clotting disorders)

This year it's off to the genetics conferences'

Because, Yours' truly has both of these problems

Now, I'm not the least bit self-serving here, Am I?

So "That's" why I'm so "Up" on all of this "Stuff"

But let's applaud Zip for having the tenacity to keep posting away, with regards to the Immune topics---even while being called a "Troll", and other names here on Lymenet

I never did post much about it( usually only high-jacked others' threads), because I didn't have the time, or energy--to always come back to the thread and defend myself, and keep it all together

We're all in this rotten disease together

Cheers, Zip!! When you get better--pursue a medical career!

Painting is tough on the immune system--alot of neurotoxins involved with paint exposure-long term

Why 5 grams--well, 2 reasons. One my insurance does not cover (I didn't even think of all this testing, and I don't have any obvious neurological manifestations). I'd like to try some of this testing.

Therefore, it's somewhat costly .

Two, I have to drip so slow, in order not to have a reaction, and do it in my doc's office so I simply don't have TIME to do that much IVIG. Also it's extremely boring to sit there for hours. Not that i owuldn't put up with being bored to get better.

Yes, I get my vitamin/mineral and glutathione ahead of time and that seems to help--hydrating the body.

Three, it was helpful at these doses, so...

I don't like the sugars either but from what I understand, its the sucrose (carimune) that's bad. I was using gammagard (sp?) which has glucose, which bothers my bladder (as all sugar does) but it is tolerable. The gamunex seems stronger to me.

ANyway I'd like to know the NYC expert who is also so respected by insurance. It's worth my checking out. Right now there is no case that could be made for me to get it via insurance.

Yankee why was octagamm better for your coag problems than gamunex?

Would you send me your doctors info?

I am in East Tennessee--but sent my children's medical files to Conn. and haven't had any reply in months, despite me and my doctor calling and faxing.

We kind of all feel like we are going it alone down here. My doctor has talked about doing something different when my seven year old gets out of school in May.

Like your doctor, my doc is very open to other ideas and motivated to learn.

I would just like my doc to be able to talk with your doctor.

My little boy is struggling more than the rest of us. I just want to do the right thing for him.

quote:

---

Originally posted by yankee in black:
Your T cell mitrogen problem would also places you into a CVID diagnosis--and I agree, it certainly could be caused by borrelia

All the more so by Babesia, and bartonella--which are well known to be *very* immuno-supressive.

---

interesting, never seen or heard that before.

quote:

---

I'm really starting to believe that we have seen the same doctor--I have a place in NYC, so it's an easy in and out for me.

---

my guy is in the bronx and teaches at albert einstein medical.

quote:

---

BTW, Got the medical abstract that you posted some time back with regards to T-cell mitrogen and Borrelia--believe me--it's made the rounds in my circle of coneheads!!

---

not sure what you are meaning? it is an interesting study for sure, suprised it is not referenced often.

quote:

---

Cheers, Zip!! When you get better--pursue a medical career!

---

,Hello Tickitout:
he amount of IVIG is usually per diagnosis, your 400mg--is 40 grams, so you would be doing a slightly lower dose than Zip. So it would depend on how often you are getting the IVIG, as to whether this is a high, or low dose for you.

Different brands have different concentration levels, some are 5%, some are 10%--please read with care what I post further down in this post with regard to different concentration levels--it can affect hypercoagulation issues. This may not be a problem for you, but it's not so bad to know about it anyway.

Another concern: Some brands of IVIG--such as PanGlobulin---contain very high levels of IgA ( exact: 720mg) and for those who are either very deficient in IgA, or completely absent in IgA, you could recieve the mother of all "herxes"--also known as anaphylactic shock( don't worry, your doctor has tested you for this prior to recieving IVIG, and it's pretty rare)--that's why they always send an epi-pen with each dosage--if you home infuse.

Hi Yankee,

The prescribed dose is 400mg every day for a week and then once every three weeks. To see how I do with it. The IVIG is Gammaguard.

