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5 months of ivig, hasn't helped.

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I'm so sorry to hear this! Have you heard anything about the Cheney Clinic in N. Carolina? They treat only CFS/ME patients and have been around for a very long time. http://www.cheneyclinic.com/ I'm reading a book about the suspected role of XMRV, a retro-virus, in CFS/ME and the scientific investigation into that. Dr. Cheney played a significant role in the story, as a CFS pioneer, researcher and clinician. I also saw him mentioned on Scott Forsgren's blog - The Better Health Guy. http://www.betterhealthguy.com/panama-stem-cell-therapy

 

I hope you have people willing to help you research. Its so tough when you are exhausted and brain-fogged! Praying you get some answers soon - don't give up!!

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I'm so sorry to hear this! Have you heard anything about the Cheney Clinic in N. Carolina? They treat only CFS/ME patients and have been around for a very long time. http://www.cheneyclinic.com/ I'm reading a book about the suspected role of XMRV, a retro-virus, in CFS/ME and the scientific investigation into that. Dr. Cheney played a significant role in the story, as a CFS pioneer, researcher and clinician. I also saw him mentioned on Scott Forsgren's blog - The Better Health Guy. http://www.betterhealthguy.com/panama-stem-cell-therapy

 

I hope you have people willing to help you research. Its so tough when you are exhausted and brain-fogged! Praying you get some answers soon - don't give up!!

Yes I've heard of him but he's really expensive, like insanely expensive. Pretty much everyone has dropped the xmrv theory, the scientist who supposedly discovered it was a fraud and was arrested, so pretty much it isn't discussed any more. I've seen 2 major M.E. doctors and they either couldn't help or I couldn't tolerate any of their treatment. I'm so sensitive to all medications and have extreme to violent reactions at tiny doses. The weird thing is, I tolerated ivig just fine but it didn't help.

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And I don't have any money. I'm very poor. The govn doesn't help much when you are disabled. But my insurance is covering Najjar right now and I like to only focus on one doctor. I like him and we have a good relationship. I also liked Dr. chong very much. I think nobody really knows what to do though. Especially with M.E. and ocd.

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Ophelia,

 

What is Dr. Najjar's recommendation on what you should do next?

Don't know. Haven't seen him yet for follow up and live very far from NYC so no communication. But I think he will be surprised the ivig didn't help, we ALL thought it would help tremendously. I don't want to have to tell him, but it is the truth.

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Hang in there. I know this is tough for you and any care givers that may be trying to help you through this. My son did not repond to the IVIG either. Twelve years is a long time to be fighting a chronic illness. My son is 14 and has had some of his symptoms since he was seven.

 

May I ask, how you were checked for AE and is this the same as NMDAR encephalities? The reason why I ask is because an immunologist diagnosised my son with unspecific encephalities. I think his diagnosis was based on high Glutamate levels that showed up on my son's testing. My son does have a daily headache with scalp pain. One of the things I have learned through research is that the NMDAR receptors regulate glutamate. Magnisum and NAC are supplements that help regulate glutamate and the NMDAR receptors. Those articles are in the headache post, I made earlier.

 

I have to be careful with type of magneisum supplements that I give my son. Epsom salt foot soaks seem to work the best and don't upset his system. It's a cheap way of getting in magnesium. The NAC will boost the immune system. Just wanted to share these 2 supplements with you and tell you to fight for your health needs. Hope you are able to see your doctor soon, so he can get you on a treatment plan that will help the AE symptoms.

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Hi Ophelia,

 

I was sitting waiting for my father at his Urologist yesterday. There was an article about OAB and newly approved treatment and thought of you. Botox injections. I know your root cause is different, but perhaps it could still help you? You have probably either already tried this or considered...but just in case you had not heard of it I thought I would post it.

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Thanks everyone. I'm actually getting off of the NAC. I've been on it a few months and it makes me feel as if I haven't slept at all. I'm so sleepy I'm falling asleep places after just sitting down because of 600mg of the NAC, so I have to discontinue it. I take it at night, wake up feeling as though I haven't slept at all.

 

I don't have anti-nmda form. Originally was diagnosed with clinical encephalitis and primary autoimmunity. Brain scans very abnormal show inflammation, wide-spread.

