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kakrpa

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Everything posted by kakrpa

  1. kakrpa
    This thread is old and i can only hope @christianmom and a few others OR new people can shed some light on this - I too have low IgE levels (3 to be exact) and low IgG4. I have also tested previously for low serum histamine. Guess what else? I struggle with severe anxiety/OCD (pretty much out of nowhere - started in 2002ish). There's got to be a connection here and am hoping to resurrect this topic. Help?
  2. kakrpa
    emst, rhodiola is good for anxiety?? How long has ur DS been using this? Tks!
  3. kakrpa
    If it's a diff Dr, sorry, but I just read about this on another forum.
  4. kakrpa
    Hi Teri, are you referring to Dr. Bradsreeet? http://www.healthnutnews.com/famous-florida-autism-researcher-and-doctor-jeff-bradstreet-died-of-alleged-self-inflicted-gunshot-wound-and-found-in-a-river/
  5. kakrpa
    Hi Christianmom, glad to hear ur son is doing well. I suffer from OCD too (I'm 36 and this began age 22-23) and have a great psychiatrist. He treats me like I'm someone whose brain isn't working right, just like someone who's diabetic has a metabolic issue. Anyways, in my experience, if you've found through trial and error particular rx's that work and /or don't work, the right psychiatrist won't want to switch that up (esp if the current regime is working). If possible, I'd have all his med hx re the dx and the tried rx's sent to the psychiatrist u go to, prior to initial visit. Also, does Dr H, or anyone in Lyme groups, know of a psych to recommend in ur area? Referrals usually are the best place to start. If u meet with a psych and know theyre not the right fit, or they're wanting to force u down a rx path u know isn't right for ur son, then move on. Quickly. HTH!
  6. kakrpa
    I'm sorry to hear your DD is struggling so much. I too at one point (age 22) decided in my anxiety/ocd journey to give rx a chance. I'm forever grateful for it too. No one WANTS to take medicine (I barely EVER went to the Dr before all of this), but u have to decide which is the lesser of the two evils so to speak. I was started on lexapro and it helped greatly,but I was also a young adult at that point so can't speak to which med would be best to try. Keep us posted?
  7. kakrpa
    Hi all! Starting Biaxin tonight to address high myco p titers. Any experiences good or bad? I'm hoping addressing myco p will finally reduce severe anxiety/OCD (PANDAS symptoms).
  8. kakrpa
    Anyone?
  9. kakrpa
    HI all, have an appt with Dr T in a couple of weeks to discuss these cunningham panel tests. Wondering if you all might be able to help provide some insight prior to meeting with him. 2 results were within normal range, so I only listed ones that were questionable. Help? Anti dopamine receptor D2L = 8000 (range 2000-8000) Anti tubulin = 1000 (range 250-1000) Cam Kinase II = 125 (range 53-130)
  10. kakrpa
    Hi, I'm curious to see what others have to say - hoping my reply will also help bump your post. I'm getting my Cunningham test kit in the mail soon so it will be interesting to compare results.
  11. kakrpa
    Ophelia - very happy you have some answers and info! I didn't realize you suffer from OCD too - I saw that in your footer bio. I suffer from severe OCD (pure-O kind - constant worry/rumination). It's horrible. I've had many tests done but none of the ones you mention above, so I'll be curious to see if/what helps to explain OCD, etc.
  12. kakrpa
    Hi, just wanted to chime in that I'm an adult with severe OCD. I too had bothersome thoughts and started out on a couple of antidepressants that helped a bit. But what seemed to help the most was xanax. I know it's probably not what you want to hear, and I'm assuming this is for a child, so I don't know how helpful this is, but that's the reality of my experience. I feel so much for anyone that has to go through this. ((hugs))
  13. kakrpa
    I suggest starting with Dr kovacevic in chicago...
  14. kakrpa
    This is merely a guess, but I'd say yes. If the car had gotten super warm, as if you had left them in the car during the summer, however, I would probably throw them out.
  15. kakrpa
    Hi all, I have very high titers of coxsackie a/b, mycoplasma p, EBV, HHV-6, and was rx'd Valtrex by Dr T. I started it last week for a few days (took half dose for 2 days, then full dose for 1 or 2 days?) and then stopped due to what I thought might be side effects. In general I was noticing an increase in anxiety and emotional lability. It's certainly possible this was coincidental and not related to Valtrex - I don't know. I really want to give it a try though and see if it helps me - Dr T wants me to too (we're hoping by reducing titers my anxiety/OCD sx will improve). Anyone out there with good, bad, or indifferent experiences?? How long did you take it and when did you notice improvement? Thank you all so much...
  16. kakrpa
    You all are awesome - thank u so much. I did get back some additional lab work. The below are reported high. Thoughts? EBV Ab VCA, IgG = 54.8 (range 0-17.9) HHV 6 IgG antibodies = 7.78 (range 0-0.99) These results are in addition to previous lab (about a month ago) that revealed high coxackie a, b, and high mycoplasma p. Also low IgG.
  17. kakrpa
    I'm working with a PANS specialist, and would like to show my results to my regular Dr and Psych Dr, but am afraid of being dismissed. Since already dx OCD, I'm afraid w/o more proof I'll just be dismissed.
  18. kakrpa
    Thanks pr40, you're right...forgot about that. OCD onset was rapid (for a 22yo it happened a few weeks after what we're now thinking was pneumoniae). Labs show very high Coxsackie a and b levels, high mycoplasma, and low IgG.
  19. kakrpa
    Hi all, I know there's a symptom severity scale to help clinically dx PANS/PANDAS, but are there any guidelines/diagnostic criteria for blood results that dx PANS? For example: high coxsackie levels + high mycoplasma + dx OCD = PANS. Again, that's just an example - wondering if there are blood/lab based results that clinically determine PANS dx. Thank ya
  20. kakrpa
    Just sharing an update...going to stop valtrex. Been on for 5 days, taking only half dose first couple of days to ramp up. Then started taking full dose yesterday and I'm definitely more emotional, depressed (was doing fairly well before), and anxious (which is already my biggest battle). It's not horrible, but I know my sign, and don't want to risk making my anxiety/ocd worse...and I'll not be taking anymore.
  21. kakrpa
    @nicklemama thank u...I'm glad to hear ur DS has normal levels. Did he used to have high Coxsackie levels? If so, did u use Buhner protocol??
  22. kakrpa
    @mayzoo yep, that's right...Go Big or Go Home! LOL Did u guys ever try valtrex? I'm glad to hear shes doing better,.except for recent flare. I hope to get better too...
  23. kakrpa
    Wow mayzoo, those are some high numbers - I think I can relate. I bet you both have been through a lot. Is there any particular part of your regimen that has seemed to help the most? Least? Btw, I'm waiting for my HHV6 and EBV results too.
  24. kakrpa
    I agree nicklemama! Have you all heard of such high levels causing anxiety/OCD? I feel like I've been down this road before (of thinking I've found the cause of my out of nowhere anxiety/OCD), and am afraid of setting myself up. I've been started on Valtrex, and am only a few days in, so we'll see how it goes. What type of lab results did your son have? Myco? Coxsackie? Thanks for your input - it greatly helps to not feel so alone.
  25. kakrpa
    I'm interested in this too...following.
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