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
-zip
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,
pq
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.
they may be supplemental, as the name implies, but are no cure for anything.
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.
I pray you continue to improve.
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!
thanks for the prayers and best wishes, back at you.
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.
[This message has been edited by Foggy (edited 17 April 2005).]
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.
See Marnie's posts on Mg and antibodies for expositional overview on antibodies and Mg.
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.
[This message has been edited by zipzip (edited 17 April 2005).]
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.
No rush, post back on this in a couple of days, when you get the chance
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.
so that was good news.
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.
will add flagyl when babs treatment is done, so we plan. some ketek, whatever works. i am very aggressive in my treatment, except for my diet, and vitamins.
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.
Good luck to all.
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.
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!!
When I get up to speed, I will share my whole story with all -- I've experienced alot over the past three years
quote:
Originally posted by LymeinME:
ZipDo 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.
LymeinME, does your LLMD know you are on steroids? They caused me to have neuropathy in the form of intense burning and parethesias. Be careful with those roids, they can have adverse effects on Lymies.
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.
Betsy
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.
Good luck.
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.
[This message has been edited by oxygenbabe (edited 17 April 2005).]
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.
i will send you my dr's info all the same.
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
[This message has been edited by yankee in black (edited 18 April 2005).]
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?
Thanx...good thread...
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.
Thank you and God bless,
Linda
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 borreliaAll 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!
i'd rather move to Italy and grow olives and eat spicy ham.
,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
Thank you,
Linda
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.
Tickitout -- I noticed you're registered from the Garden State as well -- could you e-mail me the name of your doctor who prescibed the IVIG? The immunologist and GP I've been to in Princeton won't go near IVIGs -- even though I'm immunodeficient and am sick from toxic mold, lyme and babesia -- they've all done a number on my immmune system. THANKS!
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!
I'm off to a meeting, I finish the rest of this posting later.....
did harris find the same results in the lab with babesisos and bartonella?
obvioulsy igenex hasn't published any such results (at least to my knowledge).
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.
Protecting a HUGE industry...I am not paranoid nor am I kidding!
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.
Marnie--SOY VEY!!! LOL!!!! You show up trying to sell magnesium on so many threads for how many years now. It does NOT CURE LYME. Its important to supplement it but it is in no way a cure.
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
[This message has been edited by Marnie (edited 18 April 2005).]
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.
The major problem: It is a mistletoe based product--and one can be quite allergic to this product--if you are so predisposed
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.
[This message has been edited by Marnie (edited 21 April 2005).]
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.
Thx all to a very interesting thread...Besides, its only by posting stuff like this that maybe IVIG will come to be used more in lyme. It's used in Guillain-Barre (which sometimes is probably misdiagnosed lyme) and was covered fully by insurance for a lady in my doc's office who had that diagnosis.
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.
HVG
did you up the dosage. 2-3 shots a week is usually much more effacious.
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.
Thank you,
Linda
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
[This message has been edited by Mo (edited 19 April 2005).]
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]
and [email protected]
THANKS,
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]
and [email protected]
THANKS,
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.
I receive IVIG as immunomodulation because somewhere down the line, I got small fiber (peripheral) neuropathy. HMMM, wonder where that came from? Anyway, that also hit my autonomic nervous system, which is part of the peripheral nervous system. Small fibers are non or thinly myelinated fibers, as opposed to the myelinated fibers that MS affects. However, the symptoms I have are very similar to MS, except for the autonomic ones, which are untypical in MS. Rheumatologists have dismissed my disease as not autoimmune, however, my neurologist feels I have autoimmune autonomic neuropathy by cellular findings, and neurochemical abnormalities rather than serological markers. Either way, I think the IVIG is helpful, however, I don't think I receive enough and at $3000 per bag, I am unlikely to get more. I receive the treatment to stop the progression of the autonomic degeneration which has left me very bradycardic (40BPM), globally anhidrotic (vulnerable to overheating) and with labile blood pressures which range from 50/30 to 200/103. There is also the issue of numbness, tingling, pain, ataxia and general cholinergic failure, including sicca symptoms. I also have a movement disorder. It is a battle to get IVIG and it isn't cheap. It is a blood product, and although 'washed' needs to be weighed against the risk. IVIG consists of antibodies from thousands of individuals in each bag! We don't understand much about how disease spreads, and there is risk with IVIG, no doubt. IVIG is clincally approved for only a few conditions at either end of the spectrum of immune boosting for conditions that cause immunosupression or immune modulation in conditions that are autoimmune. Autoimmune neurological disease has responded favorably to IVIG and has produced nerve regrowth in a few cases. IVIG has proved useful in many sensory neuropathies except for the hereditary type. I have no side effects from IVIG itself, some people do, including transfusion reactions, again it is a blood product. I get 25 grams per month over a 3 hour infusion time. I weigh 136. It is dosed by body weight. I get worse at the end of the month