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Does Dr J do immunotherapy?

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Posted 7/25/2019 8:26 PM (GMT 0)
I agree, Immunotherapy sounds like a smart avenue to explore. Isn't that super expensive and hard to qualify for? If only we had unlimited resources, right?

If you have not had a Cephalosporin class abx, maybe it is worth a shot. They can be a little expensive too, but prob a fraction of IVIG. Ceftin is the only one I had.

Mino isn't all that expensive.

In my case I had little to no response to Doxy and saw major improvements with Mino.
Posted 7/25/2019 11:59 PM (GMT 0)
LymeMother-

Man, i feel for your son. Understand that the derealization, dementia, confusion are horrid. It's awful that he has to live through that. It seems like you're very supportive and that counts more than anything.

Man, how i wish i could have breaks from the derealization, i haven't felt reality in 7 years :/

His issues sound errily similar to what i read about autoimmune encephalitis as well and like i mentioned before, there are some top notch doctors that use flagyl as a test for brain autoimmunity. It can obviously cause die-off as well so it's a sticky situation. I think it comes down to what we feel is right

It makes me wonder, if lots of people have so much difficulty with flagyl and ask to be switched, could it in fact not be die off for them but rather an exhasterbation in autoimmunity? I wouldn't be the one to answer that but it makes me curious.

Tell your son to hang in there and props to you for taking such care. How is his mindset?
Posted 10/5/2019 2:02 PM (GMT 0)
Wow just finding this thread now. I’ve never seen something so close to describing me as this.

"Lyme patients with predominant autoimmune issues have strange experiences which they may find difficult to put into words. Complaints I hear, include: strange head pressure (not headache); “brain on fire,” derealization (feel like on a different planet); sensory overload, brain shuts down; altered visual perceptions; hallucinogenic-like perceptions, experience; severe, strange depression, treatment resistant and many others. These patients may experience a unique world of misery which is otherwise inexplicable and indescribable.”


Like you Aerose91 I have all brain symptoms and have only gotten worse over the 7 years I’ve been treating infections. 13 years total with symptoms. I have been stuck in my room for basically 6 years, impossible to do anything cause of my brain. Granted I’ve never really done intense protocols since my brain is so sensitive to everything. Everything I try irritates my brain.

I am on disulfiram now and have been off and on with it for 5 or so weeks now. There are some days where I think “ wow this is for sure hitting the right thing” and some days where I think it may just be like all the other treatments. Still bed bound but this has been the closest thing I’ve seen to thinking it may get me out of this hell. Only time will tell.

Did you start treating for autoimmune stuff yet? Keep me updated cause you sound a lot like me. I don’t have halicinations but my brain has been on another planet for several years now and has only been getting worse.
Posted 10/5/2019 2:20 PM (GMT 0)
My doctor did mention Gamastan ( intramuscular globulin instead of the IVIG) to me at one point so I would have access to that. Does anyone know if that would be effective?
Posted 10/5/2019 3:16 PM (GMT 0)
Just started looking more into autoimmune encephalitis. Dr Frid seems to be a specialist in it. She did an interview with Bay Area Lyme.

“Often, patients are treated symptomatically or treated for one infectious, inflammatory, or autoimmune process at a time. Results are attained only when the patient is treated for everything that is going on with them all at once.”

Maybe this is why disulfiram seems to be working like nothing else has for me. According to Liegner it is better than any other babesia treatment he has seen. Then on top of that it is supposed to hit Lyme persisters. Getting those two under control at the same time with very effective treatment may be vital
Posted 10/5/2019 3:40 PM (GMT 0)

JovaLyme said...
This is a very interesting thread.

My symptoms are exactly like the autoimmune symptoms I've seen described here and everything I do to treat this makes me feel much, much worse. Whether it be herbs or ABX, every time I treat this with anything I feel awful.

I'm beginning to wonder if the original Lyme infection damaged my immune system and now it is going haywire and wrecking my nervous system and brain.

At the moment I'm only on doxy and a low dose at that, but I feel absolutely dreadful on it. This can't be a herx.

This is exactly like me. Every time I tried treating Lyme I’d just end up in a worse spot. Just continue to feel worse as I take it but when I stop and take a break still be in a terrible spot.

Dr. Frid also talks about the inflammation affecting the blood brain barrier so it could be that everything we try is crossing the blood brain barrier easily and irritating our brains.

Disulfiram is making me very optimistic and it could be like she is saying and treating all my infections at once. I will keep you updated on it.
Posted 10/5/2019 4:17 PM (GMT 0)

JovaLyme said...
Are you actually on Disulfiram at the moment Brab8878?

I am. The most optimistic I’ve been about a treatment since this all started. Feels like it’s “ hitting the right thing” in my head. Been on it on very low dose for 5 weeks or so, so will see how it all ends after a few months. I’m on 125 every other day but will be bumping up to 125 every day in the next couple days.
Posted 10/5/2019 4:33 PM (GMT 0)
“Who is Dr TV?”

Ty Vincent.

