Ivig Dysautonomia Treatment

[kim5204]

I just got back from london, Ontario and saw neuromuscular doctor and he feels my dysautonomia is possibly autoimmune related and is ordering 6 months of ivig treatment. wont be set up for a c ouple months. has anykne had this frr aautonomic neuropathy? and was jt successful?

He sad that he has patients respond to this treatment, and that half of people dont test positive to ana. praying that this will help me.

he is hopjng for the low blood and tachyardia will get better. He wasnt that confindent that the gastroparesis would get better but fingers crossed that it does.

happy with the visit and looking forward to starting ivig soon.

kim

[Katybug]

Kim,

I know there's at least a couple of people that have been on this forum in the last year that have used ivig with some success. I, unfortunately, can't remeber exactly who so hopefully they are still logging in here and will be able to give you some direct feedback.

[kim5204]

thanks hoping to hesr from some people who may have information. just patiently waiting for the process to start.

[E Soskis]

I have AAG and IVIG was the first treatment I received after my diagnosis. I received the IVIG every week for over a year and when it helped, it worked quite well. After about a year or so, it quit helping - my symptoms gradually increased again. I have been on plasma exchanges now for going into 3 years and it too is beginning to not be as effective as it was at first. My physician said that when I was ready, he would try the IVIG again - I'm not at that point yet. Although the IVIG worked well for a time, I had a lot of side effects that were bothersome. I developed an allergy to it that required me to be pre-medicated with Benadryl, solumedrol, and other compounds that left me feeling loopy and disconnected. I was so sensitive to the IVIG that it could only be infused extremely slowly - it took over 8 hours to get in a very small dose. This is why I am reluctant to go back on it. I know people though that have had it and had no reactions - you will just have to see how it does for you. If you find that it is helping and you plan to be on it long-term, I recommend you get a port placed. I still have mine in my chest and it is accessed quite frequently for IV fluids and other treatments. Your peripheral veins will not be able to handle long-term IVIG as it is hard on them and causes them to be stiff and difficult to access. I wish you all the best and hope this is an effective treatment for you. IVIG is very difficult to obtain - it may take some time to get started but, once you do, the pharmacy will see that you have the regular infusions you need.

[kim5204]

thats interesting maybe I will tell them to do it slow for the first treating. I wonder why this isn't proscribed more often if it seems to benefit.

[sue1234]

I have never met a doctor like yours!! Every doctor I go to wants to see proof in the labs or they won't do a thing!

[kim5204]

the canadian system is different the government pays for this so I think they fill out form send it to government and they set it up. I hoping to here in the next few weeks when it will start. he also said 50 percent chance showing up in ana bloodwork. he is also sending bloodwork to the us for some more ana panels.

[Guest Alex]

Kim,

I don't want to hijack your post, but your timing for posting this couldn't have been more perfect. My neuro has finally decided that I should have a try at IVIG, so I am really looking forward to read what others have to say about their experiences with it.

From what I've been reading, IVIG should improve your symptoms if your dysautonomia is indeed autoimmune in nature, bt like everything in life, there are no 100% guarantees

The blood work you are probably referring to as being positive in only 50% of cases is called the ganglionic AChR autoantibody - it is part of the autoimmune dysautonomia panel at Mayo. The papers I've been reading speculate that for some of the patients may present with this condition the blood level of this antibody may be undetectable or too low because the antibody could be "hiding" itself in the fatty tissues (I believe) thus the blood work can't always detect it accurately.

Glad to hear that your appointment was a good one and I hope you will see improvement in your symptoms after the treatment.

Please keep us posted.

Best,

Alex

PS - I sent you a PM

[Guest Alex]

A side note as I just noticed your list of meds. If you are indeed dealing with an autoimmune process, melatonin may not be such a good idea.

According to some researchers (there is no consensus in the medical world about this though) melatonin tends to stimulate inflammation in people with certain autoimmune diseases, thus aggravating the symptoms. You might want to ask your dr about this.

Alex

[arizona girl]

Hey Alex and Kim,

I'm on ivig. In the usa it's not approved for my sfn, but it is for the my cvid. I also have 3 autoimmune diseases. I've been on it now about two years. There are lots of tips on how to have it infused at http://primaryimmune.org. There are many brands of ivig on the market I'm on privigen. If they offer carimune brand refuse it, it is the one that can cause kidney failure because it is high in glucose. If you have metabolic syndrome pre/diabetes it is a no no!. I know I was first put on it, it was awful. Privigen has been a walk in the park in comparison.

