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401dave

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Everything posted by 401dave

  1. Do you think that's why I got such a flare after the ivig ? I can't see any other explanation . This is confusing
  2. Yes if you know any Lyme doctors that would be great. My family is calling on stop everyday looking for doctors because I'm that bad.
  3. O I tried LDN once and it flared my symtoms so bad for some odd reason. And yes I'm trying right now to get in with infectious disease at mass general in boston. Thanks for everyone's input
  4. I would love for it it to be Lyme , get treated and get better but I was treated with iv antibiotics 7 years ago and have been on all different antibiotics since... it did test positive but how would I still have that ? It's making it hard to believe.
  5. Yes actually my Lyme test just came back positive twice , it was done at mass general, and another doctor said the same thing your saying but it's just hard to believe because I've been on antibiotics right threw so I feel like it would have taking care of the Lyme ?. This flare is so bad after this treatment and no antibiotics are relieving the symtoms so I'm in a pretty bad spot right now.
  6. I had ivig September 9th and 10th 2016 and I had the most terrible case of my symtoms getting worse and they have just stayed like that. It's now oct 24 and I still feel the effects along with a stiff neck body aches and throwing up. Does anyone know how long ivig stays in your body? Or the effects? Thank you
  7. I hope so. The thing is I can fight infections, I didn't have any infection when I took prednisone and the prednisone flared me up bad then I decided to do ivig and it made me so much worse. I think I dug myself into a deep hole with the ivig. But I'm a mass general in Boston now , I had to be admitted my symtoms are so extreme. So hopefully they give me the Plasmapharesis and it works. It's pretty much my last chance at this because antibiotics don't seem to be working.
  8. Well my situation I think is pretty crazy. Long story short I had inflammation is my nose from a neti pot that I herd would be good to prevent infections so I started using it and I was putting all kinds of thing like a lot of salt and tea tree oil and it burned my nose an flared my symtoms , so I had to take prednisone for the swelling so the antibodies could start to come down in which flared my symtoms even worse so now I'm stuck . So I don't even have an infection going on. So I'm confused as to why the antibodies aren't coming down on there own. So I pray that treatment works for me.
  9. Thank you that definently gives me some hope. Usually antibiotics take me out of a flare even if there is no infection. Some medicines like prednisone or clonazapam if I'm on them for to long will put me in a bad flare but antibiotics always seems to take me out of them for some reason but I've used so many there starting to lose effect. I was so sick a month ago and when I did Ivig I thought it was gonna be a huge turn around for me but I ended up twice as bad an now I'm desperate being stuck in this flare. I just didn't know Plasmapheresis would require so many treatments. Of course I'm sti
  10. If anyone knows anything about the success of Plasmapheresis ? I am in a extremely bad flare and I can't get out of it . Antibiotics won't work anymore and ivig made all my symtoms way worse. It's pretty much the only shot I have left of a treatment.
  11. Ok thank you. Are you familiar with Plasmapheresis at all I'm really sick and ivig didn't work and I can't get out of this flare
  12. I'm in a pandas flare and can't get out of it my parents and I are trying to pick apart everything. Can acid reflux cause someone to stay in a flare? I clear my throat once in a while, cough once in a while , and once a few weeks ago I did notice really bad acid reflux but that was just one night . Maybe it could be silent reflux I have no idea , if anyone knows?
  13. I just had ivig 3 weeks ago and was also on clindamycin. I have had ivig and it has worked before but this time everything got so much worse and I'm in a horrible position right now . Does anyone have any experience on clindamycin and ivig being a bad mix? I'm going to start a immune suppressant tommorow so maybe that will put me in the right direction.
  14. Nothing really happens when I take ibuprofen and I have to be careful with things I take. I get flares from infections but I also will get them from drugs to, prednisone put me in this current flare, calozapam is also equivalent to me having a full blown strep infection, I just can't take those drugs. But the ivig really made all my symptoms worse and there's no denying depression at this point , I just hope this starts to turn around soon
  15. Yes! I'm pretty much regretting the treatment at this point all my symptoms are way worse and it's already been almost two weeks. I guess this is what's supposed to happen before you get better but it's definently terrible right now. I guess all I can do is wait
  16. No infection that I am aware of , it's usually only if I get a sinus infection or strep that I get this. But after ivig I did get nausea and a headache for about 3 days after then it went away. As crazy as it sounds I would love all of these symptoms to be from the ivig irritating things because I guess that means it's working. And yes I do have a increase in OCD and some extremely weird thoughts going on since ivig. The problem is I already can't think rationally as it is because I'm in a flare and it effects my brain in that way. But the only other thing I'm taking is clyndomycn and I have r
  17. Ok thanks maybe it is that , this might be a bad idea. But I'm having doctor b change my antibiotic because I'm scared it might be the antibiotic that's causing my symptoms even though it's probably the ivig. Damn I don't know this is a nightmare .
  18. I'm not sure if this is going to make much sense right now because I'm in a pandas flare, but I just had ivig 12 days ago and I have only noticed that my symptoms have gotten worse a few days after my ivig and still just as bad 12 days later , I've been sick for so long and I just need some positive feedback if anybody has any experience with ivig. I'm 27 so I don't know if that makes a difference in time it takes to work. Thanks
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