Desperate, need PANDAS/PANS doc with admit privileges

[searching_for_help]

Does anyone know of a PANDAS/PANS literate doc who deals with adults and has hospital privileges?

 

DD is 22 and is shutting down. Her intrusive thoughts are horrible and she just wants to die. Her nurse practitioner is great about trying things, and has just started abx for Bart. Her psych is doing metals (she was high in mercury and lead). But nothing is helping. Her current docs are integrative, and don't have admitting privileges to any hospitals.

 

The misery she is going through is just unbearable for her and the rest of us. She's also anorexic, and doesn't want to eat. She's over 20 pounds underweight, which certainly doesn't help the immune problems. The eating disorder clinics we've dealt with don't believe in PANDAS/anorexia, and I'm sure won't continue the metals/Bart protocol if we admit her. She also has extreme exercise anxiety, and the places she's been in the past let her exercise all night. The thoughts tell her she HAS to, and the lack of sleep is horrible.

 

We need a doc knowledgeable in PANDAS/PANS, that can admit her into a regular hospital, where I can be there to monitor her eating/exercise. I know we'll have to travel at this point, but suicide is a constant topic and I don't think we have any other choices.

 

Any names of docs that might help us would be appreciated.

[SSS]

Wow, I'm so sorry!

 

I would think at this rock bottom point, dealing with metals is not the priority.

 

Getting her stabilized is- has she ever had a high dose IVIG? Something for inflammation/ to calm.

 

Sending good thoughts--------

[rowingmom]

If she just started antibiotics for bartonella she could be having a die-off reaction. Bartonella and it's endotoxins can cause significant psych/neuro disorders.

 

http://www.onehealthinitiative.com/publications/Breitschwerdt%20J%20Neuroparasitol%20Review%202012.pdf

 

I would try decreasing/stopping the abx, increasing anti-inflammatories (Japanese knotweed tincture, curcumin) and increasing detox protocols (lemon juice/stevia in water to drink, magnesium citrate supplementation, vit c supplementation, psyllium husk, Epsom salt baths if she can stand sulfate)

[sf_mom]

I agree with both SSS and RowingMom,

 

Heavy metal chelation will draw out the infections/viruses and new antibiotics for Bartonella will cause die-off response both contributing to an increase in symptoms. One option is to suspend current protocol until symptoms are tolerable.

 

For some perspective: We are waiting to chelate our older son until he has been fully detox from mold and has no symptoms. We suspect that will be next year sometime. He has been treated for 4 years.

[searching_for_help]

Thank you all for your responses. Thing is, she was ALREADY this bad BEFORE we started the metals and Bartonella protocols. Meaning, we started these out of desperation but they haven't started working - at least not yet, if they end up working at all.

 

From what the doc told us, and I've also learned via internet, is that if you have metals, it affects your immune system so you don't respond to abx treatment for other things. She tests positive for stuff and is treated with abx, but they never seem to work. So we are trying to rid metals to see if we can get her immune system working and the abx will finally start helping. He's also working with her methylation system. But things have been so bad for so long, I'm never sure from minute to minute if I can keep her eating and safe.

 

sss - yes, she has had HD IVIG. It was $15,000 down the drain for us. No improvement at all. Yes, she has also tried many anti-inflammatories. No positive results at all. It's almost like no meds, supplements, including psych meds, work. We've tried many of the "relaxing" herbs and supps as well: lemon balm, passion flower, valerian root, GABA, taurine, l-theanine, etc., etc.

 

I've pondered that H.Pylori, or something with the gut, is keeping her from utilizing the meds, but her last H.Pylori test came back negative. She had a positive IGG, but she was treated in the past and the IGM was negative. We've tried meds that would knock out a horse, but it doesn't touch her anxiety. The stronger ones just make her legs feel heavy.

 

Anyhoo, she was in bad shape before the metals and Bart. Something else is going on. Hoping the metals will clear and the immune system will get in better shape.

 

Thanks again for the responses. I appreciate all input!

[sf_mom]

From what the doc told us, and I've also learned via internet, is that if you have metals, it affects your immune system so you don't respond to abx treatment for other things. She tests positive for stuff and is treated with abx, but they never seem to work. So we are trying to rid metals to see if we can get her immune system working and the abx will finally start helping

 

 

Mold can also impact immune function and prevent you from making headway with Lyme or antibiotic therapies. Have you checked for mold yet? Oops, I think you did Real Time labs already. You should also run Shoemaker Panel as it could be an inability to detox biotoxin which wouldn't show up on Real Time results

Edited September 9, 2014 by sf_mom

[philamom]

Have you rechecked her thyroid levels yet?

[Hopeny]

Michael jenike at mass gen, I believe he is a psychiatrist but they have a pandas clinic based at mass gen. I do not have any personal experience but have read/heard about him, that's where I would go if I needed to. Do not in any circumstance go to boston children's hospital. Good luck

[ktdommer]

I have no advice, but want you to know that I know your pain and wish you the best. Suicidal young adults is a difficult thing. Heartbreaking. I always feel like there is no where to go for our sick, sick Lyme/PANS adult kids. Committing isn't always the answer especially since it most surely means the end of Lyme/PANs treatment.

What meds was your daughter taking prior to starting Bart meds? Is candida an issue?

Wishing answers for you and your family,

Kari