Jump to content
ACN Latitudes Forums


  • Content Count

  • Joined

  • Last visited

1 Follower

About BeenThere

  • Rank

Recent Profile Visitors

840 profile views
  1. @jan251 - What does this "common change" decreasing CamKII and increasing Anti-tubulin mean? We have done the CP twice - first in August 2017 and now Feb 2019. D1 stayed same at 4000, D2 same at 4000, ALgm1 went from 160 to 320, anti-tubulin from 1000 to 2000, the CamKII went from 131 to 113. No one has been able to tell us what this signifies. We have been told that the CP is proof that there is an auto-immune antibody mediated issue. We ordered the 2nd teat to provide current proof in order to request PEX. DS (23) has been under treatment with abx, supplements, paleo diet,
  2. @maryangela Thanks so much! We just completed round two of HD IVIG . We did not get any response from first round - also nothing worse. Hoping for something on second. We have cleared more co-infections (per Igenix, Quest and Labcorp) but it seems like something always pops up, even though DS is not symptomatic for anything. He was low positive, then negative, now again low positive for Mycoplasma IGM but has never been sick, had fever, nothing. He finally killed off Babesia duncani and bartonella - but is now "indeterminate" for TB relapsing fever. Honestly I'm not even sure I beli
  3. Please help. We are on our 2nd round with Pandas and now Lyme co-infections with my DS(23). Twelve years ago he responded beautifully to abx. This time he has not responded to abx or to one round of IVIG (no response at 8 weeks). He has treated yeast successfully, mycoplasma and H pylori successfully, no active strep or viruses, although ASOs still high 400s and Dnase B at 300. Babesia duncani at 40, and possibly some bartonella - although no symptoms for any lyme or co-infections. Physically he is the picture of health. His symptoms as an adult are invisible but still debilitating - ex
  4. Hi Maryangela, My DS' official diagnosis is autoimmune encephalitis with PANDAS. His Dr has always said one round of IVIG should take care of it., although she originally requested 4 rounds of IVIG over 4 months. Insurance co said NO - because he was also diagnosed with Pandas. Were you able to get insurance cover with the encephalitis protocol? Is your monthly HD IVIG projected to continue indefinitely?
  5. It has been 7 weeks since 2 days of HD IVIG and there has been no perceptible change, I am very saddened to say. I am surprised as DS health has never been better - gut health good, no strep or colds since Dec when tonsils removed, gluten free, sugar-free, dairy free diet. Strong pro-biotics and de-tox. But he is feeling the same - very socially anxious and isolated with depression that waxes and wanes but never goes away. Dr. says it's early after IVIG but I read about kids who respond in 2-4 weeks, at least have some improvement. We are running a huge panel of tests again to check for in
  6. @tj21 Heelo again. Saw you on Adults with Pandas thread..... We have UHC through my employer, JPMC. UHC agreed to accept our out-of-network NP in Northern California as in-network. She is the sole provider in 100 miles of us as Stanford refused to see my son. She recommends IVIG. So UHC agreed that she is the best option for a provider but then refused to pay for IVIG. What was your son's diagnosis when you got the IVIG approved through UHC? Everyone said insurance would not cover, but I think I should appeal.
  7. @tj21 Thanks for sharing your experience. The experience of helping an adult child is so challenging. I neglected to mention that my son experienced a flare starting 2 1/2 weeks after IVIG and it lasted about a week. It consisted of apathy / depression, in addition to the social anxiety. However, even during the flare he continued to go to work, work out, read. He is living 3 hours away so I came to stay with him. He seems better now, but still isolated and socially anxious. Is your plan of IVIG every 3 months due to Immune Deficiency or PANDAS specifically? Are you dealing
  8. Also, to this forum I wanted to update my son's progress since June: --He was able to go back to college and very successfully complete 2 summer school courses. This was pivotal as he had been worried that he was losing cognitive function and possibly experiencing permanent cognitive decline. His coursework was very advanced, requiring a lot of reading and practice sets. He pulled As in both classes. --we continue to test and treat for lyme and co-infections. So far he tests to have eradicated mycoplasma, erlichiosis, rhichettosis. Still has babesia at 40, tested positive for ba
  9. @strenthandsunshin. I will say that, hearing you are still working toward recovery after 30 years, well it kind of took my breath away. I keep hoping that it is possible to get to a long-lasting cure or remission. Are you strictly PANS - PANDAS or lyme and co-infections. What has been and is your experience and treatments? Thanks for sharing....
  10. MSmom, my son had tonsils out last December at 22 and fared pretty well. Extreme pain for 1 day but pretty much fine by 8-9 days. He used a humidifier at night so did not dry out. He only had to take the strong painkillers one day then just motrin and aleve. Slept with head elevated to allow drainage and reduce swelling in throat. Best part though is that he started sleeping through the night, could breathe through his nose and not wake up with congestion. He had always sounded like he had sinus congestion and that all cleared out. I have to think if your son is prone to sinus infection
  11. If you are o the East Coast are you aware of the relatively new Lyme and Pans Treatment Center in Cohasset MA? I don't know anyone who has gone there but it seems comprehensive and they will work with adults unlike the other major Pandas Centers. Has your son had comprehensive testing for Lyme and other co-infections? When we finally got the Igenix testing in Jan '18 I was shocked at how many co-infections my son had. He was asymptomatic for them. He had systemic yeast, mycoplasma, babesia, bartonella, and strep titers still at 500 after 12 months on abx - starting at 950, eventually down
  12. I'm a little late but have to respond because our symptoms change meant that we - who were experienced with PANDAS - completely missed the "after puberty relapse" for 2 years. Our son was diagnosed in 2010 or 11 at age 11. We, the parents found this and worked to show and educate his pediatrician about PANDAS. The symptoms at 11 years old were obvious - vocal and facial tics, tapping and counting, repetitive phrases and eventually only those phrases. But he was a happy ticcer. CBT did nothing as they said he was not anxious or depressed, but he had to do things his brain told him to do.
  13. Oh we did that last August - it was positive in 3 of the 5. The doctor who diagnosed him back in 2006 (now retired) was able to order the test, but is not active n the field anymore. The Moleculera Labs people interpreted the results for us. The PANDAS diagnosis was/is as strong as they come, that did not matter - he still could not get medical care due to his age. I hope we are on the right track now with the PANDAS specialist we have, at least we have been able to get more tests and start treating him but we wasted a year - even though we had the diagnosis - because everyone refuse
  14. I would also add that my on was tested for lyme 3 times by different doctors, infectious disease, rheumatologist, internal med (but none PANDAS-literate because those people refused to help him) in SF and Boston and all came back negative for Western Blot. There was never further testing - we felt relieved as it was something we did not have to be concerned with. But when we found the Pandas specialist here after my son totally crashed, she ordered a plethora of tests through Igenix. That is when we learned about the bartonella and babesia. Don't waste your time with LabCorp and Quest. Th
  15. My son had to have emergency tonsillectomy during finals week of fall semester (regret immensely not following our instincts way Back in 2001 and insisting they be removed) and pulled out of his senior spring - missed commencement week and graduation this week. He sees his parallel life going on without him. We are seeing someone now, a PANDAS specialist. DS is being treated for lyme-related co-infections although he has been asymptomatic for traditional lyme symptoms. No one was talking about all the co-infections back in 2006. Now it seems liike most kids have something related t
  • Create New...