I have been recieving IVIG by infusions for over 15 mo's now

I recieve 75 grams over a three day period
every six weeks

After 5+ yrs of constant ABX( combos, mombos,you name it!!), which included three rounds of IV ABX 4-6 months in duration each, antivirials--and just about every other common modality(and some not so common) used and tried by the Lyme community,( metals, yeast, this , that---on and on!!!) I have to say that the IVIG has made the biggest singular difference in dealing with the conditions that I have

A year ago I could barely walk---tonight I went to a spinning class at the local YMCA, and lifted some light weights--quite a difference from a yr ago

I have not been on ABX for over 6 months---and I am crossing my fingers that this improvement is lasting and a **Keeper** as they say!!

I recieve the IVIG on the basis of low IgA, IgG, and IgM--which are antibody subclasses--not a totally uncommon condition amoungst lyme sufferers( but not a mainstream condition either) It's **official*** title is "Common Variable Immune defeciencty"

Also a DX of Peripehial(sp) neuropathies( pretty common DX in Lymeland)

It's obivious that it has NOT helped to correct my spelling defiects (he-he-he)

I have done quite a bit of researching into Gamma and have just recently attended a conference on immune defecientcys--so I'm fairly well versed--for a layman(well, I'm not truly a layman)

This is not to suggest that anyone else shares in my immune system **issues**,I just felt that since I am dealing with this on a day to day basis--I would respond to your query and see if I could be of any further assistance

Since many PWL may have differing opinions on Gamma--some one else will come along and share a different perspective with you--all are indeed valuable information

If you wish to contact me off-board--I'm at [email protected] We have talked before off-board

PS...How did the Mito-disorders specialist visit work out for you???

I want to say that I went on 500 mgs of L-Carnitine by Source Naturals, and almost
overnight, it knocked my headaches back. This is a clue for me in some ways.

Yankee, I will write you off-line to talk
more in depth about some things.

Again, let me ask you on the immunoglobulins,
is there an antiviral in yours? Do you feel
scared of the possibility of infection of
AIDS, etc?

ZipZip, can you let me know how your treatment goes, and can you email Dr. K's
phone number so I can get info for my alternative doc.

As for other alternative routes that have kept me going--for about a year I did B12 (methylcobalime shots). Excuse my spelling,
and that helped with seizures and neuro symptoms.

I now tolerate about half a bottle of IV
chronic illness supplements (includes C,
minerals, Bs, magnesium, taurine). I
do this every other week due to $$. Also,
in between I have been taking an IM magnesium
chloride shot in the butt, and immediately,
I feel so much better in aches and pains.

I have to take pancreatin for my amylase
and lipase levels that will elevate now and
again. I don't tolerate drugs any more,
and I am on very few--Clonezapam for seizures, Gastrocrom for food allergies,
asthma inhaler for rescue. I rotate my
foods to help avoid more allergies, but I
am not always strict enough. Sometimes I
cave in.

ArtistDi---I too, have wonderful results from taking Carnitine, though I take Acetyl-L-Carnitine. I also have good results from taking CoQ10.

I take 1gram daily of Carnitine, and 200-300 mg of CoQ10. I have taken the source naturals brand and been very pleased.

Yes, I am concerned with the fact that I am using a blood based product---but I am more concerned with newly emerging diseases than AIDS or Hep. C. All gamma is treated with solvents and detergents to break up the viruses, and PCR ( and other) testing is then performed for said viruses. Pasteurization then takes place( with heat) to remove any other infectious agents.

I have never heard of antivirals being included in the IVIG-- Gamma by intravenous access, since it is treated as I mentioned above, maybe this is something that they may add to the Gamma IM, or subcutaneous infusions of Gamma??

This may not help some feel **safe** using gamma---but you drink milk, don't you?( some do not, of course, for various reasons which are too long to cite here) and milk basicly goes though the same types of treatment to remove any infectious impurities present.

This may be a very quick example--I do know that there are concerns with milk for many---but almost all of us have drank some at one time or another and have lived to tell about it---unless of course, you were deathly allergic to your first cow milk---and then, in which case you would not be reading this, or dealing with Lyme disease because the moo-juice has sent you back to your maker.( Just a little good natured humor here--DON'T GET MAD AT ME FOR TRYING TO BE FUNNY!!) Us lyme sufferers need a laugh now and again!!

OK...I'm back to being totally serious

So...my personal ***take*** on using Gamma--is, it's about as safe as it can be---within the boundaries of our current medical knowledge. Nothings a 100% safe.

Living with the devesating effects of lyme disease made my choice fairly easy for me...

Seriously immuno-supressed from fighting lyme, viruses,ect. and also finding out along the way that I am lucky enough to truly have a chromosmal immune deficiency-- which in and of itself is not all that serious( but add a immuno-supressive bacteria such as B.B and it's ability to activate latent EBV, CMV, and HHV-6--and you have a patient who resembles a petrie dish of infectious agents) I had a subclass antibody total of a whole whopping 180!!

Normal levels vary, but are generally between 1,000 and 1,700--depending on which lab you use.

