Extremely ill after 3 months cancer treatment. Bedbound again.

[CallieAndToby]

So I've had an ME diagnosis for at least 15 years. I became full blown chronically ill when I was only a teenager and I can't pinpoint anything that caused this, over the years I just got worse and worse. I ended up bedbound in my early 20's and spent most of my 20's resting, pacing, sleeping when I could and I went all over the country seeking help but finally got well enough to: drive, play music again, freelance photography, sell things online, swim, things were so much better.

THEN I was sent to hematologist oncologist because of history of high platelets. I tested JAK2 positive and after a bone marrow biopsy all during Covid, I was diagnosed with a myeloproliferative neoplasm which is chronic bone marrow/blood cancer. I knew it was contributing to me being ill because MPN's cause constant output of cytokines, my pro inflammatory cytokines are off the charts. I saw doctor after doctor, cancer centers, and I just wanted help with the inflammation aspect as I believed it was making me so fatigued etc. I was eventually put on a cancer immunosuppressant and no risks were discussed with me I was only told positive things and didn't know what I was getting into.

In that 3 months I took this medication in 2020 all I did was sleep, I couldn't stay awake and I'm normally a big time insomniac. People started commenting how terrible I looked and my vitals were getting worse i.e. lower blood pressure, higher HR. Finally I'm taken off of this horrible medication which I will not name because, it depleted my WBC's and soon after I started having the following symptoms: inability to be upright without going syncope, seizures, myoclonic movements, movement disorder, blacking out while supine, insomnia, worsening of fatigue and most ME type symptoms, very high testosterone showing up on labs.

Long story short I no longer had a doctor either, I ended up in the ER 6 times with seizures and they would give me fluids and send me home, it's been over a year and I'm now completely bedbound, I can't even sit up for a few minutes without going syncope, I've tried every dysautonomia medication available and it doesn't help my syncope at all and the side effects are unbearable, I almost never sleep, I'm the most fatigued I've ever been in my life, the scariest part is I am continuing to decline and I only got a few years of a decent life.

My family and I uprooted our entire lives to move to a big city and nobody is listening, nobody is trying to help, they keep sending me to POTS doctors but I've done the autonomic testing twice now and tried all the meds, no answers for seizures, every day I wish I hadn't taken this medicine. From my research it is known for causing infections and one government article said that is sort of reignites "silent infections" but still no lumbar puncture, nothing.

This is a long post I know but has anybody gotten extremely ill after immunosuppressant therapy? Does anybody think my theory on an active infection could be a possibility? Intracranial pressure? Encephalitis? (I have a history of encephalitis also) Any thoughts on this matter are greatly appreciated. I have seen 4 neurologists already and they keep treating symptoms like prescribing more sleeping pills, dysautonomia meds, etc. instead of investigating a root cause.

 

[vision blue]

It will take a while. But let me start with a couple of basic questions.

Which immunosupressent? keep in mind though, no matter what you read about it re-igniting infections, that's going to be a potential risk for any immunsupressent. but once you are off it, your immune system should come back online. So just that wouldn't be the cause

Were you able to determine when you got the myeloproliferative neoplasm ? Was that the cause of your illness already in teenage years?

 

[CallieAndToby]

It will take a while. But let me start with a couple of basic questions.

Which immunosupressent? keep in mind though, no matter what you read about it re-igniting infections, that's going to be a potential risk for any immunsupressent. but once you are off it, your immune system should come back online. So just that wouldn't be the cause

Were you able to determine when you got the myeloproliferative neoplasm ? Was that the cause of your illness already in teenage years?

Well there are several people in my family with CVIDS / hypogammaglobulinemia and they have put in my chart "weak immune system" or "compromised immune system" because before this medication I get infections all the time. I've been dealing with a sinus infection the past 4 months. I'm worried about a CNS infection because I'm declining every week and why the seizures and all the neurological stuff post immunosuppression?

