Does Dr J do immunotherapy?

Aerose - sorry you've not had any improvements thus far.


" post-lyme autoimmune encephalitis; derealization, hallucinations, confusion, dementias, psychosis, brain on fire, etc. One doctor even writes that a good test for these people is if Flagyl makes their symptoms worse. That's exactly what happens to me. He said that AI encephalitis people "live in a special sort of hell" Yes. Every day for 7 years..."

Those can also be current lyme issues - not just post-lyme.

Flagyl also makes many of us worse - ie herx because it's busting the cysts.

I have been herxing badly - on the Friday's of my week 1....which is Rifabutin/mino/ceftin. I keep saying it's Rifabutin...BUT, I also take flagyl on the Th/F of that week. But not every single cycle...trying to look for a pattern.

Perhaps I've been mistaking the Flagyl herxing for the Rifabutin herxing....I'll have to test that out next cycle.
maybe the times I didn't herx...I didn't take the full flagyl doses....


I've not heard of Dr. J doing immunotherapy...

Have you thought of doing the LDI? That has helped some people.

Aerose91 said...
At this point i tend not to think it's a herx because it's always the same thing and i never see a shred of improvement. Plus, all my herxing has usually been close to the same symptoms. Directly making the derealization, confusion and spaciness worse is unique to the flagyl. Plus, if it were still infections wouldn't i have seen some- any- improvement by now? After all these years?

Yes - I would think you'd see some improvements.

No symptoms whatsoever have resolved with all the treatment?

Have Dr. J tried dapsone yet? I've heard that leprosy drug helps autoimmunity, crosses the blood brain barrier, and treats neuro symptoms for many patients and kills borrelia that's crossed the blood brain barrier.

Minocycline crosses the blood brain barrier and also treats autoimmunity and borrelia.

Might be a good idea to start thinking outside the box and try disulfiram, as I'm starting hear more LLMDs willing to prescribe this drug because of the recent study on it curing 2 out of 3 patients where most drugs didn't work for them.

And I'll say this too, for some they have to change their diet and exercise in order to beat this disease, many LLMDs emphasize on this like Dr. B. He has said many times, if you don't exercise, eat right, chance of remission is slim.

Just walking every other day, even if it's a little. Going on a gluten dairy free diet, this helps with autoimmunity with diseases like celiac and gluten intolerance, thyroid disease, etc... Cut out things like fluoride from your water, toothpaste etc...

This was a good article from Woman's Day
https://www.msn.com/en-us/health/voices/i-lived-with-chronic-pain-for-years-until-i-cut-this-one-thing-from-my-diet/ar-aaehsnu?amp;ocid=spartandhp&li=bbmkt5r

Look at how much change in this patient who changed his diet after he contracted alfa-gal allergy from his diet, I'm sure you don't have alfa-gal, but hey, cutting out gluten, maybe even gutting out meat may be worth a try...
https://www.youtube.com/watch?v=0h63vfzsnqk

And really considering all your neuro symptoms, as someone like Dr. B would of said, you should of starting off with IV antibiotics, then oral antibiotics, then maybe herbs to trickle off with. Starting off with Stephen Buhner protocol wasn't the best idea considering your immune system and T-cells were probably so far gone in the beginning. And really, herbs don't cross the blood brain barrier too well either. Starting off with aggressive oral or IV antibiotic treatment in the beginning can make a big difference, as Dr. B suggests here, it makes the coinfections a lot easier to fight down the road.
https://vimeo.com/306846706

Post Edited (Charlie55) : 7/24/2019 4:48:24 PM (GMT-6)

Aerose91 said...
all my herxing has usually been close to the same symptoms. Directly making the derealization, confusion and spaciness worse is unique to the flagyl.

I’m not sure I am understanding correctly. I thought all your herxing had been that - making the derealization, confusion and spaciness worse. Are you saying all your herxing was something else and only the Flagyl made the derealization, confusion and spaciness worse?

Was this a doctor you saw who said that about Flagyl or something you found when searching the web? What, if anything, does this doctor or others specializing in AI encephalitis do to treat or reverse it?

Isn’t this pretty much what the CFS/ME group from paradigmchange has - encephalitis?

I still think you should try Cholestyramine for at least a month. Any doctor could prescribe it if they are willing to try to help you. I can’t imagine any doctor who understands there is an element of toxicity involved not being willing to at least let you try it. You have nothing to lose except a few hundred dollars if you get the custom compounded version, which you would definitely need. The regular stuff is 60% filler junk per dose. The added ingredients would probably cause you bad reactions.

Thank you guys for the responses.