This deficiency---needless to say--was just about letting the lyme effect every part of my system--I had osteomyelitis in my pubic bone-which required high dose ABX and hbot

Mycoplasma pneumonia( the type that shows up on the chest x-rays and in the blood work) not all mycoplasma infections can be cultured--as we all are too aware of on lymenet. This has caused some permanent scaring of my bronchial tubes and lungs. My lungs would literally feel like burning crepe paper. Shortness of breath,coughing, well--you get the picture

And all the more typical lyme manifestations which are discussed in great detail here on lymenet-so I won't go into those.

The long and short of it.......I did not really have a choice---and due to a genetic blood clotting disorder---Factor V Lieden( which has nothing to do with lyme)I am not a caniadate for The Marshall Protocal.

Mike:Yes, prior to contacting Lyme disease in Germany back in 1997 (I was treated fairly quickly thereafter-I'm lucky in the fact that at least I know when and where I contacted this disease--most are not so fortunate) I suffered from chronic sinus infections, strep, staph, ect.

I was sent to a immunnilogist many moons ago---who did catch the low IgG subclass deficiency--but it was not serious enough to treat with Gamma, and at the time---each infection pretty much resolved it's self with a round of ABX

No genetic testing was done at that time ( this testing is not for the weak of heart, nor for the self-employed amoungst us lyme sufferers---but that is another topic best served in the general forum)

So, if you take someone who didn't have a powerhouse of a immune system to begin with, and you add immuno-**supressive** borrelia, and immuno***destructive*** viruses, well--lets just say my batting average wasn't too good!

But to answer your question--I do believe it has helped with all my mentioned SX, in my long ,lyme life saga posted above( boy, I'm tired just thinking about it, let alone reading it all!! Anyone snoring yet??)

What kind of CoQ10 are you taking? Are you
taking the kind that melts in your mouth, or
a powder from a capsule?

Thanks for this response. I am thinking of
heading in this way. My alternative doc
also wants me to try the glutathione push
along with phoscol (sp) to help with the
neuro stuff. One of my main concerns is the
seizure activity that has been brewing over
the last couple of years.

Here is a quote from the article (sorry, I do not know the source...the person just photostated the article which was an article on lyme disease):

The article may have appeared in Newsweek. It is titled :" A Disease in Disguise" by Geoffrey Cowley and Anne Underwood. It is under "Medicine".

" Alice Levitt got sick at the age of 11 while growing up in Greenwich, Conn., and suffered for five years before she was diagnosed in 1997. After six years of failed antibiotic therapy, she had the good fortune to meet Dr. Amiram Katz, a Yale neurologist with a private practice in Orange, Conn. Katz used an experimental regimen of intravenous immunoglobulins (naturally occuring antibodies) to tame her over-zealous immune system, and within a month Levitt had her life back. Now 23, she lives in Essex, Vt., where she is working for a theater company and writing a musical comedy."

Go for it!(I would.) Our own antibodies are damaged..."Fab" portion BECAUSE Mg is deficient. This damages our otherwise healthy antibodies which would/should eliminate the disease. Documentation follows:

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 (www.pubmed.com - then type in the #))

The SYMPTOMS will not all go away UNTIL your Mg levels are restored. EVERY lyme symptom is a result of a very serious Mg deficiency. I have traced them...one by one...

Citrates also (besides H, H2O2, et al) INactivate PFK...an enzyme Bb is dependent on.

Find (on the internet): AlkaMax PH Balance by TriMedica. Read it CAREFULLY (watch out if K levels are already high!!!)Read the INGREDIENTS!!!

Detox...research activated charcoal...in depth.

It may also work in lyme for those who have the susceptible HLA subtype--as you'll get the "normal" HLA subtypes too

It has more than antibodies, has other immunoglobulins

1)Did you have bloodwork or an MRI to have insurance coverage for Immunoglobulin?

2) BTW, if you had an MRI for Lyme, which hospital did you go to?

ArtistDi--I have used two brands of CoQ10 that I have liked, Source Naturals, and the Brand that I purchase thru the life extension foundation www.lef.org
Both are soft gels

Foggy: Marnies' post did a good job of explaining some of the theories surrounding Gamma and Borrelia infections

As noted by other posters on this thread lyme can cause the immune system to become over active, which is the reverse of my condition( low antibody production made worse by immuno-supressive B.B) So you can have a over active, or under active immune response--or brace yourself--certain areas of the immune system can be perfoming below par, while others may indeed be in over--drive

Since Gamma is immuno-modulating, it can actually correct both those problems--strenghening a weakened or supressed immune system by adding antibodies that are being literally used up by the immune system in the fight against B.B,( or those that are not being produced in high enough amounts to begin with) or providing a down regulation of the certain areas of the immune system that have gone into over drive(in dealing with the neurotoxins, or endotoxins produced by the bodies war with B.B--this requires further explaination and time and space does not permit)

This down regulation that I mentioned above is not the same as immuno-supression( the feared Lyme word)of the kind one would experince if one was on immuno-supressive drugs--such as steroids, MS drugs, and RA drugs, such as ebrel, ect., ect.

