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Hello all you amazing, fighting Moms and Dads, Was looking for a holistic doc in the NY/CT area who treats Lyme/Pans and made an appointment with him. The other 2 integrative docs were much more expensive so I'm a bit worried that he isn't as good. Hopefully it's just capitalism trying to trick me :-) If anyone has or knows of this doc any info would be greatly appreciated. The other two crazy expensive docs that I'll take her to if need be are Kenneth Bock in Red Hook, NY and Elena Frid in NYC. TIA and best wishes to all!
Southern California Adult PANDAS Dr Needed
Jesse posted a topic in PANS / PANDAS (Lyme included)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
Looking for any Guidance...
SAR2011 posted a topic in PANS / PANDAS (Lyme included)I apologize in advance because I know there are several similar posts. I know this because I’ve been reading the forums for a while now but I am desperately seeking guidance at this point. Prior to Labor Day of this year, our four year-old son was an extremely verbal, high-functioning 4-year-old boy with normal physical, psychological, and academic development. Then, seemingly out of nowhere, he started having terrible nightmares that eventually evolved into daytime hallucinations. He also experienced a significant regression in speech. We noticed a severe deterioration in his sleep patterns and additional changes in his behaviors and personality. He developed an ever-changing pattern of nervous tics and his regression got to the point where our son was (is) almost entirely non-verbal and is consumed by anxiety that has significantly impeded his well-being. We have to drive him around in the car at night, often for hours at a time, in an effort to calm him enough to go to sleep. I should’ve mentioned that he had strep throat in mid-August, which was treated with 10 days of amoxicillin. Although we live in northern New Jersey, we brought him to CHOP in October because of their infallible reputation for pediatric neurology. Our son has since been hospitalized at CHOP for three different stays, during which he has given more than forty different blood panels, sat through three EEGs, two MRIs, a lumbar puncture, one abdominal ultrasound, and one throat Doppler. Unfortunately, none of these tests and procedures resulted in a diagnosis for what is suddenly ailing our boy. Each attempt to determine if there is an organic, metabolic, or genetic issue has failed to produce conclusive results. In reading all of the symptoms of PANDAS/PANS, it certainly seems like this is what is plaguing our son. However, none of the extensive blood work that was done at CHOP has resulted in markers that typically indicate PANDAS/PANS. I know that this doesn’t eliminate the possibility and from what I’ve read on here, it sounds like CHOP doesn’t exactly embrace the PANDAS diagnosis. My wife is in her third trimester with our fourth child and we are at wit’s end in trying to determine what our next step should be to help treat our son. We met with Dr. Elias at Dupont in mid-December but were kind of left in limbo there. We are scheduled to go back in early February (her first available) but, as many of you know, six weeks is an eternity at this point. We feel like we are on an island and have no clue where to turn to help get him better. I’ve researched several doctors in the NY/NY/CT area (Dr T, Dr B, etc) but it seems as if every positive review is followed by a scathing one. I’m sorry for writing a novel but we are desperately in need of help. We want to help get our child the proper diagnosis, which we believe to be PANS, and get him treated aggressively and quickly. Thanks for listening.
Doctors who Skype
puppydog posted a topic in PANS / PANDAS (Lyme included)We can't travel easily. Can anyone tell me which PANS doctors will Skype? Thanks
Doctors in Georgia or N. Florida
hkp901 posted a topic in PANS / PANDAS (Lyme included)Hello all, I just joined the group. My 7 year old son is being tested for the strep strain today by his pediatrician, but I need to find a doctor who will take a PANDAS patient. He local doctor knows nothing about this illness. I have called 2 already and they are not accepting new patients. Any recommendations? Thanks!
Update: Can't find local doctor to oversee ivig.
Guest posted a topic in PANS / PANDAS (Lyme included)So over the past couple of months we worked really hard and ivig was approved for the diagnosis of autoimmune encephalitis. I had to go back up to NYU for a week inpatient, and it was the hardest thing I've EVER DONE because of how sick I am, how bad my bladder is, and how bad the ocd is. I came home expecting to get back to ivig but there is a HUGE HICCUP. I am only approved for ivig at one of the local hospitals (the main one where my mom works) but we cannot find a doctor to manage and oversee treatment and any potential side effects, even though I tolerated ivig better than any medication I've ever taken. We saw an: immunologist, and rheumatologist and they refused to take on my case. Then I was referred to 2 different neuro's and they both refused to see me. They all say they've never heard of AE and can't help and all seem scared and worried. I contacted doctors at nyu and they don't know anyone in the south except duke which is 9 hours away. I contact AE alliance and they said there's nobody in my area. Insurance will only do LOCAL IVIG AT LOCAL HOSPITAL. My bladder and ocd are getting worse, they feed off of each other. My mind is now telling me that all these things are bad there's a huge list of things I can't do according to ocd so it leaves me with essentially nothing to do. I feel like I can't go on even another 6 months to try treatment, it's just that bad. Bladder keeps me from having any enjoyment or sleep or rest in life. Insurance has denied botox treatment and I've tried everything else for IC. OCD latches onto everything I enjoy and tries to destroy it, I can't even watch t.v. or movies so there's nothign I can do but sit in a chair all day and lie in bed, can't listen to music either, it's out of control. Have therapy helped anyone? My psychologist is great but nothing has helped with ocd in past 5 years that we've tried.
Anyone in the south?
Guest posted a topic in PANS / PANDAS (Lyme included)Any neurologists or knowledgeable doctors in the south, who will have an understanding of not only pandas / pans BUT neuroinflammation + autoimmunity in correlation with neuropsychiatric symptoms?? I'm looking for someone who will prescribe and understands ivig and pex (already done abx and antiviral). Any of the major cities like Atlanta would be great. I am searching the web and coming up empty handed besides Dr. N and a Dr. Brian Fallon in NY who's main focus is lyme. I've found some researchers, but can't seem to find treating physicians. Would prefer not to travel a far distance. Also, long term immune suppressants would be hugely detrimental to chronic fatigue syndrome. The most effective drug has been ampligen (not available for patients now) b/c it regulates the immune system and had strong anti-viral and anti infectious properties. I hear ivig works similarly and is much cheaper. Southern U.S. Thx.
Have any of you been fortunate to find a Specialist that will communicate with you by email or a nurse line. The specialist I took my son to last December will do 30 minutes phone conferences for $175. I tried to ask a simple questions about a reaction to a medication and the staff said that I would need to set up a conference call. Is this how most specialist in the area of PANS/PANDAS and Lyme treat patients. I have insurance and they will not pay on conference calls like this. I have a cardiologist that works with us weekly by email and calls my house at least once a month. This doctor is willing to collabotate with other doctors since this condition is affecting DS blood pressure and heart rate. I guess the other question, I need to ask is Will your specialist collaborate with your main doctor? Hope I am not confusing you. I live in Oklahoma and our insurance will allow us to go see other specialist but treatment with IV has to stay within our state. Rachel