Guest guest Posted April 16, 2009 Report Share Posted April 16, 2009 Hi Luke, Testing for cognitive decline is not simple. Ideally, you would have a baseline and be able to compare. There is a whole battery of tests that I have gone through repeatedly, paper-and-pencil tests that have you trace connections between letters and numbers; identify shapes; word recall tests where you’re read a list of words and asked later to repeat them; a “grooved pegboard” test where you put specially shaped pins into holes; and so on. Honestly, you may be the best judge of whether things “just aren’t right.” I had a similar kind of word thing, where I would substitute garage and refrigerator – both ways! Weird! And my VL is undetectable, with CD4s running about 900. Bob From: [mailto: ] On Behalf Of hoppefaith@... Sent: Wednesday, April 15, 2009 10:53 PM Subject: Possible cognitive decline??? For the past few weeks.. I notice i'm taking a bit more time to say a word or, think of it.. and I say the wrong word or use the wrong words in a sentence,.,. like if i;m supposed to say the first word first.. then say xxxx. then say the other word after this.. i reverse the order.. I cannot think of any examples,, It dawned on me that something might be brewiing.. I;m 49 pos since 1990 and always unded and cd4 about 600.. On atripla for several years . So, what precise tests can determine if something is just not right?? and what kind of doc determines this.. I prefer to do my homework before discsussing this with my ID doc as he might have his favorites and i want to be sure I go to a very smart doctor to help with this.. I live in san diego thanks Luke Access 350+ FREE radio stations anytime from anywhere on the web. Get the Radio Toolbar! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 16, 2009 Report Share Posted April 16, 2009 Similar story here except it's been going on for awhile. Words don't want to come out, word recall is more and more difficult. Long term survivor here, poz since 82 (blood was stored in a research study and later tested) 700 T-cells and VL <45. I can certainly tell my brain is more hesitant. One good thing is that I'm slower to put my foot in my mouth otherwise it's kinda weird. Also feel more anxious around people. ID says it's old age, I'm ONLY 57. My bones are that of an 80 year old and my brain it...well, can't recall the right word right now! I certainly feel a decline in mental status. I do think it scares people around me more than it scares me. /Red > > For the past few weeks.. I notice i'm taking a bit more time to say a word > or, think of it.. and I say the wrong word or use the wrong words in a > sentence,.,. like if i;m supposed to say the first word first.. then say xxxx. > then say the other word after this.. i reverse the order.. I cannot think > of any examples,, It dawned on me that something might be brewiing.. I;m > 49 pos since 1990 and always unded and cd4 about 600.. On atripla for > several years . So, what precise tests can determine if something is just not > right?? and what kind of doc determines this.. I prefer to do my homework > before discsussing this with my ID doc as he might have his favorites and > i want to be sure I go to a very smart doctor to help with this.. I live > in san diego thanks Luke > **************Access 350+ FREE radio stations anytime from anywhere on the > web. Get the Radio Toolbar! > (http://toolbar.aol.com/aolradio/download.html?ncid=emlcntusdown00000003) > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 17, 2009 Report Share Posted April 17, 2009 -------------- Original message ---------------------- From: julev <JuLev@...> > > It is important for patients to be aware of this potential development, a > decline a cognitive function. Potentially preventive measures include adequate > exercise, proper diet-it is suggested that omega 3s and eating adequate fish in > diet can be helpful, some suggest statins might help although I have heard mixed > reports. You can test your inflammation biomarkers: hsCRP, IL-6, TNF-a. Although > some may say what will you do with the results it is I think helpful to have > more information. Detectable viral load and dyslipidemia have both independently > been in studies associated with risk for developing cognitive impairment and > worse mental functioning so keeping lipids and glucose under control are > important. Glucose elevation has been found to be associated with cogntive > impairment in HIV-negatives and appears like a crucial factor. This is great info, and thank you for providing it, Jules. After recovery from the most serious part of my illness about a year ago, I decided to return to school in order to obtain a bachelor's degree in social work. While I was sick, I became acutely aware of the need for HIV/AIDS services in the Mississippi area. Consequently I decided to pursue