I don't know at all when the MPN developed. I have thought about it but I just have no clue what came first and still so many unanswered questions. My first symptoms were bladder pain and frequency when I was a kid and now my bladder hurts all the time, it keeps me from resting and sleeping, I can use the bathroom and never feel empty, also extreme bowel issues extreme constipation. In high school my first symptoms were chronic pain. I got mono in high school as well and I went to the urgent care they diagnosed me and told me I'd feel better in 2 weeks and I just never got better. Saline iv infusions are very helpful but no RX presently.

 

[Pyrrhus]

This is a long post I know but has anybody gotten extremely ill after immunosuppressant therapy?

Unfortunately, yes. You may find this thread interesting:

Anti-inflammatories may reduce symptoms in the short-term, but may not in the long-term
https://forums.phoenixrising.me/thr...hort-term-but-may-not-in-the-long-term.80492/

Does anybody think my theory on an active infection could be a possibility?

I think there would be many people who might agree with you.

Since you mention a myeloproliferative neoplasm, you might want to ask your doctor to test for parvovirus. Parvovirus is a virus that can infect the bone marrow, although I have not heard of it infecting the brain. (There are plenty of other viruses that target the brain.)

So sorry to hear about your terrible experience, I hope you find some improvement in the new year!

 

[CallieAndToby]

Unfortunately, yes. You may find this thread interesting:

Anti-inflammatories may reduce symptoms in the short-term, but may not in the long-term
https://forums.phoenixrising.me/thr...hort-term-but-may-not-in-the-long-term.80492/



I think there would be many people who might agree with you.

Since you mention a myeloproliferative neoplasm, you might want to ask your doctor to test for parvovirus. Parvovirus is a virus that can infect the bone marrow, although I have not heard of it infecting the brain. (There are plenty of other viruses that target the brain.)

So sorry to hear about your terrible experience, I hope you find some improvement in the new year!

Thank you so much for the link and info and response. My new oncologist said it could be an infection but said "they're hard to find"........ Great but can someone try? The medication I was on was far more serious than Prednisone and it's meant to be long term to control certain levels that can become dangerous but it had to be stopped once my white blood cell count was non existent and how sick I was getting. Anyhow, I will approach my current Neuro with this information. As a side note I've been on steroids in the past for short periods of time and they made me insanely sick, extreme fatigue, sweating, on the ground writhing; I was given Prednisone for the sinus infection and I refused to take it because of past experiences. Edit addition: IVIG has helped me in the past without any side effects but I only got a 6th month trial and stopped by insurance bc of expense.

 

[vision blue]

If they/you can prove you have primary immunodeficiency- and sounds like you nay - , then insurance will keep paying for your IG treatment.

 

[Zebra]

Hi, @CallieAndToby

First of all, I am deeply sorry to hear about all that has happened to you. Getting sick, on top of being sick, is a real punch in the gut.

With all of your seizure activity, which I'm assuming was confirmed by EEG, how on earth has no health care provider screened you for the types of autoimmune encephalitis that most commonly cause seizures? I am so outraged on your behalf!

This may be something you, or a good family member or friend, simply must insist on.

As you are now in a metropolitan area, I would search for a neuro-immunologist. They are usually associated with MS Centers, so you have to dig a little deeper to ensure you are seeing someone familiar with immune-mediated diseases of the CNS.

The "gold standard" is simultaneous testing of the blood and cerebral spinal fluid on the same day. Additionally, the CFS could be checked for viruses at the same time.

I wish you the best of luck. Please us posted.

P.S. I am including a link to a website that is intended to serve as a guide to ER docs/hospitalists on how to approach a case of suspected encephalitis. You may consider looking over to see which ones match your illness. https://emcrit.org/ibcc/ae/

 

[lenora]

Hi @CallieAndToby .....I'm sure there is a big division in our ages, but your symptoms sound a lot like some I had about 2 yrs. or so ago.

