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Starting with IVIG

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Posted 3/22/2024 7:24 AM (GMT -5)
I second Runningwild's suggestion. Sjogrens is seronegative in about 50% of cases. The only dispositive way to confirm it is by lip biopsy.



I estimate about 50-60% of people respond. It is a miracle for a lot of people though. I know some who have gotten back to near 100% recovered using it.

I know many people who developed neuropathy on abx. Something about the release of LPS from the killing of bacteria near the nerve triggers an autoimmune process. I cant take any abx without extreme horrific pain.

May I ask is your muscle and joint pain, is it actually in your tendons? When it affects the ribcage and muscles it tends to be enthesitis which is inflammation of the tendon sheath and a very specific type of arthritis.

Post Edited (dcd2103) : 3/26/2024 8:02:50 AM (GMT-8)

Posted 3/22/2024 1:33 PM (GMT -5)
"May I ask is your muscle and joint pain, is it actually in your tendons?"

Very good question. Mine was.

There is a difference. And there is another current post about that subject.
Posted 3/23/2024 9:25 AM (GMT -5)
Hi dcd,

I've read many of your posts about neuropathy, glad to read that you are still fighting and that IVIG is helping you.

I can imagine that using Rituximab is a bit scary, but probably is the right move. In my case, if IVIG alone doesn't work, Rituximab is one of the additions that I have in mind (either that or corticosteroids) plus abx. We only live once, and the alternative of not fixing the problem is scarier than the use of dose drugs (at least for me).

This two webpages below are interesting stories about IVIG and other alternatives for treating autoimmune conditions, they are written by Dr. Jaller.

https://lymemd.blogspot.com/2017/08/autoimmune-encephalitis-and-lyme.html

https://lymemd.blogspot.com/2019/12/pandas-diagnosed-15-years-after-fact.html

about my muscle and joint pain, it's difficult to describe. I feel it in my tendons and ligaments, yes. They feel very similar to an overstretched rubber band, which has lost part of its resistence and doesn't work well. Sometimes I feel my joints as if they are not stable enough due to the inflamation, and sometimes I can hear some cracks in the tendons when they move close to their maximum range and after that it hurts for some hours or even days. Driving is a bit of a torture because of that. There is also some inflamation within the joints, you can't see it from outside but from the inside I feel it perfectly.

Thank you for the Sjogrens info. I will take it into account in my next visit to my neurologist.
Posted 4/23/2024 12:33 PM (GMT -5)
Hi everyone,

I wanted to update on my treatment, as last week I took my second round of IVIG. I did it for 3 days, 40 grams per day making a total of 120 grams (2g/kg). Infusion rate was very slow (75ml/hr) so I didn't have any side effects.

I tried a few days later to see my response, but after taking something very light (essential cinnamon oil) my neuropathy started rising, so seems it hasn't kicked in yet.

I've done some research and it seems like the moment it starts working depends on the person. The most relevant information I've found about this is given in the following links.

The first one is from Dr. Jaller, in one of his posts:

https://lymemd.blogspot.com/2017/11/the-difficult-patient.html

"IVIG. Not always a panacea, IVIG can be incredibly effective when available. It has to be dosed appropriately. IVIG is dose 1.5 – 2 gm/kg. It may take 6-9 months before improvements are seen."

The second one is from Dr. Elena Frid in one of her presentations:

https://www.youtube.com/watch?v=2q3fs_6eiis

"IVIG in immune modulating doses 1.5-2 gm/kg over two days monthly. Improvement typically after 9 treatments."

Seems like I'll have to wait to see results.

For those who have been or are taking IVIG, what has been your experience?

Thanks for sharing
Posted 7/5/2024 5:02 AM (GMT -5)
Third and fourth upgrade. My third cycle was the 16th and 17th of May, 2gr/kg, and the 4th cycle was the 13th and 14th of June, again 2gr/kg. Still no improvement whatsoever. Whenever I take any antimicrobial, no matter how soft it is, neuropathic pains comes back and goes away after a day or so. My question is, how long do you think is a reasonable time to keep trying IVIG? I was thinking about giving it a go for two more months, and if it doesn't work, look for other treatments. What are your thoughts?