He does the LDI
Low dose immunotherapy.
Posted 10/5/2019 4:39 PM (GMT 0)
Aerose : “I have exactly all of this and my SPECT shows 9 lobes of hypoperfusion. He goes on to say that a test for those with AI encephalitis is to take Flagyl. If you have a direct ramping up of psych symptoms with it, that's also a good indicator. I also have exactly that. “

I know dr J likes the SPECT scan - is that who (him or his NP) had you do it - and what was discussed re: the results?
Posted 10/5/2019 4:43 PM (GMT 0)
The Pediatric LLMD Dr Jones uses IVIG for some of his patients.

Have you seen this article?

https://www.prohealth.com/library/evergreen_pages/alternative-and-complementary-treatments-for-lyme-disease

Scroll down to the IVIG section
Posted 10/5/2019 4:49 PM (GMT 0)
I am surprised that you’re not on mino - it hits the brain - maybe they’re thinking it would ramp up your current symptoms??

I would ask about it and see what they say.

Is your NP saying anything about lack of progress?
Sorry if you’ve mentioned that already.
Posted 10/5/2019 4:51 PM (GMT 0)
Dr Frid mentions that she’ll use IVIG and antibiotics at the same time but with some cases just treating all the infections at the same case will be enough and reverse the autoimmune encephalitis
Posted 10/5/2019 9:51 PM (GMT 0)

JovaLyme said...

Brab8878 said...

JovaLyme said...
Are you actually on Disulfiram at the moment Brab8878?

I am. The most optimistic I’ve been about a treatment since this all started. Feels like it’s “ hitting the right thing” in my head. Been on it on very low dose for 5 weeks or so, so will see how it all ends after a few months. I’m on 125 every other day but will be bumping up to 125 every day in the next couple days.

>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>

Did you start at 125mg?

So, it's hitting stuff? What infections do you have and are you herxing badly on it?

I'm trying to get hold of some at the moment, which is proving to be a nightmare, but that's another story! What exactly is in Disulfiram? Isn't it some kind of sulphide or something like that? I'm just trying to work out if there is a more natural product that contains a similar ingredient that doesn't have the potentially damaging side effects of DSF.

It's interesting because it essentially comes from minerals from what I can understand.

Honestly no idea what infections I have. I have no distinguishable symptoms. Basically my exact symptoms are the ones listed for autoimmune encephalitis above. Head pressure, brain feels like it’s on fire, derealization , depression etc. And sensitive to everything I take. Nothing else really.
None of my tests indicate coinfections.
If I had to guess I think there may be babesia along with Lyme.

My doc had me start at 125 mg/ every other day for a month and now told me I can go up to 125/day. He’s having me check liver enzymes every few weeks since that can be a side effect

My screen sensitivity, food sensitivity, just overall feeling of extreme discomfort have all subsided so far. A few times where I feel my normal emotions come back. Some head pressure relief. Not sure if anyone can relate to this feeling but it just feels like it’s hittig the right stuff in my brain.

Disulfiram isn’t an antibiotic. It has a very long half life which might be why it works so well for infections. I don’t believe you’ll find anything natural like it unfortunately. Where do you live? I can give you an idea of doctors prescribing if near New England area at all.
Posted 10/5/2019 11:38 PM (GMT 0)

JovaLyme said...
Hi Brab8878,

I am beginning to wonder if the sulfur content of Disulfiram is what makes it so effective. I can't find anything that specifically tells me the exact contents of Disulfiram though. What I find interesting is the obvious suggestion of sulfur as a component of the drug. This correlates with other things that are known to hit chronic illness pretty well. When I thought I might have MS, I bought a book by a lady who has more or less reversed her MS purely through diet. It is a very sulfur-rich diet. Given that there are clear links between Lyme and MS, I am beginning to think that sulfur and other natural substances are playing a part in curing these ailments.

I also have symptoms exactly as described in this thread too, so I would guess that I possibly have Borrelia and Babesia too. My head and CNS symptoms are just horrific and I am going through hell.

I wish you the best. I do know that another doctor that recommended disulfiram for me mentioned that they go up to 125 mg/day and then add MSM which is very heavy with sulfur I believe? So I think you may be right that sulfur may be a part of it. I did do Allicin for awhile which has a ton of sulfur and that never helped so not sure it’s exactly the sulfur but who knows.

Post Edited (Brab8878) : 10/5/2019 6:05:42 PM (GMT-6)

Posted 10/6/2019 1:09 AM (GMT 0)

JovaLyme said...
That's interesting Brab8878,

So, it seems that doctors are making the link between sulfur and this particular therapy then?

MSM is a food-based sulfur. I am wondering what type of sulfur is in Disulfiram? I've tried looking into it, but it's a bit too scientific for me!

I've never heard of Allison. What is that?

Sorry my phone autocorrected. I meant to say Allicin, which is a part of Zhangs herbal protocol and very heavy sulfur.

