New Diagnosis and New Docs: Autoimmune Encephalitis, SFN and a Neuroimmunologist

[Hoosierfans]

Any update? Have you started treatment yet?

Hey — I was thinking of you this week! How are YOU doing? Any update on your treatment?

No I haven’t started treatment yet. I have an appt July 13 with the neuroimmunologist and in late August with a second immunologist.

 

[lenora]

Hello @Hoosierfans.....I think your last sentence rather sums up the entire process. We accumulate so many different viruses over our lifetimes, it will take a type of health magician to sort out one cause from the other.

I've been doing some reading on my own. Now viral encephalitis, which can be caused by Herpes1 (cold sores and probably chicken pox), and Herpes 11 (genital herpes) can lead to autoimmune encephalitis. So then we ask the question: Are there other very common viruses that can do the same? For that answer, I'll have to leave the questions in the capable hands of many who have done studies in research over the years. Their help, and anything they have to add, would be deeply appreciated.

I would like to add that I've had 4 separate rounds of Shingles (caused by the chicken pox virus lodged in the spinal cord). The last 3 left me bedridden for about a year...and was one of the worst and most troublesome problems I've ever been through.

There is a new 95% effective Shingles vaccine (given twice with a period in between) that I would encourage all at risk to obtain. Pharmacies carry it and judging by the lines we waited in both times, it's in great demand. Call ahead to make certain they have the serum, and the age it's given at which I believe is 50.

Each attack was worse than the one before and could drive you easily nuts with both itching, emotions and then horrible pain. Mine were before the antivirals were in wide use and no one really knew what to do with me.

The only help was from my neurologist of many years, who told me upfront that "I would be sicker than I had been in my entire life." He knew me and my rather complex surgeries, illnesses, etc. Boy, was he right on target.

If I had received medical help during the first of the three attacks, I would have been much better off....but my husband was always away, my Dr. called when he could see me within 10 minutes or so, but I was too weak to drive, taxis certainly couldn't be counted on and Uber wasn't around. Also, my daughter here couldn't possibly have arrived in time to take me up....besides, I simply couldn't get dressed. And yes, I have appeared in my robe in doctors' offices before today.

To add this up (and I know I go on...some people like it, others don't). I strongly suspect that my attacks of shingles may have led to my autoimmune encephalitis, and I probably had more attacks of it before reaching the state I finally did. The epilepsy frequently comes as some people age. So I'm not even adding that in here.

Please look into getting the new shingles vaccine....you don't want this virus, anti-virals or not. I never thought I'd recover from it, but while I couldn't walk for any length of time, I'm taking care of myself, walk around the house frequently and try to exercise as much as possible. Have to keep that body going! Of course now I have a whole other host of problems. But remember that I'm one of the oldest on here, so please don't become discouraged. Just do what you can to protect yourself.

Also, just for information's sake....do you reseachers think the chickenpox vaccine (& presumably boosters) are enough to protect our children, and for how long? It makes sense that this virus can travel from the spinal cord to the brain, doesn't it? Thanks for your help. Yours, Lenora.

 

[godlovesatrier]

Yep shingrex is great, but in the UK just so people are aware it costs £500+ and you can only get it in London clinics due to a shortage. But even if you could get it at a few satellite clinics which I have contacted there appear to only be one or two clinics that are allowed to vaccinate with it. Again those with money and the ability to afford travel accommodation etc get it easier, not surprising in the country we currently live in. But for anyone in the UK that wanted to get it you might find this info useful.

On the plus side shingrex stats are a bit thin on the ground but one source said it might give you immunity for 10 years. I guess 5 might be more reasonable. That's impressive tho! Most places also do the old live vzv vaccine, that's the one you don't want as it only lasts about 12 to 24 months.

 

[lenora]

Thanks, @godlovesatrier. It's helpful to know what's going on in other countries.

As COVID becomes less of a threat, I do hope that shingrex will be available for you...at no cost. I know it was hard to access the serum in the very beginning for us. You're right....you want the latest two dose vaccine, not the one prior to it. We're told it lasts for 10 years in the U.S., but anything can change at anytime. I had the older vaccine rather than have shingles again, but when the new one was available I checked with my neuro and was told to go for it. It's covered by insurance in this country. Thankfully. Yours, Lenora.