It can calm down the inflammatory response--one of the reasons that it has been used sucessfully for neuropathy patients

Oxygenbabe: Immunoglobulin is another name for antibody, there are five classes, IgA,IgD,IgG,IgM, and IgE

IgA: antibody found in blood and secreted into tears, saliva, and on the mucous membranes of repiratory and intestinal tracks

IgD: antibody whose function is poorly understood at this time

IgE:antibody found in trace amounts in the blood and responsible for allergic reactions

IgG: Most abundant and common antibody, functions mainly against bacteria and some viruses, it is the only antibody that can cross the placenta from the mother to the fetus. IgG accounts for 60-70% of the antibodies ciculating in the bloodstream

IgM: antibody found in the blood. IgM functions in much the same way as IgG does, but is formed earlier in the immune response. It also activates complement

Regarding the HLA-subtypes, certain HLA Genotypes are more prone to to have complicated cases of B.B--and those cases may manifest a more arithitic(SP)syptomology than those with other, less suspectable HLA-Genotypes--but I must admit--I have never heard of recieving a more normal type of HLA Genotype from IVIG--did you see this in research papers--if so, do you know where they may be accessed from???

A Haplotype(HLA) is a series of gene clusters on the sixth chromosome that determines histocompatiability antigens

HLAA, HLAB, HLAC, HLAD are the four major groups--It is the HLAA type that has been implicated as a common type for those with chronic lyme, esp., those with RA like syptomology

Other **types** may have tendencies for other types of infection and/or disease states--but since this is about Borrelia--no sense get

ting into that kettle of fish

Many B.B sufferers will have transient IgG subclas deficiencys, usually this will be apparent on the IgG1, and IgG3 subclasses--so if you are not treating the active infection, the immune system will keep on ***burning up*** IgG classes 1+3--whether you replace it or not.

Many who get the disease at least somewhat under control will no longer need the IVIG, but I have seen some who need it for extended periods of time--like anything esle with Borrelia infections--there is no cut and dry protocal that is capable of producing a one size fits all regrime!!!!

I did some extensive pubmed and other research on gamma--I may have saved some of it, suffice to say, you're going to get the range of HLA subtypes...I'll try to find it later.

There's someone on CFS_Experimental who was bedridden before gamma--now, she built up from 2.5 grams initially to 40 grams a week.

What I'd LOVE to know when you talk to your doc next is why he/she decided on a protocol of 75 grams in 3 divided doses every 6 weeks...why she, in contrast is at 40 grams every week...

Maybe it's all trial and error--but that's a big difference (in expense, too, if you don't have obvious subclass deficiencies and can't get it paid for. Its great you get it paid for!)

I was very encouraged by her story as, being so sensitive, I am starting very slow. And she started with the low doses too. I drip as slowly as I can, and I still get some self-limiting reactions that I don't mind (such as, one time, low grade fever and chills; muscle aches, etc) Forget if I posted this already, but I talked with Baxter at some length. There's 2% glucose in my solution, which didn't thrill me, but that's apparently fairly low for gamma solutions. They put in glucose and glycine for osmolarity. Anyway, I get hungry as a result when getting the gamma.

So she built up over time. She noticed the major improvements after 3 months. How about you?

My internal sense of it is that it gives a whole new slew of information to my body. At that point, I had this image of the lyme and other bugs (candida) going, "Oh--gee--huh!" Not that they were such evil bugs, they'd just been doing what the local orders were...and now there were new orders. It was an interesting sort of subjective insight, but I think it's true. We feel these are dastardly bugs when they make us sick, but its their strain, our genetics, and whatever happens over time, that leads us into a loop that may be hard to get out of.

My solutions to lyme are: hyperbaric oxygen, chocolate, and maybe gamma. Oh I shouldn't forget, weekly vitamin/IV drips with 2-3 cc of magnesium (essential for improving sleep, which is one of my main problems since getting lyme), and a glutathione chaser. ALso, I've been using a high quality steam distilled organic lavender oil from Nature's Gift lately and it seems to be helping. But the main things so far are oxygen and chocolate (the latter for a good mood. It's my natural antidepressant. I get sharfen-berger unsweetened chocolate to avoid sugar.)

Also, for those into the woo-woo, Cynthia Crane over on CFS_Experimental is well now, much of it through alternative therapies, but some of it through something called immunics. I'm starting to experiment with that although it's the kind of thing you have to suspend your disbelief over, and suspend it again. It's supposedly a way of talking to your immune system. Gary Blier, at lymefree.com also has worked with people's immune systems this way and I talked to one former lymie/cfids/allergy ridden person who is well now as a result. But that approach is so bizarro-del-mundo you just have to try it without feeling too foolish. Which I am doing.

I would say hyperbaric got me 50% of the way and holds me pretty steady...I am now encouraged that I can slowly build up the gamma over months and we'll see what it does Thanx again Yank, and if you can find out why your doc chose that amount and that timing I'd appreciate it.

I notice a distinct difference from the gamma. I am wondering if it is responsible for some measured improvements over the last few months. I have not been getting a lot, however, by any standards.

When I get it, for about an hour afterwards, I feel REALLY different.