right before my next infusion. I got the attention of a cardiologist when they thought I had a stroke due to numbness and a high BP. Via the cardiologist, bless him, a triathlete himself, I got to a neurologist at a research center. I flunked a tilt table test(blood vessel involvement) and sweat test (skin nerves involved) last summer and after that received skin biopsies in the fall. I was also evaluated by a gastroenterologist with a specialization in autonomic neuropathy due to nausea and other GI problems and a neuro-opthamologist for vision defocusing. After I was confirmed having small fiber neuropathy with autonomic neuropathy deemed autoimmune, they initiated IVIG in December with a loading dose of 25grams every other day x 5. My prognosis: I might not get any worse, but I won't get any better either. As I said in my other post, my vision and balance have improved greatly. Numbness and tingling somewhat better, pain unchanged and significant. Stamina is still poor in my opinion. BP has held steady in the low 100/60's and pulse steady around 50-56 with out beta blockers, or other cardioactive, vasoactive drugs, which were a nightmare for me due to the labile nature of my BP and low pulse. I would not call it a miraculous recovery, but I expect after lyme disease I would have permanent damage. I also expect that this damage will not be attributed to Lyme disease, as my titers on their tests are negative, although I have a clinical diagnosis due to a recorded tick bite, EM and rising titer. It may not be the result of Lyme disease at all, who knows? 18-24 months ago, I pulled off a season of 5Ks and sprint triathlons despite feeling very crappy. It was a mind over matter thing of personal importance. (Not this year, but I am walking and swimming...and I have to begin a resistance training program again, but I have been reticent due to severe total body flare ups when I try...it is an aversion I have to get over at some point.) IVIG is not a cure for chronic lyme disease in my opinion. I am not sure there is a 'chronic lyme disese' or if you are just stuck with a ravaged body which will show up as a number of other conditions which require a number of different management regimens or potshots whatever one wants to call them. However, any one with a history of Lyme might well consider skin biopsies for peripheral (small fiber) neuropathy. You might be surprised by the results, I was. I was utterly shocked that I had neuropathy. I attributed my pain and other symptoms to overtraining, undertraining, some occult arthritis, broken bones (had a few) migraines, herniated discs,menopause, lyme (which may very well be at the bottom of all of it), over zealously prescribed anticholinergic drugs, and last but not least, mental illnes. I have no idea how long I will be on the IVIG, however, as long as I am reasonable with my requests, tolerate the bad week to 10 days per month, and I don't deteriorate too much, don't beg for pain pills, make a sincere effort to exercise reasonably and pace my work load, eat well (very hard due to nausea, early saiety and post prandial hypotension), I doubt I will raise a red flag. I don't doubt that I will have to do a trial without it in the future to substantiate its efficacy. That is the story of my IVIG. I will glady answer any questions any one has.
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.
best of luck. get back to those marathons!
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?
Have a great night.
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)
I have given myself Meyers' cocktails, and IM/IV Mg for yrs--as you can imagine--I mix these up myself.
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.
I would like to add that IVIG has been accepted as treatment for neurological autoimmune diseases (guillain-barre, chronic demyelinating polyradiculopathy, some mononeuropathies, autoimmine autonomic neuropathy, etc) many of which fall into sensory neuropathy categories. However, I don't think many mainline docs diagnose those anyway as a lot of technology goes into the diagnosis. They are not the first thing the doc comes up with when you walk in the door. And I agree with you, no one receiving IVIG is lucky to have to receive it. We are fortunate in that we have been given the chance to get this treatment when others just as deserving get zoloft and amitriptyline instead. I also do not get IVIG for lyme, nor would I expect that I would get it for that. As far as my docs are concerned, with a negative titer, I no longer have lyme. As of yet, it is not the accepted protocol, like you said, and unless cost comes down, it won't be....anyway, could you fill me in on the magnesium thing?? I would appreciate it. And, what effect does the Magnesium have on cardiac rhythms? Mine are whacked out at times.....I don't want to do myself in with Mg....I was thinking of a more dramatic demise. (just kidding) (My humor has gotten extremely out of control lately, I apologize.)
I called zip's doc but he doesn't take my insurance. Yankee, can you email me your doc, maybe he will, as he's different than zip's.
Otherwise I'd have to change insurance, OR, perhaps I can get one of these docs to work with a neuro within my HMO. Or I can just keep working with my own wonderful doc but I cannot get those huge amounts, it's too expensive.
Zip's doc does some of his own testing anyway...
Re: magnesium, it is helpful with cardiac stuff. A recent interview with Cheney who works on CFIDS and had a heart transplant, anyway, he said if you mix the magnesium with taurine it doesn't hurt and cause cysts, if you're giving yourself shots at home in the butt or thigh.
I don't like giving myself shots. I get it IV. It certainly is helpful and I am not denying its use as a supplement. Oral is not sufficient for me.
Also, Yank, in terms of luck--others being given prozac, some of the luck is in having a questioning personality and being smart. Many simply do not ask questions. They accept a diagnosis and take drugs for symptoms and its very sad.
I didn't think you were bashing Marnie..
I for one am getting allot out of looking at this from as many angles as I can.
Your's and hers being two of them.
As I said, my son and I are immune deficient,
but not qualifying for IVIG, we have other "markers".
This is a good thread.
Mo
Small fiber neuropathy is a huge net into which many fish are caught. The first thing they do is determine is what the cause of small fiber neuropathy is, from there they proceed to management. There is no cure for small fiber neuropathy. It means simply that the non myelinated and/or thinly myelinated nerves of your body are deteriorating for some reason.
I happen to have had Lyme disease and also happen to have small fiber with the autonomic system involved as well as the sensory nerves of my body. My condition also falls into the seronegative Sjogren's Syndrome grouping and I do have a positive lip biospy on that. So that is why I get IVIG, based on that, significant small fiber degeneration on biopsy and some odd ball things that showed up in my skin biopsy. I have no serological evidence of autoimmune disease which sends any conventional rheumie into spasms.