 

[Learner1]

I think if someone has clinical symptoms of inflammation, of dysautonomia, or a set of symptoms that cannot be explained, especially if they also have a positive ANA, or an existing autoimmune diagnosis like Hashimoto's Disease, then they should be given full autoimmune testing with not only the basic panels but also tests for more obscure autoantibodies. I also think that people with a cancer diagnosis or a new autoimmune disease diagnosis should also be checked for paraneoplastic autoantibodies.

This is great advice!! Also, anyone who's had a herpes family infection, chlamydia pneunoniae, Lyme and co-infections who has suspicious symptoms should look into it.

@lenora Yes, many infections can trigger autoimmunity. Though Epstein Barr is notorious for doing so, other herpes infections, as well as the other ones I mentioned and many others can also trigger autoimmunity. They don't have to be just viral, they could be bacterial or fungal as well.

I completely understand what you mean and it is a very tricky situation re: insurance authorization for IVIG (especially high-dose IVIG for autoimmunity). You have to be very strategic, which is a sad state of affairs, but it is the reality.

In my case, it was the two positive Mayo autoantibodies that led my main doctor to pursue IVIG so I already had the Mayo results before we started (in addition to the abnormal Cell Trend tests, the positive ANA titer, the abnormal EMG, 4-5 abnormal PFT (pulmonary) tests, abnormal TTT's & QSART, tons of abnormal blood-work, a long-standing Hashimoto's diagnosis, MCAS & anaphylaxis, etc). I had other random tests that were "normal" and did not work in my favor but my doctor did not include those in the battle for IVIG.

It's also good to be checked for immunodeficiency. I was able to use that as a justification for IVIG, which is much easier than autoimmune, and then my doctor and I had to figure out how to get enough of the IVIG into me. Generally there's a long list of criteria that insurance companies have for people to qualify for IVIG, so understanding their policy and seeing what you can qualify for may be helpful.

In January of 2020 I had my second attack. Again the Mayo panel was done and proved that I did have AE. Now my problem is in remembering the before, during and after effects of that time. I was out of the hospital in about 8 days. I wasn't aware that I'd had attacks of AE on two different occasions and somewhere in there the seizures were also diagnosed. Like I've said before, my neurologist has told me that I'll have to be on keppra for the remainder of my life. I'm not even debating that b/c I know it's to prevent even more memory loss and I don't want that. The psychiatrist was absolutely necessary, so don't look at it as punishment or not being believed. They're merely assessing the damage.

Just curious, why did they not try IVIG and then Rituximab or Bortezimub with you, which would give you hope of getting rid of your bad antibodies?

I have really severe allergies and they've been getting worse year by year. Now after my AE attacks, they're never-ending. Mast cell activation? At my age, they should be lessening instead of getting worse. I'll soon be living in an RV in the desert, too.

Definitely look into mass cell activation. Two good websites are:

www.mastattack.com
www.mastcellmaster.com

What was your illness onset or trigger? Was it viral trigger? How do you think you developed auotimmune encephalitis? Can viruses induce autoimmune encephalitis? I suppose that's the big mystery as to why so many CFS patients have autoantibodies of different types (probably prolonged immune disregulation/dysfunction leading to autoimmunity). But still thought I'd ask the question incase you had an answer or read some literature about it.

Yes, viruses definitely trigger autoimmunity. I've attached a couple of articles about it. It's luck of the draw which antibodies you end up with. If you're lucky, you get a name brand autoimmune disease that everyone knows how to deal with. If you're like most of us though, you end up with some nasty conglomeration of oddball antibodies that are hard to find, and then once you find them, doctors hem and haw because they're not used to treating them, so you suffer unless if you luck into a good doctor or are persistent in pursuing treatment.

 

[lenora]

Hello @Learner1 & @Gingergrrl.....Thanks for your timely responses.

I believe that one of the reasons IVIG treatments weren't used was because of my age, my general health, the number of diagnoses I have (including cardiac), the surgeries during these hospitalizations; but will have to look into whether or not Medicare and supplemental insurance would cover the treatment anyway.

My main neurologist is rather on top of my conditions, has been interested in CFS/ME for years and years, so is quite knowledgeable and not willing to turn his back. He fights for his patients. However, I'm definitely going to bring IVIG treatment up during our next appointment, if not before.

