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BeenThere

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Everything posted by BeenThere

  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, and Nsaids for strep and lyme with several co-infections for the past year. Additionally he had tonsils and adenoids removed in Dec 2017 and has had two rounds of HD IVIG - in Aug 2018 and Nov 2018 - no effect. He has eradicated most or all of infectious agents (myco stays high - 800 as do ASO titres 550, but asymptomatic) but still has neuro-psychiatric symptoms of severe anxiety, depression / apathy that seems to wax and wane but is always present. Hew is unable to finish college or hold a job or even interact with people. We are trying to get PEX as we feel we need to remove the existing anti-bodies and then try a few rounds of IVIG to "re-set" immune system. We are waiting to hear if PEX will be approved. WE know IVIG is not - 3 appeals, all denied. Young adults are supposed to be easier to get PEX but we will see. Any insights?
  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 believe these tests anymore. How can this stuff come out of nowhere with no known exposure? DS (23) barely leaves the house and if he sees a child he runs to avoid them and their germs. How is your son doing - still continuing with the monthly HD IVIG? How many IVIGs did you have before seeing any response? Has the anxiety abated at all along with the OCD and tics? I have only heard "encephalitis protocol" referred to in relation to the Duke University program. Is there a recognized and accepted protocol associated with Autoimmune encephalitis? I have not seen that despite searching studies and treatment guidelines. Do you have a reference that points to that? It would be helpful when petitioning insurance to re-consider covering. We have UHC and their guidelines do not specifically exclude or include IVIG for AE. If there is a conclusive study we could provide it would help. Our doctor has refused to do a peer-to-peer as she says she has done many over the years and the only time she has seen IVIG covered by insurance is when the parents actually file a lawsuit. Twice she has seen that and the insurance company has settled out of court for cost of care in order to avoid a precedent. Wish I was an attorney.
  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 - extreme social anxiety and consistent depression. We are seriously interested in plasma exchange as a next step. It seems logical that cleaning his blood of antibodies and then re-training the immune system would alleviate his symptoms. We would love to hear some current experience with this. Who is doing plasma exchange? Our provider said she would do it if she could; apparently its almost impossible to get in California. If insurance will not pay - how much does it cost and can one get the contract rate? Does it matter that DS has primary diagnosis of autoimmune encephalitis? I would really like to hear some recent experiences with this? Most comments I see are from 6-8 years ago. Does this mean that no one is getting plasma? It is listed as a front line treatment for AE, which many or most of our kids seems to have as a diagnosis. We have to make a decision about next steps. DS is not getting any better. NO better on the path we are on. Is plasma exchange a good option - obviously knowing there are no guarantees. Thanks for any help.
  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 infections but he has killed off all except babesia duncani at 40 - but he has no symptoms at all for lyme. Has anyone had this experience? How long did you wait to try something else? Did you do another IVIG. I have heard that in some cases it can take 3 or 4 IVIGs to see a change.
  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 with co-infections or lyme as well? Have you considered anything else - plasmapheresis? rituxamab (sp?)? We are not expecting to regularly have IVIG - although we are not against another round if needed. Insurance does not cover, so we want to be sure it will be at least somewhat effective. Overall, do you think IVIG is having positive results?
  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 bartonella (Galaxy) but then DNA not present, so conflicting result. Dr. says DNA must be present to be positive result. --ASO and D-nase B titers still high - maybe exposure but not active infection. All other tests looked much improved. So exactly 4 weeks ago we did a two day regimen of high dose IVIG, 1.55/2Kg. Son experienced extreme headache for a day and a half and then dull headache for another 2-3 days. He had been pre-treated with iv drip and solemodral (sp?)and also had prednisone for headache. Now we are waiting for any reaction, improvement, change. It seems like things are better, definitely more stable, than last January when he left school, and even better than when he went to summer school. Son is functioning. He has a consulting job, is working out every day, has full cognitive function. If you spoke with him you would not suspect there is anything wrong. He is a good actor. He still feels somewhat depressed and/or apathetic. He still feels social anxiety and therefore has no social life, can't even see best friends. Even a text from them makes him anxious. He only goes to work, to the gym, and sees me and his dad. He is not happy. For anyone with experience with IVIG: when might he notice a change in emotional state? When should we consider another round of IVIG?Is there something else we should consider or try? I feel pleased that he is able to function, but it's not a happy life, not even close to what it would be without PANDAS. Thanks for any insight............
  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 infections, getting tonsils out could help.
