Keeping my fingers and toes crossed that this will help.
My Neuro Doc. thinks Chronic Lyme is Autoimmune. If he is right and I get the Antibody from these infusions, he hopes my body will be able to fight off the entire infection on it's own.
As I have stated in other posts, I have autoimmune Vitiligo, which is evident to the naked eye, so I didn't need much other testing to confirm Autoimmune.
I just hope that if I do get the Antibody and I do start fighting the Lyme I don't get deathly sick as I now my bacterial load is so high.
Would love to hear all of your thoughts regarding this. Let me finish by saying I have met so many on here and elsewhere that also have Autoimmune diseases with their Lyme.
LT
Posted by Dawn in VA (Member # 9693) on :
YAY! Please keep us posted...
Posted by seekhelp (Member # 15067) on :
I wish you the best of luck on it. Keep us updated.
Posted by lymetwister (Member # 19590) on :
How does IVIG work?
It is not clear how IVIG works. There are several theories.
* It may provide antibodies, present in the blood of normal donors, that the patient lacks. * Most physicians believe that IVIG most likely sends a signal to an immune system that is in overdrive to slow down. Thus, it may shut down autoimmune diseases like ITP, polymyositis, vasculitis, and others. * Another theory is that IVIG supplies a decoy target for an overactive immune system to attack. Thus it diverts the abnormal immune system from the body's normal organs.
Whichever theory is correct, it is undeniable that IVIG does work. For many patients, IVIG is the safest and most easily tolerated treatment available.
What is IVIG?
Intravenous immunoglobulin (IVIG, also called intravenous gamma globlulin or IVGG) is a product derived from human blood that has been pooled from many donors. Plasma from approximately 1,000 to 10,000 persons is present in each unit or "lot" of IVIG. The active ingredient is immunoglobulin G (also known as IgG or gamma globulin).
IgG is one of five types of antibodies normally made by the body to fight infection. (The other four types, for historical reasons not named sequentially, are IgM, IgA, IgD, and IgE.) Each of the antibody types has a special role to play in the body. IgG is the long-lasting antibody that maintains control over infections -- after the body has fought its initial, messy battles with invading bacteria or viruses. A small but important part of an otherwise normal population is born without IgA, a potential problem for treatment with IVIG (see below).
What is IVIG used for?
IVIG is approved by the FDA for use in the treatment of the following diseases: Kawasaki disease, dermato/polymyositis, idiopathic thrombocytopenic purpura (ITP), Guillain-Barre syndrome, polyneuropathy, some viral diseases, and some forms of immune deficiency. IVIG is often the first treatment choice for patients with Kawasaki disease or ITP. For other diseases, it is used after other forms of treatment have failed.
In addition, IVIG appears to work in systemic lupus erythematosus, antiphospholipid syndrome, vasculitis, multiple sclerosis, myaesthenia gravis, and a wide range of other diseases characterized by abnormal immunity. In these cases, particularly because IVIG is very expensive, it is usually necessary to obtain approval from your insurer before the drug can be prescribed. (Again, IVIG is usually used in these diseases only after other forms of treatment have failed.)
i am trying to get ivig. i have met people who have been on this for over a year. my well known ll neuro says 6 months minimum to notice any change. i am confused by the 5 day tx time??
Posted by lymetwister (Member # 19590) on :
njgirl,
Of the ones you've met that are doing this, do they have Lyme ? If so, what kinds of improvements are they seeing ?
BTW, the 5 days in a row is like a loading dose, so my doc. says. Then we go to once a month maintenance or even more as needed.
The drug is like $3,000 per dose, so the week is 15K for my insurance co. Ouch !!
LT
Posted by davidx (Member # 8326) on :
I have been on ivig for a number of months. The doctor figures out based on weight how much IVIG you will receive and then that dose is divided into 5 days. In month 1 (in my case), the first dose was done in the hospital and the 4 remaining days were done at home.
After the first month, I have been receiving IVIG 2 days every other week just to spread out the time a little bit. I will be decreasing the dosage in the next month or two depending on how things go.
Posted by equuslover (Member # 13089) on :
Hi everyone... I am putting a thought out there for all of you doing IVIG....do they screen for lyme in the blood that they are using?
That is one thing that would keep me from doing IVIG..if they have a hard time testing in a live body what makes them think that they are not just reinfecting their patient with another strain. Are doctors sure that they are not reinfecting?
Posted by njgirl14 (Member # 14174) on :
something i have thought of too, it is a blood product. lyme and who knows what else. i am not trying to be negative but it is a concern of mine. i am pretty desparate to get well so i am willing to try it. i don't think it is a miracle cure but i think it may give my immune system the kick start it needs.
i have heard ivig helps neuropathy (there is a study proving this), helps the immune system, and helps abx work better.
Posted by davidx (Member # 8326) on :
I am on IVIG and I spoke to my doctor about these concerns before I started since it is a blood product. I am not a doctor though so please bear in mind that it is possile I am wrong about any of the info here:
From what I remember him saying, the anitibodies collected from the donors are somehow made into powder form and then reconstituted with saline (I think). This makes it sterile.