I would encourage any of you who are young and reasonably healthy to go ahead now and take advantage of what you can. Have your doctors write supporting letters, and then more letters if necessary. Remember that your conversations with insurance cos. are recorded....so use that to your benefit whenever possible.

Mark the names of the person spoken to, the subject matter and the time on a large calendar....great for later reference. I was denied a life saving surgery at one point many years ago. I said, "That I knew the conversation was being recorded b/c it had been announced while I waited on the phone." Yes, the person did deny me the surgery, but within minutes after I told her that I had stated it one the phone (this before computers), I received a call back telling me that I could go to any specialist I wanted and it would be covered. So use your wiles and may you have the best of fortune when doing so.

Again, thanks Learner & Gingergrrl....and I'll be sure to check into IVIG. By the way, I'll definitely check with other neurologists if I'm admitted to the hospital in the meantime. Hope not...want to avoid that again. Yours, Lenora.

 

[crypt0cu1t]

Hey — I was thinking of you this week! How are YOU doing? Any update on your treatment?

No I haven’t started treatment yet. I have an appt July 13 with the neuroimmunologist and in late August with a second immunologist.

I'm honestly doing terrible. Insurance has kept me in limbo and I've continued to regress to being mostly housebound unfortunately.

I hope you can get something soon!

 

[Hoosierfans]

I'm honestly doing terrible. Insurance has kept me in limbo and I've continued to regress to being mostly housebound unfortunately.

I hope you can get something soon!

Oh my gosh no! I thought you were all set to go with SCIG? What’s the hold up?

 

[crypt0cu1t]

Oh my gosh no! I thought you were all set to go with SCIG? What’s the hold up?

My insurance keeps denying it and I'm losing hope honestly...

 

[Learner1]

My insurance keeps denying it and I'm losing hope honestly...

Your doctor should be able to have a "peer to peer" conversation with the medical director at your insurance company. If you have a case manager, that person should be able to tell you the process for your doctor to request one and for it to happen. I've had to come to this twice in my journey, and both times after 5-minute conversation with my doctor, 5 minutes later, the treatment was approved. But, your doctor needs to be willing to fight for you, which, given your situation, it would seem likely they would do.

I believe that one of the reasons IVIG treatments weren't used was because of my age, my general health, the number of diagnoses I have (including cardiac), the surgeries during these hospitalizations; but will have to look into whether or not Medicare and supplemental insurance would cover the treatment anyway.

Medicare covers it as long as you have a diagnosis that supports it. Every insurance has a policy on it. It is wise to figure out what your policy rules are and then make sure they're followed which will help you get it covered.

My main neurologist is rather on top of my conditions, has been interested in CFS/ME for years and years, so is quite knowledgeable and not willing to turn his back. He fights for his patients. However, I'm definitely going to bring IVIG treatment up

Given what you've said, you don't have ME/CFS. What you have is autoimmune encephalitis and a whole bunch of other diagnoses. The thing to realize is that ME/CFS gets you nowhere no matter if anybody's interested or not. A diagnosis of autoimmune encephalitis qualifies you for treatment. I believe there's some sort of autoimmune encephalitis foundation, which likely has volunteers who can help you walk through the process.

 

[lenora]

Hello @Learner1 .....Trust me, I do have and have been diagnosed repeatedly with ME/CFS/FM in addition to a mass of other illnesses (probably the causes of the ME/CFS) to begin with.

It's good to know about Medicare & supplemental insurance covering the cost but I do have a complex medical history. Right now, I'm afraid to move forward in any given direction. I should be past that by the fall when I have my next appointment with my neurologist. I'll bring it up with him then. There are periods when we just need a "time out"..... I've reached one.

Next week I have surgery again, even though it will be done in an office (set up like a hospital) I don't know how much will be involved and whether or not I'll have to have even more surgeries. I am definitely looking into the IVIG therapy after that...no question about it. I have to build my body back up again....even if IVIG is a positive thing. I've been down this path before, many times, and know that I have to be emotionally and physically ready to undertake whatever is being offered. I'm now seeing a masseuse/physical therapist to help rebuild my body as much as possible.

I promise you the day will come when I do go for IVIG. Thanks for your input, especially about Medicare. I'll contact the Autoimmune Encephalitis Foundation. If I can rid myself of one problem, I'm on board. I'm not prepared to lose even more of my memory bank. Your interest is appreciated. How are you doing yourself? L.

