Adult PANDAS?

[Spartan32]

I was wondering if PANDAS in adults exist? I am 25 years old with tics, GAD, and OCD. Here is a little timeline of my symptoms.

 

Age 6: Barking vocal tic for 6-8 months from what my parents remember

Age 7-10: No symptoms

Age 11: "Hum" vocal tic for about a year.

Age 12-14: No Symptoms

Age 15-25: Head Shake Tic

 

Since the end of November, I developed about 4 new tics. A vocal tic, a blinking tic, a facial grimace tic, and a shoulder tic. They did not all appear at the same time but slowly over the course of the last 2 months. My OCD is as high as ever. It is probably worse because these new tics are causing me an unbelievable amount of stress.

 

A few things that have changed for me over the past 6 months.

 

June 2012: I started seeing an NUCCA chiropractor in hopes of him relieving my one and only head tic. It did nothing for my tic and I am afraid that this could have caused these new tics. I saw him from June until early October twice a week.

 

June 2012: I took Bactrim DS for my adult acne (I just can't win), for 2 months.

 

December 22, 2012: I got cellulitis on my chin which required 2 weeks of doxycycline.

 

 

Few more things about me:

 

- tonsils and adenoids removed as a kid

- strep throat a few times as a kid.

- seasonal allergies since I was a kid and asthma as a kid

 

 

I really do not know what to do at this point. Something is clearly wrong as for the past 10 years, I have had 1 tic which I learned to live with. I live in NJ and saw that Dr Trifiletti is only a few hours away from me. The cost of seeing him seems extremely high though and I don't know if I can afford that now. Are there any other doctors in New Jersey, Pennsylvania, New York, or Maryland who treat PANDAS? Is PANDAS even a possibility at my age? Thanks in advance.

[3boysmom]

I do think that it is definately worth looking into an infection of some type. Your best bet is Dr. T. because he will know what tests to run and the other PANDAS doctors are also expensive. Look into yeast issues as well as viral issues along with strep titers and mycoplasma....oh, and Lyme.

 

Best of luck(I bet you find something....)

 

Linda

[Megan]

I would start with a check for lyme, as it can cause tics. You should try to find a LLMD (lyme literate MD). You can research a bit on www.lymenet.org go to the flash discussion and you can post to see what others think. It is the best lyme site in my opinion. Do you have any other symptoms such as fatigue or migrating muscle pains or headaches or sleep issues? It can be subtle.

[3boysmom]

Our son got OCD from strep and 3 years of PANDAS with no tics until 2 months ago. We have tested for Lyme several times and always negative. This time we found that he had a hidden Coxsackie Virus. He has been improving on antivirals. Tics are much better now that he is on the right antibiotic. So his tics came from a virus.

 

Linda

Edited January 24, 2013 by 3boysmom

[Spartan32]

I do think that it is definately worth looking into an infection of some type. Your best bet is Dr. T. because he will know what tests to run and the other PANDAS doctors are also expensive. Look into yeast issues as well as viral issues along with strep titers and mycoplasma....oh, and Lyme.

 

Best of luck(I bet you find something....)

 

Linda

 

Thanks for the info. I will probably end up seeing him regardless of the price as he seems to be a trusted doctor here.

 

 

I would start with a check for lyme, as it can cause tics. You should try to find a LLMD (lyme literate MD). You can research a bit on www.lymenet.org go to the flash discussion and you can post to see what others think. It is the best lyme site in my opinion. Do you have any other symptoms such as fatigue or migrating muscle pains or headaches or sleep issues? It can be subtle.

 

I never thought of lyme but I will definitely look into that as well. Honestly, I have no other symptoms. I fall asleep easily, stay asleep for at least 8 straight hours, plenty of energy, never headaches or muscle pain.

 

Basically my tic, now tics , anxiety, bruxism, and stress are my issues.

[bigmighty]

Try anti-inflammatories and see if there is any change in the tic. Maybe take ibuprofen 3x a day for a week. If the tic reduces, it might be a clue that something like lyme or a PANDAS-type autoimmune issue could have caused brain inflammation? That might be enough additional info to make you decide you want to continue down this path and pay for an expensive consult with a specialist.

[dcmom]

spartan-

 

I agree with the others. I really think Dr T is your best bet, esp as an adult.