Informed neurologists however recognize that not all autoimmune dysfunction produce abnormalities in the narrow serological marker panels drawn on people. interestingly, I have been immunized against Hep B, twice, (6 shots total) and I don't hold my immunity. IVIG is used only for cases in which the doctor can back up an autoimmune cause.
Because Lyme is called the 'great imitator' and small fiber is also a great imitator, I am wondering if Bb attacks every ones peripheral nervous system (small fiber) and it just doesn't get found because the only way to find it is skin biopsy at 4-5 sites. These biopsies look at nerve fiber density and die off patterns, not for lyme. They also look for amyloid plaques (which would be a really bad thing).
It does take persistance, as I said, I was diagnosed with lyme in 94 and treated with 3 weeks of amoxy. Forgot about it, as I was cured, even though I got sicker and sicker. I saw an LLMD in 2000 and got what I consider to be adequate treatment over about 6 months time. Over the years, I saw a variety of mainstream docs who did a variety of gatekeeper tests which in general came back normal. So then I was told I needed antidepressants. (ever heard that story before?) I could not tolerate antidepressants, nor any anticholinergic drugs. I had some severe reactions to anticholinergics and antidopaminergics, which are mainstays of chronic pain treatment regimens and of course psych treatment. I gave that stuff up many years ago, as it was so darn toxic to me, but I never knew why. Later I would find out it was my cholinergic function that was deteriorating, and wisely, just by coincidence, I should not take those drugs.
It was not until my autonomic nervous system would no longer maintain a stable blood pressure and my pulse got excessively low, did any one consider I was really sick. I had two episodes in which I went to the ER and they did do comprehensive testing as they thought I had a stroke....(that is something that they pay attention to). Only then did I get into the system and end up at a research center where they decided I was "worth" trying to salvage.
I did not have to look for a diagnosis to get IVIG, it found me. Whether or not it is the long term consequence of a Bb infection is not determined, and will remain undetermined unless of course, many Bb infected individuals get this syndrome. Like most CDC stuff, they will say I have a co-morbidity. I just happened to have Bb infection at a point in my life, but no active infection on standard lab tests.
The implication that Lyme is related to MS, which is degeneration of myelinated (large)fibers brings me around to the idea, that perhaps the fibers affected in Lyme are small fibers, giving much the same effect as large ones, only tests that indicate large fiber would be negative. Only autonomic dysfunction of a fairly severe type would get any attention....or if your foot rots off.
I happened to get 'lucky' and get the automonmic type along with the sensory type, making me look just like an advanced diabetic, in clinical terms. (It sucks) I had no idea I had this....a even partially severed a finger and barely had pain....(kiteskiing) and even then a neuropathy did not dawn on me. When my big toenails turned black after a minor injury, it did not dawn on me.....as a matter of fact it didn't dawn on me until I was seeing a neuro for autonomic neuropathy....
So a long answer to your short question....does every one with small fiber neuropathy get IVIG...no.
Lest I leave any one with the impression that this is painless, it's not. It is one of the most painful entitites in medicine, and the pain is not always 'nerve' pain as people traditionally think of it. I run the gamut, however, stiffness, profound aching, bone type pain predominates, with migranous pain in my head at times, sharp, shooting pain in limbs, aching pain in the torso, predominantly rib cage, burning feet, mouth etc. It is of all nature and varieties and it is everywhere, just like your small fibers. I get episodes where feel hung over, seasick and beat up. These are coming more often and last longer. Eventually, I suppose this is how I will always feel.
Perhpas a more pertinent question is how many people with lyme also have small fiber involvement demonstratable on skin biopsy? If that number is significant, perhaps a correlation will emerge. That may lead to a causation. But you can't put the horse before the cart. NIH should do a study on small fiber/lyme.
[This message has been edited by 8crow (edited 20 April 2005).]
and I do get long winded.
I don't even realize how much I've typed until I see it posted....
Example of my muscle weakness, I notice it when standing in one place for any amount of time. Or if I'm making my bed and I'm folding up the big comforter, I can feel it. No doctor would give it any credence as it doesn't significanlty alter my life. Oh yeah, and going up stairs (which I try to do whenever I can) especially subway stairs, I feel a certain burning fatigue in my muscles.
I think I will continue on the path I'm on, and do my gamma in the amounts I'm doing. I just don't have the energy or wherewithal right now to start purusing doctors who aren't covered by insurance and get all kinds of biopsies. But I think you make a good point. One lyme symptom I've had allalong is "sore skin". I think thats peripheral nerves. If your peripheral nerves are involved, I'd say its a good bet your CNS is too (which lymegraines prove in my case).
I think I may start a very graded exercise program now that spring is here, anyway. I do walk whenever I can, I think I walked about a mile and a half yesterday. That's not that hard. I may start some slow biking. When I first had lyme, after various things didn't cure me I decided I'd exercise it away. That did NOT work! LOL. I definitely could not tolerate rigorous, sweat-drenching exercise.