Charlie- i appreciate the diet advice. I have eaten an anti-inflammatory diet for well over 15 years now. I was a personal trainer and nutritionist before getting sick so even though I've gotten stricter, i haven't eaten dairy, gluten, soy, sugar, corn, lectins or anything processed for well over a decade. Ive since done long durations on the GAPS and other autoimmune type diets. God, i wish diet could heal me!

Girlie- i haven't done the persister protocol yet. I imagine they will move me on to whatever is next when i see them in September because im going to report zero change from the parasitic treatment. I talked with RM once about autoimmunity and she seemed pretty familiar with it but that's as far as it went. Im going to see their treatment through but i think i need to start reaching out to new doctors, one's in the AI/neurology field because that's the only avenue i have yet to explore. It's been 8 years and 28 doctors so far with zero improvent. Im worn down

Walking- my herxing is usually typical- fluish malaise, weakness, fatigue etc. It's never an exacerbation of existing symptoms. The flagyl is the only thing that directly increases my derealization, confusion and spaciness. It isnt altered by detoxing or anything which also gives me pause.

I was tested for a bunch of anti-receptor antibodies; NMDA, ACHR, bunch others but they were all normal. I guess that's not unusual in autoimmune encephalitis cases though. IVIG is used to balance out your immune system and pull back autoimmune reactions. It's ungodly expensive though. Supposedly M.E. is inflammation of the brainstem but i haven't met anyone in that community who has the brain affliction like i do. The only others are people who have some autoimmune encephalitis. I was hoping it was babesia but no dice.

Aerose - man - you deserve a medal to be persevering with all this with no change.
I’m certainly having rough times still BUT what keeps me optimistic is that I’ve lost many symptoms while treating.
I’m worn down too - can’t imagine how you re coping.
I hope it’s figured out soon!

Have you asked to see DrJ himself?
Not that he has a silver bullet BUT just because of his vast experience and his keen intuition - maybe it would be worthwhile?

And the LDI might be worth a try with dr TV

WalkingbyFaith said...


Lots of people (I would think many to most) have some degree of exercise intolerance. If I understand it right it’s because oxygen isn’t getting in to the cellular level. Some people get better as they treat. I have it but not severely so. Not bed or housebound. Have had long periods when I had trouble walking for weeks to months (after a week of abx - happened 3 times).

Just because you're in pain, having a hard time breathing, doesn't mean you can't get out in walk a little, even if it's just around your house, even if it's just once a week. American's lack exercise, are overweight and they don't eat right at all. I think it's important to just slowly pace yourself...

If you're bed bound for a year or two using antibiotics or herbs, I understand that, but once once you're able to walk again, please use this major benefit. There's millions, I mean millions of Americans that will do anything to talk their way and escape their way out of exercise.

Here's some quotes from Dr. Burrascano

Dr. B - Despite antibiotic treatments, patients will NOT return to normal unless they exercise, so therefore an aggressive rehab program is absolutely necessary

https://www.prohealth.com/library/evergreen_pages/lyme-disease-exercise

Dr. Burrascano said...


It is a fact that a properly executed exercise program can actually go beyond the antibiotics in helping to clear the symptoms and to maintain a remission.

It is known that the Lyme Borrelia will die if exposed to even the tiniest oxygen concentrations and aggressive exercise can increase tissue perfusion and oxygen levels.

Borrelia is very heat sensitive and during aggressive exercise, the core body temperature can rise above 102 degrees.

Regular exercise can help mobilize lymph and enhance circulation.

An intermittent exercise program may help reset the HPA-axis more towards normal.

Could be an important key many lyme patients are lacking...

Aerose91 said...


Charlie- i appreciate the diet advice. I have eaten an anti-inflammatory diet for well over 15 years now. I was a personal trainer and nutritionist before getting sick so even though I've gotten stricter, i haven't eaten dairy, gluten, soy, sugar, corn, lectins or anything processed for well over a decade. Ive since done long durations on the GAPS and other autoimmune type diets. God, i wish diet could heal me!

That's great to hear Aerose91, use this benefit.

One thing I took for granted was my thyroid, you may want to try very low dosages of iodine/selenium(brazil nuts.) A lot of lyme patients have hashimotos, so iodine can be good and bad for hashimoto patients, because it can possibly raise antibodies and make more destruction to the thyroid. But here's the thing, I suspect hashimotos thyroid in lyme patients is a little different rather than those who just have an autoimmune disorder.

There are studies showing that even some hashimotos patients benefited from low doses of iodine, may be worth trying. Along with treating your adrenals.

https://www.ncbi.nlm.nih.gov/pubmed/9703374

ncbi.nlm.nih.gov said...


Three of the seven who were subclinically hypothyroid became euthyroid again when iodine treatment was stopped.

