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Autoimmune Encephalopathy secondary to infections disease conference Feb 9-11

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Posted 1/25/2022 1:22 PM (GMT 0)
Jason were you able to get IVIG covered by insurance? That seems to be the thing holding some people back from receiving. I just ordered the Cunningham panel but from my u understanding you need an actual immunoglobulin deficiency via labwork for insurance coverage- which I do not have. Is there another way to get coverage?
Posted 1/25/2022 1:24 PM (GMT 0)
I just looked into the Cunningham Panel after reading this post. Can anyone help me understand the following?

1. Is a Cunningham Panel the definitive diagnosis of autoimmune encephalitis/encephalopathy?

2. What is the treatment if your panel is positive?

3. Is the treatment more tolerable than antimicrobial treatment?

4. Does the treatment lead to a cure at some point, or is the treatment open ended in order to remain in remission?

——————
Cost of the panel is $925.

I don’t consider my symptoms to be severe, but I definitely have brain inflammation that gets exacerbated by certain treatments and sometimes acute illnesses.

I have experienced varying degrees of many of the symptoms identified in relation to the panel. I have always kept treatment to a tolerable level so as not to go psycho. After all that I have read about people’s experiences treating with Dr. M, I feel confident I would absolutely not be able to tolerate that and would bail. I wouldn’t even want to attempt it unless I was under inpatient care in a healthy indoor environment with competent caregivers. I have enough pain and suffering as is without blow torching my body and brain.

The irony of it, though, is the ones who don’t bail and survive the treatment actually clear bartonella and become normal again. Then again, are most of his cured patients younger? Do older patients who have been sick longer recover with his treatment? I wonder what problems patients may have later in life as a result of such harsh treatment.

I keep waiting for Divine healing. That’s the only option I know of that won’t kill me in the process.

Post Edited (WalkingbyFaith) : 1/25/2022 6:36:09 AM (GMT-7)

Posted 1/25/2022 1:28 PM (GMT 0)
Cunningham panel was developed to test for antibodies against the brain in children who developed PANS/PANDAS post strep infection.

Dr K has found that his lyme patients w/ cognitive and neuro issues tend to test positive. Mine was quite positive.

As mentioned Dr K uses IVIG and bicillin for this.

Insurance generally wont cover IVIG for lyme. Cunningham panel is not something they would consider. I'd venture to guess, because it's not from a big lab like Quest or Labcorp, that they consider it hocus pocus. They go based on The Science™, which means an FDA study.

As I've mentioned, there are Drs out there like Dr Younger who use it regularly and know how to convince insurance. You need a real specialist who can run over whoever insurance assigns to the case.

Younger also ran a SPECT scan on m brain which showed frontal lobe caloric deficiencies. He finds these in celiacs and other autoimmune gut issues, as well as Lyme. Another test that can confirm CNS autoimmunity. But same treatment, IVIG and/or Bicillin.

darn I wish I wasnt allergic to penicillin 😢

Younger's book is a good read.

https://www.amazon.com/autoimmune-brain-five-step-depression-attention/dp/1538117703/ref=sr_1_1?keywords=the+autoimmune+brain&qid=1643118591&sprefix=the+autoimmune+brain%2caps%2c56&sr=8-1

Post Edited (dcd2103) : 1/25/2022 6:33:23 AM (GMT-7)

Posted 1/25/2022 8:08 PM (GMT 0)
I reached out to Dr. K to see details about becoming a patient. He does not take insurance but still requires you to have a private insurance and you cannot have a state insurance. I'm not working now and don't have a private insurance so I guess I could not become a patient even though I would be paying out of pocket? Never heard of this before.
Posted 1/25/2022 8:11 PM (GMT 0)
I think it's because he cant help you if your insurance is not going to cover various treatments and testing that he needs.
Posted 1/25/2022 10:35 PM (GMT 0)
DCD,

Your experience of massive neuro flaring from even the slightest antimicrobials seems brutal. Also, I'm sure your strategy of IVIG is a good one and I know you have had success with the ketogenic diet as well. We all develop an intuition for what our body needs based of the brutal trial and error of lyme therapies. I wish you the best of luck and a strong recovery with time.