People assume all headaches are brain phenomena. Many small fibers invervate the scalp and musculature all over the body. I get severe headaches with projectile vomiting occassionally. Sore skin is a hallmark of peripheral neuropathy or small fiber neuropathy and many patients with small fiber neurop, or PN can't even tolerate bedsheets. Being unable to climb stairs was one of the symptoms that sent me to the cardiologist. At one point my hearing was so acute it felt like a knife every time some one dropped something....now I realize it was nerve inflammation and eventual degeneration (which lead to a lessening of symptoms or malfunction of an organ). Its a lot like a dying star becoming a flaring giant and then a dwarf.
I am not going to imply that you have what I have, that is too simplistic. However, your symptoms, as are many of those on this board, very similar to mine (yeast included).
You know what is best for you, and what you need to do at any given time to get better. I will gladly give you any resources I have. Skin biopsies are little punch biopsies, done with lidocaine anesthesia, on the foot, behind the knee, inner thigh and fore arm. Very little pain. It takes a month or more for results in general. It is a very small, barely invasive procedure. Getting the doc to do it might be more of a problem, as they have to justify why they are doing it. By the way, do you have restless leg syndrome? That is another tip off.
I don't have restless leg syndrome. My sore skin is not nearly as bad as you describe. But i agree it is all peripheral nerve inflammation...I'm not sure about neuropathy...it sounded like you were saying there was lack of sensation?
I have a portable hyperbaric chamber and that has reduced my headache frequency to VERY minimal. When I started taking argentyn23 (silver) I took too much and got a horrible migraine. A doc with lyme I spoke with had the same reaction (migraines from dieoff).
I use the chamber once or twice a week for 30-45 minutes. In the beginning i used it more. Its a godsend.
[This message has been edited by oxygenbabe (edited 20 April 2005).]
1994-97 my HMO Drs. pooh-poohed my complaints of increasing fatigue. When I developed paresis in June 1997 they said I had Guillain Barre syndrome, and gave me plasmapheresis, then steroids and then 90 gram IVIG treatments. I received eleven doses of the IG Aug 19 1997 - May 10 1999,
90 grams per treatment (one gram IG per kilo body weight).
IG gave me short term, partial relief of the paresis. But I still felt SICK. And I had to get cavitation surgery on my jaws without HMO help too, starting in 1997.
In 1999 a non-HMO Dr. said I had Lyme disease. I asked the HMO for antibiotics, but it suggested that antibiotics were too dangerous. They also said there was no evidence of Lyme or any other infection.
Paying out of pocket once again I began IV antibiotics on May 17, 1999: they enabled me to keep the paresis in check (my HMO Drs have not given me IVIG since May 10, 1999)
but when I asked my HMO Dr. to give me both IG and antibiotics he suggested that IG is too dangerous.
IV & later oral antibiotics did me more good than IVIG alone so it seems sensible (if politically incorrect) to boost immune system with IG and bash Bb with Abx.
Oral IG gave me some short term benefit, but nothing like the IV benefit.
Neil
They are denying your IVIG, despite Guillain-Barre? Holy cow! That is amazing. Insurance companies are a crock. I am glad to hear the oral abx keeps it in check.
My IVIG does cut down my numbness and tingling, but, I still feel sick...seasick, sore and beat up. Again, it does nothing for pain either, and mine wears off after about 3 weeks. I am due next week for another infusion and I feel like crap.
I would have to travel significantly out of state to get antibiotics again, and pay for them out of pocket, not to mention the doctor bill, but worst come to worst, I will, after hearing your story.
Thanks for sharing.
How do we know that the IVIG (intravenous immunoglobulins) given are those specific for eliminating Bb?
The immunoglobulins (antibodies) we normally make ourselves are very, very specific for fighting each particular pathogen and each particular strain, are they not?
Years ago it was referred to as a lock and key type of response (I'm showing my age
;-). And we all know how exact that has to be. Miss-cut keys don't fit the locks.
Does anyone know whether in the process of harvesting these immunoglobulins from donated blood, are the manufacturers specifically only harvesting those to fight Bb...and those to fight what strain of Bb (there are many strains)?
Is IVIG matched to your strain of Bb?
Just wondering. Just trying to understand.
Oxygenbabe, you said: ``Marnie, why did you hijack an IVIG thread to repost the stuff you always do about magnesium?''
Hijack?
``Mg is required for synthesis of proteins, immunoglobulins included.''
http://www.mdschoice.com/elements/elements/major_minerals/magnesium.htm
And this discussion IS about immunoglobulins. This IS a piece of the puzzle. A big one.
It takes enough Mg and Ca to repair the fab portion of the antibody/immunoglobulin specifically designed to knock off Bb. (Pubmed abstract)
There might be someone reading this thread (a newbie) who wants to know what nutrients it takes to make more of their own healthy immunoglobulins (antibodies) esp. if they are unable to get IVIG.
IV doses of Mg to treat lyme and/or to treat "autoimmune" diseases in a controlled setting (hospital, monitored and *sustained* until the infection has cleared) has unfortunately not been tried in this country. IMO, it should be considered.
[This message has been edited by Marnie (edited 21 April 2005).]
quote:
Originally posted by 8crow:
Neil,
My IVIG does cut down my numbness and tingling, but, I still feel sick...seasick, sore and beat up. Again, it does nothing for pain either, and mine wears off after about 3 weeks. .
it goes out of your system within 3 weeks. you should beat your dr down until he moves you up to a bi-weekly or a thrid week infusion schedule. it will make a huge difference.