 

[Gingergrrl]

Yes, viruses definitely trigger autoimmunity. I've attached a couple of articles about it.

100% agree with you re: viruses triggering autoimmunity. I was curious which articles you were referring to and I think I missed them

It's luck of the draw which antibodies you end up with. If you're lucky, you get a name brand autoimmune disease that everyone knows how to deal with. If you're like most of us though, you end up with some nasty conglomeration of oddball antibodies

I bolded the last part of your quote b/c it exactly pertains to me (the nasty conglomeration of oddball antibodies )!

Again, thanks Learner & Gingergrrl....and I'll be sure to check into IVIG. By the way, I'll definitely check with other neurologists if I'm admitted to the hospital in the meantime. Hope not...want to avoid that again.

I wasn't suggesting IVIG specifically to you (and I don't know enough about your specific medical situation). But from what I do know, I do think it is worth asking your neurologist about it.

I would encourage any of you who are young and reasonably healthy to go ahead now and take advantage of what you can. Have your doctors write supporting letters, and then more letters if necessary. Remember that your conversations with insurance cos. are recorded....so use that to your benefit whenever possible.

IVIG is not just aimed at people who are young and healthy (like you wrote above) and I have seen IVIG help people who were incredibly ill (both acute situations like Guillain Barre and people who were ill for decades). But it can be contra-indicated & dangerous in certain situations (like someone w/history of blood clots, stroke or heart attack, etc). I also agree with everything you wrote re: having your doctor advocate w/the insurance company and remembering that all conversations are being recorded. IVIG is a challenging treatment medically but I think getting the insurance approval is actually even more challenging.

I'm honestly doing terrible. Insurance has kept me in limbo and I've continued to regress to being mostly housebound unfortunately.

I am so sorry to hear this @crypt0cu1t and thought that you had insurance approval. Are they saying that it is "not medically necessary" as the excuse for the denial or another reason? Has your doctor filed an appeal?

 

[crypt0cu1t]

I am so sorry to hear this @crypt0cu1t and thought that you had insurance approval. Are they saying that it is "not medically necessary" as the excuse for the denial or another reason? Has your doctor filed an appeal?

We originally thought that the treatment was approved, but they turned around and denied it saying it isn't medically necessary. We are in the middle of an appeal currently! I'm hoping this time it works.

 

[Gingergrrl]

We originally thought that the treatment was approved, but they turned around and denied it saying it isn't medically necessary. We are in the middle of an appeal currently! I'm hoping this time it works.

It sounds like you are doing everything that you can and just have to wait for the results of the appeal. Did they tell you an approximate date of when they will let you know? If it is taking forever, you (or your doctor) can call them to check the status.

 

[crypt0cu1t]

It sounds like you are doing everything that you can and just have to wait for the results of the appeal. Did they tell you an approximate date of when they will let you know? If it is taking forever, you (or your doctor) can call them to check the status.

I've actually been harassing them for 2 weeks every single day haha!

 

[Hoosierfans]

@crypt0cu1t I will be saying a prayer everyday that the approval finally comes through. Is a “peer to peer review” as @Learner1 mentioned part of the appeal process or does that happen after an absolute final denial?

Also, a general question for everyone here. I’m going to try my best to educate myself through the thick brain fog and dizziness over the next month about what my options might be when I see the neuroimmunologist. Obviously IVIG. Plasmapheresis is another. I’ve failed steroids so that is out (unless you guys tell me otherwise — I’ve tried Medrol and Prednisone). I’ve read one or two case studies where they tried certain medications — not Rituximab but others — that look like they are generally used in autoimmune disorders like lupus, RA etc.

Can anyone tell me about the wisdom of using such meds? I just would like to know all the options I have if IVIG isn’t approved or if it’s going to take awhile...and want to be prepared to discuss them with my doc.

 

[Gingergrrl]

@crypt0cu1t I will be saying a prayer everyday that the approval finally comes through. Is a “peer to peer review” as @Learner1 mentioned part of the appeal process or does that happen after an absolute final denial?

It can vary especially between private insurance, ACA Plan, Medicare, etc. In general though w/private insurance, your doctor would order the treatment, insurance will say that it requires prior authorization, your doctor will complete the Prior Auth, it will be denied as "not medically necessary", your doctor will file the first level of Appeal, and then it goes to the "doctor to doctor consult" also known as "peer to peer review" in which your doctor speaks to a doctor with the insurance company. At that point they may approve it, they may ask for additional diagnosis codes, documents, or testing, or they may deny it and you move on to the 2nd level of Appeal.