the social work degree so I could contribute to finding a solution to that problem. Almost as soon as I started school, I became ACUTELY aware of cognitive deficits. My memory was shot. I had difficulty concentrating and focusing. Did I mention that my memory was shot? I did a little research, and found three studies reporting that methylphenidate (a/k/a Ritalin) was effective for dealing with cognitive deficits in those with HIV disease. I made copies of the papers, and sent them to my psychiatrist. He didn't give me any static, and now I'm on Ritalin. The jury is still out on how well it's going to work (let's see what my final grades look like), but I can already detect an intensification of my focus. I'm still waiting for improvement in memory, but I've been taking Ritalin for only two weeks. If anyone is interested, let me know and I can send you the citations for the three papers. I can't put my hands on them at the moment (did I mention that my memory is shot?), and all three were published in mainstream peer-reviewed journals. Regards, Nick -- Nick 6811 Old Canton Road, Apt. 1008 Ridgeland, MS 39157 601-991-1164 thenick@... http://nicknicholas.net Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 17, 2009 Report Share Posted April 17, 2009 -------------- Original message ---------------------- From: julev <JuLev@...> > > It is important for patients to be aware of this potential development, a > decline a cognitive function. Potentially preventive measures include adequate > exercise, proper diet-it is suggested that omega 3s and eating adequate fish in > diet can be helpful, some suggest statins might help although I have heard mixed > reports. You can test your inflammation biomarkers: hsCRP, IL-6, TNF-a. Although > some may say what will you do with the results it is I think helpful to have > more information. Detectable viral load and dyslipidemia have both independently > been in studies associated with risk for developing cognitive impairment and > worse mental functioning so keeping lipids and glucose under control are > important. Glucose elevation has been found to be associated with cogntive > impairment in HIV-negatives and appears like a crucial factor. This is great info, and thank you for providing it, Jules. After recovery from the most serious part of my illness about a year ago, I decided to return to school in order to obtain a bachelor's degree in social work. While I was sick, I became acutely aware of the need for HIV/AIDS services in the Mississippi area. Consequently I decided to pursue the social work degree so I could contribute to finding a solution to that problem. Almost as soon as I started school, I became ACUTELY aware of cognitive deficits. My memory was shot. I had difficulty concentrating and focusing. Did I mention that my memory was shot? I did a little research, and found three studies reporting that methylphenidate (a/k/a Ritalin) was effective for dealing with cognitive deficits in those with HIV disease. I made copies of the papers, and sent them to my psychiatrist. He didn't give me any static, and now I'm on Ritalin. The jury is still out on how well it's going to work (let's see what my final grades look like), but I can already detect an intensification of my focus. I'm still waiting for improvement in memory, but I've been taking Ritalin for only two weeks. If anyone is interested, let me know and I can send you the citations for the three papers. I can't put my hands on them at the moment (did I mention that my memory is shot?), and all three were published in mainstream peer-reviewed journals. Regards, Nick -- Nick 6811 Old Canton Road, Apt. 1008 Ridgeland, MS 39157 601-991-1164 thenick@... http://nicknicholas.net Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 17, 2009 Report Share Posted April 17, 2009 -------------- Original message ---------------------- From: julev <JuLev@...> > > It is important for patients to be aware of this potential development, a > decline a cognitive function. Potentially preventive measures include adequate > exercise, proper diet-it is suggested that omega 3s and eating adequate fish in > diet can be helpful, some suggest statins might help although I have heard mixed > reports. You can test your inflammation biomarkers: hsCRP, IL-6, TNF-a. Although > some may say what will you do with the results it is I think helpful to have > more information. Detectable viral load and dyslipidemia have both independently > been in studies associated with risk for developing cognitive impairment and > worse mental functioning so keeping lipids and glucose under control are > important. Glucose elevation has been found to be associated with cogntive > impairment in HIV-negatives and appears like a crucial factor. This is great info, and thank you for providing it, Jules. After recovery from the most