Adult with PANS

[Guest]

Hi there, I am a 27 yr. old female who was just diagnosed by Dr. T with late-onset PANS.

 

I wanted to talk a little bit about my history, problems I am facing now, and some of my lab work.

 

 

I started having problems at age 7 with extreme overactive bladder which is now diagnosed as "IC". At age 15 sudden sharp burning pain in shins which I still have. At 18 developed anorexia nervosa, along with it came chronic tiredness and bad insomnia. I was just diagnosed with depression and treated with MANY medications and eventually ECT, none of which were helpful. I got somewhat better with ANA but had bad BDD and developed very bad bulimia in 07 at which time I also developed movement disorder only with my arms. In 08 I had a sudden onset of severe SEVERE GAD and my heart was tachycardic 24/7/felt like I was running on adrenaline. Trying to finish 2 year degree but getting only 0-2 hrs of sleep in 24 hr period for 6 MONTHS. I could not stop heart rate and that is later diagnosed as dysautonomia: POTS (hyperadregenic).

 

Where is gets bad is January of 09. I wake up with fatigue so severe I cannot leave my bed for an entire year. Still no diagnosis. I felt like I was dying and sleep wasn't restorative at all (aged 22?). In 2010, sudden onset of OCD which has only gotten progressively worse month after month with no relief from ssri's, benzos, atypical antipsyhotics, or anaphranil. In 2010 I am able to get out of bed but have horrible post exertional malaise (PEM) am diagnosed by 2 doctors with CFS (chronic fatigue syndrome) - see 2 well known CFS doctors who can't help me at all. Immunomodulators gave me violent reactions and Xyrem didn't help me sleep and messed with my bladder and anxiety.

 

2 months ago somebody got me in touch with Dr. T and was diagnosed with late onset PANS which perhaps started when I was a teenager.

 

Labs:

elevated Anti-DNase B (224)

 

No evidence of lyme or co-infections. (I went through lyme treatment, abx for 8 months, no help whatsoever and got very bad c-diff)

 

IgG4 low

IgA2 low

Basophils are absent

 

Positive for Coxsackie A and B

 

Mycoplasma pneu. (high titers 141)

 

 

 

Current treatment: I was put on valtrex, first round did not help, so going for 2nd round.

I take a lot of downers: klonopin, xanax, zyprexa, bystolic (beta blocker), and very low dose zoloft. Everything is in tiny doses b/c I have crazy sensitivity to meds. I also have very bizarre reaction to medications so he wants to do some kind of saliva genetic testing. Excessive daytime sleepiness horrible but stimulants crash me and make fatigue and sleepiness worse.

 

I can't stop the ocd even though I've been in therapy for 5 years and tried many medication. It's magical thinking not germs. Obsessed with bladder and sleep. The fatigue is more correlated with CFS but as ya'll probably know, there's no treatment for it.

 

 

 

 

Other than that, my dad just left us. He says I am malingering and is not willing to learn anything.

I have 2 puppies that I love and adore. I do photography and have a nice flickr account going. And I was a great musician before getting sick, I can still play and write songs every so often. I am mostly stuck at home in bed with obsessive thoughts wizzing through my head 24/7.

 

 

I would like to meet other adult patients also.

 

I am grateful to find this forum and I also belong to a social media site specifically for young adults with neuro-immune illnesses - we have chats, video friday night chat,s we are starting hobby groups, and we have active forum if any interested please let me know.

 

- Chris

 

p.s. Has anybody found that they eventually got help with ocd b/c it's ruined my life?

Step #1 - valtrex

Step #2 - genetic testing (try and figure out severe sleep and med problems)

Step #3 - IVIG

 

.............would removing tonsils be good idea (I've had problems with them since I was a child, infected all the time) and antibiotics did not help and gave me bad c-diff

Edited April 12, 2013 by Guest

[rowingmom]

Is Dr T treating you? Are you taking any abx at the moment? You have said that both times you took abx, you developed C diff. Were you taking any probiotics at the time? Did you use a combination of abx? A lot of our children have taken longer than 8 months on multiple abx to find stable improvement, especially when lyme/coinfections are involved. When you mention shin pain, and heart involvement, I have to think of my daughter's (11 yo) infections. DD11's PANS reactions (urinary frequency, ocd, motor/vocal ticcing, loss of motor control, insomnia) sound a lot like yours. Shin/long bone pain is often the result of bartonella infection.

