POZ Community Forums
Meds, Mind, Body & Benefits => Mental Health & HIV => Topic started by: webontheweb on June 04, 2009, 10:30:18 am
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Hello all, I have an appointment with my reg DOC- fabulous all the way 'round- and I need to talk with him about effects of HIV on brain function. I am only on Atripla. Started out at CD4 134, now it is 246 after a year of struggling along with allergic to bactrim- another story indeed!
But what I am looking for is this:
I feel like my short and mid term memory is completely gone. I will be at work and all of sudden HOURS have gone by with no recolletcion of what happened. My typing skills are going downhill. There are times when I am walking that I feel myself drifting to the left. Forgetful forgetful forgetful. I leave entire words or phrases out of my typing. I used to be able to type 5,000 characters an hour with no errors!!!!
Sometimes I am doing great and don't notice a thing.
I feel that I need a complete testing of my mental capacity and maybe an MRI, but want to talk with all of you first. Does this seem "normal" to you all, Has anyone gone through this? What should I have my Doc look for and what tests will help determine if this is infection, depression- I don't think it is this- aging, just dumb old me or what?
If somone on here with medical pr personal knowledge could contact me privately, I would be ever so greatfull. Aslo any generic posts with info is great , too.
Thank you all. I have gotten great help here over the last year and a half.
Cheers
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Try putting "brain fog" into the search box (downscreen and to the left)-- you'll find a lot of threads and advice.
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Thanks for the pinters, I have read them, and I am not supremely confident that they answer the nagging question that is in my head. I usually have a pretty good intuition about my body when things are wrong. EXCEPT FOR THE FACT THAT I WAS HIV+ FOR ABOUT 8 YEARS BEFORE I KNEW IT!
In most cases, if I feel that something is worng, there is usually something there.
I will el tyou know what the Doc says after next thursday. I am gettting thisclose to disclosing my status at work. i work a lot of hours which does not help me out, I am always tired. I knwo they will be supportive, it is just doing it that is the scary part.
Cheers all,
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There was a podcast on hiv and cognitive disorders. I am having some word retrieval stuff and forget what I am talking about on occasion. I chalk it up to age but..http://www.aidsmeds.com/articles/hiv_croi_letendre_2297_16582.shtml
I found it unsettling to read about :(
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I've been only positive for 10 months, and I already notice brain fog. Mind you I am also young too. Though I'm more into meditation so I notice the "little things". Myself I am not on HAARP or any psychoactive meds.
Are you on any anti-anxiety/anti-depressant medication
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hey roof, was on antidepressants, but no more for a long time. Still have same symptoms. I have a great regular doc who believes along with me, that knowledge is power, so I have an appointment with a neuraologist in a few weeks to check out the old grey matter.
It is only short term memory that is affected.
Althougha funny happened the other day. A commercial came on for the new amelia earhart movie that is coming aout and while looking at the images I thought, "I wonder what airport they used for the backgrounds or is it all computer generated" and said outloud, "Oh look, there is a movie about amelia airport coming out". Funny but sad, no? I was laughing for about ten minutes!
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webontheweb, what you describe sounds so much like myself that it sounds like I had written it. The viral load, years before diagnosis, bactim, Atripla, brain fog. All the same. My wife even asked me if I had written your comments. My symptoms exactly. I can say that after being on the Atripla for 17 months the brain fog got a little better. I still think that some people or some mutations of HIV are geneticly predisposed to cause certain symptoms. I can't get anyone to agree with me , but still I think if there were any large scale studies comparing all these factors, a pattern would emerge. What REALLY helped me was my doctor finally gave me a prescription for Ambien CR and the brain fog and my thinking really improved. Until them , my wife and kids were really worried about me because it was very difficult for me to function. There are other HIV meds that do cross the brain barrier that you may want to talk to your doctor about. I don't think the components in Atripla do. Hiv was tough on me mentally, but fatigue was worse. Might be that they compound each other. I forgot things. wrote checks incorrectly, Had to start writing EVERYTHING down when I used to be able to memorize every account number, got lost in the same town where I have lived for 40 years. etc. Days I get tired I still have problems. Anti depressants did not help. Substantially cutting the number of hours I work and increasing the amount of time I rest has also helped. It still takes 3 or 4 edits to get an email right. Hang in there. Hope this helps.