Sometimes the thyroid can even be the missing opponent to boosting one's immune system. For me, having both babesia and lyme really screwed up my thyroid.

Aerose91 said...
I really think that's my underlying issue at this point. I've been to 28 doctors now and treating with Dr J for almost a year with no improvement in anything. Prior to that i treated tick bourne infections via the Buhner protocol and with Dr M for 2.5 years, so 3.5 years of infectious treatment now and not a shred of improvement. I've also been on Mepron, artimsinin, azith, cryptolepis and soon, Ivermectin with Dr J and still no change. I occasionally get a little bit of die off but it's never too severe.

Keep pushing yourself... There's lyme patients that have been fighting this disease for 10 years, even still treating at 15 years.

I would say by the 2 year mark, you should of saw some sort of improvement. But hey, everyone's different and these darn ticks just have so much more coinfections in them now, then previous years.

Even though it's early stages with drugs like disulfiram, just know that there is possible hope right around the corner with this drug, as I think more LLMDs are going to be more willing to treat with it shortly.

Girlie said...
Aerose - was there a plan to do the persisters protocol soon?

Dapsone/daraprim/Rifabutin ...


Also I think trying the LDI might be a good idea. But that means you need a dr to prescribe it - or phone call to dr TV

And I second what Girlie said about Dapsone... That drug ended up being a major stepping stone for me... I assume using it with daraprim would make it 2x as powerful.

Coartem has also worked well for babesia/lyme patients when no other drugs worked for them as well too.

Be sure to also be pounding the probiotics, a major importance of keeping away c-diff as well as boosting a lyme patient's immune system.

Also alpha lipoic acid/milk thistle every day no matter what, herbs or antibiotics, to keep them organs healthy, maybe glutathione too.

Post Edited (Charlie55) : 7/25/2019 1:01:08 AM (GMT-6)

Hey just wanted to comment on a couple things. You are not the only one that had exercise intolerance and dysautonomia. I had both of those to varying degrees. Probably not a severe as yours, and luckily I could still work.

On one hand I want to agree with you that if you have done abx for 3 years with no improvement, that could be
interpreted as an indicator that your issue may not be infectious (bacterial)...

On the other hand I want to ask if you have tried Ceftin, and or Minocycline. I re-read the thread and didn't see any direct reference to those. Sorry if you mentioned it above, but I also had a few antibiotics that I had little to no response to.

Those two meds account for most of my healing breakthroughs.

I think the CFS / ME community also has a few anti-virals that seem to work for some. Were I in your shoes, I would look into some of those anti-virals and any class of abx you have not tried yet.

If I continued to have zero response to the antimicrobials, I would start looking down other avenues - including IVIG and Immunotherapy etc... Maybe it's time to give BVT a shot. I think I would try that, if I were in your position.

I remember reading your post about a year ago. You have been in my mind ever since. I really hope you can start to get some progress.

Aerose91 do you know, what is it about Flagyl that makes the AI encephalitis worse as opposed to other medications? Is there a chance that the Flagyl is really just hitting cystic Lyme in the brain and you’re experiencing a herx? I know most drs only pulse Flagyl but what about a daily regimen of it for a longer period of time to see if you experience any kind of breakthrough. I’m just throwing this out there because you seem so stuck and have tried so many other things. Seems as though you’ve had a good amount of bartonella treatment. What have you done for babesia?
I agree also with girlie in that Skyping with Dr TV might be also worth a shot. I know of someone that really benefited from LDI with autoimmune issues.

Aerose91 - you said you haven’t been on Ceftin ( or omnicef) or mino - I was surprised as those are two commonly prescribed abx at the J clinic.

So you are you on Azithromycin and bactrim then with Mepron?


Maybe that’s something to query - mention you want to try mino -
(it gets to the brain/head )
I wonder what the reason is - since you’ve had no improvement thus far - why your NP wouidnt try changing it up.

Upatnite said...
Agree about maybe trying minocycline and maybe with rifampin? What about tindamax instead of Flagyl? Has that been tried?

He will eventually be on Rifabutin (better than Rifampin)
But not until they feel he’s done enough Babs treatment. (Sometimes it’s combined in same protocol but not usually from what I’ve seen)
What is variable is the abx that go with the Babs (Mepron/malarone) Treatment - like mino.

They generally use Flagyl - but I know some patients have asked for tinidazole instead. But not sure why

Upatnite said...
Ok girlie... I see what you’re saying. Just seems like Flagyl is doing something different so it makes me wonder if the lack of progress is more Lyme related than babesia at this point

You could be right - hopefully the j clinic figured it out
Aerose91 needs a break - a change