Untreated PANDAS? Please help.

[Ashley128]

Hi all. I have been reading this forum for a while and really need some advice. I am 33 and have just made the connection that I most likely have PANDAS. A little background info - I first remember having tics, OCD and irrational fears at about 5 years old. This came around the time that I first had tonsilitis. I remember the tics/OCD coming and going throughout my childhood (as did tonsilitis) then I was tic free from about 12 - 16 although I think may still have a bit of OCD from time to time. Then after a very bad bout of tonsilitis the tics/OCD came back and this time never went away. I regularly had tonsilitis but the drs didn't think I had it enough to take my tonsils out. Drs dismissed my tics and other issues and branded me a "worrier". I then became embarassed about my issues and just tried to live with it. I eventually thought I must have Tourette's syndrome and discussed it with a dr who again dismissed it as "a trait of my personality". I researched constantly, tried many supplements etc with nothing ever really helping. I read about PANDAS but dismissed it because at the time it was only something children were meant to have. Then a few months ago after seeing my 18 month old niece who was very sick at the time I almost immediately developed anxiety and panic disorder. I cannot have caffiene since then as it sends me into a severe panic attack (I had never had a panic attack before this but did have anxiety). I can no longer take ibuprofen since then as it makes me anxious and gives me heart palpitations. So I now have general anxiety, shortness of breath, dizziness and brain fog on top of my usual motor tics, vocal tics and OCD. I also have a severe germ/contamination phobia which I have since being a child. So life has become very difficult! I have seen 4 drs who have all said I have anxiety and want to put me on anti-depressants. I don't want this! So after more research led me to PANDAS, I started considering it as a possibility. I went to a neurotherapy clinic where natural remedies are practiced and the practitioner seemed to think that I have PANDAS but has not done any tests. They want me to do brain mapping, blood tests for vitamin deficiencies and so on (not anything relating to PANDAS as far as I can tell) and do counseling, diet changes etc. All this is going to cost thousands of dollars and as my condition has prevented me from keeping a job for longer than a few months at a time my whole adult life I have no savings! My partner and parents are willing to help if this will alleviate my suffering but I wanted to ask advice from all the experienced, knowledgeable people on this wonderful forum before I go ahead as it is a lot of money. I am in Australia where as I am sure most of you already know medical help for these sorts of issues is scarce. Does this sound like its PANDAS? What is my best option for a proper diagnosis and possible treatments? Thank you in advance.

[Ozimum]

Hi Ashley,

I can recommend the diet and blood tests for vit deficiencies etc if ordered through an experienced Biomedical doctor. I'm not so sold on the brain mapping (too costly for us.) I've sent you a PM (Private Message.)

[StillHopeful]

Hi Ashley,

 

Sorry about what you are going through. I am glad you found this forum. There are several members of this group who know or believe they have/had PANDAS as an adult so you are not alone.

 

In my opinion you need to see a doctor, maybe a neurologist who specializes in PANDAS and treats with antibiotics. I would think that most of the patients would be children. If they give you a hard time about seeing you because you are an adult I would urge them to see you. Just curious if you can recall a time when your anxiety, tics, etc... improved during or right after being on antibiotics. If so, that would be a major clue. You should ask for tests such as step, mycoplasma, thyroid tests, epstein barr virus,... I am sure others will chime in with a list of more labs.

 

I quickly googled PANDAS Australia and Dr. Russell Dale came up. I have no idea who he is or where his office is. It just may be someone for you to talk to and get information from. Here is the link: http://www.kidsresearch.org.au/research/chw-clinical-school/rdale.php

 

 

If you go on facebook there is an International PANDAS page that you can join and there might be more people from Australia on there that can help you as well. Good luck to you.

[Ozimum]

Thanks StillHopeful - Dr Russell Dale is a pediatric neurologist in Sydney... and he's proved difficult to see. I think Ashley you're better to try one of the Biomedical doctors in Melbourne (I'm assuming that's where you are, given your post.) As said in previous post, I've sent you a PM and I'm happy to give you the heads up.

