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Worse since IVIG - in a very bad place. Nowhere to turn.


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I have gone down hill since NYU. I had 4 rounds of ivig, LP for which I have no results yet, and a blood patch to fix a leak that made me deathly ill.

 

It's been 4 weeks and I'm worst than when I went. I'm deathly fatigued all the time so I can't do anything, my ocd is much worse post ivig - I can't even watch movies or shows it's just ocd, ocd, ocd, my mind is racing constantly with thoughts of dying to escape this nightmare. I'm much more depressed. My bladder is completely out of control and has been for 20 years now they talk about removing it and I would if I knew if would stop the urgent 24/7 pain and hurt that keeps me from sleeping and resting.

 

Went to psych. and he just put me on another med. I get side effects FROM EVERYTHING. I have EXTREME sensitivity to meds much more than anyone else my psych. or neurologist Dr. C at nyu has EVER SEEN. I couldn't take minocycline b/c within a week I'd have: Uti's, major yeast infection, and c-diff even with taking tons of probiotics. I've tried psych meds for 10 years and got horrific side effects, some things sending me to urgent care, serotonin syndrome at 50mg zoloft, and nothing helped my ocd, nothing, only 2 things slightly helped depression but not enough for real significant improvment.

 

I think Dr. C is waiting to contact us when he gets all LP test results back but I don't know that he is aware how badly I'm doing. Insurance denied ivig twice but what is the point if it has made me worse!?

 

I see no hope at all. I have no where to turn in my city. Putting me in psych ward makes me permanently sicker, it's too stimulating and exhausting, I can't sleep there, and my ocd goes crazy CRAZY in hospitals. I am definitively diagnosed with primary auto-immunity and they say my PET scan was scary abnormal their words are they've "never seen anything like it in a 28 yr old woman" only in elderly people with Alzheimer's.

 

I don't know what to do. My mom says she can't take any more. I can't sleep. I'm so physically disabled I spend most of my time lying in bed and there's nothing I can do about it, I'm extremely fatigued all the time and anything I do makes it worse. I am desperate for help now! But there is no help. There is no place to go. I live so far from NYC. My psychiatrist will just keep prescribing meds and none have helped in over a decade.

 

Don't have any energy to work on ivig appeals, so mom has to deal with that, she works full time RN 10 hour days and she is tired and exhausted. I've been ill for so long.

 

I am deficient on IgG1 and low on IgG4 and IgA2 - does anyone know what this means in terms of a diagnosis or name for appeal purposes? Does anyone know of resources for chronically ill to get help? My psychologist doesn't know what to do, he said in his 40 years he's never seen ocd like this or this intense, none of his methods work, tried emdr all kinds of things for past 6 years. I don't have germ or checking, all magical thinking obsessed with my bladder, sleep, and spiritual stuff things being evil; Had IC since I was 6 or 7 years old, bladder has ruined my life.

 

Why am I worse after IVIG? Anyone have this experience?

 

Have to lay down after writing this, any mental exertion sends me to bed with a bladder hurting and hurting and hurting. Tramadol my "new med" is revving me but makes me tired, screwing up my sleep, making my head hurt, not helping with chronic FM pain at all.

 

Dr. C says he needs all test results. I don't know how to get across to him that I need attention NOW. I am soft spoken in person and don't know how to relay my feelings that I am in despair and being tormented at every waking hour.

 

Distractions don't work b/c of the post exertional malaise, anything I do I pay for it and dread dread how it sends me to bed, the more fatigued I am = more ocd and less sleep. If I watch show = fatigue. If I play guitar = fatigue. Then ocd starts right back up. I've been to psych ward do not want to go back, they do nothing, they look at my history I've tried about ever psych med available and always say "don't know what to do", roomates give me ocd, hospitals give me ocd, nurses watching me mess up my sleep, waking me up for vitals messes up my sleep. I feel as though I don't have any options to get help.

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I am so sorry and wish I had answers for you. Our experience with IVIG was not successful, but I'm sure others will chime in on their experiences. It does seem like some get worse before they get better, and maybe that is what is happening.

 

All I can give you are cyber hugs and just know we are thinking of you and your mom. Hopefully the doc will get the test results back soon and will know what direction to take your treatment.

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I am so sorry and wish I had answers for you. Our experience with IVIG was not successful, but I'm sure others will chime in on their experiences. It does seem like some get worse before they get better, and maybe that is what is happening.

 

All I can give you are cyber hugs and just know we are thinking of you and your mom. Hopefully the doc will get the test results back soon and will know what direction to take your treatment.

I hope that's what is happening. We have no other options. Immunomodulators made me violentally ill yet ivig did not.

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Hi Ophelia...Cyber Hug to you. My ds had IVIG about 9 months ago. He did not have any negative side affects and he was one of the lucky ones whom was an "instant responder". However, he did have a big flare 4 months later. Since then though, I have seen other different, dramatic improvements. I have wondered if it was the delayed big picture affect that I have been seeing. They say that IVIG can take months up to a year to do its thing, so I hope that is true for you.

 

I have my other non-Pandas son on a waiting list for Dr. Greenblatt. Have you read up on him? Somebody here posted a link here. That is how I found him. He is a psychiatrist whom is also integrative. What I have read has impressed me. He is in MA. I know that the idea of another doctor, another opinion probably sounds dismal to you. Just remember though, it only takes one doctor whom might make a connection that others missed that could be life changing..

 

Don't give up.

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Hello Ophelia--am so sorry your having such a tough time, sending healing thoughts your way.

 

Have heard with many treatments that you can get worse before better. May I ask if you are detoxing, taking probiotics, and fish oil? Have you checked for methylation issues. Very important to be able to detox. PM me if you would like me to send a care package with these 3 things in it.