It’s just my guess on the sulfur and one doctors recommendation to add MSM but there may be a link. Everything’s so experimental now that no one really knows why it’s working so well for some patients so don’t worry about not understanding
Posted 10/6/2019 7:14 PM (GMT 0)
There was a lot of research on extended fasting in the USSR, it can improve asthma and other autoimmune conditions, just be careful and do it with medical supervision if possible.

I myself had intolerable reactions to Bactrim until I stopped taking herbal immune stimulants like andrographis and cat's claw. These infections use molecular mimicry (expression of host proteins like myelin) to cloak themselves from the immune system, it makes sense that they could be causing autoimmune disease with identical symptoms.

The LymeRix vaccine was taken off the market partly due to the autoimmune reactions it was causing, Alan Steere was the one who identified the problem. Lymedisease.org has an article on it.
Posted 10/7/2019 10:31 AM (GMT 0)

acarined said...
There was a lot of research on extended fasting in the USSR, it can improve asthma and other autoimmune conditions, just be careful and do it with medical supervision if possible.

I myself had intolerable reactions to Bactrim until I stopped taking herbal immune stimulants like andrographis and cat's claw. These infections use molecular mimicry (expression of host proteins like myelin) to cloak themselves from the immune system, it makes sense that they could be causing autoimmune disease with identical symptoms.

The LymeRix vaccine was taken off the market partly due to the autoimmune reactions it was causing, Alan Steere was the one who identified the problem. Lymedisease.org has an article on it.

This is something I struggle with. Do I take cat's claw again or is this not an active infection but rather autoimmune? Eluthero screws me up, too. So what does that tell me?
Posted 10/7/2019 5:06 PM (GMT 0)

Brab8878 said...
Just started looking more into autoimmune encephalitis. Dr Frid seems to be a specialist in it. She did an interview with Bay Area Lyme.

“Often, patients are treated symptomatically or treated for one infectious, inflammatory, or autoimmune process at a time. Results are attained only when the patient is treated for everything that is going on with them all at once.”

Maybe this is why disulfiram seems to be working like nothing else has for me. According to Liegner it is better than any other babesia treatment he has seen. Then on top of that it is supposed to hit Lyme persisters. Getting those two under control at the same time with very effective treatment may be vital

But many of us do treat lyme with Babesia already.
And we’re struggling to get well too.
Actually I don’t know of any llmd’s who would just treat Babesia - ie Mepron/malarone by itself without an antibiotic that hits lyme.
Posted 10/7/2019 5:33 PM (GMT 0)
Understood but from what Liegner has described in his interview, disulfiram works “ way way better” than current babesia treatment and disulfiram is supposed to wipe out the persisters for Lyme so that combo may be key. This is just my hypothesis. I obviously have no idea.
Posted 10/7/2019 5:35 PM (GMT 0)

JovaLyme said...
Aerose91,

I think that if anything that stimulates or supports the immune system makes you feel worse then you have a problem with your immune system and it simply isn't doing what it is supposed to do.

What that says to me is that your immune system is attacking you and not the infection. It could either be that the bacteria is still there but your immune system can't touch the bacteria and is hitting your tissues instead - or the bacteria is gone and your immune system is malfunctioning and attacking you like every other autoimmune condition. This is only a theory, but maybe Lyme provokes a response and the immune system ends up totally malfunctioning.

There are a lot of autoimmune disorders and many of us have them. It could just be that Lyme makes the autoimmune condition worse.

Asthma is an autoimmune disorder, arthritis - even eczema. My dad has asthma and I had terrible eczema as a child. Now I have arthritis as well as inflammation in my whole body. The Lyme has clearly played a part in my worsening symptoms, but I've clearly always had autoimmune problems and it is genetic.

Lyme seems to devastate the immune system. Most of us have very low NK cells and a lot have elevated white blood cells. That is definitely an immune problem from where I'm standing. If medication makes you feel worse then there is something not right somewhere.

Buhner writes about some latent bacteria causing a chronic immune stimulation but then still recommends things like cat's claw. I've tried to take it so many times but I always get worse. I just want something to help so badly, even if just 1%
Posted 10/7/2019 6:59 PM (GMT 0)

JovaLyme said...
Aerose91,

I get the distinct impression that so much of this is guesswork and theories. How this disease works and what it does seems to depend on who you ask. So many doctors and herbalists have different opinions. Some don't even think it exists. Who do we believe?

Just from my own trial and error with this, I can't help but notice that every single thing I take makes my symptoms much worse. And I mean everything. I'm going to try a water fast and see what that does. If nothing else, it might detox my body and kill off some things even if it doesn't completely cure me, but there are people out there who have been cured using a water fast.

I know exactly what you mean and can feel your desperation. I feel the same. Life is a living hell right now.

Just a couple ideas because as I stated before we sound very similar and I haven’t found too many people like us. Have you looked into mast cells? Also Dr Nathan thinks things that quiet the nervous system like DNRS can help a lot of patients so that they can then tolerate treatment.

I’d highly recommend his book Toxic because it deals with patients who are super sensitive
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