23 yr old female with PANDAS?

[megmo725]

Hi there,

I am a 23 year old female. I've been doing quite a bit of reasearch on PANDAS lately, and everything is just pointing to it. I developed a sudden onset of severe OCD at the age of 10, followed by a sudden onset of Anorexia at age 15. I also had PLMD at age 16. And at age 21, I started getting tic like sypmtoms and body movements (I'm not really sure if they were present when I was younger as well). As a child, I was in the doctor's office almost every month getting a throat culture for strep or had some sort of ear infection. I was sick quite often as a child. I even remember having a fever of 107 at the age of 2.

My question is, does anyone know if antibiotics could help an adult who possibly has PANDAS untreated? I have tried countless treatments and therapies and medications for my OCD and anorexia and nothing has helped. I feel like things just keep getting worse, and I just want some relief. I remember being totally fine as a child, and the one day waking up and feeling like my world turned upside down and had no idea why I was doing the things I was doing. This happened with the OCD and Anorexia. No previous implications of it, just literally overnight.

Does anyone know (or suffer themselves) and are older? Is there anyway to know if it's PANDAS even though I am older now - symptoms never got better over the years, only worse. And of course al ldoctors do is just push this SSRI or that SSRI. I'm worried it's too late in the game to test for anything or possibly treat it. It wasn't ever a known thing when I was younger, and I've even tried to bring it up to doctors now, but I'm just looked at like I have 10 heads.

I just want to be okay and recover from these horrible symptoms that didn't plague me for years. If anyone has any words of support or anything they could offer/advice/anything at all - it would be greatly appreciated. I feel like I am trapped in my own body and have been for years.

Thanks everyone.

[Chemar]

bumping up new member post for responses

[dasu]

I have absolutely no expertise on the subject but I do know that our specialist shared a story of a 19 year old man who went from institution to recovery. Treatment required IVIG and PEX, I think.

[PIK]

I absolutely think it can and does carry into adulthood. I had a similar experience with overnight onset OCD at 14, anorexia at 12 etc. etc., and my poop did not hit the fan until 28 when they were saying I was schizophrenic. I'm not schizophrenic at all. I found relief from the OCD with Anafranil. I went and saw Dr. T in New Jersey, who was not very helpful. Doctors don't seem to want to listen.

[ktdommer]

My experience with PANS is having a son born with Lyme develop PANS. In his case antibiotics took away bipolar Type symptoms. He is 19 now. Not so much PANS anymore as autoimmune and Lyme. He also did IVIG and had some improvement with psych issues.

So to answer your question, antibiotics could be a game changer if Lyme or other lingering bacteria.

Tell us more about yourself. Where did you grow up? Did you have a dog or cat? Did you camp or hike? Any physical symptoms? Many women with Lyme have a terrible time with symptoms flaring before their periods. Can you work? Strep history?

I don't believe it is too late at all. You just need a good doc and a treatment plan. Be willing to make diet changes and take supplements. Some things you can start now once you learn more.

Wishing you the best,

K

[megmo725]

I grew up on Long Island (still live here). I do have 2 cats and 2 dogs (always have). I've never been camping, but I have been hiking. I went away on an overnight class trip when I was 10 for 3 days at this wildnerness place in Upstate NY, in the woods. I've also traveled a lot on the east coast for soccer tournaments. I don't ever remember being bitten by a tick or getting a rash or anything though.

I do have physical symptoms and I actually just went to my doc yesterday who referred me to a neurologist. MS came up in a conversation once but nothing else. My general bloodwork is good. I'm extremely fatigued, even post exercise. My back/legs get tingling sensations with pins and needles. sometimes burning/stiffness/heavnienss/jello like feelings. My muscle weakness in my right hand and right leg, and my joints ache sometimes too. 2 days ago, I could barely walk or stand for longer than 5 minutes at a time, it happened to be a pretty bad day. I felt like my legs were just going to give out and I was going to collapse. Yet today I woke up feeling relatively good so I tried a short run balance was a bit off here and there, but nothing major. Eye pain and twitching. Sound and light sensitivity, and tic like symtpoms (uncontrollable facial stuff or jerky arm/leg movements). I'm pretty heat intolerant too, especially at night.