 

When we started this journey my ds seemed to present differently then a lot of others on this forum. Mold was one of the reasons (besides lyme etc.). Have you or your doctor read about Dr. Shoemakers discoveries?

 

Bone broth is something that has been written about a lot lately. It has good vitamins/minerals and great for gut. We save all chicken bones, crush them and boil for a while. This along with cilantro (if you can) tastes pretty good and really good for you. You can also boil other bones after crushing. We buy organic beef soup bones just for this purpose too. The cilantro is an anti-parasite which you most likely are dealing with as well. Miso is good to add after cooling a bit too.

 

Just throwing some simple but effective ideas out there. These seems to be my mantra, but we know first hand how helpful this stuff has helped us get through treatment.

 

Know that there are many of us out here that are wanting you to heal and hoping that you are headed in that direction right now. We will try to help with problem-solving now and celebrate your healing with you. Take care.

Edited by juliafaith
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Blood tests can only tell if your body has H pylori antibodies. It cannot tell if you have a current infection. A stool test can detect traces of H pylori in the feces.

 

What test would it be that tests for H. Pylori? Is it a blood test? Thanks!

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You might try calling Sponaugle Wellness Center. They are in Florida. They are an inpatient facility that looks at all issues biomedically. I have heard of some great outcomes. Watch/read some of their testimonials.... "Ricky" is a guy who was in really bad shape. I think you would be well served to be inpatient with a facility that gets what you are going through and can help from a biomedical perspective.

 

http://sponauglewellness.com

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Hello Ophelia--am so sorry your having such a tough time, sending healing thoughts your way.

 

Have heard with many treatments that you can get worse before better. May I ask if you are detoxing, taking probiotics, and fish oil? Have you checked for methylation issues. Very important to be able to detox. PM me if you would like me to send a care package with these 3 things in it.

 

When we started this journey my ds seemed to present differently then a lot of others on this forum. Mold was one of the reasons (besides lyme etc.). Have you or your doctor read about Dr. Shoemakers discoveries?

 

Bone broth is something that has been written about a lot lately. It has good vitamins/minerals and great for gut. We save all chicken bones, crush them and boil for a while. This along with cilantro (if you can) tastes pretty good and really good for you. You can also boil other bones after crushing. We buy organic beef soup bones just for this purpose too. The cilantro is an anti-parasite which you most likely are dealing with as well. Miso is good to add after cooling a bit too.

 

Just throwing some simple but effective ideas out there. These seems to be my mantra, but we know first hand how helpful this stuff has helped us get through treatment.

 

Know that there are many of us out here that are wanting you to heal and hoping that you are headed in that direction right now. We will try to help with problem-solving now and celebrate your healing with you. Take care.

I do take probiotics and fish oil daily along with some other vitamins I can tolerate. Some just make me quite ill. Thanks so much though for offer, much appreciated.

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It's not an option to see another doctor right now, we don't have any money and I truly love my psychiatrist and I love Dr. C, I think he's onto something, he's found a lot more than anyone ever has and my gut feeling is to continue with ivig if that is possible and it is the gut feeling all my friends have. Doctors just aren't accessible any more when you are in need and we still haven't heard back. It's just terrible. I don't know if they're overbooked, too many patients.

 

There also aren't any resources in my city for chronic illness. I think it's a shame to send us to the psych ward..........when the problem is physiological. Insurance has covered everything with Dr. C and Dr. N, we simply do not have any resources to see anyone else and I wouldn't want to at this point, not when we are just getting started. Insurance has denied the first appeal though for ivig after covering 4 infusions, I just still wonder if it's normal to feel worse? Traveling also is beyond brutal, it nearly kills me, I just can't travel and I told Dr. C I can't go back up there until I'm much better.

 

One thing he said in my report is that all the abnormal brain scan indicate autoimmune encephalitis. What he told me in person about the PET scan and the radiologist who said she'd never seen anything like it in a young female, he said, "I've only seen this type of pet scan in neuro-lupus or neuro-lyme". So I think he has narrowed things down, I just haven't received any labs or LP results and it's been a month.................................... I really hope something comes back, the LP was brutal b/c of the leak and the blood patch was the the worst.

 

I am much worse though since the infusions and I don't know why. There were positive changes at first and since it's been a month without my next infusions, those have dissipated. I had to double up on my meds when returning home which means I'm not so sensitive, which is good, I have the worst sensitivity to medication and vitamins, etc. .......horrific.

 

I love the beach but I don't think going anywhere "nearby" would be of any help. I'm stuck on the couch or bed almost all day b/c of how fatigued I am, I simply can't do much of anything and have terrible PEM, it just feels like I am dying and has for quite some time.

 

I am willing to explore neurological lyme but only with a non lyme doctor, a non quack doctor, and not with igenex which can feed out a lot of false positives. I honestly don't know what specialist to see for this but I don't trust the 2 LLMD's I saw in the past, they just diagnosed anyone who walked through the door. Dr. C was going to check for antibodies in cerebral fluid and has a background in lyme from columbia, I believe. The other problem is every time I take abx, I get c-diff, uti's, and yeast infection within a week and I take plenty of probiotics of high quality.

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My heart breaks for how sick you are...... I have met similarly sick individuals that are unresponsive to almost any intervention and feel emotionally similar. I seems like you have a wonderful support group of individuals that are similarly sick which is fantastic. It is our/my support group off forum that has also helped me through the roughest of times.

 

I only throw out Sponaugle Wellness Center to let you know there are options and the most desperately sick individual have gotten better. I have more 'way out' there options in my back pocket if ever needed.

 

Hoping the next few IVIGs bring relief.

Edited by sf_mom
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