I think about maxing out my ins. and don't want to waste any of it or time in my life either by not a high enough dose to be effective.

Just wondered what your opinion is about this dosage.

Much thanks to you and Zip for all the info.

I

Yankee in Black -- Thank you,too, for your information and I look forward to your e-mail as well. I'm sure I'll have more questions regarding IVIG as time goes on.

The information regarding immuno-supression came from a conversation that I had with Dr, Nick Harris at IGeneX--about two months' ago

I wanted to know what other TBD's were implicated in immuno-supression

As far as the abstract I'm referring to that you posted---here is the link:
http://flash.lymenet.org/ubb/Forum1/HTML/031461.html

Growing olives and eating spicy ham maybe a good advocation--but as a vocation--you may just become bored to death

Who knows, give it a try!

did harris find the same results in the lab with babesisos and bartonella?

You could make your own...Mg and Ca are needed to make HEALTHY antibodies and restore the damaged Fab portion of our OWN antibodies to fight Bb (pubmed abstract on that!). Link in my updated nutshell post.

Or use the "significant" Mg deficiency (Romanian abstract - restore the Mg balance!) to shut down the cholesterol pathway (For my friends post) since Bb follows the cholesterol pathway and uses Mn to protect against being destroyed by H2O2. Also documented.

Anyway, it sounds like zip and yankee have different docs.

To the sick syndrome person--IVIG would do you a world of good. I hope you can find someone to get it for you.

Are you familiar with a U.S. patent by Dr. Valletta who used Mg pyrophosphate and sublingual B6 to halt RA, ulcerative colitis and INVASIVE bowel cancer? It is titled: Magnesium for autoimmune.

History has a way of repeating itself. Research Dr. Pierre Delbet.

Oral doses will not "cut it", IV doses are needed, but I am trying hard to prevent this from spiraling even further downward leading to hormone imbalances, enzymes shutting down, "thick blood" (requiring heparin),etc.

Why do you think this was developed?
US Patent 5,656,037 http://msa.ars.usda.gov/la/srrc/whatsnew.html

What enlighting DOCUMENTED research do you have to help us all understand this disease?

Zip...

Magnesium for autoimmune

United States Patent 6,248,368
Valletta June 19, 2001

Not quite 10 years old...

Here's some "newer" research:

Lyme disease and magnesium deficiency
V. CRISTEA - Department of Immunopathology, Medical Clinic III, "Iuliu Hatieganu"
University of Medicine and Pharmacy, MONICA CRIAN - Department of Immunology,
"Ion Chiricu" Oncological Institute, Cluj-Napoca, Romania
V. CRIAN - ITEM-Paneuro Group. [email protected]@if..c;!ntci,rQ

During the period April 2001 - January 2003, we had under observation two cases, in
which the presence of both IgM and IgG antibodies to Borrelia burgdorferi was
serologically confirmed at high titers. In both cases, clinical manifestations were
similar: shivering, fever, headache, articular and right hypochondrium pain, and
objectively - tachycardia and erythema migrans - these elements being important for
the formulation of Lyme disease suspicion. Humoral tests showed: significantly
increased ESR, leukocytosis with PMN predominance, intensely positive PCR (for B.
Burgdorferi DNA)

and significant magnesium deficiency (1.20 mEq/L, 1.33 mEq/L,

respectively)...

And...

Gram-positive cocci, and the spirochete Borrelia burgdorferi employ exclusively the mevalonate pathway (Rohmer 1999; Kim et al. 2000; Wilding et al. 2000a, b).