Edited April 5, 2013 by rowingmom

[tpotter]

Is Dr T treating you? Are you taking any abx at the moment? You have said that both times you took abx, you developed C diff. Were you taking any probiotics at the time? Did you use a combination of abx? A lot of our children have taken longer than 8 months on multiple abx to find stable improvement, especially when lyme/coinfections are involved. When you mention shin pain, and heart involvement, I have to think of my daughter's (11 yo) infections. DD11's PANS reactions (urinary frequency, ocd, motor/vocal ticcing, loss of motor control, insomnia) sound a lot like yours. Shin/long bone pain is often the result of bartonella infection.

Ditto. I presume if you are seeing Dr. T., you are in the Hudson Valley area, and I heard recently that it is rampant with Bart. That's where my kids and I got it from. Bartonella is not Lyme, but tickborne. Dr. T. does not treat Lyme. If you want a name, let me know, and I'll PM you. We have been getting treated for about 2 1/4 years now with multiple abx and cyst busters by an LLMD, and recently added in ART. Getting lots of relief. CFS may be result of bartonella, lyme and/or viruses, such as HHV-6 or Coxsackie. I used to have horrible, horrible fatigue, but no longer since getting treated.

[Guest]

Is Dr T treating you? Are you taking any abx at the moment? You have said that both times you took abx, you developed C diff. Were you taking any probiotics at the time? Did you use a combination of abx? A lot of our children have taken longer than 8 months on multiple abx to find stable improvement, especially when lyme/coinfections are involved. When you mention shin pain, and heart involvement, I have to think of my daughter's (11 yo) infections. DD11's PANS reactions (urinary frequency, ocd, motor/vocal ticcing, loss of motor control, insomnia) sound a lot like yours. Shin/long bone pain is often the result of bartonella infection.

 

Yes Dr. T. But I live in Florida, we are doing long distance phone consultations.

 

No abx's at the moment. Because I did not see any difference in the 8 months and then the c-diff - doctors are very hesitant after that happens (so am I) but it may be something further down the road. My mother spent a lot of money seeing the LLMD and I know she would not be willing to do it again, I got very weird vibes from him; plus she is working full time to support us.

 

Yes I was taking probiotics. I was taking 3 abx's including flagyl. To eradicate c-diff I had to get on very very expensive antibiotic b/c flagyl just didn't work for whatever reason.

 

Thank-you for the feedback.

There isn't anyone locally to treat lyme and I don't have any money, literally. I had to get someone to drive me 4 hours out of town to see an LLMD and I he turned out to not be a very good doctor. The ride is no longer available.

 

Yes I am positive for coxsackie A and B and am taking valtrex right now which was prescribed by Dr. T. I also have other indicators of CFS: low NK cell count and NK cell functioning as well as problems with cytokines and multiple viruses (parvo). 2 well known CFS doctors also tested me extensively for other infections.

 

A lot of the problem is I can't sleep b/c of ocd but I've tried tons of meds and take a lot of downers now. As with most CFS patients, my sleep is completely non restorative (when I do sleep) and I have really bad post exertional malaise (simply taking a bath or shower can send me to bed).

[sf_mom]

I feel your symptoms are indicative of Bartonella as well.

 

Here is a good symptom list. I would include OCD as a symptom.

 

http://www.wayneanderson.com/pages/diseases/bartonella

 

However, given your C-Dif I think your focus needs to be dealing with that first and looking at repairing your gut health. There are many things you can do short of antibiotics to help with recovery potentially getting your over all 'bug' load down. Given that you are in FL perhaps reach out to individuals from the forum that might be able to guide you to Dr.'s that understands these issues well, that is covered by insurance that is a little closer and could see more regularly.

 

You might also consider a comprehensive stool analysis if you haven't done one already. A comprehensive stool will tell you if you have parasites, other opportunistic bacteria, yeast/fungus, inflammation in addition to C-dif. Plus you would understand if you have good bacteria allowing you to focus the probiotics where they are needed. AND, if you have any digestive enzymes...

 

If you have low pancreatic function a good protease enzyme could help lower NK Cell and binding immune complexes. Hopefully, feel better as they lower. I am not sure if Dr. T has tested your binding immune complexes so you might check your records. Again, a high complex will indicate they are binding with something and that is typically infection.

 

We have treated for Coxsackies for 2 1/2 years now in all three kids. It can be very difficult to get those titers down but ours are finally much, much better. Your current titer results should act as baseline and the goal should be to treat until sub-negative... or symptom free. We've used a rotation of anti-viral herbal remedies. Valtrex 'by some' is thought to suppress the virus not lower load and why our LLMD prefers herbals but also uses Valtrex for extended period to make headway with overall treatment. Since you have such a high viral load you might check nagalase numbers as well. GcMAF shots can really help as well.

 

Hope I've given you a few things to investigate.