  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 to 300, now back up again. He is on 3 abx now (zithro, alinia, keflex), but that has varied over the last 4 months, and many supplements to attack the lyme co-infections. His blood tests are getting better. We hope to clear out all infections and get to IVIG and hope for success. My son was desperate 5 months ago: had to withdraw from school. He is feeling better today although we still have a long way to go. I have to say the neuro-psychiatric symptoms for all the above co-infections are pretty much the same as for Pandas/Pans. We aren't sure whether his symptoms actually derived from Pandas or everything else or a combination. Also, the die-off caused by treating lyme and babesia is really rough. He was in a very dark place - we were worried to leave him alone. He is better enough today to go and take a couple of classes at school and try to get his life back. He is still treating the Lyme and prophylactic abx for strep. He follows a pretty strict diet for Lyme and candida - mainly paleo. We think this has contributed to his ability to eradiicate the yeast and reduce the lyme. He still has babesia IGM at 40 so still work to do. I would get the tests for co-infections. Either rule them out or start working to eradicate them as they are immune-suppressors or can be Pans triggers - as I understand it.
  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. We had this thing "licked" after a year of high dose abx. Flash forward to Spring and summer 2016 - my kid after sophomore year of college - top 5 school, national athlete - suddenly is so anxious he can't interact with high school students at a summer camp. He feels everyone is "putting him down" or "out to get him". Every interaction is stressful and eventually he would not leave the house. His personality changed 100%. He alternated between despair and optimism but often felt completely apathetic. He begged for help, kept saying "something is wrong - this is not normal" but to us the signs were invisible - no tics, no repetitions, nothing you could see. He talked to a counselor (no value). We never, ever thought PANDAS. There was no similarity to his previous diagnosis. However, his mental anguish was horrible and waxed and waned over the next two years until finally last June, after a case of strep that went untreated because he did not have a fever and was refused a swap test, he completely fell apart with intrusive thoughts and irrational behavior. Suddenly his dad said "this is completely irrational - it must be PANDAS" The ASo titers came back at 932, Cunningham Panel (now existed) was 3/5 positive. I'm telling you we had not forgotten about PANDAS but the second time looked so completely different we, who were looking, completely missed it. We're on it now but feel like he has suffered two extra years and we hope we are not too late.
  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 refused to see him. Think the people at Stanford and Mass General - where he or we were residents etc. I think its criminal, really, to refuse care when the diagnosis is made and clear. Reminds me of refusing care for a gunshot wound in the ER because someone is too .... old, young, dark, light, etc. Someone is clearly sick and suffering and you know why - but refuse to help.
  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. They really don't have the expertise. Igenix is cash pay and expensive - but you will get legitimate test results.
  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 to lyme in the mix. "Rowingmom" on this forum expressed the interesting alternative narrative that maybe it's the lyme that gets in and creates the perfect storm for PANDAS to take hold. That is how we interpreted her experience. Now everything is so inter-related we really don't know what is causing what - is it PANDAS, or lyme or die-off, the many (31) pills a day my strapping 22 year old is chained to, general depression and anxiety over his situation - who wouldn't be depressed and worried? The specialist who finally accepted our family and is 100% interested and invested in this, does not know. We are in the situation of hoping the drugs to kill bugs work and we get to IVIG and it works, before my son gives up on his life. You all know it's a struggle. When your kid is an adult and reads everything and analyzes it, the struggle to keep moving forward, keep positive, is really intensified. We were advised to stop his prophylactic abx in 2007. We could not get more abx. Today I would insist and keep my kids on abx until at least 25 - maybe all their life.
