What is the optimal dose/autoimmune dose of IVIG?

[bread.]

I do think it has been helping with blood pooling in my legs. They feel less heavy/ achy. I’m planning to do another lean test to compare to my previous results. During my last lean test my hands and feet turned purple and swollen and the rest of my body was a mix of red and white blotches, and I got progressive electric shocks in my hands and feet (starts out like tiny pin pricks and progresses to huge jolts of electricity that makes my body jerk and I have to stop the test). The lean test is the only time I’d stand upright and stay still. I’ve had POTS since I was 12 (I’m 30 now, and got ME/CFS at 21) so I’m used to always moving my legs to prevent blood pooling.

how severe were/are you and what was your onset like? do you also fit eds hypermobiley phenotype? how are you today? did you have any autoantibodies?

 

[GlassHouse]

how severe were/are you and what was your onset like? do you also fit eds hypermobiley phenotype? how are you today? did you have any autoantibodies?

I had gradual onset starting in Jan 2012 after encephalitis (now presumed HHV7 as I have spinal fluid and tissue samples from multiple years that are positive for HHV7 DNA). I got worse on an exponential scale over the last 9 years, so worse faster every few months. I’ve been housebound since 2017, bedbound 16+ hrs/ day. I could only maintain consciousness for 2-3 hrs/ day. My worst symptom is severe altered state of consciousness/ hypoarousal/ hypersomnolence.

I have very very severe hEDS. I fully dislocate large joints. So my left hip fully comes out of its socket with every step. I am dislocated at the jaw, trachea, hyoid, every rib, clavicle, shoulders, pelvis, pubic symphysis, hips, knees, elbows, wrists, ankles, sternum, and many vertebrae. This was the assessment by Dr. Zingman who consults with Dr. Henderson.

I’m actually recovering from emergency fusion C0-C2. My CCI and AAI was extremely severe (a combination of the unusual severity of my hEDS plus inflammation from the HHV7 causing my upper spine to progressively destabilize over the last 9 years). I became fully paralyzed in my my arms and legs started having strokes and lost the ability to breathe, not just in a certain position but all neck/ head positions (the only thing that worked was hospital bed at exactly 10 degrees tilt, anything else and I stopped breathing). I was flown medivac from CA to MD for emergency surgery with Dr Henderson. I no longer have paralysis, strokes, transient ischemic attacks, and now breathe on my own. Those symptoms were completely gone the moment I woke up from surgery.

I’m only 1 month post-op so no change in any other symptom. I was told by other patients to wait at least 3-6 months to make any judgements about my ME/CFS symptoms since it takes a long time to heal from the surgery.

That being said, I was going to die and Dr. Henderson completely rearranged his schedule to get me into immediate surgery, which saved my life. So I have no regrets about surgery and am so thankful for it even if it does not fix my ME/CFS symptoms.

Conduction potentials were very slow through my brainstem. I have 9 years of physical and ischemic injury to my brain and brainstem and that might not get better. I was apparently born with very small vertebral arteries, which is why the craniocervical instability was causing strokes and TIAs. It was just extra easy to cut off blood to my brainstem due to the abnormally narrow arteries and the spinal instability. Dr. Henderson said the brain is capable of repairing certain damage but this takes months to years so we just won’t know how my symptoms will change.

I need to stay near Dr Henderson’s hospital, working with Dr Zingman on physical therapy to recover from the surgery but also she said I’ll need to do prolotherapy for my shoulders and hips because they’re totally out of their sockets. This level of damage from hEDS isn’t typical, but I’ve had a full connective tissue genetics panel at UCSF so I’m not sure what else could cause it. They did say that there are likely many more subtypes of EDS yet to be discovered so maybe I one of those. But for now the best fitting diagnosis is hEDS, which I’ve had as a diagnosis since childhood (just no formal genetics testing until last year).

I’ve got my IgG with me and plan to restart infusions. I’m really off schedule ever since I had the first stroke and stopped breathing in early February. My surgery was 2/11. Dr. Kaufman said I’m ok to restart infusions post surgery especially since they were helping my morning syncope.

I had some CellTrend antibiotics and the PANDAS testing was also positive. I also had positive skin biopsies for small fiber neuropathy. This was all done through Dr Kaufman. He’s the best Dr and I also owe him my life.

 

[bread.]