 

He will take a history, run a panel of tests, and help to determine if you have pandas. He will then try to TAILOR your treatment. Most likely you will do a course of antibiotics (1 to 2 months). If it were me, I would inquire if you could add regular advil dosing for the first week or two. If you don't get enough results, he may prescribe a round of steroids. (for my kids the immunomodulation of steroids has been the most effective treatment).

 

I also suggest finding a really good therapist. We have seen that when our kids have these issues unchecked for a period of time, they become more ingrained, and they need some help to break the pattern.

 

Good luck!

[LNN]

I think the question isn't whether you can have Pandas as an adult. If you have Pandas, it seems you developed it as a child and it remains untreated as an adult. So you're not asking about adult-onset, you're asking about adult-continuance, which I think is absolutely possible if you've been untreated your whole life.

 

You're unlikely to find a conventional doctor, who accepts insurance, who's going to pursue Pandas with you. So Dr T will probably be you're best starting point. However, there are some preliminary tests you might be able to get your PCP to order as a first pass:

• 
   
  
• ASO titers (these are antibodies to strep that rise w/in 1-3 weeks of infection)
  
• Anti-DNase B titers (these are strep antibodies that rise 3-6 weeks after infection)
  
• C3d immune complex - this measure how activated your immune compliment system is - indicating whether your body is fighting an active infection (won't tel you what sort of infection - it rises with both bacterial and viral - but will tell you if your immune system is reacting to an infection)
  
• C3a and C4a immune markers - these tend to rise when your immune system is reacting to lyme and mold
  

 

If any of these are high, it suggests infection/immune response. Lyme and mold are also tic triggers. A conventional lyme test (called a western blot) is not reliable because it will not look for certain markers that are highly associated with Lyme. If anyone runs a western blot and tells you it's negative, it means nothing. Maybe you don't have lyme, maybe you do. Because it's not testing for the whole picture. However, if the western blot comes back with positive markers, then you could avoid the more expensive testing options.

All of the above tests, including the western blot, are covered by insurance. So you could start with your PCP if s/he is willing to order these things, and then decide whether to see Dr T.

 

In addition to a consult charge, Dr T likes to order a number of blood tests. So anything you can do beforehand may be helpful.

If you would like research articles on lyme, mold, or some of the tests mentioned above, PM me. You can also look into the topic of mold here http://www.survivingmold.com/ and the topic of detox here: http://www.publichealthalert.org/Articles/scottforsgren/biotoxin%20pathway.html

 

For my son, tics are directly correlated with his reduced ability to clear biotoxins (toxins released by infectious bacteria). Understanding methylation and the body's need for glutathione to help itself detox is very helpful regardless of any infection. Because when the time comes to fight a chronic infection, the germs are going to release dirty bombs inside your body and it's important to be able to clean up and expel the poisons and reduce inflammation damage. Here's one last article an glutathione you may find helpful: http://www.huffingtonpost.com/dr-mark-hyman/glutathione-the-mother-of_b_530494.html

 

Best of luck.

[KaraM]

Dr. Bouboulis also believes it is possible in adults and treats some in his practice. He's an allergist/immunologist. He does accept insurance (at least ours and we are from out of state).

He is in Darien or Stamford CT.

[mommybee]

I was wondering if PANDAS in adults exist? I am 25 years old with tics, GAD, and OCD. Here is a little timeline of my symptoms.

 

Age 6: Barking vocal tic for 6-8 months from what my parents remember

Age 7-10: No symptoms

Age 11: "Hum" vocal tic for about a year.

Age 12-14: No Symptoms

Age 15-25: Head Shake Tic

 

Since the end of November, I developed about 4 new tics. A vocal tic, a blinking tic, a facial grimace tic, and a shoulder tic. They did not all appear at the same time but slowly over the course of the last 2 months. My OCD is as high as ever. It is probably worse because these new tics are causing me an unbelievable amount of stress.

 

A few things that have changed for me over the past 6 months.

 

June 2012: I started seeing an NUCCA chiropractor in hopes of him relieving my one and only head tic. It did nothing for my tic and I am afraid that this could have caused these new tics. I saw him from June until early October twice a week.