I also have some self-limiting symptoms from it, you could call them a herx, but they are typical in the literature. Two times ago I got a lot of muscle aches, not this time. But I get a mild fever and chills, I got very sleepy last night, and somehow it affects my digestion. It may bother my gallbladder again, it has the last few times. I also feel like I just don't have as much of an appetite. I suspect this is due to the inactive ingredients, which include glycine and glucose. I also get very hungry during the drip which I think is the glucose.

Well, I'm idiosyncratic so...most people probably won't have these reactions. I took a full 2 hours to do the 5 grams. I drip slower than anybody apparently but I think its safer.

1)Is there one (or more) factor that decides whether you should go on IVIG?

2) What symptoms does it help most?

3) What does it do (i.e. biologically)?

4) How often do people generally get it?

5) Do a lot of Lyme doctors know about and use this treatment or is it very scarce?

Thanks, I'd appreciate it if anyone who knows about it and has experienced it could try to answer my questions.

--Annie

------------------
``The best way out is always through.'' -Robert Frost

Click to join Lyme_Camp

Yankee, do these Immunoglobulins or Gammas contain Lyme antibodies or is it just plain Immuno or Gamma?

**Oxygenbabe, how much does your iv cost,
if insurance isn't covering it? I have heard from another patient of Dr.K's that
iv would cost $1000 (without insurance).

Thanks,
Annie

------------------
``The best way out is always through.'' -Robert Frost

Click to join Lyme_Camp

Re: antibodies, here's from the net:

The final products contain more than 95% IgG (not less that 90% in monomeric), less than 2.5% IgA, and a negligible amount of IgM. Among the IgG subclasses, IgG1 varies from 55% to 70%, IgG2 from 30% to 38%, IgG3 from 0% to 6%, and IgG4 from 0.7% to 2.6%, according to the size and composition of the donor pools used in the various proprietary intravenous immune globulin preparations. Immune globulin preparations also contain certain immunomodulating peptides including soluble CD4, CD8, cytokines and HLA molecules, as well as antibodies against exogenous antigens, viruses, and bacteria.

Intravenous immune globulin preparations contain IgG antibodies against a wide spectrum of normal human proteins and anti-idiotypic antibodies directed against Fab, the antigen-binding region of these autoantibodies, because they are derived from large pools of human donors. In addition, they contain a broad range of immune antibodies directed against foreign antigens and pathogens, reflecting the size and diversity of the donor population.

Oxygenbabe: Sorry that I did not get back to you sooner RE: the reasons for the timing and gram amount of my IVIG

A few things that need to be corrected before we go any farther along here......

"I"... Am a "She", not a "He"

I'm a 47 yr old pharmacologist---I used to mix up the IVIG bags, along with other pharmacological agents( such as chemo--yada-yada) in my short stint at the DMC ( Detriot Medical Center--and let me tell-ya, there's an old saying in Detriot: "To know Syphillis is to know medicine" ) I went *corporate* after that.I am now retired after 23 yrs in the business---since I no longer work---and since I do have a few intials after my name--I can not **ethically** come out here and give advice( I can post "facts" on products only)---only try to share with you my own experinces with IVIG and a 5 yr fight with Lyme and Co.

Also I am not **spin dancing**, whatever that is??( fill me in ,if you can!) It's spinning--where you get on a stationary bike and ride in a classroom type setting with about 20-50 other folks. You use different resistance settings on the bike to make it easy--or tougher---I do this because it is **no-impact** If I tried to jump up and down--with the polyarthritis that I have---I just don't *think*, it would be a pretty picture.

Regardless....After 5yrs of ABX, my neuropathies and gait issues were no better--actually they were gradually getting worse--I had to purchase a cane

After 6 mo's of IVIG---I noticed a big improvement in my gait( obviously no more cane, kids)--and almost no more neuropathy pain----Though I am sure if I was out jumping around *Spin Dancing*( if that's what you do) that I would certainly feel some *pain*

Regarding a formalized IVIG protocal for lyme--I think that's a looong time coming(sadly so) there are just too many variables

I know for those who are self-paying--you want to find out what works best for the many--but this is really not the product to second guess here. Doctors sometimes have more knowledge than we give them credit for here--best to listen to them on this one!!

Per Your question about the dosage of IVIG--it has alot to do with your DX--mine was CVID, and CDPN---Chronic demylenizing polyneuropathies--so that is where the dosage and duration intervals of treatment comes in--per my immunilogist--who orders this

My LLMD--who was thrilled that I was able to recieve this TX---because it has been his experince that unless you fall into one of the approved diagnoses--no insurance co. in the land covers it for just a DX of Lyme---unless they can prove that your immune system has been supressed/ malfunctioning(overactive) by dealing with the disease(lyme)

That's why you have had to pay for treatment--because it is still considered *experimental* with lyme patients--unless you can find another DX.( not a bad idea??)

For example:

Some insurance co. cover for a DX of MS( do you *think* a few peolpe around here could fall into that dx pretty easily??)--if the are a certain amount of lesions( and a certain circumfrence(sp--size) There are other dx's that some of us could fail into... just bainstorming here....