Edited February 20, 2013 by Ozimum

[mama2alex]

Hi Ashley, Welcome to the forum! Glad you are looking into this as a possibility. I just wanted to suggest that since it sounds like you are quite sensitive (caffeine, Motrin), you might try a gluten-free, dairy-free diet while you are looking for a doctor (if you haven't already done this). Also, try cutting sugar out of your diet for a few weeks and see if it helps. My brother, who has had pretty severe anxiety since childhood, found these diet changes caused a noticeable decrease in his anxiety. If you find they don't help you, no harm. But if they do, its a good place to start when you go into treatment with a doctor.

 

I hope you find help and answers very soon.

[Ashley128]

Thank you all for your replies. Ozimum thank you, I replied to your PM.

 

Stillhopeful - the challenge is finding doctors in Australia who are familiar with PANDAS. The few there are (such as Dr Dale) are very hard to get an appt with as ozimum mentioned. I wonder if a paediatrician would even see me? My own dr looked at me like I was an alien when I mentioned whether or not she had heard of PANDAS then gave me a very short "no". I would like to get a proper diagnosis so perhaps I can convince my dr to test me for all the things you mentioned. I have had thyroid tests done (for my new found panic disorder) and that was normal. I cannot remember a particular time I felt better after antibiotics, but have only ever been on them for a week or two once a year for tosilitis. The symptoms wax and wane a lot and it all becomes a blur. The panic/anxiety symptoms are very new and have not been on antibiotics since acquiring them. What stands our for me the most is how the symptoms came back literally over night when I was 16 after being tic free for about 4 years, and this was a month or two after a very bad bout of tonsilitis. Since then my tonsils have pretty much always been enlarged and often inflamed.

 

Mama2alex - thank you, my diet is not as good as it could be and I think this is also something I have to pursue. The of going GF and DF does scare me a bit but if it will ultimately help I will try anything. It was just how suddenly these sensitives came about that suprised me as I could always have coffee and take ibuprofen before a few months ago. This is why I thought it could be do with my niece being sick and possibly related to PANDAS.

[rowingmom]

As for the diet, you need not starve. Just make the switch to unprocessed foods, its not scarey, just takes some change of mind over what food actually is. A couple of sites to get you going:

http://www.marksdailyapple.com/#axzz2LRivPA1w

http://perfecthealthdiet.com/

http://www.terrywahls.com/eating-the-wahls-way

[mama2alex]

I understand completely. Changing my diet was scary and difficult too. I did a trial to see if it helped my almost constant headaches and when it worked I stayed with it. I had many slip ups, but it has gotten easier over the years. You should start with one thing - either gluten or dairy - and see how you feel. If that doesn't help, go back on it for a week. Sometimes you don't realize it's helping you until you reintroduce the food. Then try going off the other - dairy or gluten - and see how that feels. I would just try reducing sugar as you go and then at some point go without any at all for a week or two and see if it helps. Through trial and error your body will tell you what helps and what doesn't.

[mama2alex]

I understand completely. Changing my diet was scary and difficult too. I did a trial to see if it helped my almost constant headaches and when it worked I stayed with it. I had many slip ups, but it has gotten easier over the years. You should start with one thing - either gluten or dairy - and see how you feel. If that doesn't help, go back on it for a week. Sometimes you don't realize it's helping you until you reintroduce the food. Then try going off the other - dairy or gluten - and see how that feels. I would just try reducing sugar as you go and then at some point go without any at all for a week or two and see if it helps. Through trial and error your body will tell you what helps and what doesn't.

[TxPANDAMom]

Ashley - I have a 23 year old with PANDAS. She has only had noticeable symptoms for the last 5 years - we never saw anything as a child. So we too had a hard time diagnosing this problem. But there are older children & adults with PANDAS. It took us a year to have it diagnosed and it was only after I saw a segment on the TODAY SHOW that I researched the possibility. PANDAS doctors are hard to find everywhere! not just Australia. A great resource that has helped me emensely is PANDASnetwork.org. It is run by parents of PANDAS kids. Very informitive and they pull information from everywhere they can get it. Anyway - we were diagnosised officially by a Dr. in Illinois (and we are in Texas). His name is Dr.Miroslav Kovacevic.