serious part of my illness about a year ago, I decided to return to school in order to obtain a bachelor's degree in social work. While I was sick, I became acutely aware of the need for HIV/AIDS services in the Mississippi area. Consequently I decided to pursue the social work degree so I could contribute to finding a solution to that problem. Almost as soon as I started school, I became ACUTELY aware of cognitive deficits. My memory was shot. I had difficulty concentrating and focusing. Did I mention that my memory was shot? I did a little research, and found three studies reporting that methylphenidate (a/k/a Ritalin) was effective for dealing with cognitive deficits in those with HIV disease. I made copies of the papers, and sent them to my psychiatrist. He didn't give me any static, and now I'm on Ritalin. The jury is still out on how well it's going to work (let's see what my final grades look like), but I can already detect an intensification of my focus. I'm still waiting for improvement in memory, but I've been taking Ritalin for only two weeks. If anyone is interested, let me know and I can send you the citations for the three papers. I can't put my hands on them at the moment (did I mention that my memory is shot?), and all three were published in mainstream peer-reviewed journals. Regards, Nick -- Nick 6811 Old Canton Road, Apt. 1008 Ridgeland, MS 39157 601-991-1164 thenick@... http://nicknicholas.net Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 18, 2009 Report Share Posted April 18, 2009 I am also having problems, but was not sure if anything could be done. I am 57 y/o and sometimes think my 83 y/o mother has better short time memory than I do. It sounds like we should all get at least evaluated for a base line even if we don't have any problems as yet. I local hospital is partispating in ACTG 5235, which is the minocycline study. After reading all of these notes, I will look in to seeing if I can get in to ACTG 5235. Wes Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 19, 2009 Report Share Posted April 19, 2009 There is no one simple answer to this problem. More likely people should try several different things to reduce the potential for cognitive decline. Drugs are one way to go. They have been studied for quite a while, but not for HIV specifically. Nutrients are another option that have support from quality published data. For instance, if you are taking niacin in higher doses to reduce cholesterol and increase HDL2 for cardiovascular health, you are greatly increasing your chances of having better memory test scores, especially short term memory. See: http://www.michaelmooney.net/niacin.htm -- The study here used only 425 mg of niacin per day and showed up to 40 percent increase in memory test scores, especially short term memory. I take 2300 mg per day, as Niaspan at 1000 mg twice a day and 300 mg in my daily vitamins. Niaspan is a time-released prescription version that works well. I've been taking it for 41 years, and I'm sure it's part of why I can remember all of the info in medical journal studies I read. Just realize that when you first start taking it, the skin flush that you get can be pretty wild. I started out taking 3,000 mg per day and turned beet red, head to toe. But I found it as an option to being very depressed because of the many effects it has on the brain. Studies in the 50's showed alcoholics having less potential to relapse when they took it in higher doses. Regular vitamins only have 20 to maybe even 50 mg. The beneficial effects start at about 300 mg per day. Mooney www.michaelmooney.net www.medibolics.com > > > > For the past few weeks.. I notice i'm taking a bit more time to say a > word > > or, think of it.. and I say the wrong word or use the wrong words in a > > > sentence,.,. like if i;m supposed to say the first word first.. then say > xxxx. > > then say the other word after this.. i reverse the order.. I cannot > think > > of any examples,, It dawned on me that something might be brewiing.. > I;m > > 49 pos since 1990 and always unded and cd4 about 600.. On atripla for > > > several years . So, what precise tests can determine if something is > just not > > right?? and what kind of doc determines this.. I prefer to do my > homework > > before discsussing this with my ID doc as he might have his favorites > and > > i want to be sure I go to a very smart doctor to help with this.. I > live > > in san diego thanks Luke > > **************Join ChristianMingle.com® FREE! Meet Christian Singles in > your area. Start now! > (http://pr.atwola.com/promoclk/100126575x1221246370x1201421635/aol?redir=http://\ www.christianmingle.com/campaign.html?cat=adbuy & src=pl > atforma & adid=aolfooter & newurl=reg_path.html) > Quote Link to comment Share on other sites More sharing options...
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