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Information about Plasma Exchange
BeenThere posted a topic in PANS / PANDAS (Lyme included)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.
It's been awhile since I have been on to given an update on my son. He is doing well and finished a year of plasma exchange treatments in July 2015. His energy levels are much better but he is still on supplements and medications. He has not had any strep infections and still takes penicillin VK 250 mg daily. In addition to his supplements and medications, he also takes the 90 billion Ultimate Flora probiotic for men. My son is 17. He was 13 years old when the Cunningham Panel test was run and antibodies were found in December 2013. He started treatment with high dose antibiotics, then IVIG, and then went on to Plasma Exchange. My son has been on antibiotics since December 2013. What I am wondering about is how long is too long to stay on antibiotics? I am afraid he could have a relapse if taken off. His doctor wants to leave him on the antibiotics because of a possible relapse. Are any of you dealing with this situation? Would love to know your opinions.
Rachel posted a topic in PANS / PANDAS (Lyme included)Just wanted to pop in and give everyone an update on my son. He was diagnosed with Postural Orthostatic Tachycardia Syndrome in October 2011. He was tested for Lyme and Co-Infections but never got a positive test on any bands. He tested positive for Basal Ganglia Antibodies in November 2013 but was never diagnosed with PANS/PANDAS because he did not meet the NIH criteria. However, my son did get treated for these antibodies by his cardiologist because they were making his POTS symptoms worse. He was treated first with antibiotics, then a few months of IVIG, and then had to go on a do Plasma Exchange. His Plasma Exchange treatments lasted for a year. He had his last treatment in July 2015. In June 2015 before treatment stopped totally, my son's tremors from waist down disappeared. He could finally ride a recumbent stationary bike and started doing floor exercises to build up core muscles that he had lost from not being able to exercise. The Basal Ganglia Antibodies interfere with cell signaling which in return will interfere with any signaling in the brain. In July 2015, he still had his daily headache and severe scalp pain. His doctor prescribed extended release Namenda in April 2015 and it dropped the headache down to 6 out of 10 instead of an 8. His doctor also prescribed Low dose Naltrexone 3mg the end of July 2015. This medication is used to treat CRPS, chronic pain and other autoimmune related illnesses. Eight weeks later, my son's headache, severe scalp pain, and hypersensitive skin pain issues are gone. My son has been pain-free since October 2015. In November 2015, my son was finally able to stand up and take his first steps with a walker. A week later, he tossed the walker aside. My son saw his doctor later in November and he sent in the orders for physical therapy. His doctor also allowed him to start going to one church service a week to start exposing his immune system and to do short errands in uncrowded stores. So we started making short runs to the Post office, Braums for milk and ice cream, It tired him out at first, but he does enjoy getting out. Physical therapy was started in January 2016 and in March my son was doing pool therapy for 60 minutes. His pt taught him to swim and he now goes to an indoor pool to swim or do pool therapy exercises. He currently exercises 3 times a week, goes to all three church services, runs errands, and continues to do online school at home. His core muscles are still weak and he cannot sit up comfortably for more than an hour. He is able to walk for about 15 minutes before back pain sets in. He is being reevaluated for this soon. My son's POTS symptoms are more manageable. His blood pressures stay up, brain fog is gone, and hoarse voice is gone. Vocal tics are hardly every heard. My son is still on several medications but overall, he is on his road to recovery.
Plasma Exchange Update
Rachel posted a topic in PANS / PANDAS (Lyme included)Just thought it was time to give an up date on my son. My son has been doing plasma exchange since August of 2014. He started out with 3 treatments a week for 3 weeks and then went down to treatments 2 treatments. We saw some progress but when he went down to 2 treatments, he started going backwards again. Our doctor quickly bumped him up to 3 treatments a week again for 11 weeks. We stayed at the Ronald McDonald house to avoid traveling 3 days a week. A one way trip to the hospital was 150 miles. Since doing this treatment my son has not had any strep or mycoplasma pneumonia bacteria infections, he does not have a horse voice every day, he has gained strenght and stamina, decrease in vocal tics, he is just beginning to do some exercises without his tremors being made worse, his tremors have slowly lessened, my son has finally started sleeping through the night, his headache pain level has also dropped down. It has been a long 5 months but I am beginning to see some changes. He has not been rechecked for the antibodies that were found so high in the Cunningham test. Eventually that will be done but can only be done when treatment has been stopped for 3 months. Our cardilogist has also put my son on Planquenil to see if it will help keep these antibodies supressed since my son when down to 2 treatments the month of December. So far so so good.He is stable. My cardiologist has went back and reviewed some of my son's neurotransmitter testing. His glutamate and norephinphrine levels were very high but his GABA was very low. Because his headache and mechanical allodynia has not responded very well to pex, he decided to try him on Nemanda. His headache pain level dropped some after being on it for a month. My son stayed on that dosage for 2 months and he will go up to the full dosage on extended release to see if this can get any better. There was a small study on this medication that indicated the patients had relief from their headache and allodynia after 2 months use on the extended release dosage. Our doctor has also put my son on a high doseages of NAC and his magneisum supplement levels have gradually been raised due to a vitamin D defiencey. My son is much better off than he was 5 months ago. However, our progress is slow but our doctor has warned us this is a marathone of a cure and not a sprint. Plamsa exchange does cause problems with mineral inbalances and we are having to increase some supplements. Overall, I am pleased with my son's progress but healing cannot come quick enough since he has been sick with some of these symptoms since first grade. Wishing everyone a Happy New year and a Healing Year for your Child.