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Hey webontheweb,
There could be a few things that you have mentioned that might be contributing to your symptoms. The good news is that there is lots you can do.
Atripla contains Efavirenz - notorious for causing fogginess, memory loss, slowed thinking, depressed mood, fatigue (just to name a few). You could discuss alternative medication options with your doctor - nevirapine is an excellent alternative.
Secondly - one of the reservoirs that HIV hangs out in is the brain and this could be part of the reason for your symptoms as well. To put it plainly not all HIV meds get into the brain ( they are not all able to cross the blood brain barrier - a protective structure that prevents infections etc from harming the brain ). This structure also prevents some HIV drugs getting into the brain - meaning that although you are undetectable in your blood, you still may have HIV replicating in your brain which could explain your symptoms.
None of the meds contained in Atripla are particularly good at getting into the brain and other reservoirs ( like cum and certain other body parts). Nevirapine is said to be the most superior at getting into the brain and many people who switch from Efavirenz to Nevirapine say they experience an 'awakening' with dramatic improvements in their cognitive and psychiatric symptoms.
There is emerging evidence about these issues, the collective name for these symptoms is HAND - HIV Associated Neurocognitive Disorders.
I found this info below on the net but couldn't work out a link.
HAND
(HIV Associated Neurocognitive Disorder)
The availability of HAART (Highly Active AntiRetroviral Therapy) in the late 90s has seen a marked decline in the incidence of brain disorders for people living with HIV, such as ADC (AIDS Dementia Complex). There is evidence, however, that up to 50% of people living with HIV will still experience some form of mild cognitive impairment - even when taking effective HAART. Research suggests that such impairment is a result of the direct effect of HIV related activity on the brain. The term used to describe these symptoms is HAND HIV Associated Neurocognitive Disorder.
Neurocognitive disorders have long been an issue for people living with HIV. Research presented at CROI suggests these disorders might be more common than previously thought. This research also suggests that HAND could be progressive over time and compounded by other factors such as smoking, previous HIV related health issues of the brain, ageing, overall health, CD4 count and length of time living with HIV.
Symptoms of HAND can include:
Difficulty concentrating
Poor attention
Problems with memory
Reading difficulties
Being easily distracted
Losing train of thought
Tremor of one or both hands
Low energy
Disturbance in mood
Everyday tasks take longer and become laborious
People living with HIV often attribute these symptoms to low mood, ageing, stress or general fatigue. It is important to remember that several of these symptoms need to be consistently present over time for a doctor to think they are related to HAND. If symptoms are discussed with a doctor a neurological examination might suggest that the person is neurologically intact and not indicate any problems. Some cases can therefore be missed. Other possible causes of these symptoms include depression, alcoholism and side effects from certain HIV Treatments.
More serious symptoms are rare and much more easily detected. This group of symptoms can include marked disturbances in cognition (confused thinking) emotion (anxiety, personality changes or agitation) and often include problems with motor function (movement). These more severe cases are rarely seen if people are diagnosed early and have access to HAART.
Diagnosis
There are no blood tests available to diagnose HAND. Researchers have developed a screening tool in the form of a mathematical formula. A doctor can enter a persons information into this formula that will give a result in the form of a numerical score. The score indicates whether an individual is possibly displaying symptoms of HAND. This formula is complex and involved and needs to be done by a qualified and experienced clinician, such as your HIV specialist, in order for the results to be reliable.
The formula and score indicate whether more intensive screening, such as Neuropshchological Testing (NPT) is required. NPT usually comprises a range of assessments that can take a number of hours. The assessments comprise questions and tasks that are designed to assess a wide range of brain functioning. These tests can repeated over time to guage improvement or progression of symptoms. Other tests such as CT scans or lumbar puncture can also be suggested.
