Haven't been her for a while--------glad ya'll are still available.
Can anyone tell me about Gamma Gobulin IV's as a last resort for severe immune system neuropathy?
Well known LLMD says not much more can be done for me. I feel hopeless and very depressed and wanting to give up--not like me--but sooo tired.
Multiple illnesses that show up in all blood work--so they are not just speculations.
I was excitted about getting them. Then researched and am now terrified of the side effects --general--but more so about the possible side effects.
Can someone help ?
Thanks so much.
Posted by lou (Member # 81) on :
Some people are helped with IVIG, some are not. Talking lymies here. Not sure there is any way yet to distinguish who would be helped. Think there is some testing that might support the decision to try, which the insurance co will require. It is very expensive and it is a blood product, which you already know.
Sorry to hear about the prognosis. Are you sure all the bases have been covered with regard to coinfections?
Posted by Chocolat (Member # 5138) on :
Thanks, lou,
Lyme since birth and 2 documented Lyme ticks---so problems going on forever--with some great periods of wellness. Babs treated---Erlich. treated-----------was doing well on Plaquinil for the "Lyme driven" Lupus-like syndrome until white count fell and Liver enzymes went up--other blood work out of order. GI track has totally shut down--colonics x1-2 a week--at home enemas---mercury showing up in blood and urine--oral chelating for that now--very slowly--due to heavy toxicity in general.
Don't feel comfortable with the IVIG's--so guess I will pass which is hard to do when your doc--and one of the best--says it is the only hope he sees.
Sheer and utter frustration---u r right--$2400 an IV and the first one is the test, sort of. If see improvement and no complications, then insurance will pick up the rest.
After many years on abx. my body crashed--ended up in hospital and LLMD said absolutely no more abx. for me.
Should probably have full testing done again from IgenX but $ is major issue now.
Thanks for your reply and bless !
Chocolat
Posted by lou (Member # 81) on :
Well, I am sorry about this, but maybe you should not think the worst just yet. Try to prop up your system with the right supplements, and hope that someone finds something that works for late stage cases. Wish the right kind of research was going on. The lyme denialists are hindering the research program that people like you and me, and others, need to stay alive.
When I started treatment, several years after the bite, and realized the bad situation in lyme politics, it occurred to me that it was something like being thrown out of boat in white water. You wear a life preserver, lean back with your feet in front and up to fend off rocks, etc. Don't struggle wildly or try to swim against a strong current. Wait until an eddy appears and angle toward it. An eddy is a quiet place where the current flows in the opposite direction. In other words, survival first, rescue ultimately if you are lucky.
Posted by timaca (Member # 6911) on :
chocolat~ Another thing that you may consider is viruses...have you been tested for them?
As it turns out, it appears that I have chronic viral issues as well....hhv-6 for one.
It looks like I may be going on Valcyte starting in August.
Timaca
Posted by Chocolat (Member # 5138) on :
Oh my goodness, Cave. I remember you always did have super information. I will make some calls tomorrow. So many thanks.
And Lou and Tamaca (can't remember how you spelled it) thanks again. I was tested at first--years ago--for viruses----had 'em all including "acute Parvo infection".
What do they really do about viruses--I have only taken abx.--well, maybe some anti-virals but have no idea what they gave me. What IS done for viruses these days? Seems like they didn't pay much attn. to them--may be wrong--just know I got started on IV Rocephin--seemed like forever--then on to oral abx. of EVERY kind.
Anyone got any way to knock my head against a wall so I can get rid up this "give up" mode?
Think I've already drowned in the white waters.
Posted by butchieboo (Member # 12063) on :
I don't know chocolat, sunshine...but those two names or words bring to mind some very delightful pictures...
Remember that, it is ok to feel despair,loneliness,futility and hopelessness for
they are REAL emotions, in this time of being ill with a seemingly, unreal disease.
Remember though, that from time to time, there are thousands upon thousands of us out here that
feel or have felt the same way. We do understand and can empathize with you very well.
We go to sleep wondering what tomorrow will bring, if we can sleep.
We get up each morning to the same battle and seemingly worthless existance. Sometimes wishing it were just all over and we were granted peace.
But in all of this there is a kinship we all share. A bond that can never be equalled in any other way.
If any one of us finds something that does the trick the others of us will know in minutes if not seconds.
Praying, searching for the answers and sometimes swearing, because there does'nt seem to be any answers....
and then for a minute....laughing to ourselves because we know that someone of us, somewhere, is feeling, exactly the same thing, at exactly the same time.
