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

    Have you seen our PANDAS eBook?  Our book is a helpful primer in a friendly question & answer format.  This eBook contains useful information to understand the symptoms of PANDAS, how it is diagnosed (including lab tests), the different types of treatments, approaches for prevention, and how to find the help and support that you need.  Your satisfaction is guaranteed. Learn more

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Jesse

Southern California Adult PANDAS Dr Needed

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Hi everyone,

I'm looking for a PANDAS doctor in Southern California who will treat adult patients and is willing to prescribe PEX, CellCept, Immuran, Rituximab, Prednisone, in addition to IVIG and antibiotics. 

I'm new here. 31 year old man who fell ill with an upper respiratory infection December 2016. I recovered from the acute phase, but a set of debilitating symptoms followed:

  • Anxiety / depression / irritability
  • Physical fatigue and low stamina 
  • Physical weakness and malaise
  • Increased heart rate on standing and walking
  • Chest pain
  • Breathlessness w/ exertion
  • Dizziness / lightheadedness on standing
  • Cognitive dysfunction
  • Light sleep

I have been on IVIG for 4 months at increasing dosages (up to 105g now) with some good improvement. I am also taking 5mg of LDN and many supplements.

The chest pain is 99% gone, I can drive, walk 2-3.5k steps a day, have less malaise, and cognitive dysfunction. However I am still unable to return to work so I'm looking for a doctor who can help me continue my healing with second line treatments. 

Relevant lab findings

Type
Component
Reference Range
Value
       
       
       
Cytokines
IL-6 0 - 5 80
IFN-y 0 - 5 40
TNFa <=22 58
       
Metabolites
Pyruvate 2/8/17: <= 6.4; 6/8/17: 7-32 15.9
Cis-Aconitate 2/8/17: 18 - 78; 6/8/17: 10-36 <DL
Isocitrate 2/8/17: 39 - 143; 6/8/17: 22-65 13
       
Auto Antibodies
Anti alpha-1-adrenergic antibodies <7.0 U/ml: negative 10
Anti-muscarinic cholinergic receptor 4 antibodies 5.0-7.0 U/ml: at risk 6.9
     
Intrinsic Factor antibodies 0.1-1.2 1.19
Myocardial Peptide antibodies 0.1-1.5 1.89
Thyroid Peroxidase antibodies 0.1-1.3 1.4
Thyroglobulin <=1.0 U/ml 6
Thyroid Peroxide antibodies <9 IU/ml 15
     
Anti-Dopamine Receptor D1 500-2,000 1:32,000
Anti-Dopamine Receptor D2L 2,000-8,000 1:32,000
Anti-Lysoganglioside GM1 80-320 1:1,280
Anti-Tubulin 250-1,000 1:16,000
CaM Kinase II 53-130 130
     
Rheumatoid Factor IGM >6 11
       
Pathogens
Coxsackie B4 virus <1:10 1:640
Mycoplasma pneumoniae IgM <770 U/mL 1327
Yeast None, rare, few Many
DNSB 0050220 (Strep) < 260 U/mL 268
  `    
Immunological Natural killer cells functional 7-125 LU30 9
Edited by Jesse

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