I had gradual onset starting in Jan 2012 after encephalitis (now presumed HHV7 as I have spinal fluid and tissue samples from multiple years that are positive for HHV7 DNA). I got worse on an exponential scale over the last 9 years, so worse faster every few months. I’ve been housebound since 2017, bedbound 16+ hrs/ day. I could only maintain consciousness for 2-3 hrs/ day. My worst symptom is severe altered state of consciousness/ hypoarousal/ hypersomnolence.

I have very very severe hEDS. I fully dislocate large joints. So my left hip fully comes out of its socket with every step. I am dislocated at the jaw, trachea, hyoid, every rib, clavicle, shoulders, pelvis, pubic symphysis, hips, knees, elbows, wrists, ankles, sternum, and many vertebrae. This was the assessment by Dr. Zingman who consults with Dr. Henderson.

I’m actually recovering from emergency fusion C0-C2. My CCI and AAI was extremely severe (a combination of the unusual severity of my hEDS plus inflammation from the HHV7 causing my upper spine to progressively destabilize over the last 9 years). I became fully paralyzed in my my arms and legs started having strokes and lost the ability to breathe, not just in a certain position but all neck/ head positions (the only thing that worked was hospital bed at exactly 10 degrees tilt, anything else and I stopped breathing). I was flown medivac from CA to MD for emergency surgery with Dr Henderson. I no longer have paralysis, strokes, transient ischemic attacks, and now breathe on my own. Those symptoms were completely gone the moment I woke up from surgery.

I’m only 1 month post-op so no change in any other symptom. I was told by other patients to wait at least 3-6 months to make any judgements about my ME/CFS symptoms since it takes a long time to heal from the surgery.

That being said, I was going to die and Dr. Henderson completely rearranged his schedule to get me into immediate surgery, which saved my life. So I have no regrets about surgery and am so thankful for it even if it does not fix my ME/CFS symptoms.

Conduction potentials were very slow through my brainstem. I have 9 years of physical and ischemic injury to my brain and brainstem and that might not get better. I was apparently born with very small vertebral arteries, which is why the craniocervical instability was causing strokes and TIAs. It was just extra easy to cut off blood to my brainstem due to the abnormally narrow arteries and the spinal instability. Dr. Henderson said the brain is capable of repairing certain damage but this takes months to years so we just won’t know how my symptoms will change.

I need to stay near Dr Henderson’s hospital, working with Dr Zingman on physical therapy to recover from the surgery but also she said I’ll need to do prolotherapy for my shoulders and hips because they’re totally out of their sockets. This level of damage from hEDS isn’t typical, but I’ve had a full connective tissue genetics panel at UCSF so I’m not sure what else could cause it. They did say that there are likely many more subtypes of EDS yet to be discovered so maybe I one of those. But for now the best fitting diagnosis is hEDS, which I’ve had as a diagnosis since childhood (just no formal genetics testing until last year).

I’ve got my IgG with me and plan to restart infusions. I’m really off schedule ever since I had the first stroke and stopped breathing in early February. My surgery was 2/11. Dr. Kaufman said I’m ok to restart infusions post surgery especially since they were helping my morning syncope.

I had some CellTrend antibiotics and the PANDAS testing was also positive. I also had positive skin biopsies for small fiber neuropathy. This was all done through Dr Kaufman. He’s the best Dr and I also owe him my life.

all the best to you.

 

[Hoosierfans]

@GlassHouse i don’t know what to say except I am sending you a giant hug and big, giant good vibes for your upcoming recovery. 🥰. I’ve heard amazing things about both Dr Henderson and Dr Kaufman in various circles and I’m glad they are both on your team. 🙌🏻⭐️🤗

 

[PisForPerseverance]

@GlassHouse I am humbled by your story. I am just starting my eds journey (aka becoming aware I have the disorder, started pt) and starting to have subluxations and increasingly less function, and I am just humbled by you surviving all you've survived. We are about the same age as well and it's been almost as long since getting mecfs for me as well. Did you start pt for eds in childhood? Or were there no symptoms yet? I am going to do prolotherapy as well, and I wish for both of us that it is useful. I don't know if it would be safe for you, but have you thought about prolotherapy along the spine? If you haven't heard of it already, specialized doctors can do this with guided ultrasound, luckily there is an eds specialist that can do those high level injections in my city. If you wanted any help with investigating that please let me know, I have done some legwork on it as far as doctors around the country. What was your ivig covered for? I'm so happy you made it and I hope that your existence gets more and more comfortable.