5 months of ivig, hasn't helped.

[Guest]

So my diagnosis is autoimmune encephalitis. I was only approved for 5 months of ivig then I lose my insurance because of my age. It's been 5 months and it hasn't helped. It did help the dysautonomia which is believe to be autoimmune but that's about it. My bladder, ocd, and fatigue continue to get worse and I am getting more disabled and frustrated. The only people who will see me locally about ocd are psychiatrists, I recently saw one and he dismissed all my diseases and treated me like a healthy person. His plan was to put me in psychiatric inpatient, detox me off all my sleep medications because they are "sedating", then feed me giant doses of stimulants because "that's how you treat chronic fatigue". He didn't understand that chronic fatigue syndrome is an actual disease, most likely autoimmune, very complex, and stimulants DON'T HELP, and the most important factor of this disease is getting sleep. He told me that it didn't matter if I didn't sleep, "people can run off of very little sleep", well I can't, my fatigue is intense and deathlike, most days it's hard to get out of bed.

 

Back to the AE, ivig hasn't helped. The ocd continues to get worse and worse. I got botox for my bladder (IC) and it didn't help. I'm being tortured alive by the ocd and bladder stuff and the fatigue keeps me from having any life. Just confused and perplexed I REALLY thought this was going to help everything, I was 100% convinced. It was very hard too, my infusions were 2 days in a row, 8 hours long, and twice a month because the doctors were scared of side effects and NO LOCAL DOCTOR WOULD HELP so they slowed my infusion rate a lot. The was extremely difficult because the IC has me getting up constantly to the bathroom and I had ocd the entire time, raging. Don't know what to do. I'm tired of trying things, I'm sick of EVERYTHING, I've tried things for 12 years, and nothing helps except my sleep medication, I'm sick of it all; some of my friends just quit trying stuff all together but I can't because of the ocd and bladder.

[MaryAW]

I assume you have a good psychologist? You don't mention anything about therapy.

 

Do you exercise? I had a friend with similar fatigue issues. She was very inactive and slept too much. When she regulated her sleep by going to bed at the same time and waking up at a reasonable hour, and also incorporated exercise into her daily routine, she was a much different happier gal.

[Guest]

I'm actually offended to once again be told to exercise. I can't even shower or cook for myself. I'm surprised that people don't understand that autoimmune and M.E. fatigue is not like a normal person who is tired after work, this is deathlike fatigue, deathlike. Not to mention any activity results in post exertional malaise and all symptoms are intensified for days to weeks after minimal exertion. I personally am completely wiped after taking a shower, if I read 2 chapters in a book I crash. If I go out I have to be in a wheelchair because of having myalgic encephalomyelitis and POTS (postural orthostatic tachycardia syndrome) which means if I'm in an upright position my blood pressure drops, I get very dizzy which can results in fainting, and I get bad tachycardia. The last time I tried to force myself to walk was 6 years ago and I passed out in the woods and didn't recover for weeks. I am a former competitive athlete. In 2008 I forced myself to hike because everyone said it would help, it didn't help my sleep, it didn't help the dysautonomia, it didn't help my anxiety or depression, and in 2009 I crashed and was bedridden for a year. Exercise is detrimental to ALL M.E. patients and most autoimmune patients.

M.E. is: Myalgic Encephalomyelitis (ME) is a chronic degenerative neuro-immune disease described in medical literature as early as 1935. A child or adult with ME has serious immune and cardiovascular abnormalities, with resulting serious CNS (central nervous system) consequences due to brain injury. The disease snatches the vital life out of patients on the level of diseases like MS, AIDS, mitochondrial diseases, and cancer. The unrelenting pain, cognitive impairment and exhaustion of ME are often literally unspeakable. Most times ME strikes relatively quickly (within hours, days, weeks). Once active and productive children and adults are suddenly robbed of vitality, with disability ranging from completely bedridden to somewhat functional. Variable disability and lack of treatments result in lowered or poor quality of life. ME usually progresses to premature death due to direct and indirect complications of the disease. Among the leading causes of death are heart failure and cancer, average life span 58.7 and 47.8 respectively, which is considerably younger than the general population (heart failure, 83.1; cancer, 72 - See Mortality). Direct and indirect costs to society (US): $18 - $24 Billion annually.