[rowingmom]

I would also like to mention that there are herbal/homeopathic protocols available if you don't want to go the abx route. They are perhaps not as immediately effective, but some people have luck with them over the long term. DD11 is using one: Byron White protocol. She had a large herx with it when she started out, and we are hoping that it will be able to hold her as we wean off abx now, after 2 years of combinations. With the blessing of our LLMD we are also using the Buhner protocol. His website is here:

http://buhnerhealinglyme.com/

 

I, myself, had a big herx with this when I treated myself for lyme. Joint pains and skin sensitivity to touch that I had never had before. It all seemed to calm down after a couple of months, and I find that I don't not have the mood swings and insomnia that I used to have.

 

If you try these, you want to start at low dosages and work up. If you herx too bad, back off and increase detox - epxom salt baths, sauna, lemon juice. Just a note - do not try the Buhner protocol without using Japanese knotweed. It is a good anti-inflammatory, and completely necessary when the other herbs are taken.

 

Perhaps look for a naturopath familiar with lyme/coinfections to get you started.

[LNN]

I'm not sure I agree that CFS can't be treated. Not sure if you've read the writings of Rich Van Konynenburg http://forums.phoenixrising.me/index.php?threads/documents-by-rich-van-konynenburg-parts-1-7.11488/ but this may be helpful.

[Alex]

Another thing to consider would be Tonsillectomy/Adenoidectomy. Below are a few links to articles by a psychiatrist who treats adult PANS with T & A surgery.

 

http://www.psychologytoday.com/blog/attention-please/201102/evil-pandas-scourge-the-brain

 

http://www.psychologytoday.com/blog/attention-please/201107/evil-pandas-part-ii-adult-affliction-treatment

 

http://www.psychologytoday.com/blog/attention-please/201203/pandas-patients-parents-and-physicians-0

 

Best of luck, Alex

[Guest]

I feel your symptoms are indicative of Bartonella as well.

 

Here is a good symptom list. I would include OCD as a symptom.

 

http://www.wayneanderson.com/pages/diseases/bartonella

 

However, given your C-Dif I think your focus needs to be dealing with that first and looking at repairing your gut health. There are many things you can do short of antibiotics to help with recovery potentially getting your over all 'bug' load down. Given that you are in FL perhaps reach out to individuals from the forum that might be able to guide you to Dr.'s that understands these issues well, that is covered by insurance that is a little closer and could see more regularly.

 

You might also consider a comprehensive stool analysis if you haven't done one already. A comprehensive stool will tell you if you have parasites, other opportunistic bacteria, yeast/fungus, inflammation in addition to C-dif. Plus you would understand if you have good bacteria allowing you to focus the probiotics where they are needed. AND, if you have any digestive enzymes...

 

If you have low pancreatic function a good protease enzyme could help lower NK Cell and binding immune complexes. Hopefully, feel better as they lower. I am not sure if Dr. T has tested your binding immune complexes so you might check your records. Again, a high complex will indicate they are binding with something and that is typically infection.

 

We have treated for Coxsackies for 2 1/2 years now in all three kids. It can be very difficult to get those titers down but ours are finally much, much better. Your current titer results should act as baseline and the goal should be to treat until sub-negative... or symptom free. We've used a rotation of anti-viral herbal remedies. Valtrex 'by some' is thought to suppress the virus not lower load and why our LLMD prefers herbals but also uses Valtrex for extended period to make headway with overall treatment. Since you have such a high viral load you might check nagalase numbers as well. GcMAF shots can really help as well.

 

Hope I've given you a few things to investigate.

Yes this is all very helpful. Thank ya'll. Sorry it's hard for me to respond properly but I am printing all of this out and will read through it when better rested.

My CFS doctor put me on equilibrant, do you know much about it? It's an herbal mixture that is supposed to help with coxsackie but I've had a lot of side effects from it.

 

 

 

I'm not sure I agree that CFS can't be treated. Not sure if you've read the writings of Rich Van Konynenburg http://forums.phoenixrising.me/index.php?threads/documents-by-rich-van-konynenburg-parts-1-7.11488/ but this may be helpful.

I have heard about this but haven't tried it yet. It's definitely something in the back of my mind. Thanks.

 

 

 

Another thing to consider would be Tonsillectomy/Adenoidectomy. Below are a few links to articles by a psychiatrist who treats adult PANS with T & A surgery.

 

http://www.psychologytoday.com/blog/attention-please/201102/evil-pandas-scourge-the-brain

 

http://www.psychologytoday.com/blog/attention-please/201107/evil-pandas-part-ii-adult-affliction-treatment

 

http://www.psychologytoday.com/blog/attention-please/201203/pandas-patients-parents-and-physicians-0

 

Best of luck, Alex

Yea, I read all of his articles b/c they were all I could find online with adults pandas - very helpful information. I have thought about it and will mention it again b/c of the chronic infections in my tonsils since I was a kid. Thanks alex.