Treatment
The symptoms of HAND can be avoided or improved with timely commencement of effective HAART. Mounting research suggests that the best indication for commencement of treatment might be when an individuals CD4 count is 500. Commencing treatment at this number prevents many HIV related health issues, including HAND, and continues to guard against them over time.
Some HIV Treatments better penetrate the CNS (central nervous system) than others. This in short means that some medications are better than others at getting at HIV in the brain and other nerve tissue. Current guidelines recommend that effective HAART should contain at least one drug in this category.
Specialists will sometimes prescribe more than one of these drugs at sometimes higher doses for people with HIV related neurocognitive issues. In time we may see people commencing with or switching to combinations that contain 2 or even 3 drugs with superior CNS penetration.
What to do?
Some people reading about HAND might think that they have the disorder - even if they do not. This is a common and normal response when read new health information. It is important not to become anxious, even if symptoms are present there is much than can be done.
Self monitoring is important. Keep a record of symptoms and note any significant changes that concern you and discuss with your doctor. Your doctor may want to rule out other causes such as fatigue, stress, depression, lack of sleep, poor nutrition and may even want to perform blood tests to check testosterone, thyroid and certain vitamin levels.
If you think that alcohol or recreational drugs could be contributing give yourself a break and see what happens. Abstinence can often result in many improvements in health. If you or your doctor thinks that you might have symptoms of depression think seriously about antidepressant medication.
Research has shown that the serotonin decreases HIV replication. Anitdepressant medications that work on serotonin are safe and effective. You should also consider taking up other options for treating depression including counselling, diet and exercise. The symptoms of depression and benefits of the different types of treatment can be read at www.beyondblue.org.au.
Treatment
If your doctor thinks that you might have symptoms she or he may suggest starting or changing HIV treatment. You might like to discuss the pros and cons of including one or more CNS penetrating drugs as possible into your combination.
Even if your symptoms are mild, HAND can be progressive so tailoring your combination can halt progression and even improve symptoms. Your doctor may even want to refer you to a neurologist that specializes in HIV for a review.
ends.
Also ................
Here is a link to a fantastic article from ibase that has a table of CNS (Brain) penetration scores of HIV drugs - http://www.i-base.info/htb/v7/htb7-3/CNS.html
You should also talk to your doc about ruling out other causes like depression or underlying infection eg syphilis can cause these types of symptoms.
Take care and let us know how you go.
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Wow do I feel better. Thre previous two posts are most insightful. for poz2007- maybe we are partners in crime! I am strating a list of the troubles I have as I do have an appointment with a neurologist on the 27th/ My problems seem to come and go or maybe I just forget that they ahve happened. I am in no way freaked out about htis, but should there be a real problem I want to let people know. They can help me and maybe won''t get so angry at me that I am appearing to be just a dipshit to most of the world right now.
I have some studying to do and reading up. I have stopped editing my emails etc. It is too time soncuming to go back and back and back. If I come out incorrectly, wel I hope all of you can figure out what I meant. The last time I was tested in typing I was at 5000 keystrokes an hour with zero errors. Kiss that goodbye!
i find my fingers do not respond in the correct order- I leave out one or two words completely even though I think of them as I type. blahblah
I will let you all know what happens after my appointment on the 27th.
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well today is the day. appointment at 945.
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Had the visit, and the doctor is GREAT! I mean "Tony the Tiger" Grrrrrrreat. We did the basic memory thing tests and he does want to do an EEG and an MRI. I have to wait for my insurance to clear it before they will go ahead. Waiting, waiting. Not my best suit, but I am doing my best!
Cheers
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Update, update. I had the MRI today. My insurance first denied and then okayed using injectable dye during the MRI so at least they did all the tests that they need to.
That machine is a tight squeeze! I must admit that it took me by surprise when they started and I had to take a breather and start again. Don't know what triggered it, but it just was toooooo much when they zoomed me into the machine.