Just think what a sound it would make if we all yelled at the sky, at exactly the same time all over the world...
I don't know...you pick a word....Oh Sh-t, comes to mind, or perhaps something stronger.
For sure it would be a sound heard round the world...
Maybe a passing starship would hear us and get a kick out of it also...
One alien would look at the other and say something like....
"Damn lymies....always complaining"! " Hell, we're plants, that look like broccoli"! "We,_______________________________
____________!
Then we could sleep with some resolve, knowing we are never really alone...
Read under the "testing" link. Also in the "patient" forum. My story is under "viral testing".
Valcyte and Valtrex are both drugs to treat viruses. (they are anti-viral drugs and not antibiotics). I think IVIG can be used to treat Parvo.
I'm just beginning to learn about this myself. I have an appt soon with a doctor that is familiar with viral testing and treatment. I will be posting back on the hhv 6 website.
Good luck. Don't give up. This may be an avenue that you need to follow up on.
My suspicion is that lyme can suppress the immune function enough to allow these viruses to grow...causeing us lymies further problems. Problems that antibiotics won't take care of.
Timaca
Posted by CaliforniaLyme (Member # 7136) on :
Yup to all that's been said!!!
Locally an LLMD uses this with people sometimes and sometimes it helps them greatly- like everything with Lyme- doesn't help everyone!! but with some people- wow*)!*)!
I hope it is WOW*)!*)! with you!!!!
Sincerely-
Posted by oxygenbabe (Member # 5831) on :
Don't be scared of it, just start with a very small amount. I started with 1 gram. ArtistDi is going to start with 4 grams I believe. I wouldn't do more than that to start. Just see how you do. Even 2 grams has a beneficial effect on me. The best form is gamunex imo, its in glycine, not salt/sugar like the other ones. However its more concentrated. But my body didn't like the salt/dextrose ones that I started with.
I've done as much as 10 grams but I find my body likes about 2 grams the best.
If you tolerate 1 gram, go to 2 grams, then 4. Let your doctor know that is the only way you can do it as you've had so many reactions to drugs and occasionally people do get serum sickness, thrombotic events, kidney problems, etc with IVIG and better safe than sorry. Those are on higher amounts and tend to be the sucrose solutions. A small amount is like a test dose and believe me you can feel the difference. I had an immunologist practically laugh me out of his office at the small amounts I do but too bad for him because my body speaks to me and I listen.
It may really help you. Don't give up. Maybe you'll even eventually tolerate larger doses. If your insurance covers, you're very lucky.
Posted by Chocolat (Member # 5138) on :
oxygenbabe------wow----where have you been???? I hadn't heard from some one who has done them ! ArtistDi, too?/
On way to church so this short but will get back to you.
Just looked at the script----it is confusing-what do you think? Says 2g/kg/month, administered over 5 days for 3 months. Does he mean 2 g a day???? As far as salt/sugar vs the other, I can tell you right now that if it is salt/sugar I will not do it. Can't even orally ingest salt or sugar without getting ill !
Such good info, Oxybabe--------will call tomorrow to see how this doc here does it.
What side effects have you experienced???
Do you take a blood thinner>
Many thanks !!!!
Posted by davidx (Member # 8326) on :
Cave76-
I would be interested in reading about Dr Younger's unique method of diagnosing small nerve fiber disruption as seen in Lyme. Do you know of a link to any paper on this topic?
I am curious because I did see one of the other doctors you mentioned who did a skin biopsy that showed reduced nerve fiber density.
Thanks very much!
-David
Posted by oxygenbabe (Member # 5831) on :
Hi...I do get side effects so I have to drip it VERY slowly. The first times I got muscle aches and low grade fever for a day or two. Now my main side effects are sometimes my gallbladder feels sluggish/congested from it, and I get achy, sometimes it seems to kill things and my sinuses will feel pressure etc. I don't take a blood thinner, no need to, just be aware that if you research the clinical literature, blood viscosity is increased for about 3 weeks after an IVIG infusion. However, remember most people get a lot.
A kilogram--2 grams per kilogram, infused over several days, meaning you go in, get some, come back the next day, get some more. He would be starting you at the high dose. I would advocate having him just order you the 2.5 gram small bottle and try that the first time VERY slow. And hydrate before hand. And just let your body get accustomed and see how you do.
I do only a little. If I did a lot I'm sure my body would freak out .
Posted by achey (Member # 6284) on :
I do IVIG too, and it has been a miracle. I started 2 months ago. I infuse 40 gms a day four days/ month.