He is well respected in the PANDAS community. He also does phone conferencing.

He treated Sara (my daughter) for 3 years with antibiotics and finally an IVIG. We saw definite improvement with the antibiotics and 6 months after the IVIG we went 1 full year with no symptoms at all. Saras symptoms were quite severe, and kept her from a normal life of any kind. Her symptoms came on suddenly in her 3rd month at college as a freshman. They included joint swelling, balance issues, anxiety, tics, focus isuues, confusion, OCD,

hypersensitivity (light, sound & touch), seizures,depression (occasionally to the point that was suicidal), voice regression - speech patterns changing - sometimes lasting 15 minutes, sometimes days.

Of course we had to bring her home from college - run extensive tests - she was hospitalized for 5 days, had MRI's, eeg's, tons of blood tests...

after 5 days they tell me she is has a B deficiency but can't find anything else. We went to specialist in neurology ( one wanting to call it scitzophrenia) One dr. tested her for parkinsons because of her movements, and balance....BUT - after Dr.K had us run some blood tests and checked her titers and a few other levels - we got our PANDAS diagnosis. He started he on antibiotics which pretty quickly gave us results though they never totally cleared all problems.

We flew to Illinois a couple of times to see Dr. K but did most correspondence by phone & email. We currently have a dr 3 hours away which we love - Dr. Kendal Stewart in Austin, texas. We are currently trying Hyperbaric Oxygen treatments - we are totally off antibiotics - she recently went gluten free - she does take a very low dose of Xanax that seems to control the anxiety when needed. But life in 2013 has been great. Sara is working again, driving again and hopefully on her way to a normal life. We do see her menstrul cycle having some effect on the symptoms...I've been checking into this link as well...since children are the ones getting all teh tests, not sure I will find much. Hopefully some of this has helped. Good luck and know there is Hope out there and people who are working to cure and find answers to this crazy disease.

[3boysmom]

Ashley - I have a 23 year old with PANDAS. She has only had noticeable symptoms for the last 5 years - we never saw anything as a child. So we too had a hard time diagnosing this problem. But there are older children & adults with PANDAS. It took us a year to have it diagnosed and it was only after I saw a segment on the TODAY SHOW that I researched the possibility. PANDAS doctors are hard to find everywhere! not just Australia. A great resource that has helped me emensely is PANDASnetwork.org. It is run by parents of PANDAS kids. Very informitive and they pull information from everywhere they can get it. Anyway - we were diagnosised officially by a Dr. in Illinois (and we are in Texas). His name is Dr.Miroslav Kovacevic.

He is well respected in the PANDAS community. He also does phone conferencing.

He treated Sara (my daughter) for 3 years with antibiotics and finally an IVIG. We saw definite improvement with the antibiotics and 6 months after the IVIG we went 1 full year with no symptoms at all. Saras symptoms were quite severe, and kept her from a normal life of any kind. Her symptoms came on suddenly in her 3rd month at college as a freshman. They included joint swelling, balance issues, anxiety, tics, focus isuues, confusion, OCD,

hypersensitivity (light, sound & touch), seizures,depression (occasionally to the point that was suicidal), voice regression - speech patterns changing - sometimes lasting 15 minutes, sometimes days.

Of course we had to bring her home from college - run extensive tests - she was hospitalized for 5 days, had MRI's, eeg's, tons of blood tests...

after 5 days they tell me she is has a B deficiency but can't find anything else. We went to specialist in neurology ( one wanting to call it scitzophrenia) One dr. tested her for parkinsons because of her movements, and balance....BUT - after Dr.K had us run some blood tests and checked her titers and a few other levels - we got our PANDAS diagnosis. He started he on antibiotics which pretty quickly gave us results though they never totally cleared all problems.