1) In chronic infection the entire body is skewed toward an inadequate immune response generally with too much inflammation, one arm of immune system overactive the other underactive, with all kinds of signalling screwups imo that we don't even know about as its so complex
2) Adding in 2000-5000 donor pooled antibodies gives you a wide spectrum of effective antibodies against all kinds of stuff, giving your immune system extra arsenal to fight everything it normally fights and keeps in check and is now having big trouble doing because it has a massive lyme infection and coinfections like babesia etc. Thus in come the replacement troops to quiet everything down including HHV, EBV, all kinds of typical pathogens even gut pathogens etc
3) HLA subtypes are important as certain subtypes are more prone to difficulties in chronic lyme and thus you are getting a bellcurve of the populations HLA and it will quiet down your own response if you have the subtypes that are linked to chronic lyme through molecular mimicry. This may be one important key
4) We don't know how else these antibodies and immune components funciton to give NEW INFORMATION to our own immune systems while they are there (passive antibodies--we don't start generating them as a result).
This is like an overhaul of the entire immune system putting it temporarily much more back on track. It also affects the nervous system and I can say that for a fact as I feel distinctly different after it, I feel calmer and expanded, I called it "cottony plushness"--I am more in the world and able to feel it without being jitter, overstimulated, weak, bla bla bla.
Evidence based medicine shows it to be so widely effective in so many immune and nervous disorders that alone should be convincing and we will probably never understand all the intricate mechanisms.
Marnie, a proof of any hypothesis is testing. So go test your hypothesis please, and come back with a definitive case, even one, even though that would just be a weak correlation. If you can't, maybe you will someday consider that your hypothesis is incorrect.
quote:
Originally posted by oxygenbabe:Marnie, a proof of any hypothesis is testing. So go test your hypothesis please, and come back with a definitive case, even one, even though that would just be a weak correlation. If you can't, maybe you will someday consider that your hypothesis is incorrect.
My father had another heart attack a month ago and when they were trying to get him regulated heart beating to fast Do you know what blood work was called for?? thats right magnesium and potassium both were extremely low guess what they gave him the vary same which brought everything back to normal.
So I would say magnesium is pretty well needed for the heart and nerves to work?
And it is need for rebuilding of cells. Not a (hypothesis)
Marnie is right on the Mg.
Main Entry: magnesium chloride
Function: noun
: a bitter crystalline salt MgCl2 used especially to replenish body electrolytes
Main Entry: magnesium sulfate
Function: noun
: a white anhydrous salt MgSO4 that occurs naturally in hydrated form as Epsom salts and that in the hydrated form MgSO4�7H2O is administered in aqueous solution by injection to treat magnesium deficiency, to control convulsions associated with eclampsia, and to treat symptoms (as hypertension and convulsions) associated with nephritis in children
Magnesium: Its Proven and Potential Clinical Significance
from Southern Medical Journal
Chester Fox, MD, Delano Ramsoomair, MD, Cathleen Carter, PhD
Abstract and Introduction
Abstract
Magnesium is the fourth most abundant cation in the body and is present in more than 300 enzymatic systems, where it is crucial for adenosine triphosphate (ATP) metabolism. Deficiency states result in increased insulin resistance, as well as increased smooth muscle and platelet reactivity. Magnesium deficiency has been shown to correlate with a number of chronic cardiovascular diseases, including hypertension, diabetes mellitus, and hyperlipidemia. Intravenous magnesium has been used therapeutically in critical situations such as status asthmaticus, torsades de pointes, and preeclampsia. Few controlled studies exist regarding the therapeutic uses of oral magnesium supplementation in chronic cardiovascular diseases. Randomized clinical trials are urgently needed to determine whether magnesium supplementation will alter the natural history of these disease states.
Introduction
The clinical significance of magnesium as an important intracellular cation has been implied for decades.[1] Recently, magnesium deficiency has been implicated in the pathogenesis of a host of clinical disorders.[2] In an editorial, Resnick[3] stated, "A link between magnesium, diabetes mellitus, and hypertension seems established beyond a reasonable doubt."
Magnesium is the fourth most abundant cation in the body. It is involved in more than 300 enzymatic systems, such as adenosine triphosphate (ATP) metabolism, activation of creatine kinase, adenylate cyclase, and sodium-potassium-ATPase. Magnesium deficiency has been implicated in such diseases as diabetes, hypertension, cardiac arrhythmias, acute myocardial infarction, and atherosclerosis. This has come under increasing scrutiny in several recent publications.[3-5]
--------------------------------------------------------------------------------
Section 1 of 9
Chester Fox, MD, Delano Ramsoomair, MD, Cathleen Carter, PhD, Department of Family Medicine, State University of New York at Buffalo
Magnesium: Its Proven and Potential Clinical Significance
from Southern Medical Journal
Magnesium Metabolism and Physiology
The total body stores of magnesium are between 21 and 28 g in the average 70 kg adult. Normal serum magnesium usually has a range of 1.7 to 2.5 mg/dL. Most of the body's magnesium is in the skeletal bone mass, which accounts for more than 50% of the body's stores. The remainder is located in soft tissue, of which only 0.3% is located extracellularly. The common nutritional sources of magnesium are green leafy vegetables, legumes, nuts, and animal protein.[6]
Of the total magnesium consumed, approximately 30% to 50% is absorbed, mainly from the upper small intestine. The level of absorption of magnesium varies, depending on endogenous magnesium status. Magnesium is excreted via the kidneys. When magnesium stores are normal, excretion usually equates with absorption. There is a circadian excretory rhythm, with the maximal excretion occurring at night. Approximately one third of serum magnesium is bound to albumin and therefore is not filterable at the glomerulus. A total of 20% of serum magnesium is filtered by the kidneys, from which 50% to 60% is reabsorbed by the ascending loop of Henle, in contrast to other major electrolytes, which are reabsorbed principally at the proximal loop of Henle.