I mentioned getting blood test done to check for autoimmune stuff but my doc just brushed it to the side and just said to get to the neuro as soon as I can so I can get an MRI of my brain and spinal cord.

It's hard to make diet changes because I am in recovering from Anorexia (which I think was an onset due to this) but long story short, my dieitian is very set on me not excluding anything from my diet because it can become "too restrictive" or "disordered." It's frustrating. I was on a supplement called inositol which did help with OCD symptoms so I might start that up again.

I'm going to go to the neuro and I guess just take it from there!

[searching_for_help]

megmo,

 

I had a positive Lyme test, and I've never had the bullseye rash, or remember pulling a tic off myself. We are in the Midwest, where an infectious disease doc said there is no Lyme in our state, but he's an idiot, as the CDC says different. (Sorry - I had a bad experience with this doc!)

 

The confusing thing for me, is why everyone acts like it's so rare or difficult to get a tick bite. Good grief - we were all covered with ticks in the spring just walking across our yard to get to the garden! We don't live in the woods - we have neighbors on all sides. We do have deer that come through, though.

 

Do remember that Lyme is often misdiagnosed with MS. Also, I don't have time to look it up right now, but there is a guy, I think his name is Bruce Fallon, and I found a paper he wrote about Lyme causing neuropsych issues including anorexia. If you can't find it, I'll try and search for it later.

 

If you have Lyme, a regular doc will probably NOT help you. You'll need a lyme literate doc.

[megmo725]

searchingforhelp,

I'm sorry you've had such an issue with that one doc. My regular doc has brushed so many things to the side so I can feel your frustration. I mentioned getting tested for lyme, but he totally blew it off.

And yes, I know Lyme is often misdaignosed with MS. I worry about finding a doctor that specializes in lyme as far as insurance goes, so I'm hoping that I can find a way around that!

Someone else mentioned lyme to me. and i've also heard that not everyone has the bullseye rash or even remember getting bit! I guess it's just can symptoms occur years later or flare up a while after?

And thanks, I'm gonna try searching about that connection now!

Sending you positive vibes

[rowingmom]

Please don't discount infection as the cause of your physical and neurological symptoms. Our daughter was a mess when I finally broke down and found a LLMD. She has recovered.

 

I imagine she would still be suffering at age 23 if we hadn't found the culprit - lyme, bartonella and babesia.

Edited December 22, 2014 by rowingmom

[ktdommer]

I imagine a mainstream neurologist is not going to be much help on the Lyme front.

I was misdiagnosed with Lupus for years. So much pain, so many symptoms, ANA positive. Now I am pain free, nearly symptom free and ANA negative. I never had Lupus, it was Lyme imitating Lupus. That diagnosis was from a huge university.

My son's FMS diagnosis came from a top notch Midwest clinic. All of it cleared up with IV antibiotics. He also had days he couldn't walk. Became bed bound.

Unfortunately your chances of finding a good LLMD who takes insurance is slim. You will have to find a source of income for a doc that can help you. Think of it as an investment in your health.

There is a foundation called Lymetap that helps pay for up to 75% of testing through Igenex. I wouldn't test anywhere else. You might want to do an abx challenge prior. Good Lyme doc will know what to do. In hindsight I would have only tested western blot I gG and IgM for $198.00. my opinion obviously.

Your MRI may show MS but they could be Lesions from the Borrelia. My sister's white matter/ lesions improved with Lyme treatment.

We saw MANY specialists for years prior to his crash. Nothing helped until he started seeing an ILADS as doctor.

How is your mother's health? Any chance you have congenital Lyme?

If you want help with finding a doctor, a good site is LymeNet. You can post under seeking a doctor. Be sure to put the state or states in the heading. Let people know if you are willing to travel.

[PowPow]

Brian fallon does neuropsych lyme stuff.

Was in NYC- @ Columbia university