  16. I have been reading posts for a year now, and I have to share my son's story in case anyone would benefit. My son has Pandas; he is 22 years old. He was officially diagnosed at 11 years old, but in retrospect we believe he had the initial exacerbation by the age of 6. He had experienced multiple ear infections and bouts of strep such that he was on antibiotics 3-5 times per year since birth. He was breast-fed, and was not exposed a lot to other kids until pre-school. At 6 he displayed extreme hygienic OCD and hand-washing, cleaning things, no one could touch his belongings, fear of bird poop, night terrors. But it was short-lived, about a year, and we had reason to believe it was related to stuff he was learning in school - or perhaps were trying to make sense of it. His pediatrician said it was a phase. We now think it was Pandas. It was 2001. Things did pretty much rectify themselves. In 2006 while on vacation for two weeks we heard my son whispering things, the same three things over and over. Tourettes? OCD we wondered? In a short time the repetitions became louder and followed every single sentence. He would look at us wild-eyed as he repeated the words and then started counting and tapping. He could not have a normal conversation so he stopped having any at all. My husband and I started frantically researching online and stumbled upon Pandas and Dr. Swedo's work at NIMH. We cut vacation short and raced home to meet with our pediatrician. She had never heard of Pandas - but agreed to give a throat swab (Negative) and even a three day culture (negative). We insisted on a blood test for ASO and Dnase-B (both raging positive!) She called me completely shocked and started him on amoxicillin - but also referred us to a psychiatrist. The psychiatrist ($450 per hour) just wanted to prescribe psychotic drugs. We refused, saying we wanted to rule out physiological causes before going down that road. We found a Cognitive Behavior Therapist who was interested in PANDAS and introduced us to a psychiatrist at a well-known children's hospital who finally clinically diagnosed PANDAS - he was interested in the science of it and wanted to understand the relationship between infection and neuro-psychiatric symptoms. Through use of high-dose long-term Penicillin (and pro-biotics, Omega 369) my son was able to beat PANDAs in about 9- 10 months. I remember this time so clearly; it was so scary; Everyday I wondered if my son was gone forever. It seemed like he was possessed. My husband and I felt so isolated and alone. We felt we were fighting this battle on our own and neither of us is involved in healthcare. My son missed 1/2 of 7th grade (no great loss) but seemed to come out of it 100% and excelled in 8th grade. We felt like we had PTSD and insisted on blood tests any time my son had a sore throat. We asked about tonsillectomy but were advised against it. We should not have listened. Those same doctors did not know as much about PANDAS as we did - and they certainly weren't incented to learn. I honesty felt like I had dodged a bullet - and we thought it was over. It wasn't. But for the most part, the next 8-9 years were fine. Looking back I can now see that there were minor flares along the way, likely caused by bouts with strep or other infections, but we were so aware we had everything immediately checked out so it could not get worse. My son became a top national athlete and was recruited to a top academic D-1 school. He excelled athletically and academically. We rarely thought about PANDAS although he was treated for strep both his freshman fall and sophomore fall. Still we were under the impression that PANDAS was a pediatric illness and did not apply to him anymore. Believe me folks - It may start that way but there is no reason that a 19, 21, 25 or 30 year old can't get strep or other infections. My son is living proof. In Spring 2016 he developed EBV and strep (he believed) while at college but he tested negative and received no treatment. By June he suddenly developed extreme social anxiety and fear of everything. This kid was super confident, athletic, intelligent - he was suddenly literally sweating when peers at his summer job joked around with him. He could not speak in a group - and he loves public speaking. It was like he went from being on top of the pyramid to being intimidated by everyone. And then there was apathy and depression - a feeling of hopelessness and despair over something undefined and inexplicable. We did not recognize this as a PANDAS flare - in 2006 he had displayed overt OCD and tics, verbal and physical. In 2016 it was 100% emotionally based but just as sudden and debilitating. It lasted about 3-4 months and was completely untreated as we assumed sophomore year had been hard and there were residual issues. This slowly receded and my son went back to school, fall 2016, but he was different - less confident, more reticent, began avoiding strong-willed or competitive people (whom he had previously preferred). In retrospect it was a PANDAS flare and he got better but not back to his true personality. Time marched on, something was different but not terrible. N on else would have said anything was wrong. He had periods of anxiety. His personality was different- confidence was depleted, suddenly intimidated by his athletic team so dropped out of athletics. Began to recede from conflict and from people. But we and he did not connect it to PANDAS. Then he called from Europe and said he was sure he had strep - spring 2017. He was sure but he had no fever and the doctors where he was saw no pus in his throat. They refused to give him a swab or a blood test. We rushed him to a lab when he returned home 6 weeks later but by then the swab was negative and because it was negative doctor refused to order a blood test. And he seemed fine by then. One month later, while he was at his summer internship on the East Coast, he called crying. He could not walk into a room where his peers were. He could not speak to anyone. He was panic-stricken and afraid of everything and so terribly depressed he could barely function. It was completely irrational and my husband looked at me and said "This is Pandas". I called all over Boston trying to get a blood test the next day and finally talked some doctor into calling in the lab order. The ASO titers were 950 and D-nase B were 295. That was the official start of round two. The difference now is that pediatricians, under the guise that PANDAS is pediatric in nature will refuse care to anyone over 18. We have been turned away due to age from the Stanford Clinic where we live and the Boston PANDAS group, where my son goes to college, Dr. C in SF (3 year wait list) and the list goes on. It has been a year of .
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