Synonyms: isoprenoid pathway
The mevalonate pathway is responsible for the biosynthesis of CHOLESTEROL, other sterols, and isoprenoid lipids.
http://lifeextensionvitamins.com/ospa2.html

``HMG CoA reductase, the ***rate limiting enzyme*** of the isoprenoid pathway''
http://www.rpi.edu/dept/bcbp/molbiochem/MBWeb/mb2/part1/cholesterol.htm

***statin drugs as well as magnesium inactivate the enzyme 5-hydroxy-3-methylglutaryl-coenzyme A reductase (HMG-CoA reductase).***
http://www.lef.org/whatshot/2004_11.htm

Re: T cells...this info. may help to piece the puzzle together:

Men with low cholesterol have significantly fewer circulating lymphocytes, fewer total T cells and fewer CD8+ cells.
http://www.atozfitness.com/reports/heart_attack.pdf

In hypomagnesia this can lead on to a defective cell membrane transport of glucose. Increased intracellular calcium can activate the G-protein coupled signal transduction of the contrainsulin hormones (growth hormone and glucagons) leading to hyperglycemia. Decreased in intracellular magnesium can block the phosphorylation reactions involved in protein tyrosine kinase receptor activity leading to insulin resistance. Increase in intracellular calcium can open up the mitochondrial PT pore and BLOCK oxidative phosphorylation.

http://www.bioline.org.br/request?ni02121

"The levels of antibodies (immunoglobulins) decrease in experimental animals (mice, rats and hamster) by up to 60% when the supply of magnesium is significant reduced.

There is a direct correlation between magnesium deficiencies in rats and reduced immune defense against allergic reactions and cancers, in particular leukaemia and lymphomas."
http://www.1stvitality.co.uk/az/magnesium/

The above website has changed, so go to this pubmed abstract instead:
Proc Soc Exp Biol Med. 1975 Mar;148(3):620-4.

The effect of magnesium deficiency in mice on serum immunoglobulin concentrations and antibody plaque-forming cells.
Elin RJ.

Therefore, magnesium deficiency has profound immunosuppressive capabilities in mice by significantly reducing the number of antibody synthesizing cells and serum immunoglobulin concentrations.

PMID: 1093189 [PubMed - indexed for MEDLINE]

Our own antibodies are not "perfect" fighters against Bb, why?

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
http://www.mdschoice.com/elements/elements/major_minerals/magnesium.htm

there are a lot of holes in your theory.

you string together a lot of ideas that are either not relevant to each other, or overemphasize their importance. specifically in relation to borrelia.

i wished the search function was working so i could bring them up for you.

Zip: I just decided it was time to ring up Igenex, and ask some questions with regard to the immuno-supressive nature of Babesia, bartonella, and toxicplasmosis

Dr. Harris is quite nice, and called me back and answered my questions

I have called other researchers with questions as to their studies( if they are recent) and have always found them to be helpful

I am unaware as to the fact of whether they have published anything about this topic matter at this time (Igenex)

OxygenBabe: In a previous post on this thread, you asked about why certain IVIG products are more likely to add to the increased viscousity of the blood( they all do, some more than others)

Has to do with the concentration percentages of the product make-up

Gammanex is 10%, gammagard is 5%--therefore less concentrated per gram

This does not mean one works better than the other--it is just based on indiviual patient needs

Without knowing someones' medical history( and not just about borrelia infections) it is very hard to go into greater detail than this, on this thread.

Anyone who asked me to e-mail them----I did

No, Zip and I have different doctors', mine is at Columbia--and I do not know if they( it's a practice) take any new patients--at this time.

Marnie, Dear Marnie:

No, I certainly to do feel "Special", with regards to recieving IVIG, and why in the world would you "imply" that??

Seems silly!!

I can't be bothered with anything that is not useful in my life-period--meds, or otherwise.

So, if it ain't working, and I don't ***NEED*** it, I ain't using it---cheap, or expensive--whether insurances pays, or not.

FYI: I'm back working full-time as a Pharmacologist at a oncology center in Texas---so I feel as though I have been returned to the human race due to this product

Is there someone in your family, or close circle of friends, who is in need of this product, and is having trouble getting it thru insurance?