I manned it up however, and all went well. I will not hear back form anyone for several days- again with the waiting. I do an EEG next week which is easier as you just lay there and do nothing! Reminds me of a former boyfriend, ha ha.
I am trying to maintain a neutral thought on what the results will be, but isn't waiting the worst?
Part of my anxiety is the fact that next Thursday I go for shoulder surgery which is unnerving in itself. No breaks this year, it all comes crashing down.
::) :P :o ;D
Cheers, boys and girls
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I got the results. No major problems in brain, yippee! The doctor did say that there is fluid build up around one ear. No pain and I did not understand excatly what he is talking about, but I will go see him.
I am betting fifty bucks today that it is my left ear. I'll let you know
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HMMMMMMMMMM. As previously posted, I had the MRI and the EEG and just had my meeting with the neurologist.
Of course it all came back "normal" How banal to only be normal.
He was asking about depression. I don't know. It has been an extremely "active" 2 years. Diagnosis, 3 operations, mother passing, innumerable tests, Partner hospitalised with PCP which started all this. Drug treatment started.
Blah blah blah
Any other thoughts from you my learned friends? The neurologist is thinking that there might be an underlying depression which is keeping me from processing in the moment happenings.
Thank you in ADVANCE!
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As my wife will attest, when I get tired, which is easy with HIV, or if my CD-4 drops for some reason, cognative function goes to pot. My typing goes the same way and it can take me a lifetime to type a simple email and get it somewhat correct with many edits. The best I have found is lots of rest, and strict adherence to the meds to keep the numbers up as much as possible. I still think a different HIV med that crosses the brain barrier would help, but convincing a dr. to make changes is a whole new ballgame. stress surely contributes ; in the past 2 years both my wife and I were diagnosed +, she was hospitalized twice, 3 family members died, and I have had 4 surgeries, but getting adequate rest seems to make more difference in my overall well being than anything. That is hard to handle after being used to working 16 hour days but is a " must do to function". glad your tests turned out alright. Hang in there.
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Thanks friend. I am bone tired most of the time. It is hard to deal with that. I have had two surgeeries in 9 weeks and that accompanied with the lack of sleep due to not being able to get comfortable is very wearing on me. I am sure that when I get my blood work done in few weeks it will not show an uptick in the cd4.
I am more than willing to try any and all things to keep maintain and rebuild my health. I have been taking vitamins for the first time ever. 3 months now and counting, every day. added selenium. 100% adherence, all my shots, blah blah blah.
Thank you for keeping track of me. You do not know what it means to me to have another person who really understands I am going through.
Thank you from the bottom of my heart.
CHEERS!!!!! ;D
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hello web,
ive been poz 2 years this past sept. my memory took a headlong dive into the crapper over the past few months. emails are more difficult to type. i find myself rereading them noticing entire words gone or similar sounding words where other words should be.
i cant for the life of me remember yesterday's events or tomorrow's appts. seeing as how i still work this is quite worrisome. i've decided to engage myself in other types of activities that are supposed to stimulate memory and mental functions (learning, etc).
i am not on meds. my doc and friends believe it is stress, etc affecting my memory. i don't think so. it takes far too long for me to recall simple things (if they come back at all). my note taking has gone from scarce to copious and i pray that the combination of mental stimulation and meds will vanquish this loss.
keep us posted in your progress. you are not alone.
best,
d
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Hey Next2u,
Difficulties with memory are a classic symtom of depression - which is easily treated. Could you talk to your doc about this? It may not be the cause but it would be good to rule it out.
Link to cool website that explains symptoms - http://www.beyondblue.org.au/index.aspx?link_id=89.579
Take care
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Next2u- thanks for your post. I have now found four new frinds on here going through the same thing as me. I don't feel so stoooopid anymore. I have been the same as you for about two years now. I will make an appointment to see a wonderful therapist that I went to a few years ago who know me and a bit of my history which help her in talking with me. I saw her before the diagnosis and she helped me through both my partner's and my own diagnosis and the death of my mother last year.
I will certainly let you all know what we find if anything.
