21 year old with possible PANDAS

[Mikeb123]

Hi everyone, my name is Mike and I'm 21 and I'm pretty sure I have PANDAS. If I were to tell the full story of my current issues that would take 10 paragraphs so I'm going to try and be as brief as possible.

 

When I was around 4/5 I had an abrupt ocd flair up due to a strep infection. My mom, who passed away in 2013 (which makes this current issue much more difficult,) told me and the therapist I see that it was pandas. Since I was so young I don't remember how the strep was fully treated, although I have some idea, which I will get to later, and that's that. Anyways for the majority of my life I have dealt with very manageable ocd. I don't remember when the pandas level ocd stopped but from the age 11-17 I was great. I took lexapro and saw therapists here and there when needed during this time.

 

Back in 2011 I had a flair up of very bad ocd after wisdom teeth surgery, don't know if it was the medicine I took for the recovery or what, but just like pandas it came out of nowhere one night and caused a lot of stress for me and my family. After about 4 months of jumping around medications and talking to my therapist it improved. In 2013 a similar issue came up from taking a solo flight cross country, those symptoms also went away after a couple months.

 

Now let's fast forward to my current issue. In October of 2015 I began to feel sick. I live on a college campus so I've been sick in the past and typically now how to deal with it (emergence e packs, going to the gym, resting) none of this worked this time around. Actually a bunch of my friends seemed to be having similar physical symptoms as me during this time, but while there issues would go away in a week or two, mine wouldn't go away. I was having some throat pain and tickling and knew about my past pandas issue so I went to the doctor after one day of high anxiety and throat issues. I asked for a strep test. Both the instant and culture came back negative, so I breathed a sigh of relief and told myself to wait it out. Then my throat pain became a lingering cough. After a couple of weeks I thought it might be bronchitis, I went back to the doctor and they gave me a z pack. It didn't work at all. Now I was getting discouraged, I went back to the doctor (at this point it was mid-November) they perscribed me levaquin. I ended up also finding out around this time that my strep culture was never sent out and that the negative result they gave me was complete BS. I was obviously livid and asked for another test. After leaving the office I remembered that my mom had given me one medicine in particular to deal with my pandas flair up as a kid that worked pretty well. I called my old childhood doctor and found out the medicine was ceftin so I took the ceftin and never actually took the levaquin. A couple days later I got a call saying the new strep test was negative (which I wasn't surprised about since at that time I wasn't having throat issues) after 10 days of ceftin my cough and 90% of the physical symptoms were gone but my anxiety was still there and bad. This was now around thanksgiving. For the next month I would continue to feel increases in horrible anxiety. Strong moments in the day where basically everything scares me but then other parts of the day where I felt as good as I did pre sickness. The bad moments are so bad though that I have continued to see my physician to see what I can do. He doesn't believe my anxiety is all casued by pandas since I'm 21 and not a kid but he keeps telling me that I have redness in my nose. This has made me believe that maybe that strep I thought I had has become stuck in my sinuses, and that that is what's causing my issues. I tried a second dose of ceftin, didn't really help (stopped half way through with doctors encouragement) I also started taking lexapro again for the first time since 2013, just 5mg, about a week ago, and that too hasn't really helped all that much.

 

So now this is where my question comes for you guys. I'm getting my ASO and antidnbase done tomorrow and my most recent strep culture should be coming in this week. If ether of those two come back positive are there any antibiotics you recommend to get rid of the strep (I am allergic to penicillin by the way.)

 

And then on the other side if both of these come back negative is there any idea you guys have about what could be causing my horrible anxiety. My therapist is pretty stern in thinking they this is all just the ocd I've always had but just to a higher degree: but he really doesn't understand how bad this current anxiety is, plus the fact that I'm still showing sick symptoms and that my mom was positive my intitial ocd problems was caused by an infection really makes me feel that this anxiety flair up is related to my now almost 3 months of sickness.

 

Sorry for the super long post and thanks to anyone that can be of assistance!

 

Mike B

[searching_for_help]

Most doctors are clueless - but PANDAS doesn't just go away when you hit a certain age! My 23 year old is still struggling, and we know several other adults with the same problem. It's a shame the "P" in PANDAS stands for pediatric - because some of the top docs know it doesn't just go away.

 

If you want to share the general area you live in, someone on here can direct you to a doc that can help. It IS harder to get help after 18 - this has been quite a struggle for us. But there is help, if you find the right doc. Also, finding what is triggering your symptoms is important - it's not always strep. Our dd has Bartonella and probable Lyme, but it was strep and viruses that really triggered her for a while.

 

I'm so sorry you are going through all of this. If you need another young person to share your struggles with, my dd would be glad to talk with you, and she has a couple of other young adults with the same problems that she messages. Her depression and anxiety was so horribly severe she couldn't talk with anyone about it until recently, but she is relieved to have others to talk to about this disorder.

[Mikeb123]

I am from northern Virginia and am considering making an appointment with Dr. Latimer, I just wanted to wait until I was sure what this was and get all my options out of the way first since her appointments are not cheap and they take a while to get.

 

I would love to talk. I just don't know how I could contact you, since this is my first post on this website.

 

Thanks for responding!

[searching_for_help]

Yes, Dr. L's appointments are very expensive. I hope someone from that area can chime in with other ideas. We have a nurse practitioner who doesn't specialize in PANDAS, but is open to learning and she accepts insurance which helps greatly, but we are in the Midwest.

 

I can have my daughter contact you when she gets a chance - just check near the top of the page for the envelope - when you get messages there will be a number by it. I know she corresponds with another PANDAS young man from the east coast, also.

[dasu]

I am sorry to hear of the years you have suffered with issues. I am glad you are taking some steps to consider what the root cause is though and wish you the best in that effort.

 

The wait for Dr L is running 4 months. The good news is that PANDAS awareness is increasing, the bad news is that the specialists are overrun.

 

Your strep numbers may or may not be helpful but don't rule out PANDAS. Many/most doctors have the notion that if there is no strep infection, that rules out PANDAS. The are other infections - Lymes/coinfections, mycoplasma, HHV6 etc - that may be triggering or suppressing your immune system and it would be wise to get those tests done now while you wait. That can be done through any supportive doctor, or a Lyme doctor such as Virginia Integrative Health. Dr L, incidentally, is primarily a strep doctor and is reluctant to explore issues like Lyme, so it may also be helpful in selecting a doctor.

[Mikeb123]

I'm trying to be optimistic and tell myself that once my sickness goes away that these horribly high levels of ocd will go away too.

 

I have had ocd my entire life but while normally I'm at like. 7 or 8 out of 10 in managing it, now it feels like I'm at a 1 or 2. It's hard to explain why it's so bad but it is.

 

And yeah dasu I should be getting the results for my strep culture and ASO/antidnbase bloodwork by Friday! When I see my doctor that day I will bring up possibly getting bloodwork to see if I have the other things you mentioned.

 

It's been 3 months now and I'm really sick of the anxiety, I'm at a point where I'm down to try whatever