HealingWell
Search Close Search
☰

Starting with IVIG

Support Forums
>
Lyme Disease
✚ New Topic ✚ Reply
12
❬ ❬ Previous Thread |Next Thread ❭ ❭
Posted 3/15/2024 7:32 PM (GMT 0)
Hi everyone,

I haven't seen in the forum any post of someone telling their experience with high dose IVIG for autoimmune conditions related to Lyme and coinfections, so I wanted to share the story with you in case it is useful for someone. I'll try to update the post with each new infusion.

To summarize, I've developped a terrible neuropathy that doesn't allow me to treat my infections with abx. You can find the story in detail in the following post that I have here in this forum:

https://www.healingwell.com/community/default.aspx?f=30&m=4335526

All the doctors that I've visited agreed that it was something autoimmune, so I expect the IVIG to work. So far I've taken my first infusions, a total of 100 g in one week (1,66 g/kg of bodyweight for me), which is between the autoimmune range (1,5-2g/kg/month). My symptoms right now are feeling like I've caught the flu, but fortunately nothing more. I've also tried to test if it has started working, but so far it hasn't. My trial was with something very soft and with a short half-life, Zhang's allicin and Zhang's artesunate, but after taking them I've had the same symptoms that made me stop taking abx (headache, burning in arms and legs, tingling and distorted sensations in palms of hands, feet and butt). I'll give it a few more months to see if it works because I know it's cumulative and I haven't reached the peak concentration of immunoglobulins in my body yet.

I'll keep this updated. Questions or thoughts are welcome.
Posted 3/15/2024 10:14 PM (GMT 0)
Good luck Geralt

thanks for posting your experiences

i think it can take some time for the IVIG to calm down auto-immunity - so it could be that you need to wait a few months to get a fair test of whether its working or not

if it were me i would probably try to avoid stirring the pot too much in the meantime as its all just more ramping up of inflammation and auto-immunity

all the best !
Posted 3/16/2024 1:19 AM (GMT 0)
Please keep us updated. I know and have heard of a few people who have fully recovered on IVIG. Here's to hoping you're next.
Posted 3/16/2024 11:00 AM (GMT 0)
Hi Geralt! Do you mind sharing which autoimmune conditions you have that you are doing IVIG for? Good luck with it!
Posted 3/16/2024 1:19 PM (GMT 0)
Hi Emma, the diagnosis I have from my neurologist is polyneuropathy. I've looked for autoantibodies and the only one I tested positive is anti-parietal cells, but many times you have autoimmune issues ans with the tests that we have it doesn't show. I also have celiac dissease, which is also autoimmune. Basically, I have burning in arms and legs, tingling and distorted sensations in feet, hands and butt and burning and headache in my head. Sometimes I feel some sort of sunburnt sensation in chest and back. It increases whenever I take antimicrobials, whichever it is.
Posted 3/16/2024 3:54 PM (GMT 0)
GeraltofRivia,

First off, I am very sorry you are dealing with this. I read all the posts here and on the other post you linked here. I hope the IVIG works for you and you get rid of the neuropathy.

Here’s what came to my mind after reading through these two threads:

1. Minocycline does cross the blood brain barrier. I have read that the BBB can be compromised similar to the intestinal barrier (leaky gut), which it sounds like you may also have due to all the food intolerances mentioned in the other thread. Have you considered swapping minocycline for doxycycline and seeing if it causes the same problem?

2. The neuropathy caused by certain abx that goes away when you stop the abx sounds like a herx type response from too many toxins. Personally, I believe some people are simply more sensitive to toxins than others and may have an exaggerated response.

I didn’t see any mention of using binders to help remove toxins. That may be something to consider.

I also agree with Saraeli’s suggestion on the other thread about treating MCAS.

3. I agree with Garzie about not stirring things up, especially if there’s suspected autoimmune cause for the neuropathy. I am curious how the doctor came to this conclusion. Did you have a Cunningham panel done?

I can relate 100% about the rib tightness. I had it for 4-5 months following a bout of bronchitis in 2015. That respiratory infection caused systemic inflammation to travel throughout my body and sent my Lyme/co symptoms into overdrive. I remember the rib tightness well. When I tried to breathe, it felt like my rib cage was made of iron bars that would not expand, and my chest felt like a brick wall. It wasn’t that my lungs wouldn’t expand. It was my rib cage that wouldn’t expand. Very uncomfortable, scary, and anxiety provoking.

