Quinny Posted January 5, 2011 Report Posted January 5, 2011 Dear PANDAS forum, I am a 27 year old male who is suffering from PANDAS. I have lived with this disease for 13 years. It has been very difficult for me growing up with this condition. I have tried many forms of treatment like medication and IVIG without success. The pain of this disease has led me to depression, suicide attempts, drug addiction, and self-mutilation. It still causes me torment as an adult and I feel like it has ruined my life. I am unable to live on my own and I cannot hold down a real job. I am still severely depressed and am very unhappy with my life. I know that many of you in the forum are parents of small children and I pray that they are more successful at fighting and dealing with this illness.
amyjoy Posted January 5, 2011 Report Posted January 5, 2011 HI QUINNIE How sorry I am to hear of your profound suffering. So glad you have found this forum. Am sending you a PM. Amy
kimballot Posted January 5, 2011 Report Posted January 5, 2011 Dear PANDAS forum, I am a 27 year old male who is suffering from PANDAS. I have lived with this disease for 13 years. It has been very difficult for me growing up with this condition. I have tried many forms of treatment like medication and IVIG without success. The pain of this disease has led me to depression, suicide attempts, drug addiction, and self-mutilation. It still causes me torment as an adult and I feel like it has ruined my life. I am unable to live on my own and I cannot hold down a real job. I am still severely depressed and am very unhappy with my life. I know that many of you in the forum are parents of small children and I pray that they are more successful at fighting and dealing with this illness. Quinny - I am happy that you found this forum and I hope that you can learn from us and we can learn from you. My son is 13 and has been battling PANDAS since infancy, so you and I have been dealing with this through the same time period. Sometimes it brings me comfort to know that all those nights when I thought I was crazy or completely alone -well- I was neither. There were others who were feeling the very same way facing the very same issues. I found this forum nearly a year ago and it has been a source of great support and direction for us. There are other adults on this forum with PANDAS. Some are also parents of children with PANDAS now. I hope that you will share with us some of the things that you found more or less successful and I hope you search through this forum to see what others have found helpful. Some of the families on this forum have had quick and long-lasting relief with antibiotics. Some have found long lasting relief with IVIG. Some have had to go beyond IVIG and are actively searching for other hidden infections, including lyme disease, and they are being helped with different medications. Everyday I learn something new. I hope we continue to hear from you - Hang in there please share with us!
melanie Posted January 5, 2011 Report Posted January 5, 2011 Hi Quinny, can you tell us about your therapies.How many IVs you had.What kinds of antibiotics you used?When were you DXed?My son is 16 and is up and down. Thanks so much
wornoutmom Posted January 5, 2011 Report Posted January 5, 2011 Qunny: So sorry to hear about your sufferring. My ds is 15 and we have been dealing with this for over a decade. We are just now finding some lasting recovery after finding the right team of docs. We have seen many well meaning docs over the years who just didn't get it or know what to do. Please don't give up hope. There is a doc out there somewhere to help and you CAN get your life back. PM me if you'd like and maybe I can help point you in the right direction?? Meanwhile, keep coming here for support. This is the group that gets it ALL.
Fixit Posted January 5, 2011 Report Posted January 5, 2011 Quinny..i hope you find some aha moments here.. please give more info and continue to post did the ivig help at all... maybe you need more, at lower doses, more frequent.. did/are you using abx?? i agree you should continue to look for other infections, parasites, lymes, celiacs, other autoimminue conditions.. have you had your tonsils out.... i wonder if sammy"saving sammy" did or not..and that is why he had to stay on hd abx for so long?!!?! psoriasis..another auto condition....has some info about adults removing tonsils to aid or cure their psoriasisis ie my brother inlaw had impitego aaalllloooott as a child and has bad psoris and is looking into a ta my dh just had his out a week ago..and i hope i can heal him further..he is pandas and still gets strep 3x a year not saying that is the answer ...just something to ponder...as there are children who heal with the removal of them and don't need to go any further
KeithandElizabeth Posted January 5, 2011 Report Posted January 5, 2011 (edited) Quinny: I am so sorry for your pain. Have you ruled out chronic infections, such as lyme disease, bartonella and mycoplasma? We have found that multiple IVIG's did not bring a complete cure for our son, but the right combination of multiple antibiotics has been a miracle. Our son did end up having lyme disease, bartonella, mycoplasma and babesia. He had only neurological/psychological (PANDAS/PITANDS) symptoms so I was really leary of him having lyme disease, but finding the infections has done wonders for him. I would recommend using IGENEX for the lyme testing because IGENEX includes many more lyme specific bands in their tests. If you are not as familiar with lyme, you may want to check out the lyme forum on this board. Elizabeth Edited January 5, 2011 by KeithandElizabeth
momofgirls Posted January 5, 2011 Report Posted January 5, 2011 I highly suggest checking for lyme and co-infections. For my daughter it turned out to be lyme, bartonella, and a chronic mycoplasma infection. I understand you have tried antibiotics and IVIG but unless you erradicate the underlying infection these treatments alone seem to provide only temporary relief. We did multiple IVIGs for my daughter and saw some improvement but it wasn't until we started addressing the multiple infections did we see sustainable improvement. Good luck and check out IGENEX testing for lyme and maybe contact ILADS for a doctor referral near you. These doctors will test for all infections/viruses and treat them appropriately.
Quinny Posted January 6, 2011 Author Report Posted January 6, 2011 Dear Melanie, I received IVIG in 2000 but had a severe allergic reaction. I just had another IVIG at the end of September but developed Mono four weeks after. I was DXed in 1998 after a case of strep throat. I had severe contamination OCD and minor tics. I was treated with antibiotics and then Psych medications. I still take many Psych medication which are no help. I have been taking Zith. since last summer. There was little to no change. Yet a Prednisone burst did help quite a bit. I will look at coinfections soon.
Quinny Posted January 6, 2011 Author Report Posted January 6, 2011 Hi Quinny, can you tell us about your therapies.How many IVs you had.What kinds of antibiotics you used?When were you DXed?My son is 16 and is up and down. Thanks so much Dear Melanie, I received IVIG in 2000 but had a severe allergic reaction. I just had another IVIG at the end of September but developed Mono four weeks after. I was DXed in 1998 after a case of strep throat. I had severe contamination OCD and minor tics. I was treated with antibiotics and then Psych medications. I still take many Psych medication which are no help. I have been taking Zith. since last summer. There was little to no change. Yet a Prednisone burst did help quite a bit. I will look at coinfections soon.
coachadamb Posted January 6, 2011 Report Posted January 6, 2011 Dear PANDAS forum, I am a 27 year old male who is suffering from PANDAS. I have lived with this disease for 13 years. It has been very difficult for me growing up with this condition. I have tried many forms of treatment like medication and IVIG without success. The pain of this disease has led me to depression, suicide attempts, drug addiction, and self-mutilation. It still causes me torment as an adult and I feel like it has ruined my life. I am unable to live on my own and I cannot hold down a real job. I am still severely depressed and am very unhappy with my life. I know that many of you in the forum are parents of small children and I pray that they are more successful at fighting and dealing with this illness. Quinny, was wondering if you could share some of the doctors you have seen that are willing to treat PANDAS. My son now 18 will not be seen by any pediatric doctors, and he is at his wits end. coachadamb
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