Anyway......
Plain and simple: Each DX goes by a different protocal, body weight of patient( sometimes)---and the biggie here---

If there is an IgA deficency, in those people whose blood contains no IgA, IgA from other individuals may be recongized by the immune system as a foreign protein. Because you normally build antibodies against foreign proteins( such as bacteria, viruses, chemicals,ect.) the patient with the IgA deficentcy will make a IgG, or IgE antibody against the IgA--and an allegric reaction can occur---this is very uncommon--but you need to know that it can happen (rarely)

If you are sensitive, have MCS--you may need to ramp up

Other IVIG info:

Also be aware that some brands contain a preservative---and that can cause some discomfort---or reactions

Most people--regardless of why they are recieving this IVIg--have a hard time intially with the TX

Why?

Cause it's foreign to your body--it's tough work for the bod to process about 100 grams of proteins( in the ave. 20 gr treatment)Also those HLA's can have some effect on this also(see below)

With time--the intial discomfort subsides--or becomes non-exsisitant. Things like feeling tired after treatment, flu-like feeling, ect.

With those with lyme--I personally believe(know) that there is some herx like reaction to the IVIG---remember--YOUR antibodies have been hoodwinked by lyme, and these new antibodies have not--so it's back to *war as usual*--and you generally feel some sort of ill health(flu-like) when your immune system is fighting any foreign invader

If you find a brand that doesn't give you much discomfort---stick with it!!

Per the HLA typing--the immunilogist stated that these are some of the most transient by-products of IVIG--and in some people---can be why some people have a tougher time with one dose one time, verus a different dose the next time.

You may wonder why I'm quoting the Immuno-doc, and not the LLMD--well--as far as the IVIG--immuno-docs probaly deal with IVIG more than anyone

Followed by Rhemies, and ID docs, allergists( which also deals with the immune system), and some LLMDS--then neurologists( the kings of immuno-supression--I think that they may even beat out Rhemies for that title)

Arg82--I think I may have answered some of your questions here--let me re-read your post......

1A) What I have usually seen is someone who has lyme and is suffering from the immuno-suppressive affects of the disease( though the Marshall Protocal is also trying to address this problem)

1B) or is suffering from an over-active immune system--they are trying to calm down the immune system--IVIG is immuno-modalating, and anti-inflammtory( Marshall protocal also trying to help this case scenerio)

most peoples immune system is somewhat(!!??) affected by fighting B.B( that's an understatement!)--even if the testing does not show any signs of abnormality--and re-read Marnie's post--it does a good jod of informing how B.B invades the innate immune system---the doctors are hoping that by you recieving antibodies from someone esle--antibodies that (in theory) have not been exposed to B.B( or if they have--the immune system of the donor sucessfully won the war against B.B---though keep in mind IgG antibodies against past infections( some--not all) can be a transient issue.

TestinG: testing immune fuctions will answer this--most docs' are knowlegdable enough to do this--

In my Opinion only(disclaimer here, guys and gals) If you do not have some sort of malfuctioning immune system, or one of the other typical reasons for pursueing the IVIG treatment( like neuropathies, certain types of neurologial damage or conditions, molds, and many MCS's)---going broke paying for it yourself may not be worth it----I have talked to may persons with lyme who have used it---only to feel better for a short time on it, and (just like ABX) relaspe when they stop using it

Also it may not help if you have not been correctly treated for the lyme AND co-infections in the 1st place--you have to start there--but everyone here has much experince dealing with that topic matter(on lymenet)

Yes---I know, I know---what is the correct treatment for lyme??

Well, the best we have currently---would be the ILADS protocal???

I'll post more info tommorow( not much more) but if I can find it......a Lyme Aid posting regarding the possiabilty of B.B in the blood supply----they may not currently test for it.....but the heat that is used to sterilize the IVIG is above what B.B is known to be able to endure.

I would like to see us--here at Lymenet---BRAINSTORM about these issues---not to scare( you know what I mean!) or try to decide which protocal works best---because it's not a one size fits all disease!!!

It sure would be nice if it was!!!Much easier to deal with!! And we would all be *WELL*, or at least **managed**

I don't know what spin dancing is either. I had a picture of a whirling dervish.

I agree, if you can get the IVIG via a different diagnosis, go for it. Try your best to get it paid for.

What I'm wondering is, what minimal amount would be effective. Anyway, I see it's helping me. So I'll keep experimenting with it. I'm into quality of life and I can't and never was able to do enough antibiotics to get rid of it. They are way too harsh on my system and create other worse problems.

Glad you're feeling better. I think its an interesting avenue (IVIG) for those with MCS and/or who simply can't do anymore abx.

I don't *think* I've had immune system testing but I was tested for my CD-57 level which was very low (15, I think, when it was tested in June). Does this have anything to do with IVIG? I've just been dealing with such problems over the past six months or so that I really would like to find something to give me a boost so I can get back to better strength so I'm exploring most things I see on here. Oh, and I also tested positive for HLA-DR4.

If there's any other info or articles that explain more about IVIG, I'd love to read them. Or if there's other info you (or anyone) could give me I'd appreciate it.

Thanks,
Annie

------------------
``The best way out is always through.'' -Robert Frost

Click to join Lyme_Camp

quote:

---

Originally posted by yankee in black:
Hi All,

Oxygenbabe: Sorry that I did not get back to you sooner RE: the reasons for the timing and gram amount of my IVIG

A few things that need to be corrected before we go any farther along here......