Thank you for sharing.
Posted 7/5/2024 6:17 AM (GMT -5)
hi Geralt

thanks for the updates - always interesting to hear how people are getting on with treatments

ref your question - as per the examples in your referenced links - while some people could be lucky and get near immediate results - i think it more often can take many cycles for it to tamp down the immune system

i can see why this might be the case - as a lot of the symptoms of lyme disease are driven by the immune systems dysregulation - rather than the microbes directly - so it is this that we are trying to reverse with IVIG

that immune dysregulation includes things like auto-antibodies etc - and it seems logical that it could take many months of treatment to break that cycle and reverse the auto-immunity - as the cells that are involved in driving it can be quite long lived - eg macrophages live for many months - so one may need to continue treatment till enough of them have turned over to have noticeable effects.

sorry i know that's not good news - and i am sure some people react much sooner - but i think its normal for the majority to take longer. i think if it were me - and i had come this far / spent this much - i would probably reason it was worth the extra to do 9 months worth so i could at that point confidently put it to one side knowing i had given it a full go.

BTW - essential oils are typically not mild antimicrobials when it comes to chronic lyme and co - i react much more strongly to them - even in small doses - than i do to what are generally regarded as strong or high dose antibiotics eg even 10 or 20mg of oil of oregano ( 90% carvacrol version) hits me much harder than say 600mg of rifampicin. i think cinnamon oil is right up there on a par with oregano for antimicrobial effects.
Posted 7/5/2024 8:32 AM (GMT -5)
Hi Garzie,

Thank you for your reply. There is one thing that worries me, and it's that my autoimmune case may not be driven by autoantibodies. Neuropathic pain comes when I take antimicrobials (I can feel it 5 or 10 minutes after taking them) and goes away after usually a day or two. If this was antibody-driven, the immune response would be continuous and I would be feeling the pain non-stop. However, this has a trigger and then, after some time, goes away. This response leads me to the thinking that the issue may be T-cell related, and after studying a bit of immunology, it's usually the malfunctioning of regulatory T cells what causes autoimmunity in this department. I have explained my case to chatgpt and he agrees with this diagnostic, thinking that the responsibles may be Treg cells and not others. For this, I doubt that IVIG will work, because it's more antibody focused, but again, who knows. Nobody knows about this.

I'm going to run some blood tests to study in detail the subpopullations of immune cells, cytokines and so on to try to shed some light into the matter, and then consult with my immunologist, chatgpt, papers and case reports to see what I can find. I'll keep you updated, because I'm sure that there may be other people with a situation pretty similar to mine that may find this information useful.
Posted 9/26/2024 12:07 PM (GMT -5)
Last update for this post. I did the 5th and 6th cycle of IVIG with no success whatsoever, I finished more than a month ago. There has been no improvement at all and the neuropathy is still there whenever I take any antimicrobial. Considering how expensive IVIG is, I've decided to look for alternatives so that I can continue treating the infections. I'll update in another post the steps that I've taken, because I think they may be useful for some people with autoimmune diseases.
Posted 9/26/2024 12:15 PM (GMT -5)
sorry to hear you had no benefit Geralt

but interested to hear what you find or speculate about the causes and potential approaches to treat auto-immunity

i think its an under appreciated part of this chronic lyme disease complex - we likely all have some degree of auto-immune reactions going on
Posted 9/27/2024 12:28 AM (GMT -5)
Dear Geralto,
thank you for sharing your experience. I dont have any experience with IVG. However this year I did take V penicilin 1200 000UI 500mg 4 x times a day, eg. every six hours, taking daily 2g. I did not notice particularly concrete improvements but there was some effect. I think that penicilin family of abx, without clavulanat, eg amoxicilin, does not have sufficient efficiency against gram-negative bacterium such as borrelia. Also as a abx monotherapy it probably lacks sufficient penetration to brain and CNS, does not cover all stages such as stationary, growing, cystic forms - compared to abx combined therapy. Also other essential elements of protocols such as biofilm busters, etc etc etc are importantant and if lacking, there is a less chance for progress. This is sort of my understanding, and also experientially I did not manage very well, so I ended up with this kind of conclusion. If u m wrong please correct me. Best wishes, B
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