Help please!

[Michel12]

Hi I have been suffering since I was 12 and would like some input on you guys because my doctor just brought up Pandas. Well when I was 12 something weird happened. I don't know if it happened overnight or not but I started feeling poorly. I lost the ability it felt like to experiance pleasure or the energy or excitement I used to have (ecspecially when playing sports). I started to get really bad headaches ecspecially when I exercised or exerted myself. I did not want to exercise anymore as "it hurt my head" when I ran and I kept saying I felt lightheaded or "I wasn't getting enough blood flow to my head." when i came back to school for my 8th grade year after withdrawing all summer from my friends. I realized i couldnt talk to my friends anymore on my first day. I forgot how to socialize, what i used to say to them or how to please them or make them laugh like i used to. I basically forgot that i was friends with them. My mind felt slow and blank. I would complain to my parents "mom I can't think" my mind feels dead I cant know what to say. I cant visualize anything. I cant remember anything. I dont daydream anymore. I felt really weak and tired throughout the whole year. My head felt tender and hurt all the time. My eyes were very droopy. I didnt enjoy anything and do anything but stay in my bed and sleep. Then the OCD came out. It happend over night. I could no longer be around my sister anymore. I couldnt touch anything she touched couldnt breath her air. I would put towels under my door. I couldnt drive in the same car as her. Every time i touched something she touched I would get much anxiety and wash my hands and do a ritual. She was 'killing my brain cells" She was making me not be able to think and causing my problems.

 

Anyway eventually I had to leave school freshman year saw a myriad of pychiatrists. Was hospitalized etc. to no benefit. They did tests in the hospital like lyme blood test MRI, eeg, look for diabetes, and labelled me with "treatment resistant" deppresion. They eventually did ECT therapy at 15 to absolutely no benefit which made me worse! I stopped doing my sister obsessions though (at a cost). I always thought it was a pysical problem and kept telling them! But they c\kept saying oh no deppresion has psychcal compalints. I was diagnosed with POTS in the hospital becuase my blood pressure kept dropping and heaert rate accelerating and have been seeing a doctor for that. My neurologist now is suggesting that I could have had Pandas. I had tics when i was a kid and of course strep throat. I also had mono for 4 months too. I do not feel better after taking SO many antideppresents and antipychotics. I even went the holistic route and was taking 40 vitamins a day at one point! I'm looking into autoimmune and lyme. I live in Maryland and my beach house is a heavily infested tick area. My next door neighbor there was just diagnosed with lyme after having 9 ticks in her! Also Of note I was diagnosed with A connective tissue disorder which my doctor suspects is Ehlors Danlos syndrome. And I had increased intracranial hyperetension which was diagnosed with Pseuodotumor cerebri. I had a vp shunt put in to no relief really.

 

Any ideas any tests any feedback! I'd love to here it! I'm 21 now!

 

[LexMom]

I have a friend who has EDS and she recently started a yeast-free diet and has seen some relief. If you are on Twitter there are a lot of people who share their experiences with the disorder. Maybe they can offer some suggestions.

[Hopeny]

One consideration based on the nature if your symptoms would be to explore Lyme. I have read other accounts regarding Lyme with a similar group of symptoms. Many people do not see a tick/bullseye rash. Ilads.org has good information. Good luck to you

Edited August 31, 2013 by Hopeny

[PowPow]

Wow. You are dealing with alot. What type of Ehlers-Danos does your doctor think you have?

Since you treated both the psuedotumor and POTS without resolution of psych symptoms, maybe autoimmune is a good avenue. Have you ever taken steroids?

Why do they think you have ED?

Edited August 31, 2013 by PowPow

[msimon3]

I second Hopeny's recommendation. I would seek out a LLMD in your area, one with a background in immunology or infectious disease, to help you navigate your medical history. It could be Lyme, or a coinfection, or something else. I can send you a message with the name of a doctor in the DC area if you are interested.

[mama2alex]

Welcome to the forum. I'm sorry you are dealing with so many health issues.

 

It's sounds like Lyme is a likely suspect in your case. I agree, you should find an LLMD right away and be fully tested and evaluated for Lyme and coinfections such as Babesia, Bartonella, Erlichia, and Mycoplasma. I wouldn't go the steroid route until you've ruled Lyme out.

 

I recently read a great book called "The Lyme Diet" by Dr. Nicola McFadzean. You might want to check it out while you are waiting to see the LLMD. I think the diet changes she recommends can be helpful for anyone with this kind of multi-systemic health issue - whether it's due to Lyme, viruses, mold, autoimmune issues, or something else. It's a way of eating that supports the gut, immune system, and helps lower inflammation. Also, if you are not currently taking anti-biotics and haven't for the last couple of months, I would push for the Advanced Labs culture for Lyme. It doesn't rely on the immune system like many other Lyme tests, so you have a better chance of getting a true answer.

[Michel12]

Wow. You are dealing with alot. What type of Ehlers-Danos does your doctor think you have?

Since you treated both the psuedotumor and POTS without resolution of psych symptoms, maybe autoimmune is a good avenue. Have you ever taken steroids?

Why do they think you have ED?