Also keep in mind that you are receiving only antibodies. FOr example, hepatitis b immunoglobulin (which is gathered from multiple ppl) is given to babies whose mothers have Hep B (the baby also gets the vaccination I believe). So while you might passively receive Hep B antibodies from IVIG you would not be receiving the surface antigen. Having said this, I am not sure how the b burgdoreferi bacteria could be in ivig since the antibodies are separated?
I have read online though that there could be some potential risks so it would be a good idea to research and talk to your dr to get comfortable with it.
Posted by sutherngrl (Member # 16270) on :
Blood products scare me. I have heard that Babesia is one of the most likely TBD's to be spread through the blood supply.
Posted by Buster (Member # 19472) on :
quote:Originally posted by davidx: I am on IVIG and I spoke to my doctor about these concerns before I started since it is a blood product. I am not a doctor though so please bear in mind that it is possile I am wrong about any of the info here:
From what I remember him saying, the anitibodies collected from the donors are somehow made into powder form and then reconstituted with saline (I think). This makes it sterile.
Also keep in mind that you are receiving only antibodies. FOr example, hepatitis b immunoglobulin (which is gathered from multiple ppl) is given to babies whose mothers have Hep B (the baby also gets the vaccination I believe). So while you might passively receive Hep B antibodies from IVIG you would not be receiving the surface antigen. Having said this, I am not sure how the b burgdoreferi bacteria could be in ivig since the antibodies are separated?
I have read online though that there could be some potential risks so it would be a good idea to research and talk to your dr to get comfortable with it.
True, my LLMD and ID doctor both agree.... nearly impossible today to get an infection transmitted through IVIG with the actions they use to sterilize it and store it.
Posted by lymetwister (Member # 19590) on :
Davidx,
I couldn't have said it better than how you explained it. I am hoping for the kickstart that you speak of.
You are correct that the IVIG is in a powder form before being reconstituted. With this in mind, I don't see how Bb could even survive in a dry sterile environment.
My Neuro doc. says that if we can do this than the body would fight off the Lyme and co-infections on it's own. Thus, there would not be a need for antibiotics.
Although they say it's a "blood product", it's not like getting a blood transfusion. We are not getting others red and white cells, etc. There is no pre-testing to blood type, etc.
Who knows, there is so much with this disease. And because of the cost of the drug, it's not being studied in this fashion as first the AMA has to accept the Chronic Lyme diagnosis.
All I know is that many with other autoimmune diseases that we claim are linked to Lyme get much improvement with IVIG.
Hoping and praying and will definately keep you all updated.
LT
Posted by losferwrds (Member # 19741) on :
So how does salt/c and rife fit into this new protocol? Are they all compatiple or will you do this exclusively now? You have been thru alot, I hope you get some relief,
Posted by Parisa (Member # 10526) on :
Lymetwister,
My husband definitely falls into the autoimmune category which is why he qualifies for the IVIG. And there are people with dermatomyositis which is what they diagnosed him with who seem to do well on just IVIG.
For me, I want to know that not only are we rebalancing the immune system but are also knocking out the infection so he is doing IV antibiotics also. I know the antibiotics are working in addition to the IVIG because he has made some significant gains right around the times that he started new antibiotics.
I'm not sure the doctors understand completely how IVIG works or how Lyme and co-infections work.
Good luck with your treatment. The first treatment may be a little rough but it should get easier over time.
Posted by Pinelady (Member # 18524) on :
Sounds great! I pray it does the best job possible.
Posted by blackmon (Member # 1528) on :
I have a couple of questions for those on IVIG who have Lyme. What criteria did the insurance company use to approve of treatment?
Were there certain immune markers or test results that are needed to qualify or just your neuro doc saying that you have an auto-immune condition?
thanks, Nancy
Posted by davidx (Member # 8326) on :
Lymetwister- Well I hope it does work for you. I know that I have had some positive effects from it so far but we'll see as time goes on.
I agree with Parisa that the first treatment can be a little rough but it gets easier and you may not have any difficulty at all.
Nancy- I am guessing here but I think it would depend on your insurance company? There are certain conditions for which IVIG is approved and I believe most if not all are auto-immune. In my case, each month that I get the medication the pharmacy bills the insurance company so I don't really get a formal "approval" I guess. I think you should check with your insurance company to be certain what their parameters are.
Posted by Parisa (Member # 10526) on :
For many of the autoimmune conditions there are certain markers and signs which they use to diagnose the disease. Then because IVIG is so expensive many times the insurance company wants to see that steroids and chemo type drugs have failed to work.
In my husband's case, he had done Cytoxan (chemo drug) for his dermatomyositis and it failed to make a difference. This was before we knew he had Lyme disease. He was on prednisone for a long time and that failed to make any difference in his disease.
You can try to maneuver around the requirements for prednisone by saying that you just happen to have a bacterial infection (Lyme) which will be aggravated by the steroids and chemo. Just don't try to say your autoimmune condition is caused by Lyme as that will get you nowhere. It's a very fine line.
My husband's rheumatologist used an infusion company that specializes in IVIG to get the insurance approval. Since the infusion company makes alot of money off this treatment, they know how to work the system and get things approved.