 

I got botox injection about 3 months ago for bladder - it has made me worse.

 

I'm really tired of trying medications and supplements, there reaches a point when the patient simply cannot keep trying. I get side effects from EVERYTHING so I hate trying things, everything disrupts my sleep or makes me very sedated. 12 years is a very long time to be this ill.

Edited by Guest

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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.

Endocrinologist would handle bad adrenals. This is worth investigating.

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This comes from www.sciencedaily.com. Go to site and type in "surgery for OCD" to see full articles. These are just the short synopsis I cut and paste. There are many new treatments for refractory OCD since that and your bladder seems to be the main focus of your issues. Perhaps, you cannot do much for the ME but there are treatments for the OCD. I would suggest adrenals be looked at be checked as well. There are medication treatments for POTS--this alone, should not leave you wheelchair bound. Unless, it is the ME leading to this. Early results indicate potential for focused ultrasound to treat OCD

Date:
December 10, 2014
Source:
Focused Ultrasound Foundation
Summary:
The potential of focused ultrasound to treat certain patients with obsessive-compulsive disorder (OCD) has been supported by new research. "There is a need for non-invasive treatment options for patients with OCD that cannot be managed through medication," says the lead investigator. "Using focused ultrasound, we were able to reduce the symptoms for these patients and help them get some of their life back without the risks or complications of the more invasive surgical approaches that are currently available."

Evidence supports deep brain stimulation for obsessive-compulsive disorder

Date:
September 22, 2014
Source:
Wolters Kluwer Health: Lippincott Williams and Wilkins
Summary:
Available research evidence supports the use of deep brain stimulation (DBS) for patients with obsessive-compulsive disorder (OCD) who don't respond to other treatments, concludes a review. Despite the limited evidence base, DBS therapy for OCD has been approved by the Food and Drug Administration under a humanitarian device exemption.

Deep brain stimulation for obsessive-compulsive disorder releases dopamine in brain

Date:
April 30, 2014
Source:
Elsevier
Summary:
Some have characterized dopamine as the elixir of pleasure because so many rewarding stimuli - food, drugs, sex, exercise - trigger its release in the brain. However, more than a decade of research indicates that when drug use becomes compulsive, the related dopamine release becomes deficient in the striatum, a brain region that is involved in reward and behavioral control. New research suggests that dopamine release is increased in obsessive-compulsive disorder and may be normalized by the therapeutic application of deep brain stimulation.
Identifying brain variations to predict patient response to surgery for OCD
Date:
December 23, 2014
Source:
The JAMA Network Journals
Summary:
Identifying brain variations may help physicians predict which patients will respond to a neurosurgical procedure to treat obsessive-compulsive disorder that does not respond to medication or cognitive-behavioral therapies, according to a report.

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Hi Ophelia,

 

Did your doctor tell you when to take the NAC? My son only takes the NAC with breakfast and lunch. Our doctor told us it would stimulate the cells and give him more energy during the daytime so he could stay awake during the day time and sleep better at night. This supplements helps some patients get back into a regular sleep cycle along with other benefits. My son started with a low dosage and built up to a higher dosage. Taking it during the day helps with energy levels. However, it sounds like you are very sensitive to it. If you decide to start it back up, I would look for a lower dosage and don't take it after the evening meal. Taking it after the evening meal was too much for my son.

 

It's good to hear but very sad to know that your inflammation showed up on a brain scan. I am assumng that you may have had some scans before and nothing showed up.If no scans were done before now that's no big deal either. I am just happy that you and your doctor at least know what the health condition is and maybe he can figure out a way to get you the treatment that is needed. Even though you do not have insurance, I belive it is still possible for you to get treatment. Have you filed for disability? Due to this medical condition, you should be able to and this may help you get access to other medcal help in the state you live in. I don't no much about filing for disability or state laws but please check into this.

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Ophelia, I am so sorry you are going through this. Ds16 hasn't turned around with IVIG this last time either. I am really impressed that you are doing research and advocating for yourself. This is a horrible disease whether it's called AE or PANS/PANDAS. I wish I had a better answer for you. Stay strong!!

T.Anna

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