PANDAS/PANS has destroyed pretty much everything I have attempted since childhood

[thgonace]

Hi

 

I am a 27 year old male who lives in Toronto, Ontario, and I have had a PANDAS infection since I was around twelve years old. During the eighth grade I came down with severe OCD symptoms, self harming behavior and just general misery that lasted for years and destroyed every aspect of my life.I was unable to go to high school, and spent most of life indoors for the next several years. The ordeal had a negative effect on my personality and resulted in me having a difficult time communicating with other people. When I was 16 years old, I got a diagnosis for OCD which allowed me to obtain the SSRI fluoxetine, which helped a great deal with the depression/OCD symptoms. At around 20, the OCD symptoms began to subside and I was able to go back to school/college. However, after graduating I was unable to find any kind of lasting employment, no one wanted me.

 

Around two and a half years ago, I started experiencing OCD and an Inability to sleep which once again started destroying my life. I lost around 20 lbs and the ability to control my thoughts. Although I wasn't thinking clearly at the time, I was able to do enough research online to conclude that I had a PANDAS infection and have had it since I was a small child. It is my belief that I was injected with a step infection which triggered my existing PANDAS autoimmune condition, which took me about a year to get under control.

 

After the attack, I did everything in my power to get a diagnosis with PANDAS. It took many visits with a psychiatrist in order for me to convince him to get me a blood test for the strep antibody. By the time I received the blood test I was feeling significantly better and was not surprised by the test results being negative. Since I was completely lost on what to do next, I had no choice but to give up any hope of getting a diagnosis for PANDAS

 

Now I believe that my inability to sleep and urinary frequency issues are caused by my PANDAS condition. Every night I get up around 5 or 6 times to go to the washroom and often have a difficult time going back to sleep again afterwards. I also have many mood swings and a difficult time concentrating which is either caused by the condition or is a side effect of having to live with the condition for so many years.

 

Living with this illness has destroyed most of what I have tried to do with my life. From finding employment, to holding friends or even maintaining some basic hobbies, everything has just ended very poorly for me. Nothing I have done in the past 15 years has ever gone as planned, it has just been one setback after another. I can't believe the things I have had to live through, it is painful and depressing just thinking about.

 

If anyone has any advice on what I should do in order to get a diagnosis or improve my life feel free to leave a comment/s

Yes, I am confident that my problems revolve around a PANDAS infection

 

 

Thanks

 

 

[Chemar]

Hello

I am bumping up your first post so others can respond

[bigmighty]

My son has PANDAS and, while I have never been diagnosed, I develop tics when near someone w/strep and also have had some of the issues you mention. Strangely, when my doc suggested I take garlic supplements (nature's bounty odorless garlic softgels), my restroom urge frequency disappeared almost completely. Every time I forget to take the garlic, it comes right back. I was not getting any restful sleep with all of the night waking, so that has been a huge blessing. Here's a link to the garlic - it's more expensive here than at my local grocery store though. It's carried almost everywhere - http://amzn.to/1xspZUQ

 

With respect to anxiety, I have done well with CBD Hemp Oil (lots of threads about it on this board if you search). I hope you are able to find a way forward that gets you some relief. You sound exhausted. Sending virtual hugs.

[melmix]

I think you need to get tested for PANDAS/PANS which is much more than strep titers.

You could have mycoplasma or viruses causing the flares or you could have initially gotten PANDAS

from strep and now are having flares from other things. You should get to a PANDAS specialist

who can run all of the different tests. I am pretty sure Dr T sees adults.

Melrmix

DS 8 PANDAS/PANS/Lyme

[BeeRae22]

I agree with Melmix.... Have you seen a pandas doctor? What tests have you had? Maybe not Pandas, but Pans and/or Lyme? You've written a lot about your symptoms, but not that much about treatment. I'm just wondering if you've tried abx, steroids, etc. if you're convinced that this is Pandas, than you should see someone knowledgeable. Best wishes.

