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Everything posted by Bordercollie

  1. can you tell me what tests you used to get Lyme and babesia diagnosis.? We used IGENIX. Western Blot was neg. for LYME. So we worked with a Lyme doc and my son was on Mepron and Augmentin XR and had such herxing he refused to continue. he got huge cyst on his body and warts. he also has an immune def and no protection to strep so gets low dose IVIG monthly. Are your children getting IV antibiotics for Lyme? Thanks Bordercollie Looking forward to hearing from you.
  2. It was awesome. 80 attendees from as far away as Sweden and England. Speakers were great , but we needed 2 days rather than one. I was unable to stay after conference so don't know what advocacy steps were decided. Would love to see a parent's support group. I hope a video tape will be available of the conference. I felt hopeful when I left.
  3. I just bought 2 bottles of Jarrows probiotics 180 tabs each bottles for $21 each. they had free shipping and $10 coupon. It was from Iherb. PM for coupons which they sent me. Can't find them cheaper than this.
  4. My son gets 30 gms every 4 weeks and he weighs 160 pounds. So with input from you all I need to see if his doctor will make some changes. maybe he will go to a 21 day cycle and slowly increase his dose so he will get 1 gram per kilogram. I am a nurse and over time I would not mind if we could do it at home with another nurse here to watch him. Thank you everyone for all your help. I will let you know how our appt with the immunologist goes 19 Mar.
  5. My son is 28 diagnosed w PANDAS at age 14. HD IVIG at age 16 caused severe allergic reaction on first day so no second day dose given. No preop meds given for first day. Second HD IVIG given 2010 went well and started to see slight improvement. After 4 weeks developed Severe mono which he already had a case of at age 15. has at least 40 ear, strep and sinus infections from age one. Strep pneumoniae bloodwk done in Mar 2010 showed no protection at all. In May 2011 saw immunologist who gave him pneumovax inj. A month later he had full strep protection protection. 3 months later strep protection down by 50%. Diagnosed w Specific antibody deficiency to strep pneumoniae in Oct 2011. Started on LD IVIG Nov 2011 monthly at Stanford adult infusion CTR.Helped clear up all staph boils and 40 warts, but has done nothing for PANDAS -OCD and Tourette's both severe. Yesterday met with nurse educator for infusion CTR and her passion is immune deficiencies. She said that rather than giving LD IVIG monthly giving it subcutaneous under the abdominal skin keeps the IVIG at a more even level throughout the month. It can begone at an infusion center or at home with the parent or patient learning to do the one hour weekly procedure on their own. I have yet to find a doctor who will give HD IVIG and my question is will HD IVIG help the immune def and PANDAS at the same time. Go to Immune deficiency.org and there are many tools for clinicians and patients plus a conference which will be held in Baltimore in Jun 2013. I am concerned because isome immunologists seemed interested in treating immune def, but not PANDAS. So do I need to find another doctor to treat the PANDAS. It was a very enlightening day for me.
  6. Want to have tonsils out. had HD IVIG SEpt 2010 and developed severe mono. May try PEX, but right now the doctors seemed concerned about immune deficiency.
  7. I have a 28 y.o. Son who developed PANDAS at age 14. Also has an immune deficiency to strep pneumoniae. has severe OCD and Tourette's despite IVIG. Due to immune def. gets boils and warts. Now getting low dose IVIG monthly which helps with boils and warts, but hasn't helped other problems. Has severe frequency and NE. saw urologist lately who said urinary tract and bladders fine. I have read that the basal ganglia are causing this. Pls PM me and you can call me. So sorry for your family, but glad you found this site. it has been a life saver to me.
  8. Where in N.Ca do u live. My son has PANDAS plus immune def. gets IVIG monthly. Has been sick for 14 yrs. and is 28. Where is hematologist.
  9. Yes tested positive for lymes and babesia, but got second opinions from inf. disease and immunologist and they said he did not have it. tried Mepron for 3 wks and his body broke out in these huge boils. My son refuses to do deep brain stimulation. what is rtms? Hoew are you doing?
  10. He had PANDAS for 12 yrs before a doctor tried prednisone taper. It was only 6 days taper and only lasted improvement for a few days and this was before the IVIG. IVIG helped for one month and then developed severe mono and just recently diagnosed with primary immune deficiency. Good luck with you children. I will let you know how my son does.
  11. My son has the same problem with no protection for strep pneumoniae. He had pneumovax vaccine and his protection one moth later was 100%. 4 months later his protection dropped to 50%. So he was diagnosed with an immune deficiency. he will get 30. Grams of IVIG over 4 hrs every 4 weeks indefinitely. In Sept 2010 he had high dose 1.5 kg over 2 days and did ok the first month and then developed a severe case of mono that lasted 10 weeks even though he has mono 12 yrs before. He is 28 and was diagnosed with PANDAS at age 14. He has not responded to antibiotic, but a six day prednisone taper helped. So if I were you I would not do the HD IVIG because I do not think it helps the immune problem. it is a complex issue and I still have many questions about what immune deficiency disease he has since there are about 20 different sub categories. Also I believe he may need this for the rest of his life. he was getting all kinds of staph infection and warts which is a virus. I hope this information helps.
  12. I took my 27 year old son to see her for a very complicated case of PANDAS diagnosed at age 14. She was wonderful and recommended HD IVIG. We had it done at Walter Reed and all went well until one month out he got a bad case of mono. We went from CA to Bethesda to see her. She is the best.
  13. Unknown. Already had mono before at age 15 (now 27). Fever was around 100 degrees.
  14. If it continues have him checked for mono. Have them do a mono spot and epstein Barr virus. My son had IVIG at end Sept 2010 and 4 wks later developed mono. It has been rough and I hope your son does not have it. It is rare. He started w complaints of aching bones. Good Luck.
  15. http://www.bcbs.com/news/plans/pam-kehaly-named-president-of.html Here is the notice of the new President to Anthem BCBS. Good Luck.
  16. I tried to register through my facebook acct and it says wrong user name or password. Does anyone know how to login to blogtalk so I can use coffee klatch? Thanks
  17. My 27 y.o. Son had IVIG at the end of September. Thirty days later he got a bad case of mono that has lasted 2 months. Unfortunately we have seen no positive results of the IVIG. Your post is a eureka moment for me. He has mono 12 years before that. So now I believe that the prednisone he got for the pre IVIG and after for the headaches caused the mono. We are considering 2 more IVIG treatments in 2011 if he is will. Thanks for posting this.
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