It is very important that you get the full immune deficiency workup before starting ivig. If your iga is involved your body will react to ivig. You can read more on that at primary immune. It is probably a good idea to have your CRP, HS-CRP, MPO and any other inflammatory markers run. You will then have a baseline on the inflammation. My markers are dropping significantly. I'm looking really good according to my labs, though they are still not normal yet.

I think the two biggest factors on having a good infusion experience are: A slow rate of infusion not more then 75-100 to start, the right brand for you, and the proper premeds that will keep you from having the ivig flu and headache. Not fun, but it is worth those few side effects.

IVIG has improved my infection rate and some of my autonomic symptoms. It is however not enough to control all the immune problems. I still have to take glumetza for the high insulin which is probably tied to my high norepi levels on standing and the ortho hypertension/tachy. I take T3 for the hashi, plaquenil for the udct and tacrolimus suppositories for the Lichen Planus. We are still tweaking my treatment plan. I've improved, but I am not cured, unless something new comes out I will never be cured. Well maybe a miracle from our higher power. I haven't been on the last 3 autoimmune meds for long enough for them to have their full effect. So I am hoping for a bit more improvement. At the least hopefully the treatment plan will keep me stable and I won't decline further. I will be on monthly infusions for life. I was also first on plasmapheresis and had a rapid improvement with that. It is hard to stay on though and I got anemia and infection while doing it.

So be realistic about your expectations, ivig can be a wonder, but it won't always give you 100% improvement. Any improvement though is better then none. Make sure your read about what side effects are serious, so you recognize them should they happen.

I'm happy to answer any other questions you might have, from my experience.

[Guest Alex]

Hey AZ girl,

thank you so much for sharing your experience and for offering to answer whatever other questions I/we may have.

Also thank you for bringing up the blood work that is suggested prior to starting the treatment. I knew there was something I wanted to mention to Kim yet I forgot about it. My dr has already checked all those markers/parameters and I'm good to go. My IgA has checked out fine, and my inflammatory markers have also been checked and are very low (my CRP is below 0.2, my ESR was also low ...a 3 or a 4 so I guess these won't be useful for monitoring my condition). My dr is actually going to use my HR as one of the criteria for deciding whether this would be worth continuing or not.

As far as the brands available - from what I've been reading (I'll be asking the dr though prior to the first treatment) it's either Gammagard S/D or Gamunex and I read that Gamunex has a lower incidence of side effects (see link below). Either way, I'll see how things go as I don't think there is any way anyone can predict anyone's reaction to this type of treatment or any other treatment for that fact.

http://www.phscorporation.com/IVIGComparison.pdf

My dr has already ordered solumedrol prior to the administration of the IVIG, and I guess I could always ask for benadryl as back-up or I could even take it myself prior to starting the infusions. Worst case scenario I'll be sleeping through the treatment as I tend to get pretty drowsy from benadryl.

Again, thanks for chiming in and I hope you continue to improve with your current course of treatment.

Best,

Alex

[kim5204]

thanks for the info.

[issie]

I have autoimmune problems and decided against IVIG. Here is an alternative that I'm using. I'm using the Symbiotics Immune Formula of Colostrum.

http://www.advocacyforpatients.org/pdf/nmo/what_is_ivig.pdf

18. What is a alternative to IVIg?

If you cannot get IVIg there are alternatives available, colostrum is a natural product which also contains IgG and antibodies, the

best colostrum would be freshly obtained liquid. Weaker forms will be the powder forms.

_________________________________________________________________

There has been a study that seemed to indicate that colostrum may have caused cancer. But, according to what I can find on this study it appears to be flawed. Looks like the people studied may have already had cancer and that's who they did the study with. It doesn't appear that colostrum caused the cancer. There have been many studies showing that colostrum has helped with cancer. Here are two articles discussing this. As with anything, you need to do your research and decide what is best for you. This has helped me in the past and I feel like it helped to save my life when I had the imbalance in my intestines so badly with bad bacteria.

____________________________________________________________________

http://www.icnr.org/...m-good-for.html

The benefits of natural immune boosters in the treatment of cancer was first popularized by the 1985 Steven Rosenberg book, Quiet Strides in the War on Cancer.¹⁰²Rosenberg had great success with cancer patients, including one complete cure, by using a treatment that flooded the body with killer immune cells, as well as chemical messengers called cytokines.^103,104 Since Rosenberg’s time, the same cytokines found uniquely in colostrum (interleukins 1, 6, 10, interferon-g, and lymphokines) have been the single most researched elements in the search for the cure for cancer.