Extracellular magnesium in serum is 33% protein bound, 12% complexed to anions, and 55% in the free ionized form. At the cellular level, magnesium appears to influence the properties of various cell membranes; this process is thought to occur by means of calcium channels and ion transport mechanisms. Calcium flux is inhibited by magnesium from sarcolemmal membranes, through competition for binding sites on actin and via changes in the adenylate cyclase-cyclic AMP system. The next known physiologic role of magnesium involving cell membranes pertains specifically to its interrelationship with the sodium-potassium-ATPase pump. At the cellular level, magnesium also serves as a cofactor for many intracellular enzymes that generate energy via hydrolysis of ATP. It is also involved in DNA transcription and protein synthesis. Magnesium is responsible for the maintenance of transmembrane gradients of sodium and potassium. Patients with refractory hypokalemia will often not respond to potassium supplementation until magnesium deficiency is corrected.[6-8] As a result, magnesium deficiency should be considered whenever severe potassium deficiency is encountered.
From this short review, it is apparent that magnesium plays many roles in energy metabolism: as an enzyme cofactor, in electrolyte balance, and in the maintenance of the properties of various cell membranes. From this background, magnesium deficiency is being considered as an important mediator in various medical conditions.
Magnesium: Its Proven and Potential Clinical Significance
from Southern Medical Journal
Diagnosis of Magnesium Deficiency
The serum magnesium level correlates poorly with total body stores.[4] As a result, there have been several intracellular assays of magnesium from muscle biopsy, lymphocytes, and red blood cells. These assays include nuclear magnetic resonance (NMR) spectroscopy[9] and ion-specific electrode measures.[10] However, these tests are expensive and often require fresh specimens and are therefore not clinically applicable at present. For these reasons, despite its limitations, serum magnesium determination is deemed of value in assessing changes in magnesium status and is the entry level test for the evaluation of possible disorders of magnesium metabolism. When the serum magnesium level is low, intracellular magnesium is also low.[11,12] However, many patients may have normal serum magnesium levels but be intracellularly depleted.[6,13] Therefore, if the serum magnesium level is low, the patient is deficient; however, if it is normal, the patient may still be magnesium deficient.
Magnesium: Its Proven and Potential Clinical Significance
from Southern Medical Journal
Biologic Mechanisms
A review of the literature reveals three biologic mechanisms that could potentially explain the physiologic effects of magnesium in hypertension, diabetes, and hyperlipidemia. First, magnesium deficiency causes a dysregulation of the Na-Mg exchanger, resulting in higher intracellular sodium and higher blood pressure. Second, a relatively low magnesium level creates an intracellular imbalance between calcium and magnesium, which results in increased vascular tone in the smooth muscle of the artery and therefore increased blood pressure. Third, magnesium deficiency causes insulin resistance, which in turn causes hyperinsulinemia, resulting in hypertension, diabetes, and hyperlipidemia.
Dysregulation of the Na-Mg Exchanger
A study of cyclosporine toxicity in spontaneously hypertensive rats found that rats placed on a low sodium diet did not get hypertension or nephrotoxicity, but during a high sodium diet, both these diseases occurred. These deleterious effects were blocked by magnesium supplementation,[14] revealing a causal relationship between magnesium and hypertension in spontaneously hypertensive rats. This result has implications for clinical trials because it may be that the hypotensive effect of a rigorously followed low-salt diet obviates the need for magnesium supplementation to improve blood pressure even in the face of magnesium deficiency. Some of the negative clinical trials for magnesium replacement did have patients on low salt diets.[15,16] This defect in the Na-Mg exchanger that results in higher intracellular sodium and lower intracellular magnesium was found in at least three other studies of patients with essential hypertension.[17-19]
Increased Vascular Tone
Again, both rat and human studies confirm that in the presence of decreased magnesium, there is increased intracellular calcium, resulting in increased vascular tone and hypertension. In a basic physiologic study that looked at isolated aortas from both normotensive and desoxycorticosterone acetate (DOCA)-salt hypertensive rats, it was found that "changes in extracellular magnesium concentration differentially alter endothelin-1-induced contraction in aortae from normotensive and hypertensive rats, possibly by interfering with calcium utilization during contraction."[20] In other animal studies, a salt load produced an increase in intracellular calcium with a concomitant decrease in magnesium.[21-23] This intracellular imbalance between magnesium and calcium has also been found in human studies.[24,25] There appears to be a clear connection between decreased magnesium, increased vascular tone, and essential hypertension.
Insulin Resistance
Insulin resistance has emerged as a major pathophysiologic mechanism for the creation of atherosclerosis in the body. Magnesium deficiency has clearly been shown to create insulin resistance.[24] This may well be a common link in increased cardiovascular risk, because hyperinsulinemia is related to hypertension, diabetes, and hyperlipidemia.[26]
This discussion shows strong evidence linking magnesium deficiency with altered physiologic states and chronic disease.
