dementia
Mar 3, 2006
Any help that you are willing to give me will be a blessing.
My brother is 43 years old and has Aids Dementia. He was diagnosed with HIV about 8 years ago with a good cd4 count and remained relatively well till 2 years ago when his health took a turn he started having balance problems, memory problems, and extreme fatigue, mood swings, anorexia, severe hot sweats and the list could go on and on. Unfortunately he was misguided by an Alternative Doctor. This guy basically did a blood test which revealed that bothers CD$ count was under 50 and his vital load was extremely high. At this point we both were not knowledgeable to the fact that he had AIDS and this guy told us it was nothing to worry and started him on a regime of supplements and health drinks as you can imagine this did not help and he basically got worse day by day and this guy kept saying not to panic and that if he upped his doses and we leave it another month he would get better. Needless to say Michael got worse and his wallet became empty but this guy got richer.
Michael was rushed into hospital and at this point he was unable to walk at all he was in a wheelchair. Michael after persuasion was put on HAART and truthfully it was like a miracle he was slowly coming back to life. They did tell him that if he hadnt gone on HAART he would have died in 6 months. Things were going great till very suddenly he started acting weird. He started getting very restless and then he would just walk about all night and not sleep. Smoking to the extreme, music loud and then verbally abusive and then started to get aggressive in his behaviour and then ,make sexually inappropriate comments to just anbody. This was like a bolt of lightening as Michael was such a loving friendly, wonderful guy. He had an MRI scan where they revealed worsening of his ADC.
He was unfortunately sectioned because his behaviour became so erratic and they were were scared for his safety. He was sent to a mental clinic which was a complete nightmare as they had no knowledge of real caring and the health and safety was missing. We fought tooth and nail and then managed to get him into private clinic till we could get him more manageable. He was put on Olanzapine and Clonazapam where he slowly started to get a bit more manageable. He was taken out and he is now living with my mother in Cyprus who was thrilled with his progress and then about a week ago he started behaving terribly again. He becomes very verbal and has a tendency to spend hours on end just phoning different companies trying to book hotel accommodation and car hire which Mum then canx and this is very tiring. He is constantly trying to go out but thankfully she is not aware that he is just looking to sleep with men and she is scared he may get hurt. He is smoking excessively. He has started talking of suicide and my mother called the priest where he basically fabricated a terrible story which my mother overheard where he said that he had been raped by a bishop and then gang raped by a load of priests which was obviously very disturbing for my mother. Mum said the priest was understanding and compassionate. When he left my brother said how nice he was then the next day he said that the priest had been filthy to him and that he never wants to see him. He also lies constantly. He has become very unreasonable. Every now and then though he is mortified with his actions to my mother and begs her forgives and tells her he cant help it which we understand. at night he has started being incontinenet this maybe down to sleeping tablets. His character is completely different it's almost like he has become a stranger. he has become compulsive with his behaviour and he just can't seem to switch off. He is very lonely which does not help and my mother has no one to help her with him.
I am trying to get Michael more manageable through drugs so he and my Mum can have some quality of life. Due to his erratic behaviour he went to a Psychiatrist out there who basically told mum to stop the Clonazapam 0.5 mg (1 to 12 a day) to Rivotril 2 mg half a tablet three times a day. The Olanzapine from 2 a day to 3 a day.
The HIV clinic at the KOBLER CLINIC in London have him on Ritonavir 1 capsule 100mg, Tenoforir 2 x 150 mg, Lamivudine 2 x 150 mg , Reyataz 2 x capsule 150mg he also has to take a sleeping tablet he did try Abacavir but was hypersensitive.
He is eating so well and his mobility is getting better. There are times of the day when he is like his old self but this does not last as his start to get very agitated and angry very quickly.
His CD4 has risen from 50 to 286 and his viral load has declined to 64 copies/ml. just for your information whilst in the clinic his LP was normal, serum cryptococcal antigen negative.
I would appreciate any advice on any drugs that Michael could try to make his behaviour more settled !!!
I feel so alone as the doctors in London really dont know what else to do for him.
God bless from a devoted sister.
Zo
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