"I"... Am a "She", not a "He"

I'm a 47 yr old pharmacologist---I used to mix up the IVIG bags, along with other pharmacological agents( such as chemo--yada-yada) in my short stint at the DMC ( Detriot Medical Center--and let me tell-ya, there's an old saying in Detriot: "To know Syphillis is to know medicine" ) I went *corporate* after that.I am now retired after 23 yrs in the business---since I no longer work---and since I do have a few intials after my name--I can not **ethically** come out here and give advice( I can post "facts" on products only)---only try to share with you my own experinces with IVIG and a 5 yr fight with Lyme and Co.

Also I am not **spin dancing**, whatever that is??( fill me in ,if you can!) It's spinning--where you get on a stationary bike and ride in a classroom type setting with about 20-50 other folks. You use different resistance settings on the bike to make it easy--or tougher---I do this because it is **no-impact** If I tried to jump up and down--with the polyarthritis that I have---I just don't *think*, it would be a pretty picture.

Regardless....After 5yrs of ABX, my neuropathies and gait issues were no better--actually they were gradually getting worse--I had to purchase a cane

After 6 mo's of IVIG---I noticed a big improvement in my gait( obviously no more cane, kids)--and almost no more neuropathy pain----Though I am sure if I was out jumping around *Spin Dancing*( if that's what you do) that I would certainly feel some *pain*

Regarding a formalized IVIG protocal for lyme--I think that's a looong time coming(sadly so) there are just too many variables

I know for those who are self-paying--you want to find out what works best for the many--but this is really not the product to second guess here. Doctors sometimes have more knowledge than we give them credit for here--best to listen to them on this one!!

Per Your question about the dosage of IVIG--it has alot to do with your DX--mine was CVID, and CDPN---Chronic demylenizing polyneuropathies--so that is where the dosage and duration intervals of treatment comes in--per my immunilogist--who orders this

My LLMD--who was thrilled that I was able to recieve this TX---because it has been his experince that unless you fall into one of the approved diagnoses--no insurance co. in the land covers it for just a DX of Lyme---unless they can prove that your immune system has been supressed/ malfunctioning(overactive) by dealing with the disease(lyme)

That's why you have had to pay for treatment--because it is still considered *experimental* with lyme patients--unless you can find another DX.( not a bad idea??)

For example:

Some insurance co. cover for a DX of MS( do you *think* a few peolpe around here could fall into that dx pretty easily??)--if the are a certain amount of lesions( and a certain circumfrence(sp--size) There are other dx's that some of us could fail into... just bainstorming here....

Anyway......
Plain and simple: Each DX goes by a different protocal, body weight of patient( sometimes)---and the biggie here---

If there is an IgA deficency, in those people whose blood contains no IgA, IgA from other individuals may be recongized by the immune system as a foreign protein. Because you normally build antibodies against foreign proteins( such as bacteria, viruses, chemicals,ect.) the patient with the IgA deficentcy will make a IgG, or IgE antibody against the IgA--and an allegric reaction can occur---this is very uncommon--but you need to know that it can happen (rarely)

If you are sensitive, have MCS--you may need to ramp up

Other IVIG info:

Also be aware that some brands contain a preservative---and that can cause some discomfort---or reactions

Most people--regardless of why they are recieving this IVIg--have a hard time intially with the TX

Why?

Cause it's foreign to your body--it's tough work for the bod to process about 100 grams of proteins( in the ave. 20 gr treatment)Also those HLA's can have some effect on this also(see below)

With time--the intial discomfort subsides--or becomes non-exsisitant. Things like feeling tired after treatment, flu-like feeling, ect.

With those with lyme--I personally believe(know) that there is some herx like reaction to the IVIG---remember--YOUR antibodies have been hoodwinked by lyme, and these new antibodies have not--so it's back to *war as usual*--and you generally feel some sort of ill health(flu-like) when your immune system is fighting any foreign invader

If you find a brand that doesn't give you much discomfort---stick with it!!

Per the HLA typing--the immunilogist stated that these are some of the most transient by-products of IVIG--and in some people---can be why some people have a tougher time with one dose one time, verus a different dose the next time.

You may wonder why I'm quoting the Immuno-doc, and not the LLMD--well--as far as the IVIG--immuno-docs probaly deal with IVIG more than anyone

Followed by Rhemies, and ID docs, allergists( which also deals with the immune system), and some LLMDS--then neurologists( the kings of immuno-supression--I think that they may even beat out Rhemies for that title)

Arg82--I think I may have answered some of your questions here--let me re-read your post......

1A) What I have usually seen is someone who has lyme and is suffering from the immuno-suppressive affects of the disease( though the Marshall Protocal is also trying to address this problem)

1B) or is suffering from an over-active immune system--they are trying to calm down the immune system--IVIG is immuno-modalating, and anti-inflammtory( Marshall protocal also trying to help this case scenerio)

most peoples immune system is somewhat(!!??) affected by fighting B.B( that's an understatement!)--even if the testing does not show any signs of abnormality--and re-read Marnie's post--it does a good jod of informing how B.B invades the innate immune system---the doctors are hoping that by you recieving antibodies from someone esle--antibodies that (in theory) have not been exposed to B.B( or if they have--the immune system of the donor sucessfully won the war against B.B---though keep in mind IgG antibodies against past infections( some--not all) can be a transient issue.