[Mayzoo]

Here is a doctor in Canada. Not sure how close it is to you:

 

CANADA
http://pandascanada.wix.com/pandascanada

• Dr. Ayla Wilson, ND
  Naturopathic Medicine
  Vancouver, BC
  604-988-1411
  Email available through contact page of office’s website

[thgonace]

Hi everyone

 

Thanks for the replies.

 

My son has PANDAS and, while I have never been diagnosed, I develop tics when near someone w/strep and also have had some of the issues you mention. Strangely, when my doc suggested I take garlic supplements (nature's bounty odorless garlic softgels), my restroom urge frequency disappeared almost completely. Every time I forget to take the garlic, it comes right back. I was not getting any restful sleep with all of the night waking, so that has been a huge blessing. Here's a link to the garlic - it's more expensive here than at my local grocery store though. It's carried almost everywhere - http://amzn.to/1xspZUQ

 

With respect to anxiety, I have done well with CBD Hemp Oil (lots of threads about it on this board if you search). I hope you are able to find a way forward that gets you some relief. You sound exhausted. Sending virtual hugs.

I will try using garlic pills in order to get a better night sleep, the restroom frequency is becoming a serious problem. The anxiety is under control when I do not have an infection, so there is no need for additional medication at the moment. Thanks you for the virtual support.

 

I think you need to get tested for PANDAS/PANS which is much more than strep titers.

You could have mycoplasma or viruses causing the flares or you could have initially gotten PANDAS

from strep and now are having flares from other things. You should get to a PANDAS specialist

who can run all of the different tests. I am pretty sure Dr T sees adults.

Melrmix

DS 8 PANDAS/PANS/Lyme

I have tried to get a diagnosis for PANDAS in the past, but have had no luck getting a doctor to treat me for that. Doctors have given me prescriptions for some of the symptoms, but not for the PANDAS itself. I don't know how to go about getting a doctor to order a proper test for this, most don't seem interested and just offer medication for the current symptoms. It took a lot of work to get the strep titres test and I am unsure on how to move forward at the moment. Hopefully, someone here can provide me with some advice,

 

I agree with Melmix.... Have you seen a pandas doctor? What tests have you had? Maybe not Pandas, but Pans and/or Lyme? You've written a lot about your symptoms, but not that much about treatment. I'm just wondering if you've tried abx, steroids, etc. if you're convinced that this is Pandas, than you should see someone knowledgeable. Best wishes.

I have never seen a doctor who specializes or treats PANDAS, and apart from the strep titers, nothing has been tested. Since I have received no treatment for the PANDAS itself, all I can write about are the symptoms. I am convinced this is PANDAS/PANS due to what I consider to be concrete evidence in the sudden onset OCD, difficulty sleeping and frequent urination. I am unsure on how to go about talking to someone knowledgeable about this subject, so it doesn't matter what I am convinced of.

 

Here is a doctor in Canada. Not sure how close it is to you:

 

CANADA
http://pandascanada.wix.com/pandascanada

• Dr. Ayla Wilson, ND
  Naturopathic Medicine
  Vancouver, BC
  604-988-1411
  Email available through contact page of office’s website

 

 

This doctor is halfway across the country and outside of my health coverage. Still, I shall take a look at the pandascanada site and see if I can find anything that will help me. Thank you.

Edited March 26, 2015 by thgonace

[Mayzoo]

Many of us pay out of pocket for our pandas docs. I pay for all kiddos doc appointments and I never meet her deductible for out of network, so none of it is refunded. It is "unfair", but it is really my best course at this time.

 

We used to travel about 1500 miles (one way) for kiddos neurosurgeon for another rare condition she has. I am fortunate in that our PANDAS doctor is only an hour and half away. Many folks travel much more than that, across a state or several states. PANDAS docs are just not that prevalent yet.

[Everem]

You said your OCD got getter at around 20. Did you notice anything change to make it worse? Or anything different while it was better?

 

 

Do you think since the test came back negative that it could possibly be something else?