My body crashed a while ago and I could no longer do abx. I had a hard time getting my insurance to approve the IVIG. They wouldn't approve it with just a small fiber biopsy, so my neuro sent me to see Dr. Younger for an EMG. I failed the test miserably and good Dr. Younger got my insurance co to listen up!
Prior to IVIG I was having severe neuropathy including internal neuropathy effecting my muscles of respiration and digestions, and locomotion. I was also having frequent seizures. Everything is improving and repairing quickly.
I am now treating the returning lyme with alternative medicine and doing very, very well.
Posted by Chocolat (Member # 5138) on :
davidx,
Had several "punch" biopsies done at 2 different times. All showed a severe loss of small nerve function-------causing post-Lyme autoimmune syndrome--autonomic nervous system on shut down--immune system neuropothy---------lupus like syndrome----on and on. My GI track had been shut down for years now--yeah---miserable---live not being able to eat---soft stuff or liquids---colonics---------
I would love to see Dr. Younger but afraid a waste of time and $$$ since I have been looked at by the top LLMD's starting with Burrascanno and moving on down the line---------2 of them now retired---2 "called on the carpet"-------my favorite in CT. is the one who spent hours testing me and said my only hope for a turn around now was the IVIG's.
davidx---I hope you can find what/whom you are looking for. Cave always has the greatest resources so listen to her.
Speaking of her-----Hi Cave---------my main fears are --re: IVIG's--------my low weight--debilitated condition and that my veins are sclerotic and I tend to have sensitive/alergic reactions--plus major stress going on right now-----hubby getting ready to undergo angiogram-------heart only working at 30%-----have no idea what they will find next week when they go in and look.
Also, my immunologist and LLMD remain mute when I ask them questions about the safety of the IV's for my particular status. Understand they can't really go out on a limb--they are not God nor do they have a chrystal ball-----------all I have been told is that I might get a headache---back pain--------
Guess the timing is wrong----------wondering how I will withstand husband's upcoming heart deal---kids are far away-----we are sort of on our own.
Boy------do I sound on pity pot or not? Sorry. Just tons of fear 24/7 about everything.
Please continue to try and help me. This, too, shall all pass----but the waiting for it to is crushing.
Thanks to all who are chiming in.
Posted by Chocolat (Member # 5138) on :
Achey---
What alternatives do you use and find the most helpful???
Posted by Lonestartick (Member # 2151) on :
Hi Chocolat,
How amazing it is to see you, because you are one of my all-time favorite Lymenetters. Well, honestly, I would prefer not to see you here and just to know that you are out living a healthy life after Lyme. Since that is not the case, I wanted to remind you that one of the all-time most informed and experienced patients familiar with IVIG for Lyme used to post here at Lymenet. (She may have been a bit before your time here.) She went by the handle of Yankee in Black (sp?). She was not only an experienced patient, but also a PhD pharmacologist.
I haven't been here much lately, so I can't say whether or not she is still around. As I recall, she and the other really smart medical types left here around the same time. However, it may be that you can locate her through Lymenet or via someone here who still knows how to contact her.
As I recall she was having great success with IVIG the last I heard, but I think it took her a while to explore what type best helped her. I'm quite sure she did a lot of research in order to best educate her doctors so they could assist her. It may be that if you can locate her, she could offer you the most experienced advice.
It's been so long ago that I just don't remember how much of her experiences she shared in the forum, but I do know that if I were in your situation, she is the one person I would move heaven and earth to contact.
I know that's not much help, but if you can locate her, I'm quite sure she would have the most worthwhile information to share in order to prepare you for what you might expect.
Best of luck, LST
Posted by oxygenbabe (Member # 5831) on :
Chocolat--please try the IVIG. Just start with a test dose, a small dose. That way you protect yourself. Don't worry, they will find a good vein.
Posted by RJPII (Member # 5876) on :
Hi - This thread was very informative for me! I just switched LLMDs in NJ and was advised that my new one wants to go the IVIG route.
Chocolat - thanks for starting it up. I would love to hear how things progress and will watch for your updates. I have had the disease for approx. 12 years and felt like I have learned so much in the last two weeks with this new doc. It is a downright shame how the medical community is shunning treating chronic Lyme in this state.
Bob
Posted by pamoisondelune (Member # 11846) on :
There are other protocols. On a Buhner forum, some people are following the Stephen Buhner protocol, are more cured than I am, and also can't or don't take any antibiotics. This is from his book "Healing Lyme". I hear Dr H tries to get people off antibiotics and puts some people on the Cowden protocol. I don't know if that's relevent to your case.
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