A series of studies done in Japan on animal models of cancer showed in every case that lactoferrin either prevented the cancer from taking hold or prevented metastasis from established tumors.^{112,113,114,115} Lactoferrin has also been shown to boost the cytotoxic activity of natural killer cells against blood and breast epithelial tumor cell lines^116,117 and to inhibit the growth of breast cancer cells.¹¹⁸

One study has shown that a number of human cancers become more sensitive to chemotherapy in the presence of epidermal growth factor, one of the growth factors present in colostrum. ¹¹⁹

What colostrum does not do in regard to cancer is make it worse. There have been some stories put out that the growth factors in colostrum can cause cancers to grow faster, but these rumors are unfounded and not backed by research.¹²⁰

^{____________________________________________________}

^{http://www.yearstoyo...iotics/faq.html}

^{Can the IGF-1 in Colostrum Cause or Further Cancer?}

^{______________________________________________________________________________________Recent developments have prompted an intensive search for information regarding colostrum involvement in the plight of cancer. This issue has evolved in part from the evidence derived from medical research studies indicating that IGF-1, insulin-like growth factor-1, plays a role in the progression of carcinoma or sarcoma. It is the position of Symbiotics, Inc., the producer of New Life Colostrum, that colostrum does not play a causal role in the onset of this disease, nor does it mediate the proliferation of cancerous cells.}

^{The role of IGF-1 in the proliferation of cancer cells is not exactly clear. Insulin-like growth factor 1 is a peptide hormone secreted by the liver in response to growth hormone. Mammals produce IGF-I for normal cellular activities. IGF-1 regulates cellular activities such as cell proliferation, differentiation and apoptosis. A feature of cancer is uncontrollable proliferation, loss of differentiation and an inability to undergo apoptosis. Because IGF-1 is a strong regulator of these activities, it has been theorized that this hormone must have a strong impact in the progression and development of cancer. Research has shown that increased levels of IGF-1 in the plasma are associated with an increased risk of prostate and breast cancer. However, studies suggest that the higher levels of this hormone in cancer patients are a result of cancer cells over producing the insulin-like growth factors, not because of an addition of the hormone by an external source. It is very important to understand that the studies which have concluded that IGF-I causes the progression of cancer growth have all been focused on subjects with pre-existing cancer conditions. Perhaps a more objective study would include healthy patients, as well as patients with cancer. With this in mind, it can be surmised that reasonable documentation on the causal effects of IGF-I and cancer do not exist.}

^{Colostrum is a nutritional supplement that contains many bioactive compounds. Some of these molecules have been intensively studied to determine the effect they have on cancer cell growth and apoptosis. A recent study in Sweden focused on alpha-lactalbumin, one of the immune factors present in colostrum. This compound was found to cause cancer cells to "commit suicide." Another study emphasized the inhibition of cancer cell growth and induced apoptosis by Interleukin 4, a cytokine found in colostrum. Natural killer cells that are present in colostrum provide resistance against tumors, however these cells have thus far shown minimal cytotoxic activity. Other compounds that can potentially inhibit the process of carcinogenesis are Tumor Necrosis Factor, Vitamin A, Vitamin D, proline-rich polypeptide (PRP), and TGF-beta like peptide. Colostrum has been shown to have many beneficial health effects. However, taking colostrum cannot change the inherent genetics of an individual. Many humans are predisposed to cancer, and many of us have dormant cancer cells in our body. Colostrum supplementation does not change our DNA; our parents predetermine our genetic make-up. With any nutritional or dietary supplementation, the hope is to create a healthy being to discourage the proliferation of unhealthy cells.}

^{Clinical human studies specifically identifying the effects of colostrum on cancer must be implemented to assure the public that this supplement does not cause cancer, nor does it assist in the progression of the disease. There are numerous studies that exist describing the health benefits of colostrum, and the advantages that are derived from the use of this supplement. As providers of colostrum, we cannot ignore claims that our product causes cancer, or that a compound in colostrum causes cancer, no matter how false this claim may be. Hopefully the evidence presented here reveals the truth behind these claims so we can inform our consumers that our product is safe.}

^{_____________________________________________________________________________________________________}

Issie

[kim5204]

I am on new Zealand colostrum and have noticed some difference however my digestion is still bad hoping ivig will help a bit.

what made you decide against ivig? if you dont mind answering

thanks

[issie]

Lots of reasons. One biggie was it carries the same warnings as a blood transfusion. Since it comes from many donors, it could potentially cause other problems.

Issie

[arizona girl]

I just wanted to let you know that yes ivig is a blood product or a biologic. However, it goes through very significant cleaning and screening processes. More so then the blood one would receive during an emergency blood transfusion. Also it is just the immunoglobulins from the blood that is used.