TestinG: testing immune fuctions will answer this--most docs' are knowlegdable enough to do this--

In my Opinion only(disclaimer here, guys and gals) If you do not have some sort of malfuctioning immune system, or one of the other typical reasons for pursueing the IVIG treatment( like neuropathies, certain types of neurologial damage or conditions, molds, and many MCS's)---going broke paying for it yourself may not be worth it----I have talked to may persons with lyme who have used it---only to feel better for a short time on it, and (just like ABX) relaspe when they stop using it

Also it may not help if you have not been correctly treated for the lyme AND co-infections in the 1st place--you have to start there--but everyone here has much experince dealing with that topic matter(on lymenet)

Yes---I know, I know---what is the correct treatment for lyme??

Well, the best we have currently---would be the ILADS protocal???

I'll post more info tommorow( not much more) but if I can find it......a Lyme Aid posting regarding the possiabilty of B.B in the blood supply----they may not currently test for it.....but the heat that is used to sterilize the IVIG is above what B.B is known to be able to endure.

I would like to see us--here at Lymenet---BRAINSTORM about these issues---not to scare( you know what I mean!) or try to decide which protocal works best---because it's not a one size fits all disease!!!

It sure would be nice if it was!!!Much easier to deal with!! And we would all be *WELL*, or at least **managed**

To all in good health!!

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WOW did you say alot and again WOW!

Good Job

those who are suffering a lot want improvement, quality of life, and if they can afford it or get a diagnosis as you have, and their quality of life improves, it is priceless, imo...

There was one case in the literature (german, case history, letter to a journal) i recall where the individual was given rocephin, relapsed, then was given rocephin with IVIG and was cured

There are obvious immune malfunctions that can be tested for, and surely many others we don't know about...

as well as genetic susceptiblity to various strains of bb...

i think this treatment would be worth trying for those who are having only moderate progress with antibiotics, or relapse every time they're off antibitoics--try both together...

worth trying for those with MCS or other problems (candida) as it'll get those too...

worth trying for someone whose has autoimmune problems, that is overactivity of one arm, can be quieted down...

i like the IVIG almost as much as hyperbaric...i've tried many things...hyperbaric allows me to function but i'd like to get back to exercising, and to finding plane travel easy rather than a burden...my exercise these days is walking...i'd like to get back to sweat-pouring-down-feel-good exercise...

quote:

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Originally posted by arg82:
Lymelighter, I didn't realize you knew who I was seeing (especially since she's not that well known) but I've probably mentioned it before or talked to you about it or something. I haven't talked to her about it but I have an appointment with her tomorrow and I wanted to go to the appointment with at least some info about IVIG so I'd have an idea about whether it's something I should talk to her about.

Thanks,
Annie

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Thanks Annie, I don't see her for a few months so I'm curious. Please let us know what she says about Immunoglob and/or Gammaglob.

quote:

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Originally posted by Lymelighter:
Thanks Annie, I don't see her for a few months so I'm curious. Please let us know what she says about Immunoglob and/or Gammaglob.

---

Hi Limelighter,

I didn't actually talk to her about it today. There were other, more important things we need to take care of before I would feel comfortable pursuing this topic with her (right now my liver is having trouble and I'm not really able to eat so I need to get that squared away for now - taking a break from my meds to try to get it cleared up).

If I do talk to her about it, though, I'll let you know what she says. And let me know how your appointment with her goes!

--Annie

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Hobie: As far as I know, there are quite a few people with MCS who have used IVIG--the variables( protocal, dosages, time frame, insurance issues,ect.) within the MCS type diseases--I don't have a *clue*

ArtistDi may know about the MCS usage of IVIG??

Anyone interested in more info about IVIG---this is a good site to read up and learn about it's usages relating to immune deficiencys. You can lurk on the chat site--but you must contact the society to post--and have a dx of an immune deficiency.

A few things to keep in mind here....these people don't have lyme( or so they think--but that's another kettle of fish)--so they really would not be able to answer any qustions regarding the Lyme and IVIG---though you DO SEE people posting with immune deficiencys AND dx's of FIBRO AND CFIDS. Things that make you go **HUUUMMMMMM**

Primary Immune means it's primarily the immune sysytems malfunctions causing all your problems---Most lyme patients who do have any recongizable immune system malfuction are highly aware that their immune system malfunction is a **by-product** of the bodys' prolonged fight with B.B---hence, you may have a transcient--or secondary immune system deficiencty( or you may have a auto-immune type immune reaction) this site does not deal with those who are experincing a auto-immune like up-regulation of the immune system

It's just a site to **LURK* and see if you can find any answers to your own questions
www.primaryimmune.org

Oxygen Babe: I sure wish I could whirl like a dervish--then maybe I could got back to pursuing some of my old hobbies(sports like golf, and horse back riding, ect.)

Anyway....

You may have misunderstood my post----I agree, if you can find a low dosage of IVIG that works for you---go for it--you gotta go for what works for you!!