My experience is a bit different. My main infection is bartonella. I did 11 months of clarithro & rifampin, which lead to a massive neuro-inflammatory flare once I got to higher doses of rifampin (seizure like episodes, constant myclonic jerks, severe cognitive impairment and emotional instability, full body extreme pain, completely bedridden) that lasted a few months after I stopped therapy. Now I can tolerate the weaker antibiotics like doxycycline and zithromax and maybe minocycline. And I can also tolerate allimed, which is the garlic extract Dr M believes hits bartonella.

I am not sure when the neuro-autoimmunity began. I've had symptoms of neuro-bart since early childhood (severe insomnia, migraines, sensory sensitivity). But I got 'struck down' with debillitating encepholaphy seemingly overnight two years ago (I am 33 yrs old). That seems consistent with how PANS often kicks in overnight. I also think treating bart with hard therapy could have triggered it. Who knows.

Now I am doing the IVIG and basically decided to self treat. I am on doxycycline 400mg, zithromax 500mg, methylene blue 400mg and 6 pills of Allimed per day. This seems like it could be whittling away at the infection and doesn't cause excessive 'herxing.' I am not going to change that up for at least a few months to try to get a clearer picture of how IVIG is helping. I may try to add in Bactrim 3 days per week later on. I want to try Roxithromycin, which is a macrolide like zith and clarith but passes the blood brain barrier much much better and I think has better anti-inflam effects. I'm also thinking ab high doses of minocycline, which gets into the brain better than doxy and seems to kill bartonella better too. I just received a bunch of nitroxoline too, which kills bart well in vitro, works on biofilm, and penetrates brain well. I also just ordered Furazolidone too. So I am going to be experimenting basically. Ultimately, I think I will need to take rifabutin to clear bartonella out of my skin and tendons, which seem saturated with bart. No way I could tolerate that now tho. Hopefully, in a few years the immunomodulation and antimicrobials will get me back to a high functioning, joyful, minimal symptom existence.

Lyme Guy,

I did manage to get IVIG 100% covered by my insurance. I only tested positive via Cunningham Panel. There is another autoimmune encephalitis panel run by mayo clinic that you can get done at Lab Corp, which is taken more seriously by insurance companies. I was negative on that. I found a local neurologist via networking with local lyme patients who had given IVIG to a bart/pans patient before. She prescribed the IVIG to a local pharmacy with 'autoimmune encephalitis' as the diagnosis. Never use the term PANS or PANDAS or insurance will likely reject you. My insurance requested prior authorization, which means the reviewer needed to talk to my doctor about why this was an appropriate/required treatment. I'm not sure how my neuro convinced the reviewer , but I was suffering from profound cognitive issues and a movement disorder and had the positive Cunningham Panel - so she probably used that. I have Molina insurance, which is not good insurance.

Also, I had an appointment with Dr Frid, who did say I would have a hard time getting insurance to cover IVIG. She also has a policy of only prescribing IVIG to be done in her office. So if you don't live near NYC, she is not a good option. I also have some leg weakness, numbness and tingling. She did say that often neurologists run the EMG incorrectly, almost implying that she could run it in a way that could get a CIPD diagnosis (I could be wrong ab this assumption). I think CIDP is the diagnosis that insurance companies always approve for IVIG. So if you have a combination of limb twitching, weakness, numbness, etc. it is worth trying to get a CIDP diagnosis - its usually based on EMG findings I think.
Posted 1/25/2022 10:48 PM (GMT 0)

JaSon2233 said...
DCD,

Your experience of massive neuro flaring from even the slightest antimicrobials seems brutal. Also, I'm sure your strategy of IVIG is a good one and I know you have had success with the ketogenic diet as well. We all develop an intuition for what our body needs based of the brutal trial and error of lyme therapies. I wish you the best of luck and a strong recovery with time.

My experience is a bit different. My main infection is bartonella. I did 11 months of clarithro & rifampin, which lead to a massive neuro-inflammatory flare once I got to higher doses of rifampin (seizure like episodes, constant myclonic jerks, severe cognitive impairment and emotional instability, full body extreme pain, completely bedridden) that lasted a few months after I stopped therapy. Now I can tolerate the weaker antibiotics like doxycycline and zithromax and maybe minocycline. And I can also tolerate allimed, which is the garlic extract Dr M believes hits bartonella.

I am not sure when the neuro-autoimmunity began. I've had symptoms of neuro-bart since early childhood (severe insomnia, migraines, sensory sensitivity). But I got 'struck down' with debillitating encepholaphy seemingly overnight two years ago (I am 33 yrs old). That seems consistent with how PANS often kicks in overnight. I also think treating bart with hard therapy could have triggered it. Who knows.