"Myalgic encephalomyelitis (ME) is a severe, complex neurological disease that affects all body systems. ME is more debilitating
than most diseases."
2012 ICC Physican's Primer

"In my experience, [ME/CFS] is one of the most disabling disease that I care for, far exceeding HIV disease except for the terminal stages."
Dr. Daniel Peterson

"We consider [ME/cfs] to be in the category of serious or life threatening diseases."

US FDA

[Guest]

To answer the above question, I've been with the same psychologist for 6 years doing CBT and EMDR, none of it have been helpful. I have been with the same psychiatrist for 10 years, no medication has ever helped. And to address sleep, I don't sleep that's part of the problem, something is wrong with my brain in regards to sleep, I am severely sleep deprived. When I lay down I'm not sleeping I'm just resting, which helps tremendously with brain pain and exhaustion but doesn't replace the need for sleep.

 

I have brain scans showing widespread all over brain inflammation and I merely would like to know why IVIG didn't help because in addition to : M.E., IC, and POTS, I also have autoimmune encephalitis diagnosed at NYU. I was confident that ivig would fix my problems and it hasn't helped AT ALL.

 

Someone sent a nice pm, appreciate that. However, I'm losing my insurance and medicaid won't pay for PEX or anything expensive and experimental, they suck. I have tried magnesium, didn't help with sleep, helped slightly with constipation. I've tried about everything for sleep including xyrem, that just made me high. A lot of the problem is my bladder, it hurts with intense urgent burning pain almost 100% of the time, I can not sleep with this pain, in fact it's hard to do anything with the pain.

 

I apologize for this bluntness but I did not sleep last night and I'm honestly tired of being told to exercise and then explain that it's one of the worst thing an M.E. patient could do. My friend with MS can't even leave her bed. This is serious stuff.

[Guest]

This is M.E.: https://www.youtube.com/watch?v=4J5CRGPvgl4

I think it's important to learn about it. Most of these people can't leave their beds or are confined to a wheelchair.

Having AE on top of this, is unspeakable suffering.

[MaryAW]

Is there a message board for M.E. somewhere? It's all I can do as a mother to learn about PANS and how to help my DD. Maybe there is a message board where you can find better help than this one. I don't think people on this PANS/PANDAS site are going to understand what you are going through. I hope you find an answer and get the help you need.

[BeeRae22]

To answer the above question, I've been with the same psychologist for 6 years doing CBT and EMDR, none of it have been helpful. I have been with the same psychiatrist for 10 years, no medication has ever helped. And to address sleep, I don't sleep that's part of the problem, something is wrong with my brain in regards to sleep, I am severely sleep deprived. When I lay down I'm not sleeping I'm just resting, which helps tremendously with brain pain and exhaustion but doesn't replace the need for sleep.

 

I have brain scans showing widespread all over brain inflammation and I merely would like to know why IVIG didn't help because in addition to : M.E., IC, and POTS, I also have autoimmune encephalitis diagnosed at NYU. I was confident that ivig would fix my problems and it hasn't helped AT ALL.

 

Someone sent a nice pm, appreciate that. However, I'm losing my insurance and medicaid won't pay for PEX or anything expensive and experimental, they suck. I have tried magnesium, didn't help with sleep, helped slightly with constipation. I've tried about everything for sleep including xyrem, that just made me high. A lot of the problem is my bladder, it hurts with intense urgent burning pain almost 100% of the time, I can not sleep with this pain, in fact it's hard to do anything with the pain.

 

I apologize for this bluntness but I did not sleep last night and I'm honestly tired of being told to exercise and then explain that it's one of the worst thing an M.E. patient could do. My friend with MS can't even leave her bed. This is serious stuff.

 

In reading through your post(s), these were my "first thoughts" (for whatever they're worth )

 

Like Maryaw, I would probably consider seeking advice on another board where people may be more knowledgeable of your particular condition, ? It seems like most people on this forum are contending with Pandas and Pans symotoms, and it sounds like you have other issues to address.

 

It sounds like you've exhausted ivig and pex as treatment options, regardless of insurance coverage. Have you tried other treatments?

 

If I were you, and I'd been seeing the same psychiatrist for 10 years without results, I would seriously consider finding another psychiatrist or therapist. But that's me. Maybe you stay because you're comfortable. Perhaps "comfortable" is holding you back? Or "hope" is making you stay? These are just thoughts... I obviously don't know anything about your or your particular situation.