So, if you need any assistance in getting it for someone you love--try asking for help here, as many would be willing to help you here.

Just a hunch

Yes, I am very aware of the huge *cover-up*, as "you refer to it", with regards to many inexpensive supplements that could be used in place of expensive drugs, and who, quite honestly---isn't??

I don't like it either--so let's concentrate on getting that corrected--you would be very good at that.

But to suggest that anyone who is seriously immune-deficient throw in the IVIG and do massive amounts of Mg, and Ca--isn't in their best interest.

Mg at the rate of 600mg( elemental) every two hours is going to deplete the body( and we all know how Mg works to do that) of quite a few other needed nutrients( to say the very least)--the last thing someone who is immuno-supressed and already weakened --needs

Regular supplemention is very helpful, as B.B binds to Mg---but in excess, it can cause it's own set of problems

I am not knocking all your your help, hard-work, and recommendations on this board--but this may be a case of reach exceeding grasp--per the experince with the immune system

You are talking with someone who has had well documented problems with the innate immune system--way prior to my exposure to lyme, as my mother was exposed to the German measles while carrying me.

Anyway.....

The only product that even comes close--with regard to those who are immuno-surpressed( not those who use IVIG for immuno-modulation)to IVIG is Iscador

You may recall Suzanne Sommers discussing her cancer therapy--using Iscador as an adjunct immune stimulant during her cancer treatment.

It was used to help restore the immune system of the children who were exposed to the radioactive fall-out of Chenynoble(sp) This is documented in a European study.

My goal has been to find a cure that is "affordable" and safe for the masses.

But Yankee, where did you get the following?

"Mg at the rate of 600mg( elemental) every two hours is going to deplete the body( and we all know how Mg works to do that) of quite a few other needed nutrients( to say the very least)--the last thing someone who is immuno-supressed and already weakened --needs."

600 mg of Mg every 2 hours? Where did that come from?!!! For how many hours a day? Yikes!

While I do belive lyme patients need much more than the (approximate) RDA of 400mg...DIVIDING THAT/600mg throughout the day (waking hours) MIGHT be more beneficial (along with B6, sublingual because stomach acids destroy it)...as Valletta did...ie. 100mg every hour for 6 doses per day = total daily dose of 600mg. Taking 100mg every 2 hours instead of every hour might be more feasible/workable.

The dosage in Mag Tab SR is very low.

However, timing is tricky because we don't want to decrease the stomach acidity too close to meals...when we need the acids to breakdown the foods.

A better way, in my opinion, is to try to bypass the stomach...using IV doses of Mg or simply absorption via the skin (25 minute Epsom salt baths).

Because Mg can cause diarrhea...and further loss of electrolytes and beneficial bacteria, it has been suggested by George Eby (developer of zinc lozenges) that one takes the supplements until the stools become loose, and then back off a bit, to a tolerance level. It takes time to build up to tolerating Mg at a higher level.

Ideally, the focus should be on eating the foods which are the highest in Mg and less likely to cause that problem (diarrhea) to begin with.

Zipzip...if this is the post you are referring to, I will try to address your questions and comments:

zipzipFrequent Contributor Posts: 646From: nyRegistered: Sep 2004 posted 02 January 2005 18:14

You said: "marnie : romanian study link was a no-go."

The complete Romanian abstract with the link (which takes TIME to download...as does the lymenet search engine tonight) is now at the beginning of my Updated Nutshell post. It was given to me by George Eby.

Zipzip, you said: ``i did read the valetta synopsis though. quite interesting. where is the patent now, as far as status?
the patent was already outstanding for 6 yrs on the website (2001), and has been 3.5 yrs since''

Status of a patent? What do you mean?

Also...''outstanding for 6 years on the website?

Are you referring to this?

Inventors: Valletta; Giampiero (No. 188, Via Campidoglio, 03024 Ceprano (FR), IT)
Appl. No.: 737743
Filed: November 21, 1996

I imagine it takes awhile for a patent to get approved in the U.S.

