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

[Hrosenkrantz]

It does seem like you have a slam-dunk case for a lot of IVIG. I hope the insurance advocate is helping you.

[mama2alex]

After my son had his first IVIG, he got worse before he started feeling better. At 4 weeks post IVIG things were pretty bad. At 7 weeks post IVIG he started making huge improvements. Dr. K coined the term "turning back the pages," but my belief is that the donor antibodies kill off existing infections (at least in part) and the worsening of symptoms is a herx. If that's true, anything you can do in terms of detox might be helpful.

 

I can't remember if you're doing anything with your diet, but it might be worth your while to eliminate gluten and dairy on a trial basis. I think a lot of chronically ill people find they have food allergies as part of the puzzle.

 

Other than that, I want you to know that you're in my thoughts and I hope to be reading good news soon!

[kimballot]

ophelia -

 

I am so sorry you are experiencing this. My son, too, got much worse after his first IVIG 3 years ago. He has some mild immune deficiencies as well. We continued IVIG, continued looking for infections, continued to tweak his antibiotic, continued to change his IVIG schedule. For about 2 years I thought he would never crawl out of that hole and I started to plan my life to have him dependent on me forever.

 

But he is crawling out of the hole. He is in a good place now. He is able to go to school and do some social activities like going out to dinner a couple times a week. Last year at this time he barely left the bed to meet with a tutor for an hour.

 

in our case, the doctor believes he has a long-standing bartonella infection, but that is not entirely clear. Whatever it is, the combination of antibiotics and IVIG is helping.

 

It has been a long process. Please tell your mother I feel for her as well and I hope she can also know there is a light at the end of this tunnel.

 

It sounds like you have doctors that you like now and that are really working for you. The most important thing is to NOT GIVE UP.

 

You said that your brain scan revealed autoimmune encephalitis. I hope you have read (or will read) "Brain on fire" and that your Mother will do the same. It is available in audiobook if you are not able to read much now and your local library may have it to download free.

 

Hang in there!

 

 

[ktdommer]

Just chiming in to say how sorry I am that you are going though this. I can't imagine how frustrated you must be. Not sure where you got your info on Igenex docs. Haven't heard of that before. We have an ILADS doc and would be lost without him. My 18 year old son was once bed bound. We test outside of Igenex also and coinfections and CD57 all point to Lyme.

Have you tried Deplin?

Hope you have better days ahead,

K

[Guest]

ophelia -

 

I am so sorry you are experiencing this. My son, too, got much worse after his first IVIG 3 years ago. He has some mild immune deficiencies as well. We continued IVIG, continued looking for infections, continued to tweak his antibiotic, continued to change his IVIG schedule. For about 2 years I thought he would never crawl out of that hole and I started to plan my life to have him dependent on me forever.

 

But he is crawling out of the hole. He is in a good place now. He is able to go to school and do some social activities like going out to dinner a couple times a week. Last year at this time he barely left the bed to meet with a tutor for an hour.

 

in our case, the doctor believes he has a long-standing bartonella infection, but that is not entirely clear. Whatever it is, the combination of antibiotics and IVIG is helping.

 

It has been a long process. Please tell your mother I feel for her as well and I hope she can also know there is a light at the end of this tunnel.

 

It sounds like you have doctors that you like now and that are really working for you. The most important thing is to NOT GIVE UP.

 

You said that your brain scan revealed autoimmune encephalitis. I hope you have read (or will read) "Brain on fire" and that your Mother will do the same. It is available in audiobook if you are not able to read much now and your local library may have it to download free.

 

Hang in there!

 

 

Thanks!!!! Appreciate this a lot. Does it make any difference that I had 4 infusions done within a weeks time!????? Yea all my fatigue in mental so something bad is happening in my brain. I did listen to the brain on fire audiobook 2 years ago and that's how I came to know Dr. C and Dr. N - I definitely felt like they could help me after reading their research papers.........which was really hard, reading crashes me mentally, well everything does.

[Guest]

There is a lyme center at Columbia run by a psychiatrist Brian Fallon. I presume that they take insurance. Might be worth calling him, I called him once and he returned my call but he does not see children which is what I was looking for.

I am very impressed with columbia's research, I'm looking at their web-site again now. Thanks.