Now I am doing the IVIG and basically decided to self treat. I am on doxycycline 400mg, zithromax 500mg, methylene blue 400mg and 6 pills of Allimed per day. This seems like it could be whittling away at the infection and doesn't cause excessive 'herxing.' I am not going to change that up for at least a few months to try to get a clearer picture of how IVIG is helping. I may try to add in Bactrim 3 days per week later on. I want to try Roxithromycin, which is a macrolide like zith and clarith but passes the blood brain barrier much much better and I think has better anti-inflam effects. I'm also thinking ab high doses of minocycline, which gets into the brain better than doxy and seems to kill bartonella better too. I just received a bunch of nitroxoline too, which kills bart well in vitro, works on biofilm, and penetrates brain well. I also just ordered Furazolidone too. So I am going to be experimenting basically. Ultimately, I think I will need to take rifabutin to clear bartonella out of my skin and tendons, which seem saturated with bart. No way I could tolerate that now tho. Hopefully, in a few years the immunomodulation and antimicrobials will get me back to a high functioning, joyful, minimal symptom existence.

Lyme Guy,

I did manage to get IVIG 100% covered by my insurance. I only tested positive via Cunningham Panel. There is another autoimmune encephalitis panel run by mayo clinic that you can get done at Lab Corp, which is taken more seriously by insurance companies. I was negative on that. I found a local neurologist via networking with local lyme patients who had given IVIG to a bart/pans patient before. She prescribed the IVIG to a local pharmacy with 'autoimmune encephalitis' as the diagnosis. Never use the term PANS or PANDAS or insurance will likely reject you. My insurance requested prior authorization, which means the reviewer needed to talk to my doctor about why this was an appropriate/required treatment. I'm not sure how my neuro convinced the reviewer , but I was suffering from profound cognitive issues and a movement disorder and had the positive Cunningham Panel - so she probably used that. I have Molina insurance, which is not good insurance.

Also, I had an appointment with Dr Frid, who did say I would have a hard time getting insurance to cover IVIG. She also has a policy of only prescribing IVIG to be done in her office. So if you don't live near NYC, she is not a good option. I also have some leg weakness, numbness and tingling. She did say that often neurologists run the EMG incorrectly, almost implying that she could run it in a way that could get a CIPD diagnosis (I could be wrong ab this assumption). I think CIDP is the diagnosis that insurance companies always approve for IVIG. So if you have a combination of limb twitching, weakness, numbness, etc. it is worth trying to get a CIDP diagnosis - its usually based on EMG findings I think.

That neuro-herx sounds brutal jason. Sounds kind of similar to what I went through in 2013-2014. I do wonder if bartonella is a problem for me, given my neuropathy fits more of a bart pattern (hands and feet). Can i ask what your tendon pain feels like and where it is? Mine is in every tendon of my body.

I wish i could treat like you but I cant. I was telling garzie i tried 2 drops of licorice tincture yesterday which just exploded my neuropathy. Vibrating burning numbness, barely slept. No way I could handle that for years of treatment. And I cant imagine what those harsher bart abx would do. My only option at this point is to wait for IVIG to kick in and hope that gets the neuropathy to calm down to the point i can consider treating.
Posted 1/25/2022 11:10 PM (GMT 0)
WalkingByFaith,

I will try my best to answer your questions.

1. The Cunningham Panel was made to diagnose PANS/PANDAS (which is really a form of AE) by testing for certain anti-neuronal antibodies. Most university hospitals do not believe that PANS/PANDAS is a real illness. It is a newly discovered condition that has not gained widespread acceptance. University of Cincinnati, for example, does not acknowledge PANS/PANDAS or the validity of the Cunningham Panel. So - no it is not considered a definitive diagnosis for autoimmune encephalitis. But I believe it is a valid diagnosis for AE, as do many neurologists, that often work outside of university hospitals. So you should find one of these neurologists if you want to pursue this route.

2. The most common treatment is high dose IVIG - which is intravenous immunoglobulin. I don't know the exact mechanism by which it works, but I believe infusing the body with large amounts of immunoglobulin hastens the clearance of the antibodies that are attacking the brain. The other main treatment is plasma pheresis, where your blood is filtered out, the plasma and red blood cells are separated, and some of the plasma is replaced by a 'plasma like solution.' This removes some of the auto-antibodies. Some PANS neurologists will only do plasmapheresis if combined with IVIG, since you can induce some immunosuppression with pheresis - which is not good if there is chonic infection (IVIG actually boosts your immune system).