Most nutrition research is fairly ``old''. We've known the functions of B1 (first vitamin identified) for a long time, for example. Pretty concrete and widely accepted as to what are the functions of the various minerals and vitamins. We know how much of each is needed to survive each day...the RDA...the lowest amt. we need before symptoms of a deficiency happen. In some instances we know which vitamin/mineral can halt a disease...C for scurvy, for example.

You said: ``i don't see where Valetta explains his novel approach of introducing mg into the cell that is different from what is available by po, im or iv''

Try to find IV Mg pyrophosphate. I haven't had any luck. He also administered (and explained why)...sublingual B6 at the same time.

Could other forms of Mg work...maybe.

You said: ``doesn't address how magnesium can interact with other medications''

Has your doctor told you not to eat nuts or other foods high in Mg while you are taking your medicine? If it truly impacts the abx.in a negative way, shouldn't one logically not consume Mg in ANY form (even foods) if that were true?

It appears the Romanian cancer doctors gave abx. along with restoring the Mg level. Did the resultant HUGE amt. of hydrogen produced (acids reacting with alkaline minerals) INactivate PFK *or* did the Mg shut down the cholesterol pathway, *or* both?

You said: ``it seems he drops all other medications and is stating that resolution of autoimmune diseases can be remedied in mg alone''

Yes. Exactly...that form of Mg along with B6. IV Mg pyrophosphate and sublingual B6 in timed, spaced doses to maintain a specific level in the blood stream for as many hours a day as possible. Switching to orals when able. Not huge doses in most cases.

The kidneys filter out excess Mg in a 2 hour time frame, so giving very large doses ie., 1 or 2 grams all at once, one time a day might be ``wasteful'' and not good if it causes diarrhea...and further loss of electrolytes and beneficial bacteria.

You said: ``The daily magnesium dose is to be diluted in a phleboclysis so as to supply the organism with no more than 80-100 mg of magnesium per hour."
is this too much mg?''

100mg per hour x 24 hours = 2400mg or 2.4 Grams. No, that's not a huge amt. Only in the most dire cases did he give it 24 hours.

10 GRAMS of magnesium given over 24 hours caused a resolution of ventricular tachycardias and a greater than 80% reduction in ventricular extrasystoles (Lancet:1019, 1987). Albeit a one time deal, but this shows larger doses can be given safely... with monitoring.

You said: ``that's a buttload of magnesium, 24 hrs continuous for 3-12 months''

No...he did NOT give that much Mg, 24 hours continuous for 3-12 months.

For the woman who had ulcerative colitis:

The treatment comprised the parenteral administration of 6 g of magnesium pyrophosphate (489 mg of Mg.sup.++, i.e., 8.89 mg of Mg.sup.++ /kg body weight daily), diluted into 500 cm.sup.3 of physiologic solution, and

the infusion was adjusted to supply the patient with 80 mg of Mg.sup.++ per hour for 6 hours. 1200 g of orally administered vitamin B.sub.6 were added in divided doses, to improve the magnesium uptake.

Do you see 80mg of Mg...per hour for 6 hours? That's 480mg of Mg. Slightly above the RDA (daily amt.recommended).

The patient who had serious skin problems:

The therapy consisted in daily administering 9 g of magnesium pyrophosphate (i.e., 733 mg of Mg.sup.++, corresponding to 9.16 mg/kg body weight daily of magnesium ions), dissolved into 500 cm.sup.3 of a physiologic solution.

The infusion rate was adjusted to supply 80 mg of Mg.sup.++ per hour for about 9 hours. In order to improve the magnesium uptake, the oral administration of 1800 g/day of vitamin B.sub.6, in divided doses, was associated with the intravenous magnesium treatment.

Got 80mg of Mg per hour for about 9 hours daily. That's 720mg of Mg.

George Eby, author of an extensive documented website on Mg, cured his own manic depression using even higher doses than that per day.