Magnesium: Its Proven and Potential Clinical Significance
from Southern Medical Journal
Prevalence Of Hypomagnesemia
The prevalence of hypomagnesemia has been found to vary widely, depending on the patient's clinical condition. In a general population, 6.9% of patients were shown to be hypomagnesemic.[6] In hospital inpatients on a medical-surgical floor, there was a prevalence of 11%,[27] while in the intensive care unit it was found to be 20%.[28] In a postoperative intensive care unit setting, the prevalence was 60%.[28] A study of diabetic patients established a prevalence of 25%.[29] We did a 2-month period prevalence study of magnesium levels for 120 patients in an urban minority clinic and found that 24% of hypertensive patients and 25% of diabetic patients were hypomagnesemic.[30]
Magnesium: Its Proven and Potential Clinical Significance
from Southern Medical Journal
Epidemiology
Epidemiologic studies have shown an inverse relationship between magnesium in the drinking water and cardiovascular mortality.[31,32] This association between magnesium in drinking water and ischemic heart disease was reconfirmed in a major review of the literature done by epidemiologists at Johns Hopkins University.[33]
The largest epidemiologic study of magnesium status was the Atherosclerosis Risk in Communities (ARIC) study, published in 1995.[34] This was a 5-year, longitudinal study that examined 15,000 patients and compared dietary magnesium, serum magnesium, and race with the prevalence of hypertension, diabetes, and atherosclerosis. The study controlled for the potential confounding variables of age and body mass index. The results showed that African Americans had lower dietary magnesium intake along with lower serum magnesium levels, which significantly correlated with a higher prevalence of hypertension, diabetes, and atherosclerosis.
Finally, a 10-year study of 400 high-risk subjects predisposed to coronary artery disease were divided into two groups -- one that received a magnesium-rich diet and another group that received a "usual" diet. Increased dietary magnesium was shown to correlate with fewer cases of sudden death, less total mortality, and a lower incidence of hypokalemia, hypomagnesemia, and other coronary risk factors. The group that had lower dietary magnesium also had a lower mean serum magnesium level.[35]
Magnesium: Its Proven and Potential Clinical Significance
from Southern Medical Journal
Clinical Signs and Symptoms
Magnesium deficiency is almost always asymptomatic. There are no pathognomonic signs and symptoms of the magnesium deficient state. The situation must be severe if clinical manifestations are to occur. This would also always be accompanied by a low serum magnesium level. Symptoms, when they do occur, generally fall into the categories of cardiac effects, metabolic effects, and neurologic effects (Table 1).
Clinical Correlations
Magnesium has been associated with a number of chronic diseases, such as hypertension, diabetes mellitus, and hyperlipidemia. Studies showing the effect of magnesium supplementation on these clinical states are summarized in Table 2. We found 15 studies in which magnesium supplementation was used to measure the effect on hypertension. Ten of these studies (67%) showed a statistically significant decrease of blood pressure with the use of magnesium. In patients with diabetes, 3 studies looked at the effect of magnesium replacement on hemoglobin A1C. None of these investigations showed a statistically significant effect. Two studies examined the effect of magnesium supplementation on hyperlipidemia. Both of these showed decreased triglycerides, and one of them showed a decreased low-density lipoprotein/high-density lipoprotein ratio.
Diabetes Mellitus
The clinical correlation between decreased plasma magnesium and the diabetic condition was first proposed by Londono and Rosenbloom[36] in 1971. This was shown in diabetic children after a glucagon injection induced a significant decline in plasma magnesium levels.
The inverse relationship between glycemic control and plasma magnesium levels has been attributed to increased magnesium urinary losses. McNair et al[37] observed that in the presence of hypomagnesemia, magnesium plasma levels were inversely correlated with fasting blood glucose values and urinary magnesium. The conclusion was that net tubular reabsorption of magnesium was decreased in severe hyperglycemia. The relationship between metabolic control and impaired magnesium balance was confirmed by Fugii et al,[38] who analyzed magnesium levels in plasma, erythrocytes, and urine of diabetic patients.
The role of magnesium in the pathogenesis of macroangiopathy and microangiopathy have been the subject of several investigators. Seelig and Heggtveit,[39] as well as Mather,[29] suggested that atherosclerotic disease may be prevented by normal magnesium homeostasis by counteracting the adverse effects of excessive intracellular calcium, thereby retaining intracellular potassium and contributing both to the stabilizing of plasma membrane and maintaining the integrity of subcellular structures.
Hypertension
Considerable evidence suggests a linkage between magnesium deficiency and hypertension. One study showed reduced intracellular free magnesium concentration in hypertensive laboratory animals as well as in human subjects. The researchers described an inverse relationship between intracellular magnesium concentration and blood pressure.[19]
Magnesium has been implicated in a regulatory role in a variety of cellular ion channels and pumps that modulate peripheral vascular tone; these include sodium-potassium-ATPase and calcium-activated potassium channels, as well as calcium calmodulin binding. In each of these instances, low intracellular magnesium levels would potentiate calcium-dependent vasoconstriction.
Do you need more.