3. I think the treatment is definitely more tolerable than antimicrobial treatment (assuming you herx a lot). IVIG can cause some people to get headaches or nausea and rarely some more serious effects. I found it incredibly tolerable with no issues at all. I think it is a therapy that often takes a matter of months to deliver benefits.

4. That is the million dollar question. I think for some people IVIG can lead to an eventual cure of the autoimmune process, some require continuous therapy maybe life-long, some simply don't respond (perhaps because they give up too early). Dr Frid says that the minimal treatment time is 2 years.

--------

From networking on Bartonella FB groups, it does seem like many of Dr M's cured patients are younger. I think the main factor here might be dissemination - if someone has only been alive for 9 years, the infection might not be as deeply ingrained into collagen and brain tissue. Their bodies are also better at healing from the inflammation from therapy. And they can more easily take a few years off life duties to simply endure treatment.

Dr M offers a gentler protocol now where he combines clarithromycin with allicin and sometimes oil of oregano. So perhaps that could be a fit for you. And maybe eventually try the harder approach. He is all about bringing down the infection load slowly and tolerably and told me 'if i were to design an antibiotic protocol for bartonella it would remove the infection slowly over the course of 3-5 years.'

It seems like the by far the biggest factor in recovery probabilty or minimal treatment pain/duration is infection dissemination/time since being infected. If you've had this for 30+ years, like me your tissues are likely highly infected from skin to bone, with significant biofilm.

Also, if you have developed autoimmune complications - recovery is probably more problematic.

I don't think illness severity is as big of a factor -as much of that relates to the host response. I know a guy who went completely schizo from bart less than a year after a cat scratch and was cured of all symptoms in 9 months.

Post Edited (JaSon2233) : 1/25/2022 4:22:13 PM (GMT-7)

Posted 1/25/2022 11:19 PM (GMT 0)
DCD,

My tendon pain is also everywhere. Poor range of motion, hurts to stretch. Worst in my neck/shoulder/trap area and lower legs. Everywhere is bad tho. A lot fibrotic changes as well which are worrisome. I can walk maybe 150 steps before the pain becomes too much. My skin is also all inflamed and thickening from treating. I got so worried about it that I got full systemic scleroderma evaluation, which luckily came back negative. I get some burning pain when i treat, but no sever neuropathy.
Posted 1/26/2022 12:18 AM (GMT 0)
Hmm, that tendon pain sounds similar. Mine is diagnosed as spondyloarthritis, but clearly something is causing it. All those success stories on RoadBack.org for exactly this type of pain, and you used minocyline and doxy and got no relief? The mino should be able to knock that pain out due to its immunomodulatory effects alone.

What were your encephalitis symptoms? I too was hit w/ monster head stuff. I was sitting at work completely normal in 2013, and then 2 seconds later was completley debilitated. Could barely stand up, head zaps and electric shocks, felt like my body was on a boat, like there was a rubber band around my brain causing massive sensitivty. Strong anxiety and depression then came on. This lasted 3 years pretty much daily until I started gabapentin, but around that time the nerve pain began.

What dosage of IVIG are you on? And what weight if you dont mind sharing?
Posted 1/26/2022 12:51 AM (GMT 0)
The tendon pain actually really exploded while I was on clarith & rifampin. Prior to that treatment I could go on a short jog. I only really had neck pain and plantar fascitis like pain. Dr M says it's a very common response to his therapy. He talks ab it in his lectures and everything.

I am 195 lbs. First IVIG load was 45g 4 days in a row. Then 45g two days per month.
Posted 1/26/2022 1:03 AM (GMT 0)
Jason,

Thank you for that detailed response. I was reading through some of your previous posts earlier today. You have been living in a horror show. Praying for your total healing and relief from pain and suffering.🙏

Interesting what you said about length of illness vs severity of illness. I am over 50. My life altering symptoms started in 2009, but once I learned about Lyme and coinfections, I quickly realized I had symptoms suggestive of bartonella and possibly babesia since infancy or early childhood. If my assessment is correct, then I have had bartonella for over 50 years.

JaSon2233 said...

I know a guy who went completely schizo from bart less than a year after a cat scratch and was cured of all symptoms in 9 months.