[Guest]

I feel your symptoms are indicative of Bartonella as well.

 

Here is a good symptom list. I would include OCD as a symptom.

 

http://www.wayneanderson.com/pages/diseases/bartonella

 

However, given your C-Dif I think your focus needs to be dealing with that first and looking at repairing your gut health. There are many things you can do short of antibiotics to help with recovery potentially getting your over all 'bug' load down. Given that you are in FL perhaps reach out to individuals from the forum that might be able to guide you to Dr.'s that understands these issues well, that is covered by insurance that is a little closer and could see more regularly.

 

You might also consider a comprehensive stool analysis if you haven't done one already. A comprehensive stool will tell you if you have parasites, other opportunistic bacteria, yeast/fungus, inflammation in addition to C-dif. Plus you would understand if you have good bacteria allowing you to focus the probiotics where they are needed. AND, if you have any digestive enzymes...

 

If you have low pancreatic function a good protease enzyme could help lower NK Cell and binding immune complexes. Hopefully, feel better as they lower. I am not sure if Dr. T has tested your binding immune complexes so you might check your records. Again, a high complex will indicate they are binding with something and that is typically infection.

 

We have treated for Coxsackies for 2 1/2 years now in all three kids. It can be very difficult to get those titers down but ours are finally much, much better. Your current titer results should act as baseline and the goal should be to treat until sub-negative... or symptom free. We've used a rotation of anti-viral herbal remedies. Valtrex 'by some' is thought to suppress the virus not lower load and why our LLMD prefers herbals but also uses Valtrex for extended period to make headway with overall treatment. Since you have such a high viral load you might check nagalase numbers as well. GcMAF shots can really help as well.

 

Hope I've given you a few things to investigate.

What kind of practioner does GcMaf shots as well as herbal treatments for infections?

 

The only LLMD is 4 hours away and we didn't have much success with him. He didn't mention any of these things. I am in Fl.

[Guest]

Lastly, are my labs, symptoms, and history indicative of pandas/pans? I'm just wary and scared of mis-diagnoses again.

[ilikedogs]

Would love to connect if you still check this!

[PANS-mom]

Hi Ophelia,

I also came down very suddenly with PANS when I was 27 years old. I am now 44. I didn't know what PANS was until recently when my son and daughter were both diagnosed with PANS by their amazing pediatrician. They both had very high mycoplasma levels and both responded amazingly well to Zithromax. So I had my (past) mycoplasma levels tasted and they are also very high. My own doctor doesn't even know what PANS is so I am currently looking for a new doctor who does and who can prescribe me some Zithromax too possibly.

I have been trying out different SSRI's and supplements for years now. The first month of was a cocktail of Ativan and very high doses of Zoloft (don't recommend the high doses of SSRI btw...just small doses). I currently am doing well on Prozac 20mg and very small amounts of Buspar. I also take very small amounts of ADD medication which helps me to focus and get stuff done during the day. It is possible to get past this.  Just be very vigilant with finding the right doctors and researching supplements to help.

 

[Wombat140]

27?!  That makes me with my onset at 13 feel quite mainstream.  I've been told occasionally that it can't be PANS at that age.  Well, somuch for that, evidently. 

I think there is supposed to be a reason for it in that it's supposed to be a thing that happens when the immune system isn't fully developed yet, but perhaps yo u and I just have something odd about our immune systems.  I mean, genetics can get you in all kinds of ways, so maybe we have some kind of as-yet-undiscovered genetic problem with our immune system that meant that whatever it was that's supposed to have happened by then that makes you no longer susceptible to PANS reactions, hadn't.  Just speculation. 

(It's also, I think, true that neurological Lyme disease is mostly not even about immune reacions but to do with the bacteris directly nib bling at neuron insulation, so presumably thed developed-immune-system thing wouldn't apply.)

(I am literally like a house with mice chewing the wiring.  :-)  )

Edited August 7, 2017 by Wombat140

[rachelfaith05]

I was just diagnosed with severe OCD. The issues started mainly at the beginning of 2017. I’m 31 year old and I’ve had strep multiple times in the past. I’ve had anxiety as long as I can remember, but now it’s completely out of hand. My therapist says she thinks i need to be checked for PANS/PANDAS and I agree. The only thing is I can’t find a doctor who is knowledgeable in PANDAS who also treats adults with it. I have no idea what to do and I’m really desperate for any suggestions. I live in northeast Ohio. Is there any directory with doctors who treat adults as well that I don’t know about?