Magnesium: Its Proven and Potential Clinical Significance
from Southern Medical Journal
Therapeutic Uses
Cardiac Arrhythmias
Magnesium deficiency in the pathogenesis of cardiac arrhythmias has recently been accepted. This is exemplified in the latest Advanced Cardiac Life Support protocol for the treatment of torsades de pointes. In experimental models, magnesium deficiency results in a number of electrocardiographic alterations, as well as changes in automaticity and conduction. Among the electrocardiographic changes are prolonged PR interval and QT interval, premature atrial complexes, atrial tachycardia, and fibrillation. Ventricular premature complexes and tachycardia have also been noted, in addition to ventricular fibrillation and torsades de pointes.
Magnesium is a crucial cofactor in the sodium-potassium-ATPase enzyme system, which contributes to the sodium and potassium flux across cell membranes. This flux in turn determines the potential needed for depolarization of cardiac muscle. Of note, digitalis blocks the sodium-potassium-ATPase enzyme system; it has been shown in the dog model that hypomagnesemia facilitated digitalis-toxic arrhythmias and that most of these arrhythmias were terminated with intravenous magnesium sulfate.[40]
Iseri et al[41] showed that ventricular arrhythmias recalcitrant to antiarrhythmics (lidocaine or beryllium) or to potassium supplementation responded to magnesium used as a therapeutic agent. This response occurred even in the presence of normal serum magnesium levels.
In several of the cases mentioned, the arrhythmia appeared to be that of torsades de pointes, and studies have indeed shown therapeutic confirmation in the abolition of this arrhythmia by bolus infusion of magnesium.
Acute Myocardial Infarction and Ischemic Heart Disease
Magnesium's effect as it pertains to acute myocardial infarction has been difficult to interpret, especially with respect to mortality rate differences.[42] This has occurred because of nebulous reporting of concomitant use of therapy with �-blockers, aspirin, or antiarrhythmics and different lengths of observations.
Schecter et al[43] concluded that the cardioprotective effect of magnesium was more of a general myocardial protective effect than one solely due to reduction of arrhythmias. They postulated that among the possible mechanisms included were coronary vasodilatation, reduction of the catecholamine effect in myocardial tissue, and calcium-magnesium interactions at the cellular level preventing ischemic deposition of calcium in cardiac mitochondria.
The LIMIT-2 study of 1992 was the first large-scale randomized placebo-controlled trial to show a decrease in total mortality of the magnesium-treated group; this effect reached statistical significance.[44] The second large-scale trial to study survival after myocardial infarction in patients given magnesium infusion was the ISIS-4 trial.[45] The ISIS-4 study showed no survival benefit from the addition of intravenous magnesium. In a recent review of these contradictory results, Hennekens et al[46] stated, "Nonetheless, the data suggesting that early magnesium therapy reduces reperfusion-related injury have led to the hypothesis that the longer time between the start of myocardial reperfusion and the achievement of therapeutic serum magnesium concentrations may account for the null finding in ISIS-4."
Preeclampsia
The use of parenteral magnesium as a therapeutic modality in the treatment of preeclampsia is time honored. The proposed mechanism of action relates to magnesium acting as a calcium antagonist either at the membrane level or intracellularly. Although magnesium-induced reduction in vascular tone is partially explained by altered calcium flux,[2] it may also produce this effect by altering the prostaglandin system. Watson et al[47] showed that magnesium facilitated release of potent vasodilatory prostaglandin in a dose-dependent manner. They suggested that increased prostaglandin is the explanation for magnesium's therapeutic effect in preeclampsia.
Asthma
The utility of magnesium as a therapeutic modality in the treatment of asthma has been alluded to for decades.[13] Two studies have shown that magnesium infusions increased the forced expiratory volume in 1 second (FEV1),[13] though the mechanism of action on the respiratory tree remains to be elucidated. One proposed mechanism is smooth muscle relaxation at the bronchial level. This is similar to the effect exerted by magnesium on vascular smooth muscle by means of its influence on calcium channels.[2]
Magnesium: Its Proven and Potential Clinical Significance
from Southern Medical Journal
Conclusion
Magnesium is critical to normal human homeostasis. Pharmacologic doses of magnesium given intravenously have been used to successfully treat such critical conditions as torsades de pointes, preeclampsia, and status asthmaticus. The usefulness of magnesium in acute myocardial infarction has yet to be fully elucidated. Deficiency states have been shown to correlate with the chronic cardiovascular diseases of hypertension, diabetes, and hyperlipidemia. Numerous studies have called for randomized controlled trials to determine whether magnesium replacement will alter the natural history of these diseases. Previous trials of magnesium supplementation have not answered the question of whether magnesium replacement would improve the health status of patients afflicted with chronic cardiovascular diseases.
Research on magnesium continues to grow as exemplified by a recent paper on the inverse relationship between prenatal magnesium sulfate exposure and cerebral palsy or mental retardation among very low birth weight children.[48]
Randomized controlled trials need to be done to see whether magnesium supplementation will ameliorate the debilitating effects of hypertension, diabetes, and hyperlipidemia, especially in minority populations.[34,49] The clinical implications of replacement therapy, if successful, would have a profound effect on improving the health of the population.
I think its important dont you?
It just in no way, absolutely no way, cures lyme by generating proper antibodies or whatever mechanism she thinks.
I'm off lymenut for a while.
Its lymenet and I do read your stuff and there is a correlation in my thred to yours its Mg is needed for tons of things in the body and there is plenty of (by the medical community) Why arent we studying this more Medical professionals.
So bashing M for her posts wasnt right IMO.