 

"If you keep doing what you're doing, you'll keep getting what you're getting". --now, please know that I say this respectfully. My dd has been on abx for just shy of a year now, and she is still struggling, and I do understand that certain treatments take time-- however, (again, this is my quick assessment of your post(s) ), IMHO, it sounds like you might be in a bit of a rut. Maybe "exercise" isn't the answer, but the ivig, CBT, therapy and pex that you've tried haven't gotten you anywhere-- have you tried alternative methods? Diet, herbs, abx, SSRI's, naturopathy, osteopathy? I'm just asking, I don't know the answer. I'm guessing that there isn't going to be any one thing that's going to BE the answer-- I would try addressing one issue at a time- exhausting each possible treatment one at a time until each thing is addressed?

 

Best of luck to you.... Dealing with Pans with my dd has been the most challenging, frustrating and exhausting experience of my life. I pray every day that it will get better, and it's hard all the time. Keep the faith, you will get through this. I am thankful for the support offered here, and couldn't imagine dealing with this without the Internet! With that said though, I think sometimes there's almost "too much" information. If you have ocd yourself, I would strongly (and respectfully) caution what you're focusing on too-- again, I say this with complete kindness, my dd's ocd is severe, and I am often surprised by the things that "catch her attention".

 

Good luck and God Bless.

[Guest]

Well I'm here because I was originally diagnosed with Pandas, then when I went to NYU, I was diagnosed with autoimmune encephalitis and hospitalized. They are similar in that the immune system is attacking the brain or some area of the brain. I am aware of other AE patients here and not aware of any AE forum.

 

As far as the M.E. - there is no known cause, no cure, and no treatment. So I've given up. Except I thought the ivig would help, really thought it would, but nothing helps M.E.

 

My psychiatrist is awesome, he gets it. He's referred me out and I had awful experiences at: mayo, shands, and columbia univ. because they didn't understand that this wasn't a pure psychiatric problem this is my immune system attacking my brain and this is neuroinflammatory. Psych meds don't help anyways with ocd or depression so my psychiatrist basically tries to help manage my sleep.

 

If anyone knows of an AE forum fine but I haven't been able to find one. And I never tried PEX, my insurance won't pay for it, it took a lot of work and pushing to get them to cover 5 months of ivig but that's it, the trial is over. I personally thought ivig would fix the AE, the encephalitis, the ocd, my immune system, the M.E. so I'm confused as to why it didn't help anything which is the only reason I posted, I thought other people maybe had a failed experience with ivig as well.

 

I've been on M.E. message boards for the past decade, nobody is getting help or getting better, everyone stays sick or gets sicker like me, so there's no point. The M.E. doctors have no clue what to do for us, I know because I've seen 2 of them (I've been sick a very long time).

Edited December 28, 2014 by Guest

[sf_mom]

I am not sure why the IVIG is not working. It doesn't work for all PANDAS/PANS children either.

 

I just wanted to provide a few things to consider that you might not have pursued yet.

 

• Earthing: Perhaps you will be able to eliminate some of your sleeping aids. With everything go slow and steady. Only Earth yourself initially for an hour at a time.... once you are able to tolerate 3 hours then consider moving from a band to a pillow or sheet. A starter package with bands is only $19.99. http://www.earthing.com/product_p/sobbk.htm

 

• PK Protocol: There are a lot of practitioners that don't do the full protocol so I'd e-mail with Patricia Kane for a trained practitioner. Here is some information:http://www.pkprotocol.com My friend who has Lyme et al with chronic fatigue.... can not tolerate any exercise without needing to be in bed for hours post even a walk is having great success. She is on low dose cortisol because her adrenals are so messed up.

 

• Sponaugle Wellness Center: http://sponauglewellness.coms

 

Best.

[Guest]

Yes I have very severe ocd, that's why I avoid most forums. I can't go to any of the M.E. forums because of the massive amount of medical jargon and suggestions, I get very paranoid, anxious, angry, stressed, I can't take in that amount of info. And because there's no real treatment everyone is giving their 2 cents. That's why I'm trying to focus just on the Autoimmune encephalitis and surgery for my bladder. Anything can trigger my ocd, it can latch onto anything and run with it. For the most part I try to stay away from all medical forums because I can't handle it and I get very angry. I just wondered why ivig didn't help and what the next step for AE is, plus I don't have the anti-nmda kind, I have a different kind so that makes it difficult to find any information. The ocd and bladder are what are killing me the most. My neurologist will be hearing about how bad things are soon enough.