I've been on it for two years have never had a problem. In that time there have been no recalls or notifications of problems with ivig. It is considered safe or the FDA would not allow it. Of course no blood product can be consider 100% free of an unknown antigen that they can't test for yet. The fact that it comes from many donors is how and why it is an effective treatment. IVIG provides a cross section of good immunogloblins, that either our bodies aren't producing or are ineffective on their own against autoimmune disease.

Biologics are the direction the research is going on treating significant illnesses like Lupus, arthritis and neuromuscular disease. They tend to have less side effects then treatments like steriods and immunsuppressants as they help modulate the immune system without suppressing it.

I understand Issie's personal choice to go another way and offer an alternative. There are some who have religious reason why they don't use blood products. All understandable reasons. When deciding to use a biologic one should read all the pros and cons. Primary immune is a good resource to answer those question regarding ivig. IVIG has saved many lives.

As for me I made the choice that it was the best thing available for me, after much research. Without it I would be vulnerable to any infection I get overwhelming my body and causing my potential death. My infection rate has dropped off and I haven't had to take antibiotics in over a year. About a week after my infusion I get a physical boost in energy that wears off as I approach my next infusion. The ivig lasts about 3-4 weeks in the body.

[Guest Alex]

I definitely understand you Issie and I want to thank you for explaining your reasoning as well as for the link you have posted. I know you have favored a more "natural" approach to treat your conditions. However, I've done my homework, I've spent quite a bit of time researching and pondering pros and cons and I'm all in favor of this treatment. In fact I wanted this treatment. It was indeed suggested by my dr but I've been trying for quite a while to get something like this and I finally have it in writing.

As AZ girl said above, I believe that the screening process for the IVIG is much more rigorous than the one for human blood, and all risks involved I am more then willing to go ahead with it. Also, I didn't even what to consider the more aggressive forms of treatment my dr had on the table and he was very reluctant to prescribe those as well.

Alex

Edited August 17, 2013 by alex74alex

[issie]

Offering alternatives for those that IVIG is not an acceptable choice for.

Issie

[Guest Alex]

It's always good to have a plan B Issie, and again thank you for that.

How have you been? I've been following some of your posts and I must say I'm impressed with your determination and your progress.

Alex

[issie]

Thanks Alex, still going in the right direction. Making positive progress. If you have been following my comments - you can see that I feel I have myself figured out and feel that I'm on the right path for me. I hope that others will be able to figure out what is going on with them and have the determination to follow through with positive lifestyle changes. Trying to get what I've learned out to others and hope that it may make a difference.

Issie

[Guest Alex]

Keep up the good work Issie and do keep us in the loop please.

Whatever works to get to feel better, right? We know too well that this is not a one size fits all approach. If you're seeing improvements with less meds, but life style changes instead and you have the determination to stick to your plan, more power to you!

Alex

[issie]

Someone asked what brand of Colostrum I'm using and what I'm doing. I'll copy my reply ---may be of help to others.

___________________________________

from the research I've done should affect IGG levels. The brand I use is Symbiotics Immune Formula. I have found that it at first caused a bit of a die off reaction, but once you get past that things start to level out. I got myself a whole lot better years ago with it and have recently gone back on it myself. I went from being none functional and very sick to lots better with it before. Not sure why I stopped taking it ----probably thought I was well. Ha!Ha! What we consider well can just be an improvement and not complete wellness. Since we are so sensitive, I start out with it a lot lower then recommended on the bottle. It will give energy and calms the nervous system at the same time. Because of the energy it can give - I don't take it late in the day.

Of course, I think my diet has been the most help to me. I'm also taking low dose antibiotics that also works on the immune system - doxycycoline. You can do a search and see how this can support the immune system. I take one pill three times a week. (I do anti-malarial herbs other days of the week. Pulse these two things.) The vegan low-fat diet - has made a huge difference. Don't know if you've looked into methylation or not - but, got a notice from one doc today about them discovering that animal products ups sulphur so high in the body and if a person has a CBS mutation - sulphur can be an issue. So, the diet is in a round about way working on methylation too. The first thing docs take a person off of is dairy products and the second is gluten when there are autoimmune issues. Just something to tuck into the back of your mind in regards to diet. Even though colostrum is from cows - those sensitive to dairy don't seem to react to it. It is obtained before the milk comes in and has antibodies in it.

Sounds like you're getting closer. My conclusion from all my research is genetics predispose us to things, then autoimmune and inflammation running a close tie play a big part. I'm approaching things from this direction and starting to have some amazing results.

Issie