Also, a general question for everyone here. I’m going to try my best to educate myself through the thick brain fog and dizziness over the next month about what my options might be when I see the neuroimmunologist. Obviously IVIG. Plasmapheresis is another. I’ve failed steroids so that is out (unless you guys tell me otherwise — I’ve tried Medrol and Prednisone). I’ve read one or two case studies where they tried certain medications — not Rituximab but others — that look like they are generally used in autoimmune disorders like lupus, RA etc.

In your case, I would confirm with the neuroimmunologist if they feel that autoimmune encephalitis is your diagnosis. They may want additional testing, or to consult with your other doctors, or to review all your labs, etc. Once they establish your diagnosis, I would discuss all of the treatment options (and I would also check w/the Autoimmune Encephalitis Foundation). I did not have AE and did not review all of the potential treatments in detail (so @crypt0cu1t could tell you much better than I could). But in general, all of the things that you mentioned above could be on the table: steroids, IVIG, plasmapheresis, Rituximab, other autoimmune treatments/infusions, etc.

 

[Learner1]

@Gingergrrl Great explanation!😃

@Hoosierfans I would expect the doctors you'll be seeing know how to talk to insurance companies, because this is what they do.

Beyond the above mentioned treatments, there is bortezimub, which helped sk2018 and then there are all the immunosuppressants. These are not a good idea if:

• You have ongoing infections
• You get any new infections, like a family member bringing a virus home or food poisoning, injury, etc.
• You have any germ of cancer anywhere in your body

For the first two, suppressing your immune system when you have an infection will allow the infection to proliferate, which could make symptoms worse, and could be quite dangerous, depending on the bug - people have died of sepsis unaware that they had an infection because the immunosuppressant did such a fantastic job of suppressing their immune system so they didn't notice it until they were almost dead.

As for the third one, in my journey in the cancer world, I met several people who ended up with lymphoma or leukemia because their immune system was suppressed and couldn't fight off the cancer. We have mutated cells being created all the time and our body gets rid of them usually, but if our immune system isn't allowed to work, then we can't get rid of the bad cells and we have cancer, which can and does kill people on a regular basis.

So, as far as I know, IVIG and B cell depletion of some sort, which gets rid of the antibodies causing your issues, whether it's mechanical as in plasmaphrases or biochemical as in Rituximab or Bortezimub, they seem to be the main options.

The other factor that can be helpful and getting IVIG approved is if one also has immunodeficiency, which is a much easier justification if you don't have one of the name brand autoimmune diseases and just a weird combination of lesser known antibodies.

 

[Learner1]

@Gingergrrl I sheepishly confess that I forgot to attach the articles I said I would about infections triggering autoimmunity.

See the attached and here:

https://www.ncbi.nlm.nih.gov/books/NBK459437/

https://pubmed.ncbi.nlm.nih.gov/19076824/

https://www.bjmp.org/content/bacterial-infections-and-pathogenesis-autoimmune-conditions

https://jlb.onlinelibrary.wiley.com/doi/pdf/10.1189/jlb.0709517

https://onlinelibrary.wiley.com/doi/full/10.1111/cei.13239

And thank you so much for all of your good information. And you're not the only one with a nasty conglomeration of antibodies - It applies to a lot of us...

 

[Learner1]

Trust me, I do have and have been diagnosed repeatedly with ME/CFS/FM in addition to a mass of other illnesses (probably the causes of the ME/CFS) to begin with.

I don't doubt your diagnosis. The problem is is insurance doesn't pay for treatment for ME/CFS, so it's a lot more productive to use any other ICD-10 code to qualify for treatment. Many of us have 10, 15, 20 or more ICD-10 codes that come in handy when we want to use them for treatment, and running tests...😉

I promise you the day will come when I do go for IVIG. Thanks for your input, especially about Medicare. I'll contact the Autoimmune Encephalitis Foundation. If I can rid myself of one problem, I'm on board. I'm not prepared to lose even more of my memory bank. Your interest is appreciated. How are you doing yourself? L

Glad to hear you're pursuing it. I think the Autoimmune Encephalitis foundation could be very helpful to you. I am ok, thank you.😃