Thank you one and all for all your support. I do not know where I would turn without this site.
Cheers!
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I've been on Amytriptalene ( elavil) and all kinds of the anti depressants. The whole bottom line is, the only things that helps me is getting my CD4 up, and sleep. When I lose sleep ( like when they keep the lights on 24 hrs per day and poke you every 15 -30 minutes for 5 days straight in the hospital or when I have to have a steroid shot and don't sleep for 3 days) or if my CD$ drops ( why it does that sometimes I don't know) memory goes to pot. When I am rested and CD4 is above 200 I can function fairly well. The higher the CD4, the more hours I can function before I wind down . 300 will make pretty good days for me. When CD4 gets down into 130-180's or I am only getting 3 to four hours of sleep at night, my wife is at my side all day to think for me and won't even let me leave the house alone. Hang in there. I know it is frustrating. I get down a lot with HIV, Cancer, losing my voice from surgery, impotency from prostate cancer surgery, Fighting thieving insurance companies, Gov't program cuts, daily paperwork trying to get pre approvals for doctors visits, meds and tests, but every now and then I hit a HIGH that says this $@!#$# sht is not going to beat me. I refuse to be Beaten! Aim for those highs. ;D If I can pull myself up to that point every now and then , anyone can. Another thing, I find that any time I can help someone with their problems, it helps me find those elusive highs. :D I don't know why, but it just does. When U need to talk, just post. There are many understanding people that care here. Some days you feel like you are on a sinking ship and can't bail fast enough. Some days you feel like the ship is breaking up on the rocks and yet there are always those days when you feel like you have just been retrofitted in dry dock and ready to sail anew. :o
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Again and again, thank you to all who have added to this thread. pos2007, props to you buddy, you have gone through more than me! I am going to go see my therapist whom I have not seen in about a year. She is my one professional link that knew me before diagnosis and will be able to make an accurate appraisal of what has changed with me since the "before times".
She is great and I feel very comfortable talking with her.
I agree that exhaustion and illness can bring you down faster than anything. It does help me when I can talk with someone and help them out. It always makes meel a bit stornger and worthy of being on the planet and not so selfish about myself.
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Never, Never think you are not worthy of being on this planet. Any time you have those feelings, just tell those thoughts to get behind you and follow, because you are going to march. You are going to walk tall and strong and those feelings are going to lag behind your shadow. You are strong! This week I told the neighbor that I do not feel worthy of all the prayers I have been getting. ( He is a preacher) . He told me that in comparison to God or Jesus, none of us are as worthy , but we all are welcome to be here and all of us are worthy of the concern, compassion and prayers of others. College degrees don't fall out of the sky but the efforts are rewarded. You are rewarded in your diligence and you will be rewarded in this fight too. .
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wow being new here these posts really uplift me... So sleep, excercise, and memory games ie. learning is what I've concluded so far. Anything esle there that helps people? Music, good caring friends is what really gets me through the day, and having a feeling deep within that I was put here for a reason to help others. The more you help others and get involved the more reason you have to keep on going through the next day the more reason there is to :D I believe people have lost touch with that. Especially the knowing or suspecious of being infected ones that fall pray on their victims. How does one heal or forgive?
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nicknatpatywack, first you have to forgive yourself. You have to realize that you did not create that nasty little bugger that has invaded your body. You did not wake up one day and decide; "Hey I am going to make myself really really sick today". The person that gave HIV to you didn't create that nasty little bug either. You are both victims of fate. The same fate that determines the shape of the clouds. Forgiveness makes life less stressful. Sometimes people are careless. Even a paper cut is a careless act, but it does not imply malicious behavior. Even when people try to be safe sht. just happens. I know in my heart that the person I was infected by never, never wanted me to be infected. I also know that that person never wanted to be infected either. I still love that person with all my heart. You will never be able to move ahead if you carry a grudge. That doesn't mean you have to forget. It just means you have to remember in an intelligent compassionate way. ;)
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Boy is this ever the thread that doen't die! Hi, gang. I have an update for you all. I went to my therapist whom I have known since before diagnosis and she is a real sharp cookie. We had a nice long chat about all that has been going on in the last two years and she said that she saw concrete signs of depression that could be manifesting in the symptoms that I have been experiencing. Along with my regular doctor they proscribed Prestiq and the turn around has been incredible. I mean the next day I noticed a change.