 

My adrenals are really screwed up but I wouldn't know who to see about it, I'm tired of seeing doctors. I just have my: psychiatrist, pcp, and psychologist. Everyone else has been a huge bummer. I recently saw a female rheumatologist and she had no idea what AE was nor did she care, she was extremely rude.

[NancyD]

I am SO SORRY to hear you are getting no help from IVIG! My DD18's OCD got worse with each infusion. The more treatments we tried the sicker she got until she had to leave school in her junior year. She has been home in bed for 18 mos. I have seen her experience so many of the things you write about and it breaks my heart. No one should have to go through this! My DD was recently dx with mold toxicity and the main focus has been on clearing her detox pathways. Last month she had a PICC line inserted for IV abx and recently she started the PK protocol - mentioned above in SF Mom's post. WOW, for the first time in 18 years of trying one treatment after another, we saw an overnight difference in DD when we switched from the more generic Phosphatidyl Choline to Essentiale N that Patricia Kane recommends. For DD, I'm hoping this will be key to getting her well.

 

Like you, we have seen one doctor after another. We have traveled all over the country looking for answers. We finally found a practice in CA that does not seem daunted by my DD's complex health issues. After the initial visit in person we do all follow-up visits by Skype every 3-4 weeks. When I need an urgent response I get an immediate email or phone call back. I'm not left waiting days or weeks to hear back. The doctor is compassionate, responsive, thorough, and very creative in her thinking. Moreover, she doesn't focus on just one piece -- she addresses EVERYTHING and very methodically. I have searched years for a doctor like this! If you would like to know the name of this doctor or practice, please PM me.

 

My heart goes out to you!

[sf_mom]

Nancy D: I am excited to read your post and see you are doing PK protocol with improvement. I am starting after winter break. It has made a huge difference for my friend but it took a good four weeks to "really" make a difference. I think GMA also does UVA treatments which has also helped a different friend tremendously.

 

Ophelia: I highly recommend GMA as well. Initially when NancyD mentioned them to me I was unaware of too many people who had seen them. We are fortunate to have some really good Dr.'s in the Bay Area which keeps me near our home and not traveling north to Santa Rosa. I was also worried she was making the trek with her daughter and it would be no different then any other Dr. they had seen previously. Its a long way to go from the East Coast. Anyway, since talking with Nancy I have met or spoken with four individuals that go to GMA and feel they have helped tremendously. Like Sponaugle Wellness they focus on mold, environmental toxins initially. PK protocol addresses these issues, methylation and calms the brain. Again, it needs to be the full PK protocol.... many Dr.'s do IV PC thinking it is the PK protocol and it is not.

 

I am also using BodyBio PC recommended by Patricia Kane in preparation for starting the full PK protocol in a couple weeks. Its expensive but good stuff.

 

My hope is you keep searching in light of all your failed or neutral responses you have had from other therapies.

Edited December 29, 2014 by sf_mom

[Kayanne]

I'm so sorry that IVIG didn't help. I know that Duke University offers stronger immune modulating treatments for AE. Have you explored that route?

[Guest]

I'm so sorry that IVIG didn't help. I know that Duke University offers stronger immune modulating treatments for AE. Have you explored that route?

Thanks Karen. I haven't explored anything else yet, waiting for my follow up appt early next year. I have to travel quite a ways to NYC but hopefully we'll discuss second line treatment. I'm scared to take anything stronger, I tend to get wicked side effects from everything and at tiny doses.

[dcmom]

Ophelia

 

Is there any way to fight for plasmapheresis? It really is the gold standard treatment- and will help u really see if inflammation is your main cause.

 

Have you tried high dose IV steroids. (Solumedrol). I am not familiar w/ your other health issues- but it helps w/ pandas and other autoimmune.

 

Lastly have you tried SSRI (prozac)? specifically starting with a super low dose 5mg and titrating up extremely slowly. At a very low dose 5-10mg it may at least help w/ mood.

 

I am suggesting these three things because they are what have helped my two pandas kids-

 

Also- if u are near FL- intense ERP at rothman center at usf is only therapy that has made a difference for them.