I have had loads of neurological symptoms, but for some reason I never called it neuropathy. Numbness, burning pain in my tissues that I called toxin pain, burning scalp, feeling like my brain was burning and bubbling. For me, the neuro symptoms are mostly toxin related - triggered by mold exposure, exposure to fragrance and chemicals, die off from killing microbes.
Posted 3/16/2024 4:24 PM (GMT 0)
Hi Geralt thanks for explaining! So have you had any tests to show that you have neuropathy or is the diagnosis based off symptoms alone? For example EMG and NCS tests look for large neuropathy and can tell whether it’s autoimmune or not. Skin biopsy or nerve biopsy can look for small fibre neuropathy. Or did you do a Cunningham panel looking for auto antibodies in the brain?

If you haven’t had any tests that show neuropathy and they are going off symptoms alone then why do they think that it is auto immune in nature because there are lots of different causes of neuropathy that aren’t autoimmune?

The reason I’m asking is because I’m wondering how you managed to qualify for IVIG as usually this is only for autoimmune conditions diagnosed with tests or if people have immunoglobulin deficiencies - as it’s something I’m interested in but wondering how to go about it!

The symptoms you described without tests to confirm neuropathy would be diagnosed as functional neurological disorder in the UK so I wondered what country are you in? Thanks for your responses!
Posted 3/16/2024 6:15 PM (GMT 0)
Hi WalkingbyFaith,

Thanks for your reply.

WalkingbyFaith said...
1. Minocycline does cross the blood brain barrier. I have read that the BBB can be compromised similar to the intestinal barrier (leaky gut), which it sounds like you may also have due to all the food intolerances mentioned in the other thread. Have you considered swapping minocycline for doxycycline and seeing if it causes the same problem?


Yes, I've tried doxy and it gives me neuropathy, too. Ivermectin, which doesn't cross the BBB, does give me neuropathy too. Everything that is bactericidal does that.

WalkingbyFaith said...
2. The neuropathy caused by certain abx that goes away when you stop the abx sounds like a herx type response from too many toxins. Personally, I believe some people are simply more sensitive to toxins than others and may have an exaggerated response.


When I started taking abx, I was taking a combination of 3 abx and 2 antiparasitics all at the same time and didn't have any issue. In fact, I barely herxed, only at the very beginning and it wasn't much. It was with time that I developped this sort of reaction to anything.

WalkingbyFaith said...
I didn’t see any mention of using binders to help remove toxins. That may be something to consider.

I've tried binders, activated charcoal and bentonite clay and I didn't feel any difference when using them. My brother, who doesn't have this neuropathy problem, is taking around 7 things for these bugs without any binder and is not having any problem at all.

WalkingbyFaith said...
I also agree with Saraeli’s suggestion on the other thread about treating MCAS.


I've tried MCAS medication, such as montelukast, H1 and H2 blockers and they don't do anything. My intolerance to food is not MCAS related I think, I don't get red with hives, in my case after a couple or three hours my intestine starts hurting and then I have to go to the toilet immediately.

WalkingbyFaith said...
3. I agree with Garzie about not stirring things up, especially if there’s suspected autoimmune cause for the neuropathy. I am curious how the doctor came to this conclusion. Did you have a Cunningham panel done?


I believe it was based on their experience. The funny thing is that, for the 4 doctors that I've visited, they've concluded the same thing. And no, no Cunningham panel, I've run some lab tests looking for autoantibodies, but more general than that.

WalkingbyFaith said...
I have had loads of neurological symptoms, but for some reason I never called it neuropathy. Numbness, burning pain in my tissues that I called toxin pain, burning scalp, feeling like my brain was burning and bubbling. For me, the neuro symptoms are mostly toxin related - triggered by mold exposure, exposure to fragrance and chemicals, die off from killing microbes.


It's very different the die off than the neurological symptoms you are talking about, they have nothing to do. I don't know, some of the symptoms you say, I have them as well, but they developped over time. It doesn't make sense at all that I have huge symptoms that last for several days just from taking one pill of allicin or artesunate, and in the past (several months ago) I could take 6 pills a day with no herx or symptoms at all.
Posted 3/16/2024 6:22 PM (GMT 0)

emma blonde voyage said...
Hi Geralt thanks for explaining! So have you had any tests to show that you have neuropathy or is the diagnosis based off symptoms alone? For example EMG and NCS tests look for large neuropathy and can tell whether it’s autoimmune or not. Skin biopsy or nerve biopsy can look for small fibre neuropathy. Or did you do a Cunningham panel looking for auto antibodies in the brain?