 

June 2012: I took Bactrim DS for my adult acne (I just can't win), for 2 months.

 

December 22, 2012: I got cellulitis on my chin which required 2 weeks of doxycycline.

 

 

Few more things about me:

 

- tonsils and adenoids removed as a kid

- strep throat a few times as a kid.

- seasonal allergies since I was a kid and asthma as a kid

 

 

I really do not know what to do at this point. Something is clearly wrong as for the past 10 years, I have had 1 tic which I learned to live with. I live in NJ and saw that Dr Trifiletti is only a few hours away from me. The cost of seeing him seems extremely high though and I don't know if I can afford that now. Are there any other doctors in New Jersey, Pennsylvania, New York, or Maryland who treat PANDAS? Is PANDAS even a possibility at my age? Thanks in advance.

 

Dr. Bouboulis has offices in Darien and Stamford, Connecticut. He treats adults and takes insurance. We see him and I have great respect for him. If it were me, I wouldn't be asking for any particular blood tests. I'd get in with a doctor who treats PANDAS/PANS and let him decide what labs to run. Dr. Bouboulis is an allergist as well as an immunologist. He is well versed about allergic triggers. You say you had a worsening of symptoms in November that continued over several months and that were treated for cellulitis in December. Cellulitis, while usually caused by a staff infection, is also often caused by strep. It wouldn't seem that a two week course of doxycycline would effectively treat a strep infection, but I'm not a doctor.

 

I do agree with the others that what you're describing isn't adult onset. It started when you were six years old and had the classic saw tooth progression with each episode being worse than the one that preceded it. I think it makes sense investigate with a doctor who treats PANDAS/PANS because you may be able to get better.

 

Good luck.

[Spartan32]

Thanks for all of your replies. Very helpful. Here is my biggest concern. I have read that some of the methods that are used to treat PANDAS are things that are discouraged against for people with classic Tourette's Syndrome. I have read on the "Tourette Syndrome and Tics" forum that people with classic Tourette's that have taken steroids such as prednisone have had huge increases in current tics and sometimes new tics added. One of the other recommendations that is made is to heal the gut and clear possible candidas. Long term courses of antibiotics would not help with that and possibly make my gut situation worse (if it's actually bad in the first place that is).

 

My question is how thorough are these doctors in making the diagnose of PANDAS and beginning treatment? Is it somewhat speculative where he may think I have PANDAS from blood work so he will give me a course of antibiotics or prednisone to see what happens? While I really want to pursue this and still may, I am scared that I have classic Tourette's and using antibiotics for a few months or a steroid will make my problem worse long term. I am new to this so I may be wrong but my OCD is making me consider all possibilities

[3boysmom]

If you see Dr. T., then it would be great to express those exact concerns with him. I'm sure he has heard these questions before and will have some good answers for you. Very reasonable concerns, but you are off to a smart start by making your list of questions and concerns !

 

Linda

[mommybee]

I don't believe that abx will have any negative effects on TS, but I'd stay away from steroids if possible. They are known to make tics worse and are containdicated for Lyme because they depress the immune system.

[Spartan32]

UPDATING. Since I made this thread, I decided that PANDAS was worth looking into. I have made an appointment with Dr. Bouboulis. The good news is that he accepts my insurance. The bad news is that the earliest appointment is in the middle of August

 

I have also gotten cellulitis again from what is probably either staph or MRSA. It is most likely the same infection that I got in December but the 2 week course of antibiotics didn't wipe it out. They are going to test my nostrils after this infection clears up. I caught it quicker this time than last and got back on Doxycycline about 24 hours after the swelling started. It is half inside my nose and half on the outside so it is extremely painful but thankfully it did not spread to my eyes and brain as it will tend to do when it is in the area that I have it. So now this is 2 staph infections in less than 2 months. I am really interested to see if this could be affecting my immune system and bringing out symptoms. I still think strep could be a factor as well as I had that a ton of times as a kid so we will see.

 

From my research, Dr. Bouboulis is the doctor that I really want to see. I do not want to wait 6 months though. Any other recommendations for doctors in PA, NJ, NY, CT, DE, and MD? I know Dr T has been recommended but I do not want to see him as some reviews on him have put me off.

Edited February 25, 2013 by Spartan32