Wow!! Glad to hear that guy fully recovered.
Posted 1/26/2022 3:01 AM (GMT 0)

JaSon2233 said...
The tendon pain actually really exploded while I was on clarith & rifampin. Prior to that treatment I could go on a short jog. I only really had neck pain and plantar fascitis like pain. Dr M says it's a very common response to his therapy. He talks ab it in his lectures and everything.

I am 195 lbs. First IVIG load was 45g 4 days in a row. Then 45g two days per month.

Have you tried using tetracycline (the old school tetra) + Diflucan 2 weeks on 2 weeks off as a bart treatment? It’s a Dr SP protocol but Dr K had me try it for a while and it helped - my tolerance to some orals had become so poor that one dose of Rifampin would put me in the ER at the time we tried it. It’s a gentler approach but can be very effective. There’s a few in vitro studies of the azole drugs being very effective against bart. I think the tetra dose was 500mg twice per day (can do up to 3x a day if needed). I imagine you could also do it with Mino or doxy instead (I’d choose Mino if I had to pick since it has superior BBB penetration) if you wanted. I’d only attempt if you feel you have active bart vs. autoimmunity.
Rifampin basically saved my life once my neuro bart was properly diagnosed (my prior Lyme protocols of doxy/zith/tindamax, only kept it in check but didn’t eradicate it somehow) but after 8 weeks any dose would make me incredibly ill. Amazing how quickly tolerances change.
Posted 1/26/2022 3:29 AM (GMT 0)
Yah I am going to try that tetra + fluc soon actually. Interesting, I have the same intolerant response after trying rifampin again after my first brain herx. I tried to restart like 5 months later and i had to stop after 2 days bc it made my brain feel horrible like battery acid dumped on it.
Posted 1/26/2022 11:31 AM (GMT 0)
interesting discussions guys

i agree with the general thrust of the discussion here

-lyme and co being a complex condition with auto-immune elements and immune dysregulation but also infection ( not mutually exclusive )

-bartonella in particular seems highly associated with auto-immune manifestations - even more than borrelia - which should be no surprise since it is an obligate intracellular pathogen capable of long term chronic infection.

- also seems to be correlated with difficult to treat due to symptom flare / super sensitive patients

- no one has all the answers yet on how to sort this conundrum - hence all the trial and error and self experimentation - those that keep going and keep trying are the most likely to get better

- I do support the idea of gradually whittling away at it over time - this seems to be working slowly for me - but despite all the anti-microbials - i can still find bartonella in my red blood cells after around 2years of mainly herbal and 1 year of herbals plus Methylene blue - its a tough beast. in any case like others here i have little choice but to try this approach as typical triple abx treatment has only partial effect and harsher regimes rendered the herx so hard i could not function and seemed to last months - then liver enzymes flared.

- ref the auto-immunity only angle - may well be the case for a small subset - but my feeling is that in most cases - its

infection( along with other aggravating factors)=>inflammation=>immune dysregulation=>autoimmunity

- and infection is still there as part of the picture - but often not seen or attributed or attributed as gone mainly due to the insensitivity of current testing causing doubt - and stimulating people to offer alternative theories (i have no detectable antibodies to bartonella via conventional testing - yet can physically see it in my blood)

- i agree with Jason - the 10-20% of lyme infections becoming chronic lyme or PTLD in the literature clearly refers to all chronic lyme cases - and this is therefore a conglomeration of further sub categories as discussed - anyone claiming or inferring all of those are only auto-immune in nature is out on a limb there as there is so much published evidence that many many chronic Lyme sufferers do in fact get better with antibiotics based regimes. i suspect that this is a misunderstanding and the quote is somehow intended to mean there is merely some form of auto-immune process present in all chronic lyme patients.

- ref the "Osp A has a partial amino acid sequence (165-173) homologous to that of hLFA-1 (human lymphocytic associated antigen-1) that results in activation of T-cells to this autoantigen, ending in autoimmune disease via molecular mimicry" - i think that particular antigen hLFA-1 ) is easily tested for - some lyme testing companies offer is as part of their Lyme workups - Armin for instance - mine was negative even after being ill with confirmed lyme and now bartonella for 5years. Perhaps that is just being used as an example

keep us posted on your trials Jason - i like your thinking - am also considering Fluconazole and Tetracycline
keep fighting the good fight - and welcome you to the club of rational self experimenters smile
Posted 1/26/2022 12:49 PM (GMT 0)
Jason how did you like dr frid? I have been considering seeing her since she focuses on neuro stuff. What is her antibiotic approach like? I see she also uses some of the “newer” treatments like SOT and exosomes which I’m not too interested in. Any insight on her approach and how you like her would be appreciated.
Posted 1/26/2022 1:31 PM (GMT 0)