If you haven’t had any tests that show neuropathy and they are going off symptoms alone then why do they think that it is auto immune in nature because there are lots of different causes of neuropathy that aren’t autoimmune?

The reason I’m asking is because I’m wondering how you managed to qualify for IVIG as usually this is only for autoimmune conditions diagnosed with tests or if people have immunoglobulin deficiencies - as it’s something I’m interested in but wondering how to go about it!

The symptoms you described without tests to confirm neuropathy would be diagnosed as functional neurological disorder in the UK so I wondered what country are you in? Thanks for your responses!


I've done an EMG, which tested negative. No biopsy. Autoantibodies negative, but by clinical judgement from doctors, they agree it's autoimmune. My insurance doesn't cover the IVIG, only the hospital cost. I live in Spain, and for neuropathy I don't know of any insurance that covers IVIG, only the public health system and in case you have positive autoantibodies and a very clear biopsy confirming it. I'm going to a neurologist next month from the public system to see if I can get it covered, but I imagine it will be extremely difficult if not impossible.

I've heard that in the UK for neuropathy it's almost impossible to get IVIG. I've spoken with a woman who has lyme, tested positive in punch biopsy with positive autoantibodies and is looking in another country to get the IVIG because in UK they don't prescribe it to her. Let's hope you have more luck than her and manage to get prescribed the IVIG. What symptoms do you have?
Posted 3/16/2024 7:25 PM (GMT 0)
Hi Gerald than you for answering my questions!

I have done an EMG and NCS which found I have large fibre neuropathy, specifically damage to the peroneal nerves which isn't autoimmune in nature so I don't think I qualify for IVIG. But it's something I'm still going to look into more! Please keep us updated with how you get on, wishing you the best of luck
Posted 3/16/2024 8:02 PM (GMT 0)
This is interesting. I’ve never heard of IVIG used for autoimmune conditions. Really hope it does some thing for you.

I do remember a few times in the past here people using it for overcoming tick infections. In that case, it’s a one time deal to super strengthen their immune system.

I’m only guessing that you would receive less volume of it compared to its normal amounts of monthly use by people with immunoglobulin deficiencies (myself ). I have not tried it yet, because I’m chicken to do so.
————————
Googling shows prices of IVIG can really vary in the US from expensive to very expensive. If and when there is an actual immune clinic involved, the administration price plus the immunoglobulin blood itself is very expensive and it’s hard to get an accurate estimate when it’s run through insurance until it’s actually done. It’s a big game here. The drug companies that make the IVIG also have possible consumer discount programs that you can apply for.

Maybe the lighter duty version of what I’m guessing you’ll be getting from a non-immune clinic will be priced a little more conservatively. In your case, at least it will be more affordable since you are not in the US. (Apparently, the US has the highest health prices in the entire world).

Post Edited (astroman) : 3/16/2024 1:55:57 PM (GMT-8)

Posted 3/16/2024 10:41 PM (GMT 0)

emma blonde voyage said...
Hi Gerald than you for answering my questions!

I have done an EMG and NCS which found I have large fibre neuropathy, specifically damage to the peroneal nerves which isn't autoimmune in nature so I don't think I qualify for IVIG. But it's something I'm still going to look into more! Please keep us updated with how you get on, wishing you the best of luck


Do they know what is the cause of your neuropathy? Because if it's not something autoimmune, I don't know what can be the cause for that.
Posted 3/16/2024 10:47 PM (GMT 0)
Hi Astroman,

For immune deficiencies, the dose is usually 0,5-1g/kg of bodyweight and month. For autoimmune conditions is between 1,5 and 2g/kg and month. If you have the chance, don't chicken and try it, it will help you a lot if you have some sort of immune deficiency.

In Spain the prices for medication are fixed, in pharmacies and hospital farmacies they have to follow the price established. Still, it is very expensive, yes, but not as expensive as in US. I imagine that over there it would cost double than what it costs here in Spain. The advantage over there is that your salaries are higher, but your health system is known to be extremely overprized.