 

And thanks to everyone who responded, I'm too tired to respond back individually but I do thoroughly appreciate you taking the time.

[kimballot]

 

ophelia -

 

I am so sorry you are experiencing this. My son, too, got much worse after his first IVIG 3 years ago. He has some mild immune deficiencies as well. We continued IVIG, continued looking for infections, continued to tweak his antibiotic, continued to change his IVIG schedule. For about 2 years I thought he would never crawl out of that hole and I started to plan my life to have him dependent on me forever.

 

But he is crawling out of the hole. He is in a good place now. He is able to go to school and do some social activities like going out to dinner a couple times a week. Last year at this time he barely left the bed to meet with a tutor for an hour.

 

in our case, the doctor believes he has a long-standing bartonella infection, but that is not entirely clear. Whatever it is, the combination of antibiotics and IVIG is helping.

 

It has been a long process. Please tell your mother I feel for her as well and I hope she can also know there is a light at the end of this tunnel.

 

It sounds like you have doctors that you like now and that are really working for you. The most important thing is to NOT GIVE UP.

 

You said that your brain scan revealed autoimmune encephalitis. I hope you have read (or will read) "Brain on fire" and that your Mother will do the same. It is available in audiobook if you are not able to read much now and your local library may have it to download free.

 

Hang in there!

 

 

Thanks!!!! Appreciate this a lot. Does it make any difference that I had 4 infusions done within a weeks time!????? Yea all my fatigue in mental so something bad is happening in my brain. I did listen to the brain on fire audiobook 2 years ago and that's how I came to know Dr. C and Dr. N - I definitely felt like they could help me after reading their research papers.........which was really hard, reading crashes me mentally, well everything does.

 

I would think 4 infusions in one week would be difficult but I am not sure if they did 2 grams per kilo over 4 days or 4 grams per kilo over 4 days. Generally folks receive 1.5-2grams per kilo over 2 days.

[BillBob]

I am not a doctor, but at the age of 19 (currently) at college I got very sick, suddenly had extreme OCD, life went down toilet, etc. I had PANS/PAnDAS as a kid along with neruo lyme, very bad seizures extreme mood issues, etc. got better at adolescence after Iv treatment, until my second year of college when I became disabled. Being in a disabled state and having my perfectly normal life ruined I desired greatly to get better, so I researched, a lot. Once again I am not a dr. But from the drs I have talked to along with reasearchers this is my take. If I were you I would get igenex pcr and western blot tested for lyme and all co infections, specifically bartonella. Your symptoms speak very clearly of bartonella symptoms, shin pain fatigue anxiety problems OCD along with a weak immune system. To further this point, the reason humans, and more specifically certain people and not everyone get very bad lyme is because lyme effectively screws with our immune systems. In a non immune compromised person lyme usually results in just fatigue and joint pain, as your body is fighting the infection, fatigue, and the lyme spirochetes clog capillaries, and joints with low blood flow are especially effected. However certain people get lyme much worse as we all know, and the symptoms experienced by these individuals is much greater in varience(most likely autoimmune related). Also, confections often show up in bad lyme cases, as once again they only show weird bad symptoms when the individual is immune compromised. Example of bartonella, which normally is only know for cat scratch fever, but in a immune compromised person flourishes and common symptoms of heel pain anxiety bone pain(inside the bones themselves ache especially shins) psych problems fatigue etc. Not surprisingly, many people with PANS are shown to have lyme or co infections, as I believe both these diseases( the symptoms themselves) are caused by an autoimmune response, which is caused by the presence of a bacteria. One only has to look at deer, which can and do carry lyme to see this. As deer are animals and much more likely to be susceptible to death when sick, natural selection has favored a breed more readily able to handle the presence of lyme and other tick borne diseases. In other words, throgh time the population has been highly compromised of individuals with immune systems that don't freak out to the presence of lyme, and therefore they can live with it, just as a person who dosnt get PANDAS when he or she has strep is due to a normal immune system. So if I were you, I would get tested for bartonella, as it has been shown IVIG will do nothing unless you are currently free from infection, so if you have bartonella lyme co infection then IVIG won't do much. You would need antibiotics to clear the infection and then proceed with IVIG. I know how bad the suffering is, my life to has vanished in the span of 4 months, I am reduced to sitting on the couch spacing out all day so that I don't have panic attacks. I origionally assumed I would just need psych meds and like you had a reaction to 25mg of zoloft. So in a breif summery, use igenex to get tested for lyme bartonella babes is relic his mycoplasma candida yeast. If any are present then eliminate infection, then ivig. Eliminating the infections will suck due to herximers, but ultimately it will help you. If our life is as bad as you say then it won't hurt to take risks to win the battle. I wish you the best of luck.