I can make it through the day with no exhaustion. I can concentrate. I am interested in things again. I look forward to the day ahead.
I wish that I had gone about my investigation in reverse order, but the blessing of all the testing that was done is that I know for sure that I am in pretty good shape physically. I encourage anyone who has read these postings and is experiencing the same problems to talk to a professional about depression and it's effects on the human body and mind.
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Glad you shared the good news! ;D
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Still feeling fantastic! ;D
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I wish that I could change the name of this thread to Smart and smarter because after two months of medical treament, I feel like my old self again completely. I remember stuff, I have good recall and I feel like I sleep when I sleep. Please talk to your doctor if you have suffered with any of the symptoms presented in this thread. If it IS depression, there is help out there.
Call me lucky for investigating to the end and not giving in.
Cheers and happy new year to you all.
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Hello all, I have an appointment with my reg DOC- fabulous all the way 'round- and I need to talk with him about effects of HIV on brain function. I am only on Atripla. Started out at CD4 134, now it is 246 after a year of struggling along with allergic to bactrim- another story indeed!
But what I am looking for is this:
I feel like my short and mid term memory is completely gone. Forgetful forgetful forgetful. I leave entire words or phrases out of my typing. Does this seem "normal" to you all, Has anyone gone through this?
Cheers
I did and Ginkgo Biloba and Lecithin helped me a great deal!
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I did and Ginkgo Biloba and Lecithin helped me a great deal!
Just wanted to remind to anyone taking an efavirenz based combo (sustiva, atripla), that it seems Gingko may lower efavirenz blood levels (http://www.poz.com/articles/hiv_efavirenz_gingko_761_16669.shtml), so be cautious about taking it if you are on one of those meds.
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I did and Ginkgo Biloba and Lecithin helped me a great deal!
Last December JAMA published the results of the largest NCCAM-sponsored study of ginkgo biloba. For age-related dementia, at least, the results are completely negative (http://www.sciencebasedmedicine.org/?p=3235).
The study was very rigorous – a consensus trial designed to address all the criticisms of prior smaller studies. It was a direct comparison of gingko biloba at 120mg twice a day, double blind, randomized, multi-center trial involving 3019 subjects aged 72-96 for a median of 6.1 years. Subjects were followed with standardized tests of cognitive function.
The results are easy to report – every measure showed no difference between G biloba and placebo. There was no difference in cognitive function, risk of developing dementia, rate of progression of dementia or normal cognitive decline with aging. Usually such studies involve some random noise in the results, especially when several outcomes are measured. But with such a large study, random fluctuations should average out, and that is exactly what happened.
Gingko biloba has been used for centuries as a medical herb, and the most popular claim made for its use was to enhance cognitive function. The justification for this claim was always thin – G biloba has a mild blood thinning effect. It was therefore claimed that the herbal drug would enhance blood flow to the brain and improve brain function.
However, this is not a plausible mechanism. The brain exquisitely regulates its own bloodflow, and suboptimal perfusion results in a widening of the blood vessels to increase flow. This autoregulation would not be enhanced by mild blood thinning in a healthy individual.
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Just wanted to remind to anyone taking an efavirenz based combo (sustiva, atripla), that it seems Gingko may lower efavirenz blood levels (http://www.poz.com/articles/hiv_efavirenz_gingko_761_16669.shtml), so be cautious about taking it if you are on one of those meds.
I notice that was only in 1 case and there wasn't any others listed - perhaps that mans body-chemistry?
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I did and Ginkgo Biloba and Lecithin helped me a great deal!
How?
MtD
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How?
MtD
I'm sure some will say it's psychosomatic, but my short-term memory increased as did my recall.