Post Edited (GeraltofRivia) : 3/16/2024 2:53:05 PM (GMT-8)

Posted 3/17/2024 3:36 AM (GMT 0)
So you’re getting an even higher dose compared to someone with an immune deficiency would be getting, wow!

When immune deficiency patients take this I know there could be symptoms related to it a few days after.

If you have any lyme bacteria left in you or any other bad bacteria, I’m guessing you’ll be getting a Herx of some type from this.

———————-
I am chicken to try this for my immune deficiency because of the cost involved. My health insurance only covers it if I am continuously sick without it. Their definition of sick is conventionaly Diagnosed upper respiratory bacterial infections which I do not have. Even if I claimed a technical fact and said that lyme is a bacterial infection that still would not count.(and I don’t seem to have lyme anymore.)

And if insurance did cover it, it only covers part of it and I would still have to shell out a lot of money possibly every six weeks. In America, cost of health insurance is so much that its usually part of your employment package.

Prescription cost is a major thing in America right now. The companies are screwing over people, just as an example; my thyroid medicine is cheaper if I use a manufactures coupon versus running it through health insurance.

So older Americans are facing a huge reality, cut back their health spending and enter retirement with some money, or spend their money on health, and be poor in retirement. Note: our earned Social Security retirement payments have not been enough to retire on for a couple decades by now.

Post Edited (astroman) : 3/17/2024 12:04:18 AM (GMT-8)

Posted 3/17/2024 9:09 AM (GMT 0)
Yes, it's a very high dose. So far, the herx that I've got from this is like a flu, I have my nose blocked, feel a bit tired, sore throat and a stomach a bit upset. It's very important to hydrate a lot before, during and after the infusions, otherwise side effects can be worse, and making sure that the infusion rate is less than 100ml/hr, at least during the first few times.

about your second topic, it's sad to hear that in a country like the US, medicine is just but a business. A bit of regulation from your goverment in that area would be very welcome.

I understand your concern, it's a lot of money. Still, even with the immune deficiency, if you treat your Lyme plus coinfections with enough amount of abx, you'll end up reducing your bacterial load and it will improve your immune system for sure. The only thing I can tell you is to go for something, because we only live once, and we have to make the most of what has been given to us.
Posted 3/17/2024 11:30 AM (GMT 0)
There are lots of potential causes of neuropathy - injury which I didn’t have, nutritional deficiencies, viral infections, thyroid disorders, bacterial infections like Lyme and Co, diabetes, auto-immunity and many more! I don’t know what is the cause of the neuropathy I have
Posted 3/17/2024 4:11 PM (GMT 0)
Let's hope you can find it soon. Anyways, being Lyme and coinfections involved, that would be one of my first candidates for sure.
Posted 3/17/2024 4:25 PM (GMT 0)
Neuropathy can be several things altogether causing it to. I had some neuropathy symptoms that matched descriptions of what it feels like years ago. But once they did the micro electrical test on my nerves (whatever that common test is called), that came up as negative, go figure. Even though my hands and arms, and sometimes lower legs and feet were tingling. The feet had a more hot sensation though than tingling. It would come and go.

I had tight lumpy muscles back then, which were also pushing on a lot of nerves. My thyroid was still not optimal. Once optimal this neuro feeling got a little bit better, and once Lyme disease was treated, it got a little bit better again.

The only thing I’ve ever done, directly related to auto immune, was get food sensitivity testing. Which, of course showed gluten, corn, and cane sugar, as a major cause of a cytokin release in my blood. (not uncommon with auto immune patients). My thyroid nodule of 20 years dissolved 3 to 6 months after going gluten free. One thyroid antibody normalized the other one dropped a lot, but is still active.
Posted 3/17/2024 4:44 PM (GMT 0)
I’ve been on IVIG for most of 18 months. After several years of negative autoantibodies, I finally convinced an ENT to do a lip biopsy, which was very positive for Sjogrens Syndrome. Also positive nerve tests showing large and small fiber neuropathy.

The neuropathy doesn’t feel any worse after 18 months, and I am hoping the IVIG calms B and T cells, along with regulate immune system.

The only way I found it was Sjogrens was by insisting on lip biopsy. A lot of rheumatologists are ignorant to all Sjogrens can cause. It’s been a battle.

