julie_2girls

Dizzy, we are in AZ. i am working with dr tim jackson via phone consult. he is a PT that rid his lyme w/o abx. He trained with dr Kendal stewart an ENT that specializes in neuroimmune syndromes. you can google their names and find them on youtube or underground wellness talk radio. i also posted a link above. dr tim focuses on healing the gut first then methylation. this gets the immune system working better - which is why my daughter probably gut sick to begin with. Mold toxicity can contribute to leaky gut. Her dysautonomia symptoms came after psoriasis, hashimotos dx. mast cells degranulate as response to lyme I have heard. My daughter developed bartonella rash this summer. this is a coinfection and really got me looking for infections...it is all making sense. it is not easy to treat chronic lyme - controversial unfortunately. i think you have to get the immune system working OR infections will just come back when you stop abx. we are new to this journey. daughter is still on her dysautonomia meds: midodrine, florinef. she also takes gastrocrom for the mast cells. OH daughter also has PITAND - infection triggered auto immune reaction attacking brain - so basically her body is attacking healthy tissue in brain. Dr. Stewart says when methylation not working you have too few T cells and then B cells which are involved in allergies increase. Over time you become more and more sensitive to foods, chemicals, etc...makes sense. If you are interested in really changing how the body responds it is worth looking at genetic mutations, gut health, etc...

i am not on here often. over a year ago daughter dx with dysautonomia and probably mcad. well after a year of worsening health we started looking further and found out daughter has chronic lyme and mold toxicity. apparently these infections can cause autonomic dysfunction and mast cells to degranulate. we are working on healing her gut and then onto methylation. I am working with dr tim jackson who will be on blogtalkradio tomorrow night: http://www.blogtalkradio.com/mthfrsupport/2013/01/03/mthfr-supports-first-show

I think issie is onto something here:)) wish her the best!

anyone try phosphotidylserine? it clears cortisol. over the counter phospholipid. my daughter takes 500 mg an hour before bedtime and it helps her insomnia. it also appears to have improved her am cortisol levels which were low in the am. saliva tests show she is low in am and high at night. the opposite is suppose to occur. so far the PS is helping. it is not cheap though.

thank you! i know all of this is so overwhelming. i really like trying to find causes vs just treating symptoms. i am hopeful addressing strep will bring her some relief. we will see.

anna, my daughter's ocd stuff started all of a sudden. if you read about pandas that is what typically happens. she did not have this as a young child. she was a bit more of a worrier but that is all.

she has been gluten free/casein free, msg and nitrate free for 1.5 years. we have a nutritional specialist kelly dorfman, wrote book what is eating your child. we see a naturopathic dr and have many things and continue like probiotics, dig enzymes, b12 injections. i have pretty much exhausted most of natural methods. it is obviously not going to be easy to heal her. there is a big connection with strep and psoriasis as well as ocd behaviors. i think i may now be getting at root cause. her naturopathic dr all along felt her problems were coming from an infection.

i am gluten free too, i feel so much better without gluten. i have hash's as well.

My daughter is 15 y/o dx'd with dysautonomia Sept 2011. We thought it may be PANDAS at the beginning due to the ocd issues and hx of strep. now i find out dysautonomia can be caused by infection like strep. So wondering if we are dealing with both. Anyone with children with ocd from strep and dysautonomia. i feel like every time i turn around i need a specialist for a different problem. ugh! my daughter continues to have ocd issues. Wondering if we should add in antibiotic again. then i read that patients with mcad can get worse with antibiotics. Dr A thinks she may have mcad. she also has hashimotos and psoriasis and major allergies.

thinking of having primary care run antibody tests like: anticardolipin, ANA...what others would be helpful?

Thanks

julie

That is the first test Dr. abdallah did on my daughter. he had her stand up takes shoes and socks off and i stood by her with my shoes and socks off (i was the "normal" subject). within 5- 10 minutes her feet looked like yours and her pupils got bigger. he pointed this out and said the brain is sensing not enough blood back to heart and sends out adrenaline to get heart pumping faster, that is why pupils dilate. he said look how white her face is. meanwhile my 47 y/o feet stayed normal color. he also had her put one arm up over her head and then bring it down to compare to other arm. the arm would be normal in color overhead but once brought down it would change to darker color from pooling. your primary does NOT know what they are talking about!!!!!!!!!! he then examined my dgtr lying down and her face color warmed up. he pointed out all the signs to us. it makes so much sense. It is amazing how many doctors have looked at my daughter and then once you see a ANS specialist it is easily picked up. You may have to go out of state to get confirmation.

Funny, about 2 months ago I had gone on to Dr. Oz's website and requested they do a show on dysautonomia. It was actually my husband's idea. It was right after my daughter got diagnosed. I think we need to increase awareness, it took a few years to finally get a diagnosis because no one knows about it. I have a friend that is a pediatric neurosurgeon and he had never heard about it. amazes me.

my 15 y/o daughter has psoriasis and hashimotos and now dysautonomia. everything began to go downhill at puberty:(

Julie I am new to this site. Good to hear you had a great experience. I sent you a message privately. Thank you for any insight you may have:)) Wishing you the best!!

My daughter too has huge pupils and they are their largest when she feels really bad. I can use them as a gauge on how she is doing. It really has not much to do with the amount of light in the room. I think of it has increase sympathetic activity.

My daughter got in with Dr. Goodman Nov. 1st. We are looking forward to gaining more insight:)

Thanks Issie. Do you see adolescents being treated at Mayo? I will call this am to find out. I appreciate the tip on dr. lewis. I will update on how our appt goes today. I pray he can help us:)

thank you. My daughter has many many food and inhalant allergies...wonder if this is part of it? I was told all her symptoms were coming from allergies. even cardiologist one year ago told us that...I will call monday to check on getting appt with dr goodman.

Does Dr. Goodman see 15 y/o? I will definitely call on Monday. I was going to have her cardiologist make the referral. I am so glad to hear there is a good provider in AZ. We are still trying to get in with Beverly, Grubbs NP. It is a long wait.

Thanks,

J

Thank you for your reply. cardiologist in hospital started florinef and salt tabs. this is helping her dizziness. He currently has 3 patients with dysautonomia. Daughter still has brain fog, irritability, temperature regulation troubles, fatigue, anxiety, heart racing, pupils dilate big when feeling bad...hard part is the poor ability to concentrate for school work.

Is it easier to get into some of the other autonomic testing centers?

My daughter has been ill for a while. She recently was hospitalized due to tachycardia (host of other symptoms) and now has diagnosis of dysautonomia. We see a new cardiologist on Monday. We live in phoenix area.

My question is does Dr. Goodman at Mayo's see 15 y/o?

Where should I take her to determine what type of POTS? I know her heart rate goes up 30 points upon standing. She has all the symptoms.

We are trying to get her in with Beverly, Dr. Grubb's NP. It is a 4-6 month wait. She has missed two weeks of school. She is an A honor student.

We are worried and need some direction...

Thanks,

J