The arthritic woman:

The magnesium therapy, that the patient started in a disease remission interval, consisted of daily administations of 6 g of magnesium pyrophosphate (equivalent to 489 mg of Mg.sup.++, corresponding to 8.1 mg of Mg.sup.++ /kg body weight daily), by infusion in 500 cm.sup.3 of physiologic solution.

The infusion rate was adjusted to supply 80 mg of Mg.sup.++ per hour for about 6 hours. Vitamin B.sub.6 was associated with magnesium in the 2.5:1 ratio, i.e. in an amount of 1200 mg daily in divided doses, in order to improve the magnesium uptake.

Suitable analgesic and anti-inflammatory drugs (FANS) were prescribed to soothe the articulation pains.

Got 80mg of Mg per hour for about 6 hours. Total dose for the day = 480 mg.

(A month later she went on oral divided doses.)

You asked: ``in contrast how much mg would it take for resolution of lyme? you stated that in the romanian study, which i couldn't read, it was early onset lyme, so obviously the pathogen was not deeply embedded into the host''

If you do the math, the % decrease at the time of the rash was indeed very ``significant''. I do not know how much or what kind of Mg they administered...darn.

How low will it go? We have about 15 Grams in storage. Most of it is in the bones, but it is in every cell...and esp. the liver, heart and brain.

Likely it would be pulled out of the least critical storage areas first. Could it become completely depleted in one organ...say the heart muscle? Yes, causing sudden death (athletes).

The depletion generally happens over time and other factors kick in to try to protect us. The other minerals are utilized to produce hydrogen. The neurohormones elevate to compensate for the decreased production of the neurotransmitters.

Chromium will help to prevent late onset diabetes, lithium will help to treat manic depression, but if the underlying cause is not addressed in time the body cells still will be impacted.

Every cell that makes ATP needs Mg...not any other mineral. You can't... in time...hold onto Ca or K with a Mg deficiency.

Finally, you asked: ``how much mg is needed, and is safe, to help create healthy antibodies''

That would depend on how low you are to begin with. This is why testing your essential mineral levels is so important. So you know where to start. And then monitoring them until they are back to normal levels and sustained there.

We don't know if ``a rising tide lifts all boats'' holds true. Does flooding the system force enough back into storage? It seemed to for my son. He was given 2 Grams IV in ER for tachycardia and he did NOT get diarrhea (excess Mg causes this). He is on orals now and holding...

My mother, 86, was given 1 Gram (and a lot of K, she was very low) post op - gallbladder - and had diarrhea. However,she was also on IV abx. But...for months following, her arthritis pain in her left knee was gone.

Very little Mg is absorbed when taken orally. Our stomach is soooooo acidic, much of it is destroyed - reacts with the acids. And making the stomach alkaline isn't a good idea just before a meal, when we need those acids to break down our foods...to feed the beneficial bacteria and ultimately us.

In the January post, you made a lot of statements, comments, and your few questions were interspersed. Sorry I missed them. I hope this answered those questions.

I believe that restoring a "significant" Mg deficiency will cure lyme by helping lyme patients once again make their own HEALTHY antibodies and by (Mg) putting the brakes on the cholesterol pathway.

I also believe IVIG will work...and Rife too.

There are many paths to a destination. We each must chose our own. But read the map first...become knowledgeable about the road you have chosen to take.

Marnie, why did you hijack an IVIG thread to repost the stuff you always do about magnesium? WHen there is not a shred of clinical evidence that anybody with lyme has ever gotten well with your magnesium theory. Oh well. Maybe you should just periodically post your own thread on magnesium, it would certainly be more polite.

I've been on IVIG for 8 months and also am finding it helpful. I'm glad it is working well for you.

I get 25 grams of Gamunex four days per month (2 days in a row, every 2 weeks). I get a liter of IV saline prior to each Gamunex treatment. That, along with Solu-Cortef, benadryl and tylenol seem to help make it easier to tolerate.