Hope the infusions help you.
Posted 3/17/2024 7:21 PM (GMT 0)
Hi running wild,

Haven't you had some improvement at least with the IVIG? Sjogrens is autoimmune, so it should help. What dose are you receiving of IVIG? High enough dose?

Immune diseases are a bummer. Many times you have something and autoantibodies test negative. What were your Sjogrens symptoms? I drink around 3 to 4 liters of water per day and sometimes my mouth is dry, so I wouldn't discard that I have it either.

Good luck with your battle too, hope you get better soon.
Posted 3/17/2024 7:26 PM (GMT 0)

astroman said...

The only thing I’ve ever done, directly related to auto immune, was get food sensitivity testing. Which, of course showed gluten, corn, and cane sugar, as a major cause of a cytokin release in my blood. (not uncommon with auto immune patients). My thyroid nodule of 20 years dissolved 3 to 6 months after going gluten free. One thyroid antibody normalized the other one dropped a lot, but is still active.


My neuropathy problems also increase with food. There are many things that I have discarded and I only eat white meat, eggs, some fruits, olive oil and ghee. If I eat something different, symptoms increase.

So good to hear that you have managed to get rid of your nodule just with a food change. Food is extremely important in our cases. I'm glad that you have managed to remove what wasn't working for you.
Posted 3/18/2024 3:49 PM (GMT 0)
Geralto - To answer your questions, I do think the IVIG has helped with the neuropathy, as in it hasn't gotten worse. I also believe it helps calm the cytokines that make the Sjogrens harder to deal with. I am taking 1g per kg of body weight (I weigh 69-70 kg). That is completed over three days. The side effect I experience, no matter what I do, is I get migraines with IVIG.

Overall, I do not believe it has helped the autoimmune because I am having trouble breathing after exertion, and I am in very good shape, considering. Also, my TSH is low normal, but that has dropped in the last couple of months. Tried all the time, but I was like that long before drop in thyroid.

I saw on your thread you have had reactivated "viruses." I would guess one of them is EBV? If that is the case, have you had a Sjogrens antibody test to check. Just going by the symptoms you are experiencing. The version of Sjogrens I was lucky enough to get kicks butt. Very fatigued, neuropathy, breathing issues (could be through autonomic dysfunction caused by Sjogrens) or it has caused interstital lung disease, which I'm waiting to meet with pulmonologist again to figure out what is going on.

Hope you get all the answers you need. It took me being very insistent consistenlty to get answers, just as it did for Lyme.
Posted 3/18/2024 7:17 PM (GMT 0)
Running wild - I've read that for autoimmune issues it's recommended between 1,5 and 2 g/kg/month. Have you tried those figures and see what happens? This could be an option that would make your Sjogrens improve, who knows.

I thought I had reactivated viruses, but I'm not sure about it anymore. Since I discontinued abx and with some weeks my fatigue has gone away, and when I told my neurologist that my fatigue increased when my neuropathy increased she wasn't surprised about it. So maybe it wasn't reactivated viruses but the autoimmune process causing fatigue.

I looked for anti nuclear antibodies, but they tested negative. Getting a proper diagnosis for this is almost impossible. The key here, I think, is to get rid of the infections, which is easier said than done, but I bet that, if we do it, our autoimmune issues will go away.

You too good luck with your neumologist and trying to fix the problem. It will take some time, but we are on the right track finding answers.
Posted 3/20/2024 1:04 PM (GMT 0)
I’ve been asking my neurologist to up the dose. Hooefully, she will after this month.

You mentioned dryness, I think, in a post. If so, have you been checked for Sjogrens, to be safe? As mentioned, it took a lip biopsy, which really didn’t hurt, to catch mine. Not suggesting that, but maybe auto antibodies could or could not show something. My ANA has only been low positive twice over the msny years.
Posted 3/20/2024 9:00 PM (GMT 0)
Good luck with it. I've read that some people have no improvement with IVIG, but when they are asked, they are using 1gr/kg/month for autoimmune issues. Let's hope it brings your improvement with a higher dose.

I've only checked autoantibodies, which were negative. How was your lip biopsy done, like a punch biospy or different? I'll suggest that to my neurologist, maybe it helps with the public health system for covering the IVIG. Thank you for the suggestion. I drink a lot, 3 to 4 litres of water per day, my mouth is sometimes dry and my tongue is white near the throat. That could be correlated to Sjogrens, who knows. Worth trying.
✚ New Topic ✚ Reply
12