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  • pandas-cover-cropped.pngYour Child Has Changed; Should You Consider PANDAS?

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Hello I'm a 24 year old female from germany. I try to make it as short as possible, thanks for reading :) . I've always was a sick child but the first time I really realized I was getting more sick and sick every day was around age 11. By now I pretty much had every symptome related to pans/pandas. I had my first tic at age 3. I would start stretching my limbs into every possible direction and stare into nothingness for hours, I also had sudden movements. I can't remember but my mum can. It went away by itself. By age 6 I started to have severe anxiety. From that time on I was scared of everything, I wouldn't go anywhere without my mum. In school I was so scared I started sweating as if I was taking a shower. By age 11 I started having severe sinus problems and I would get sick every 6 weeks, but I never had fever. I would get aggressive easily and was extremely moody, I also had severe gut problems Age 14: I started to faint randomly - in the bus, at school, In the subway, night sweats started, every night for 2 years. I had problems with my handwriting, it was becoming so bad my teacher couldn't read it. Age 16: I woke up one saturday and was dizzy and this is where the worst part started. I stayed dizzy for 2 years. I had severe migraines, it felt as if my head was exploding, my coordination was gone, I had extrem light sensitivity too. At 18 it went down to extrem pain in the neck and confusion.Because no doctor diagnosed me except with allergies to milk, egg etc. I started a raw food diet and went back to school to get my a level. At 20 I had a half year of no symptoms I finished my a-level and then suddenly the gut started again, I couldn't eat anything (2016), I had constant constipation or diarrhea I lost 7 kg and was so intoxicated I smelled from every pore when I entered a room, I had to get infusions from a doctor to get the poison out of me. 1 year later I started having auditory hallucinations (now for 2 years) . Also 4 months ago the tics started again. Since 2016 the sinus problems are back, I have nerve pain, my knee joints hurt after taking a shower, sometimes my skin burns and a lot of other symptoms. I will now start getting tested for infections. We start with lyme disease because I remember having a tick at 14, 2 months before I fainted for the first time. I have absolutely no clue what else I have to test for. It's also really hard to find a doctor that knows about pandas in Germany. 

So basically what I'm asking for is what should I get tested. I read a lot about co-infections, Lyme tests that aren't accurate, encephalitis, something about MTHFR gene and pandas but I don't know what to look for. I'm really confused and my mum (who loves me but...) is really bad at research doesn't know what to do. 

Until now we tested :

-I had a spinal tab (they tested for encephalitis) - negative

-MRI-negative 

-I had an autoimmune blood test - myelin antibodies positive + 

-They tried neuroleptics - didn't work, then they said they don't think I have schizophrenia 

-I had an eeg - they found slow waves and put me on keppra against seizures that I didn't have back then. +

-I had a gastroscopy and colonoscopy - negative. I'm still waiting for the blood work they tested for gluten sensitivity. 

-2016 I went to a naturopath he tested me and told me my body couldn't process meat protein anymore. Also he diagnosed me with an illness not accepted by mainstream medicine called pyroluria. But he managed to get my stomach back to working, sometimes it was rock hard even after just eating a cucumber. He also said I don't have leaky gut (also not mainstream medicine) +

I'm no expert I don't know where to start because my mum and me realized that doing the standart tests won't work. I'm reaching out for those mums that got their children tested and did their own research. Please help me to figure this out because my mum doesn't even know what a forum/board is and I'm at my limit and really scared. 

Also sorry for my bad english. 

Thank you very much. I would be so grateful if you could help. 

Zanzarah. 

 

 

 

 

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Zanzarah, thank you for writing and you will find a good information and people here on this site.   

Your symptoms are very similar to my experience with Lyme disease, specifically:

  • tics
  • dizzyness
  • moodiness
  • poor handwriting 
  • sensitive gut problems
  • headaches and neck pain / meningitis 

You mention you had a tick bite at age 14, then you had night sweats.  Your naturopath said you cannot process meat protein.  Do you feel bad after eating meat now?  If so, you may indeed have a meat allergy called Alpha-gal which caused by a tick bite: https://www.mayoclinic.org/diseases-conditions/alpha-gal-syndrome/symptoms-causes/syc-20428608

I suspect that your other symptoms may be due to a tick bite when you were 3 years old.  Tick-borne disease is certainly possible in Germany: https://www.ncbi.nlm.nih.gov/pubmed/12141751

Have you seen a doctor who specializes in Lyme disease and immunology?  You can attempt to locate a doctor here: https://www.ilads.org

I wonder if you would be able to travel to the U.S.  I have a very good doctor in Washington D.C. who specializes in tick-borne disease, neurology, and immunology.  I will message you with his contact information.

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Just a thought...This might be totally out there but as well as checking out PANS, it might be worth investigating MCAS (Mast Cell Activation Syndrome) Look up the list of symptoms and see if they sound like you. No harm done if it's not. Good luck!

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Thank you for the answers. I wrote down everything for my mum too. The Mcas sounds a lot like me, actually since early childhood. Thank you for that too. I will get checked for lyme in 2 weeks, I guess wish me luck. :)

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Hi there, I'm so sorry to hear about all that you have suffered through. I am 25 and have had my own challenges with PANDAS and Lyme but not nearly as long or severely as you have. My guess is that a large cause of what you are dealing with is Lyme and some co-infections (Bartonella, Babesia, etc.).

A few things I would recommend in addition to the above:
- Cunningham Panel by Moleculera Labs (to see if you have PANDAS or PANS)

- IGeneX Lyme and Co-infection testing - you should test for all the co-infections (Lyme, Bartonella western blot, Babesia, Anaplasma, Rickettsia, Relapsing Fever, Ehrlichia, etc) - IGeneX is the most accurate Lyme testing out there; the traditional western blot and ELISA is not very accurate, though if you do get a positive that is helpful)

- ASO and DNASE B strep antibody tests (to further support PANDAS diagnosis)

- Wheat gluten sensitivity testing through Cyrex labs (to see if you have gluten allergies causing increased inflammation)

- Food, environmental allergy and mold testing (to see if food or other allergies are causing increased inflammation)

- there is so much more...but this should be a good start

 

I think you should definitely seek out an Integrative Medicine doctor, someone who looks at a variety of possible causes of why you are sick. Unfortunately for so many of us, there isn't one small thing that causes our symptoms, it is usually a lot of factors: mold, lyme, parasites, strep, allergies, mast cell, etc etc. If you are having difficulty finding someone to treat you in Germany, there are options in other countries where you can have phone consultations.

It sounds like you have made some diet changes but the first step you can do today to start your recovery is improve your diet. No sugar, gluten, or dairy. This should help with everything. It may take a long time for you to see significant changes in symptoms (months to years for some) so hang in there. You may see small gradual improvements along the way. Some people recover quickly (weeks) but adults who have been sick for a long time tend to take months more often than weeks. So don't be discouraged if diet and other treatments don't yield results immediately. Good luck!

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