Plus--If you are self-paying--why go broke paying for something **more**, like a larger dosage-- that may not really be helping any more than the lower dosage??

That's the reason that I added my disclaimer in---and added in "My opinion" regarding the IVIG for those who are paying for this treatment yourself--I WOULD HATE TO SEE SOMEONE PAY THOUSANDS OF DOLLARS OUT-OF-POCKET ON SOMETHING THAT THEY READ ABOUT ON FORUMS LIKE LYMENET----AND NOT HAVE ANY RELIEF FROM THE PRODUCT

I would just feel terriable reccomending something to someone with lyme that did not work for them!!!

We all are suffering too darn much from this diesase that we will try anything(well, most anything) and I think that the get-up-and-go mentality that is prominent amoungst most posters here is wonderful!!! I just don't want to see anyone waste their precious resources on something they may not be sure about!

But if you can get insurance to pay for it( or even some of it)---I would say go for it

That's why I just post my own story--see if anyone esle has been dealing with this type of thing--see how they are handling treatment, ect. See if it's helping people, not helping--you get my drift.

My LLMD stated that it very well may keep me from getting all those secondary infections that I have also had to deal with right along with the lyme---like pneumonia, staph, strep, bronchitis--and so far( this yr) I have been free of all those other infections

My lyme bands have gone down--I used to show at least 5 bands IGG, and two to three IGM--and that was throgh LabCorp( not a first choice lab)

I just have a 41 band showing up these days--yep--it's still hanging around--but I feel better--so I am happy.

Though I am in no way Cured--which is what I would consider to be some sort of reasonable fascimile of my pre-lyme life.

Which brings me to another thought....I think cured is a *funny* word after dealing with B.B for over 5 yrs

And I do not mean funny as in comical--I mean cured means different things to different people

Yep--I know Websters states cured is a recovery from disease, restoration of health

But many are never *cured* from asthma, or diabetis--but find ways to control the disease and lead full lives--even if it means some lifestyle modifications

Most of us get chickenpox as a child--recover from the acute infection---which we now harbor for life within the spinal column( I think that's right--if my memory serves me correctly here...)

Many are never troubled by the acute infection again-- the immune system keeps the disease in **check**

Some people--who are suffering with another disease/cancer, extreme stress, ect., will have a reactivation of the infection--now called shingles

This is also true of EBV,HHV-6 thru what-ever number that they are up to on counting HHV viruses, CMV, ect. We all know that they lay dorminent within our bodies and can reactivate during times of other illnesses, stress, ect.

But leading as close to a full life--without alot of pain, brain fogg, ect., as one can--is probaly a realistic goal for some persons who have suffered from lyme for many yrs time. I believe this is what LLMDS" refer to as remission

If you have not been fighting the disease for along time----like many people here on lymenet ...I ***THINK***(opinion) you have a pretty darn good shot/ with correct treatment and DX of recovering enough that you many not have to deal with any serious,long term, left-over issues from B.B

I went out to dinner last Sat. night with a gal who is orginally from CT., she was bitten by a tick --which resulted in a rash--though it was not a classic bulls eye

Forturitily for her, the GP was not a duck--and started her an Doxy right away---no testing, no delays----and left her on it for 4 MONTHS--in which time---she did get a positive test for B.B

Guess what?? That was 10 yrs ago--and several stresses ago----and she is still fine and just kickin butt at 65!!!!Golfs 5-6 days a week in the boiling hot Texas sun

I gotta tell ya....only maddogs and yankees and englishman would golf in the boiling hot Texas mid-day sun

So if IVIG cures us--I'm all for it( 1st in line)

Forgot to answer testing questions

Easiest one for most lyme sufferers to test for is IgG subclasses--if you are low in 2 or more classes--the insurance may pay for the IVIG--but each policy or **THE PLAN** as it's called in insurance speak--is different--so they would have to check your policy

Testing for the auto-immune type of over-activated immune response that is also common in lyme disease-- your IgG, IgM, IgA, IgE may be higher than the normal range--and that can represent an over active immune response. Immune complexes and Raji cells can be above the normal limits, ect.

Some times an over active immune response is a trickier dx to get IVIG approved for insurance payment on, then say, a supressed immune response---why?, because in modern medicine--if you have an immune deficiencty--they feel the only product that will correct the immune sytem deficientcy is the IVIG----

If the insurance company sees signs of any sort of auto-immune response---they tend to believe that the patient needs to be immune supressed.

But if you can prove active infection( even in the presents of an auto-immune response)--you can not be immuno-supressed without jepordizing your health--so IVIG would be the correct choice-since it is immuno-modulating--capable of boosting the immune sytem, and also calming the immune system---at the very same time

Maybe someone esle will be reading this posting and be able to help out on answering the insurance issues regarding the IVIG dilemmia?

MS diag.,lupus diag, peripherial neuropathies, are some other DX's that lyme sufferers may fall into, and use to recieve coverage for IVIG

Hope this helps

PS--Please forgive all my spelling errors on this posting as well as the posting above---I am having one hum-dinger of a time tonight---trying to remember how to spell words that I was capable of easily spelling when I was 7 yrs old!!!

Oh!, The joys of Lyme!!