Garzie said...
interesting discussions guys

- ref the "Osp A has a partial amino acid sequence (165-173) homologous to that of hLFA-1 (human lymphocytic associated antigen-1) that results in activation of T-cells to this autoantigen, ending in autoimmune disease via molecular mimicry" - i think that particular antigen hLFA-1 ) is easily tested for - some lyme testing companies offer is as part of their Lyme workups - Armin for instance - mine was negative even after being ill with confirmed lyme and now bartonella for 5years. Perhaps that is just being used as an example

Right, but you dont have anti-neuronal antibodies creating intense neuropathies or encephalitises like some of us, so that would make sense that you were negative garzie. These anti-bodies against the CNS are real things. Anti-gm1, anti-ganglioside, TS-HDS, anti-gad, tgsr3...these things can turn positive in chronic lyme patients, and when they do you end up w/ some of these severe neuropathies like I have, or encephalitis like JaSon has.

I disagree that Dr Katz was just taking the 15-20% statistic of those w/ chronic lyme and assuming every one of those is autoimmune. It's really not what he said if you read his paper. What he's saying is that many end up w/ chronic lyme and chronic inflammation due to infection, but in some cases you end up w/ a rogue antibody via molecular mimicry, which I think is spot on.
Posted 1/26/2022 2:57 PM (GMT 0)

dcd2103 said...


Right, but you dont have anti-neuronal antibodies creating intense neuropathies or encephalitises like some of us, so that would make sense that you were negative garzie. These anti-bodies against the CNS are real things. Anti-gm1, anti-ganglioside, TS-HDS, anti-gad, tgsr3...these things can turn positive in chronic lyme patients, and when they do you end up w/ some of these severe neuropathies like I have, or encephalitis like JaSon has.

I disagree that Dr Katz was just taking the 15-20% statistic of those w/ chronic lyme and assuming every one of those is autoimmune. It's really not what he said if you read his paper. What he's saying is that many end up w/ chronic lyme and chronic inflammation due to infection, but in some cases you end up w/ a rogue antibody via molecular mimicry, which I think is spot on.

yep- i know - wires crossed i think dcd

i'm not discounting antineuronal antibodies at all - just saying that the hLFA-1 is not always raised in chromic Lyme. it would be too easy to test for if it were.

and like i said above - re the 10-20% i suspect Katz was being taken out of context as he just means that some degree of auto-immunity is likely present in all chronic lyme patients. even healthy people have some levels of auto-antibodies all the time.

was trying to agree with you guys rather than disagree
Posted 1/26/2022 3:13 PM (GMT 0)
No worries Garzie. I just didnt want Dr Katz' work to be misinterpreted so wanted to re-address that.
Posted 1/27/2022 2:11 AM (GMT 0)
DCD,

I forgot to answer ab how my neuro symptoms 'came on.'

In short it was a very slow progression, but then a sudden onset of more severe symptpms.

I had chronic insomnia, migraines, and internal vibrations since around the age of 5.

I was a very good student and excelled in school in highschool, but my migraines got worse.

Then in college I developed memory problems and an ADHD like presentation. Then mild-moderate depression. And very severe hangovers to alchohol that would leave me depressed and cognitively impaired for days.

Those types of symptoms persisted and worsened until age of 30. Then I began having recurrent flu-like symptoms, which I ignored for about a year. Also more severe fatigue and cognitive impairments - like trouble following movie plots and reading books.

Then at age 31 I got struck down. I was sitting in a Panera bread about to do work from my computer and I suddenly became very fatigued, depressed, anxious, and disoriented. I also developed severe exercise intolerance that seemed related to my brain rather than my body. And that state has persisted ever since and flared when on abx and worsened since taking long term claritho rifampin when my movement disorder began (myoclonic jerks, occasional convulsive type stuff, coordination problems, feeling like my brain is dissconnected from my body).
Posted 1/27/2022 2:54 AM (GMT 0)

JaSon2233 said...
DCD,

I forgot to answer ab how my neuro symptoms 'came on.'

In short it was a very slow progression, but then a sudden onset of more severe symptpms.

I had chronic insomnia, migraines, and internal vibrations since around the age of 5.