I believe you have written me before but I didn't keep the email.

Would you write me again if you know the name of the doc zipzip is using in NY?

I would like to get my doc to conferense with him about treating my son.

If you don't want to consider the information, just skip it..

I just think the bashing is uncalled for, and could do harm should IV Mg and sublingual B6 be something that could really help some Lyme patients.

I see Marnie saying in her opinion IVIG is a good therapy for those who need it, and can get it, and she's aserting that in SOME cases, there may be ways to assist our own bodies in producing more of what it needs.

I am very interested in reading all your accounts and info on IVIG (especially Zip and Yankee)...why am I interested?

Because any and all views of the intricate mechanics of immunity can be applied in finding our own way.

Yankee's angle and understanding, to my mind, can also be valuable to apply even for those of us who cannot, will not get IVIG.

I also think Marnie's angle could be helpful to those who are using IVIG. Another angle, viewpoint, even if you don't use the actual substance. There's more than one way to skin a cat.

My son and I have all IgG classes normal, and low IgM.
I don't believe we would ever be prescribed this therapy (except I am confused as to the different applications used by Doc K the LL neuro in CT for auto-immune?)

In any event..what I find helpful, is more of a window into our immune systems.
I read Yankees understanding, and I can take from that and continue to investigate my and my sons needs.

We NEED more immunological focus in Lyme!

I also get needed info from Marnie's perspective on the mechanics of cellular immunity. I find it extremely helpful in figuring beyond the microbes.

I think we will all win if we don't become "psssessive" of out therapies.

Noone has the patent on getting well from TBD's, but I believe many of us hold really valuable pieces.

Mo

For those who have been able to get your MD to prescibe IVIG in NY or NJ, please e-mail me the name of your doctor. I'm getting nowhere in central NJ.

Zip - I didn't get your e-mail -- I was sure if you were able to get to it and Comcast had been down, please e-mail me the name of your immunologist, neuro and LLMD, if possible. As my brother says, "Sometimes ya gotta just cross the river." -- the Hudson.

e-mail : [email protected]

For those who have been able to get your MD to prescibe IVIG in NY or NJ, please e-mail me the name of your doctor. I'm getting nowhere in central NJ.

Zip - I didn't get your e-mail -- I was sure if you were able to get to it and Comcast had been down, please e-mail me the name of your immunologist, neuro and LLMD, if possible. As my brother says, "Sometimes ya gotta just cross the river." -- the Hudson.

e-mail : [email protected]

I 'had' Lyme in '94....I am supposedly a 'cure' as standard testing is negative. Igenex is still positive, but physicians in Wisconsin disregard that.

25 gms once a month is actually a low dosage for IVIG therapy. most patients at 25 gms get it bi-weekly, and usually in an even higher dosage.

at that dosage you are on it may not be efficient enough.

likewise you have only been on IVIG since december, may take up to six months to see appreciable results.

as you pertinantly mentioned IVIG will not cure lyme. i would recommend seeing a Lyme doctor and discussing an antibiotic protocol.

He was very nice, literate, treated me generously....and five years later....I'm still sick.

I believe that the six year period from '94 to 2000 where I had been inadequately treated did permanent damage. The IVIG is the finger in the dike, so to speak.

My neuro is great. He is European, and doesn't seem to have his head in his ....as.
He doesn't deny Lyme could have caused my current condition.

Anyway, I don't do marathons (i'd croak). I did sprint triathlons (500m swim, 25K bike, 5K run)....now I swim when I can drive straight. I bike when I have 2 days to spend in bed for every 1 hour on the bike, and my pain pill supply is ample enough to pass the time. I walk. When I want a real adventure, I take my 2 labs, at once. That is like the Iditarod on blacktop, you can smell my running shoes burning! That usually lands me in bed as well, but is highly entertaining to the neighborhood. I even bought pretty linens, I am spending so much time in bed! (Martha Stewart no less) God, I'm a bore! Enough already!