I've been diagnosed with epilepsy, two different types of seizures and will be on meds for the rest of my live. A few months later, I t was diagnosed as autoimmune encepahlitis. Again, this has to be confirmed by the Mayo Panel and I've received two positives from them in the same time span.

The AE put me in a Coma for two days and it was not much fun to come out of it. LIke it or not, a psychiatrist is involved to help figure out the part of the brain that has been affected. You can't flunk the test of questions asked, but be truthful and you'll be given the help you need. True, Mri's, Can Scans and a few other tests results are also taken into consideration, but as of now, this is the gold standard for determining how much damage has been done and the best way to help you regain your losses.
I was fortunate in my case, losses were limited, but there is no question that i did have some problems. I've been working on them ever since.....so I hope you don't have AE.

Since seizures cause brain damage, it's important that you follow your neurologist's advice when it comes to meds. I take it seriously.

I wish you well....plenty of help and hope. Take good care. Yours Lenora.

 

[CallieAndToby]

Hi, @CallieAndToby

First of all, I am deeply sorry to hear about all that has happened to you. Getting sick, on top of being sick, is a real punch in the gut.

With all of your seizure activity, which I'm assuming was confirmed by EEG, how on earth has no health care provider screened you for the types of autoimmune encephalitis that most commonly cause seizures? I am so outraged on your behalf!

This may be something you, or a good family member or friend, simply must insist on.

As you are now in a metropolitan area, I would search for a neuro-immunologist. They are usually associated with MS Centers, so you have to dig a little deeper to ensure you are seeing someone familiar with immune-mediated diseases of the CNS.

The "gold standard" is simultaneous testing of the blood and cerebral spinal fluid on the same day. Additionally, the CFS could be checked for viruses at the same time.

I wish you the best of luck. Please us posted.

P.S. I am including a link to a website that is intended to serve as a guide to ER docs/hospitalists on how to approach a case of suspected encephalitis. You may consider looking over to see which ones match your illness. https://emcrit.org/ibcc/ae/

Thanks everyone for the responses for some reason I didn't get an email so didn't know I'd received them. Thank you for guiding me on what doctor to search for I have looked up neuro immunologists but they always say MS but you're right about digging deeper. I've seen four neurologists and I've described seizure activity as well as my caretaker is in the medical field and has described it and they keep referring me to places for POTS. It's pretty crazy. I do have a history of encephalitis and I also have a very abnormal PET brain scan that was done in my 20's and the current neurologist told me he could read PET scans of the brain and he's had the disc for 2 months and hasn't said a word about it nobody ever knows what to say. The only lead I have is the radiologist who saw it and paged my doctor and said verbatim, "What is wrong with your patient? Her scan looks like an 85 year old with severe Alzheimer's". Several weeks ago I did an in home EEG study so I don't have the results of that back. I'm also not sleeping much at all since this whole debacle and it just keeps getting worst.

 

[CallieAndToby]

Hi @CallieAndToby .....I'm sure there is a big division in our ages, but your symptoms sound a lot like some I had about 2 yrs. or so ago.

I've been diagnosed with epilepsy, two different types of seizures and will be on meds for the rest of my live. A few months later, I t was diagnosed as autoimmune encepahlitis. Again, this has to be confirmed by the Mayo Panel and I've received two positives from them in the same time span.

The AE put me in a Coma for two days and it was not much fun to come out of it. LIke it or not, a psychiatrist is involved to help figure out the part of the brain that has been affected. You can't flunk the test of questions asked, but be truthful and you'll be given the help you need. True, Mri's, Can Scans and a few other tests results are also taken into consideration, but as of now, this is the gold standard for determining how much damage has been done and the best way to help you regain your losses.
I was fortunate in my case, losses were limited, but there is no question that i did have some problems. I've been working on them ever since.....so I hope you don't have AE.

Since seizures cause brain damage, it's important that you follow your neurologist's advice when it comes to meds. I take it seriously.

I wish you well....plenty of help and hope. Take good care. Yours Lenora.