[Pandasphilly]

Hi Ophelia,

 

My son is an extreme side effects responder. Doctors cannot believe his response to anesthia & other meds. They call in other doctors for opionion and to watch it for clinical purposes. It scares them, they've never seen these reactions before. I've heard neurologists and nurses and the whole group watching him say "I've heard of this before but I've never actually seen it". Then they turn to me and I say "I warned you but no one listens". Then they say "next time you have to INSIST we listen" but I already do that and no one believes how bad it is until they see it. So I get where you're coming from.

 

and YES my son gets so much worse after IVig for months (think Howard hughes at the end of his life OCD, panic/anxiety, rage/violence, destruction, tics increase to where it appears he is having severe seizures all day long not a minutes break, head feels like it's going to fall off from movement, severe choreiform finger/toes/wrists. Can't dress, eat, teeth, shower, leave room. Lost 20+% body weight, Plus so much more). And it was severe before the IVig or I wouldn't have done it. Just when you thought it couldn't get worse.

 

You are obviously receiving .4/k if they are doing it daily over the course of a week. I much prefer this if it was available to us. I am thinking the 2g over 2 days is just too high a dose for my son given the way he responds to things, but there must be a reason they need it this high.

 

But then we see improvement a few months later, usually around month 4 or so. Tics disappear, ocd greatly reduces, personality comes back, jokes/laughs, plays, goes to school, brain fog lifts, urinary frequency subsides, sleeps, not hyper. Then wham-o ! Complete relapse worse than before. 3 times now. But we haven't been consistently administering IVig which his doctor would prefer. We pay out of pocket so I need time to recoup.

 

So I too am faced with if we dare consider IVig again because we're barely surviving the many months of terror involved in finding improvement and given the remit/relpase history there's no guarantee. Our doctor believes there would not be relapses if we could afford IVig every 2-3 months.

[PowPow]

Pandasphilly,

Does your son have a diagnosis besides pans/pandas? I mean, has other testing found anything? I am curious, given his severity.

How old is he?

[Pandasphilly]

Pandasphilly,

Does your son have a diagnosis besides pans/pandas? I mean, has other testing found anything? I am curious, given his severity.

How old is he?

 

Well there is the ever looming questionable lyme & co so he's being treated for it either way. His Igenex bands 31 & 34 we are told are indicative of autoimmune disorder. Any thoughts on this? Our Pandas/Lyme Integrative physician seems to think he is more of a severe encephalitis that never received intense immediate consistent treatment, than he is lyme and co, partly because of the miraculous response we have to Steroids and IVig probably. Almost ALL symptoms resolve, headaches subside, neurotypical kid goes to school everyday. The transformation is remarkable.

 

We are retesting the Igenex results once again, we do this regularly after treatment sessions with different antibiotics.

 

But either way we treat Lyme, erlichia, bartonella, pandas etc. He has also had numerous strep, EBV, MycoP, Chlamydia Pneumonia, swine flu, Lice bites on his head, mosquito reactions, etc. He does not seem to improve on any antibiotics anymore, plus he enters refusal stage as illness progresses. I was considering homeopathy but not sure I want to stimulate the immune system as his physician is now leaning more toward suppressing it to avoid relapse since he is in a great place 3 months after IVig. Very neurotypical kid again although still some reduced OCD. We cant figure out if the relapses are just the remitting/relapsing course & turning back of pages with Pandas or if they are Tic borne relapse so we continue to test and treat. I have a hard time imagining there will not be further relapses given his extreme history. But given the lack of antibiotic response and severity of his compromised life we move to IVig when we just can survive another day of this. Also he did an intensive residential program at Rogers to get through the worst of the post IVig weeks.

 

He is 12, acute onset at 9 with strep however many missed symptoms since age 3 and younger.

Edited April 13, 2014 by pandasphilly