I was a very good student and excelled in school in highschool, but my migraines got worse.

Then in college I developed memory problems and an ADHD like presentation. Then mild-moderate depression. And very severe hangovers to alchohol that would leave me depressed and cognitively impaired for days.

Those types of symptoms persisted and worsened until age of 30. Then I began having recurrent flu-like symptoms, which I ignored for about a year. Also more severe fatigue and cognitive impairments - like trouble following movie plots and reading books.

Then at age 31 I got struck down. I was sitting in a Panera bread about to do work from my computer and I suddenly became very fatigued, depressed, anxious, and disoriented. I also developed severe exercise intolerance that seemed related to my brain rather than my body. And that state has persisted ever since and flared when on abx and worsened since taking long term claritho rifampin when my movement disorder began (myoclonic jerks, occasional convulsive type stuff, coordination problems, feeling like my brain is dissconnected from my body).

Yea some sort of encephalitis/autoimmune phenomena. Sounds kinda similar to me in how it came on "slowly, then all at once".

I wanted to point out, with dosing on IVIG, 1g/kg/month may not be enough.

I've spent a lot of time around this stuff. When I talk to people who IVIG doesnt make a difference for, they're always on 1g/kg (per month). The people who get materially better almost always seem to be on 1.5-2g/kg. At least for neuropathy. Encephalitis may be the same. I have no idea who did these freaking studies, but the 1g/kg is often inadquate. If you're not making enough progress ask to go up before you decide it doesnt work.

IVIG is dose dependent. The way it works is that once the Fab portion of an antibody binds to an antigen, the complement c1q binds to the Fc receptor of the antibody and activates the complement cascade, which releases various cytokines and can activate the MAC (membrane attack complex).

But if you pump your body full of IgG, the IgGs start binding to each other in Fc-Fc receptor bonds. I think the body does this to "shunt" too much IgG is my guess (if you're making tons of it, there's probably a problem). But once the Fc receptor is bound, the antibody can't be activated. This ONLY happens at high doses. That's why dosage is very important.

This is why IVIG really is quite magnificent. Because the donor IgGs neutralize many of your bad IgGs. At the same time, you're left w/ a ton of donor IgG for immune protection. It's the only treatment that's "immunomodulatory" and supportive at the same time. W/ any other treatment you're going to be suppressing something and having weakened immune function, but w/ IVIG you have strengthened.

Some people are on a dose for immunodeficiency and theyre like "oh well I dont feel it for my autoimmune". It's a completely different animal at that dosage. And for some people 1g/kg isnt enough. The standard starting dose really should be 1.5 imho w/ the option to go up to 2.

There are a few other mechanisms by which IVIG works...it works directly on complement they think and may have some effect on cytokines they dont understand.

Argenyx is finishing up phase 3 trials of Efgartigimod. I've been following this drug for 3 years. It's IVIG on steroids. It blocks the Fc receptor just like IVIG does, except it's much more efficient and specifically designed to do that very quickly. It knocks disease out in a matter of weeks. Problem is, you end up w the immunosuppression. But it's still a game changer, too bad its probably gonna cost $300k/year

Post Edited (dcd2103) : 1/26/2022 8:02:33 PM (GMT-7)

Posted 1/27/2022 3:17 AM (GMT 0)
darn, yah Dr Frid told me that she uses a minimun of 1.5 and prefers 2. I didn't even do the math on my dosing. I will probably stay with this dose for a few months and then ask my neuro to increase. Will probably work better for insurance coverage of higher dose if i try 1 for a period of time. Thank you for telling me this.
Posted 1/27/2022 3:24 AM (GMT 0)
Yup gotta give that dosage a fair shake first, dems da rules. Drs don’t like when you haven’t given it a shot and are already asking for more.

So wait til you’ve been on 6m at least to ask. And DO NOT say it doesn’t work. Just say it’s helping but wears off before the next infusion or doesn’t get you 100% there.

If you say it doesn’t work most drs will be glad to pull it, rather than bump to a proper dosage

Post Edited (dcd2103) : 1/26/2022 8:27:10 PM (GMT-7)

Posted 2/11/2022 3:06 PM (GMT 0)
FYI Dr. K has just started his presentation for those who registered.
Posted 2/11/2022 10:24 PM (GMT 0)
darn, missed it. Looks like all lectures get posted on feb 13. Still have to pay to access, which I did.
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