Thanks for the information. Though I'm very sorry you had to go through that!

 

[lenora]

Hello @CallieAndToby.....It occurred to me that there is far more information concerning Autoimmune Encephalitis than there was even 3 years ago. Shocking, really.

It occurred to me that I read at one point that encephalitis can lead to autoimmune encephalitis. I just tried to find it again, but couldn't. So I'll turn to our man, @Pyrrhus, and hope he can shed some light on this matter.

Point being: You may be able to get a lumbar puncture if the magical words "autoimmune encephalitis" are used (AE). I had two tests fairly recently and they both showed a positive on the Mayo Panel for AE. (They test for a number of things). By the way I'm no great fan of the Mayo, but they do seem to be making an effort with their neurological status at least at this time. There are other clinics I would visit first....but things change.

I've had great fortune in the doctors I've found...diagnoses made and so many other things. I realize that not everyone has been even close to that fortunate, so I do understand.

As I age I find it's more and more difficult for me to find an "expert." All of my doctors have either retired, died or are horribly ill themselves. Some I continue to see....as they have certain patients they want to carry on their patient load as long as possible. Really, in the end one wants a doctor who has empathy, will go the extra mile for you, listens to you and your family and while they may not be in the top tier, they're out there and have as much knowledge as many others. Things improve every year or so, just like our research has done so. Good luck, as I wish that for all young people. It's not much fun. Yours Lenora.

 

[Pyrrhus]

It occurred to me that I read at one point that encephalitis can lead to autoimmune encephalitis. I just tried to find it again, but couldn't. So I'll turn to our man, @Pyrrhus, and hope he can shed some light on this matter.

Yes, chronic inflammation might over time lead to autoimmunity.
As a result, non-autoimmune encephalitis or neuroinflammation might over time turn into auto-immune encephalitis.

For more information:
https://forums.phoenixrising.me/threads/how-viruses-cause-autoimmunity.86598/

Hope this helps.

 

[lenora]

Thanks, @Pyrrhus. You're always so helpful, and it's appreciated.

Speaking of which.....do you know the name of the young man who diagnosed his own CCI? I seem to recall that it was Jeff..........(White perhaps?) I know he has his own consulting business, but beyond that, I'm rather lost. I just thought you may know. If not, I'll keep checking here and there. I know he diagnosed himself before Jen Brea's was diagnosed.....and assume that they both have a list of clinics, surgeons, etc. I can't even check FB because I'm no longer a member of it.

Like so many things though, I understand that some doctors are recommending that exercise be used to strengthen the neck. Interesting. Thanks, Pyrrhus & a healthy 2022. Yours, Lenora.

 

[lenora]

Hi @Pyrrhus.....I just wanted to let you know that Jeff White is now at the Chiari Center in NY. He assists Dr. Bolognese in making diagnoses....definitely much needed for the people who flock there.

Also, and I know nothing about this, but apparent Jen Brea is letting herself get well as we speak. I'm sure she'll be back in touch when able.

I didn't want you to go to any extra trouble....another member filled me in on this info. Thanks to
them, also. Yours, Lenora.

 

[CallieAndToby]

Thank you for the responses. I've been too sick to sign on here.

 

[lenora]

I really hope you'll feel better soon. Just give in to being ill for a time....your body may need it. Yours, Lenora.

 

[rwaters]

This is such a heart-breaking news. Hoping for a speedy recovery.

 

[vision blue]

. Its so horrible. Dont give up! Hope things turn around for you very soon.

If i had energy i would look up if the underlying JAK caused disorder can cause in and if itself brain changes like on your scans. If not. As you say look for active infections or ai encephalitis
But also hoping with documented diagnosis of primary immunodeficirncy you can get approved again for IG treatmrnt

Vague memory that maybe JAK also involved with Mastocytosis??if so worth looking i to tho i would think bone marrow biopsy you reedy had would rule that out assuming they looked