Well I was looked at by a geneticist and she couldn't confirm ehlors danlos and diagnosed me with connective tissue NOS. My doctor origionally thought I had ehlors danlos becuase I had cranio-cervical instability, stretch marks all over my body. I however do no have hypermobility. I have not taken steriods but was just started on an antibiotic called minocycline at a low dose. It seems to have improved my energy. I'm going to tlak to my docotr about it Wednesday becuase I have been on it for at least 2 weeks.

 

I second Hopeny's recommendation. I would seek out a LLMD in your area, one with a background in immunology or infectious disease, to help you navigate your medical history. It could be Lyme, or a coinfection, or something else. I can send you a message with the name of a doctor in the DC area if you are interested.

 

 

Welcome to the forum. I'm sorry you are dealing with so many health issues.

 

It's sounds like Lyme is a likely suspect in your case. I agree, you should find an LLMD right away and be fully tested and evaluated for Lyme and coinfections such as Babesia, Bartonella, Erlichia, and Mycoplasma. I wouldn't go the steroid route until you've ruled Lyme out.

 

I recently read a great book called "The Lyme Diet" by Dr. Nicola McFadzean. You might want to check it out while you are waiting to see the LLMD. I think the diet changes she recommends can be helpful for anyone with this kind of multi-systemic health issue - whether it's due to Lyme, viruses, mold, autoimmune issues, or something else. It's a way of eating that supports the gut, immune system, and helps lower inflammation. Also, if you are not currently taking anti-biotics and haven't for the last couple of months, I would push for the Advanced Labs culture for Lyme. It doesn't rely on the immune system like many other Lyme tests, so you have a better chance of getting a true answer.

I think i'm going to schedule an appointment with a lyme docotr soon. I just need my docotr to go over the reccomendations he made. I've started on an antibiotic called minocycline for about 3 weeks at 100 mg a day. It seems to be helping with my energy. He usually gives it to his POTS patients for anti-inflammatory effect.

[mama2alex]

A rash that looks like stretch marks is a common symptom of Bartonella, a tick-borne infection that often comes with Lyme. It can also be transmitted separately and by other things than ticks. Glad you are going to be evaluated by an LLMD!

[PowPow]

Kazooie,

My daughter had an overnight onset of severe, incapacitating OCD (like you mentioned). She also has/had severe depression, fatigue, tics and more~even psychosis. We did treated for Lyme with an LLMD, and honestly ,it helped some, but by far, the greatest improvement we have seen is from autoimmune treatment.

I mention this to you, since you said you have a NOS connective tissue disorder. My daughter was just diagnosed (at almost her 5 year anniversary of onset!) with Undifferentiated Connective Tissue Disorder and anti-phospholipid antibodies. Her rheumatologist believes this is exactly what the problem has been all along. She has been treated for PANS/PANDAS since 2010 with steroids, plasmapheresis, antibiotics and IVIG. It has taken much treatment and now an immunesuprressant (cellcept) to her to a really good place. The PANS/PANDAS treatment looks just like the treatment for UCTD, thankfully, so we have been on the right track since 2010!

Do you have any markers of autoimmunity or inflammation(ANA, sed rate, antibodies)?

Edited September 1, 2013 by PowPow

[Michel12]

Kazooie,

My daughter had an overnight onset of severe, incapacitating OCD (like you mentioned). She also has/had severe depression, fatigue, tics and more~even psychosis. We did treated for Lyme with an LLMD, and honestly ,it helped some, but by far, the greatest improvement we have seen is from autoimmune treatment.

I mention this to you, since you said you have a NOS connective tissue disorder. My daughter was just diagnosed (at almost her 5 year anniversary of onset!) with Undifferentiated Connective Tissue Disorder and anti-phospholipid antibodies. Her rheumatologist believes this is exactly what the problem has been all along. She has been treated for PANS/PANDAS since 2010 with steroids, plasmapheresis, antibiotics and IVIG. It has taken much treatment and now an immunesuprressant (cellcept) to her to a really good place. The PANS/PANDAS treatment looks just like the treatment for UCTD, thankfully, so we have been on the right track since 2010!

Do you have any markers of autoimmunity or inflammation(ANA, sed rate, antibodies)?

This is very interesting to me! As far as i know my Ana was negative. Although my anti-phospholipid antibodies were high. My doctor put me on daily aspirin and was concerened of clotting so did an MRa/MRV of my brain which came back good. I am getting a ct angiogram of my neck. I'm not sure if I was diagnosed with anti-phospholipid antibody syndrome though. I will talk to him this coming week about this.

[PowPow]

There are some scholarly articles about APS and OCD, psychosis, neuropsychiatric symptoms. Some had small infarcts from clots, but sometimes they improved from immunomodulation only. I also have APS. your post reminded me to take my daily aspirin. Thanks

Hope you get some good, helpful info this week!

[mompaisley]

Yes, Dr. T says there is a connection between EDS, POTS and PANDAS. I have Hypermobile, my hubby and son have Classical. My daughter has PANS. Would love to see Dr. T figure this all out. What a mystery!!!

[Dedee]

Some of the symptoms you describe are very typical symptoms in disorders which cause extreme dopamine excess. There are several different issues that can cause excess dopamine. Dr. Jess Armine is excellent in treating abnormalities in neurotransmitters among other things. He has a website link below.

 

http://www.drjessarmine.com/

[T_Mom]

Great post -- thank you