 

 

We flew to Illinois a couple of times to see Dr. K but did most correspondence by phone & email. We currently have a dr 3 hours away which we love - Dr. Kendal Stewart in Austin, texas. We are currently trying Hyperbaric Oxygen treatments - we are totally off antibiotics - she recently went gluten free - she does take a very low dose of Xanax that seems to control the anxiety when needed. But life in 2013 has been great. Sara is working again, driving again and hopefully on her way to a normal life. We do see her menstrul cycle having some effect on the symptoms...I've been checking into this link as well...since children are the ones getting all teh tests, not sure I will find much. Hopefully some of this has helped. Good luck and know there is Hope out there and people who are working to cure and find answers to this crazy disease.

 

 

 

Hello fellow Texan, we live in The Woodlands. Did you know that Kathy Alverez (Dr. Cunningham's assistant for the Cunningham study) is from Kingwood? Just unimportant trivia....

Linda

Edited February 22, 2013 by 3boysmom

[StillHopeful]

Ashely --

 

I would make an appt with the best and most respected doctors that treats PANDAS. You may have to wait several months but that's OK. In the meantime, you can explore other avenues. Some people use supplements, homeopathy (there is someone in Australia that lots of PANDAS patients use and love). Here is the link. http://www.vcch.org/

 

 

I think your symptoms lean towards a PANDAS or PANS diagnosis. It is definitely worth checking out.

[Ashley128]

Thank you all so much for your replies.

 

TxPANDAMom thank you your story encouraged me and I am so glad to hear you have made such progress with your daughter.

 

I will definitely make an appt with a suitable dr and will also look into homeopathy thanks Stillhopeful.

 

I have already made diet changes but have not seen much change yet.

 

I am also considering a tonsillectomy later this year. Will let you all know how I go. Thanks again.

[EpicHsupport]

Hello! I have to add that diet AND nutrition are key for our immune system. My sister who is over 40 has had PANS/PANDAS but never knew it. She lives a life of high fructose sodas, crackers (because she also has IBS) and very little sleep due to here OCD rituals around sleeping. Her mood swings lead to many people, including myself, to shun her because we thought the doctors/traditional meds should have sorted her out. And she just didn't care about herself. Yes, shame on me. I did not know any better at the time, but I could not handle to drama.

 

Alas, fast forward 30 years, our DS14 started to have the same meltdowns with onset of puberty (we found out he has low D, zinc, B because of Pyrroles) which added to his decreased immunity to any bacteria, virus, or stress. He also has gene mutation for under myth-elation. So what does all of this mean?

 

Found this site! Read through every post. Without a doctors visit, went to private Lab Corp. and order strep titer (my son or sister never has had strep throat). It came back off the charts. First clue confirmed. Found an on-line doctor, sent copy of lab work, with $80 had a script for Zithro. Only 7 days, but wow what a difference. He went back to the tics and meltdowns after the course finished. Second clue confirmed.

 

Next step, started son on b6, D, and evening primrose oil while waiting for an appointment with a PANDAS doctor. Created an extremely healthy detox immune booster diet for him. (MY grandmother would be proud) Ordered a pyrroles test kit for $75. Confirmed, he has pyrroles disorder, too. I did not have money for the test or meds for my sister, but bought the vitamins and supplements for her. She previously had pancreatic disease (very painful) and has never drank alcohol. With just the supplements her symptoms are starting to wane. She does not have insurance, because she could not keep a job very long do to panic, anxiety, low stress tolerance, etc. At one point she was homeless. I am trying to get her to see someone for an antibiotic, but she is very untrusting of doctors now.

 

My 2 cents: Any untreated, underlying vitamin or mineral or hormone deficiency adds to the susceptibility of the PANDAS/PANS (or any other chronic illness to include cancer). Every person's metabolic system is unique to them. Some people can't handle MSG or red food coloring or sugars. Our diet and immune health can change the outcome or at least aid in recovery.