Well, you never know...I'm shooting for a revival in August. I suppose I better get moving. If you don't hear from me, I died. If I'm back on here, you can always kick me out.

I do think it isn't out of the question to test all chronic lymies for small fiber neuropathy (which ever so much resembles MS) via skin biopsy...it's easy and cheap compared to other things (like two sided cardiac caths..ouch) and what if we all had small fiber too? Hell, I am sure most of you, like myself, have had every other test on earth, why not one more?

Marnie--
Let me reinterrate:

Yes, I am fortunate to have good insurance, both though my husbands' employer and mine

Alot of that has to do with the amount of time we spent in school, and our jobs( not fair and just--I know, and agree--but it's the fact of the matter)

But I am certainly "NOT" lucky to be in need of IVIG

I really would prefer to win a different lottery--if I am so lucky!

You may, or may not be aware of this...but when you are dealing with immune deficientcy at the level that mine is---and remember--mine is just not related to borrelia, almost any insurance will pay the tab---including HMO's

As will Medicaid, and Medicare---if you fit into their defined catergory( I do, but do not have this insurance,--since I work))----and you can find a doctor who is willing to take the low stipend that medi-care/aid pays

1) You will need some sort of medi-gap insurance---as the co-pay on medicare/aid, is 20%--and most folks can't cough that up every two weeks, or so.

2) You are considered homebound--it would take too long to explain their reasoning for that here--but a quick example would be that they want you to get well, rest, and not be exposed to all sorts of new pathogens while the IVIG is doing it's work to normalize the immune system.

3) You need to find a doctor, and a clinic/ hospital setting that will except the pay for the IVIG thru Medicare/Aid--which, as I stated above---is low.

The pay thru private plans is much better, even HMO'S--therefore the doctor may be more willing to, as you say "Go to bat to get IVIG for the patient"

Here's where you may be really surprised: IF you fall into your insurance companies pre-set levels where IVIG is deemed a suitable medical product----there is no need to be going to "bat", for the patient.

They just need to submit the needed proof

Where the doctors usually end up fighting for the patient to recieve IVIG---you guessed it!!, AUTOIMMUNE DIAGNOSIS--because....You will need to have exhausted all other methods of treatment for said disease before IVIG is considered an approprite treatment alternative

Which means if your DX is MS, the doctor would need to state ( and may need to submit proof) that you have tried other treatments, like the ABC drugs, steroids, ect---and all other treatment modalities have failed

OR, have bloodwork/testing, that proves chronic infections are present, and being immuno-supressed would be dangerous( contra-indicative) to your health.

Next,

Per my statement regarding the above Mg protocol mentioned in my posting to you, many moons ago, I pulled a copy of one of the many papers/studies, that you have posted over the yrs--and this was the stated protocol in the abstract--which you refered to at that time.

I do not have it stored in this computer( as I had Zips' abstract--that is why I could access it quite easily)

It is either in my old computer--or filed in one of my medical abstract files.

Give me some time( I recieve my IVIG on Wed, and am a busy bee right thru to the weekend), but I will find it and post it--if you would like.

Mo: I was not bashing Marnie, if you re-read my posting--I am just having a discussion about the merits of IVIG--and as to whether Mg and Ca would be "Enough", to replace the need for IVIG, in some of the patient population here with lyme

A generalized comment would be "No", and it would be factual for patients such as myself

Be we do not know all about our fellow posters' health--so it is indeed hard to answer for the masses.

I have been using the above mentioned protocal for Mg, for quite some time

No, it did not eradicate my infections

But I do not see anything wrong with using it, and using common sense when following the protocal( some feel if alittle of something is good, alot would be better, and with Mg--this is not very wise)

What exactly is a Meyer's cocktail, and is there any chance of not using needles? I have developed a phobia of needles in the last year.