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Author Topic: Any advice for nutrition or supplements for neurological health  (Read 2370 times)

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Offline Pete_

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Hi errbody.

I am wondering if anyone has had advanced hiv aids symptoms that affected their brain(not speaking of secondary infections but rather progressed untreated hiv) has had success with any specific supplement, medication, or diet that seems to be helpful to restore full neurological health.

If you have, looking for suggestions.

I was diagnosed about 6 months ago, was a late diagnose at 5 CD4 and aids dementia symptoms had began by then. Probably had untreated HIV for about a decade. A vast majority of those symptoms went away when I started ART therapy and I have made significant improvements in overall health. Still having issues with fatigue and what not, and am trying to nourish myself best I can. I am certain the virus caused some damage for my cognitive health. I am completely sane though I feel worn out cognitively and I donít just mean emotionally or physiologically. It is most noticeable if I lack rest or nutrition. Honestly I donít know how to describe it, some odd thoughts, though Iím not delusional, more like seems like Iím short of short circuiting I think is the best way to describe it. I am not sure if anyone can relate to what Iím trying to describe. It has improved a lot. Was far worse and more disconcerting prior to and right after diagnosis when my viral count was higher and CD4 lower. By the way, have been thorough tested for secondary infections and didnít have any, have done all sorts of blood work, spinal tap, mri, all that stuff. I believe the symptoms were just from the virus itself. Never had severe aids dementia symtoms  like seizures or becoming unresponsive but prior to diagnosis I was at wits end and those symptoms probably would have been next(well I was still able to act somewhat normal, in my mind it felt like I was descending into hell or something it was horrible, I donít feel like that anymore though when I havenít eaten enough or slept enough the feeling in my mind is disconcerting and unpleasant).

I am doing my best to consume as much calories and protein as I can. Seems difficult to get ahead in this regard, but itís doable. While I am functionally normal I get sort of burnt out feeling and it feels like a strain cognitively to maintain. Definitely progressing in the right direction as my health improves and I continue with good nutrition. Though compared to how I was feeling a few years ago, Iím still not feeling quite normal and the disease has taken a toll. I am 27, relatively young, and feel like can make a full recovery still in that regard. Supplementing with omega threes, trying to get plenty of protein and all of that. Still somewhat unpleasant and not quite where I want to be. Like I said, difficult to describe, more of a feeling almost, difficult to put in words or pinpoint or describe as its not like something I have experienced in my life prior. Also seems like anti inflammatories help. I use extreme moderation, though for some reason, I feel more normal when I take pain killers, I donít take them everyday, donít want a dependency and want to take it easy on my liver and kidneys and what not, though Iíll take them on occasion in moderate dosage and it seems to help me feel more normal physically and mentally even though not psychiatric medication. Seems like I still have a lot of inflammation which may explain that. By no means the route I want to take, just being honest. My physical health has improved but Iím still sort of in discomfort regularly, no specific pain, just feel like my body is depleted and strained. I want to heal preferably from nutrition and not cover symptoms with medication.

I want to know if anyone has any advice for diet, supplements, therapies, or medication with neurological restorative benefits. Getting my sleep and eating well seems to be best I can do. For attention and energy modafinil helps, though Iím not taking it often because trying to be easy on my liver and more focus on rest and sleep than alertness and energy for now. That sort of is something to help symptoms rather than repairing damage done.

If anyoneís been down this road already and can recommend any specific supplements or food that helped you, awesome, thank you. Any advice is appreciated. If you are newly diagnosed or experiencing late stage symptoms keep fighting. For me it got better. Just trying to do my best to get back to my full potential and feel more normal and like myself again(honestly, aside from fatigue, cognitively Iím feeling better than I had last year and half prior to diagnosis, also not having headaches, which I had the year before diagnosis). I will tell you, if you are experiencing any symptoms like those, and or are new to treatment, avoid alcohol at all costs, even if it is temporarily pleasant, for me it always made it worst(not drinking at all, have a had a few drinks since diagnosis for special occasions but still avoiding completely).

Thanks, have a good day, stay safe out there

Offline Pete_

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Re: Any advice for nutrition or supplements for neurological health
« Reply #1 on: April 05, 2020, 05:57:01 pm »
Hello. I figured what I needed. Turns out diazapam treats HIV in brain cells. I am very happy I figured this out. Relieves the symtoms I was having. Now Iím just pissed off ive been suffering all this time for no reason and they didnít prescribe it to me. I was infected with untreated HIV for a decade, and had 5 CD4 at diagnosis. Of course was affecting brain by then. Itís a night and day difference. Now of the doctors seem to recommend this. The studies are there. Look at this study. Scroll down, look at he images. A: no hiv. B: HIV antibodies proteins highlighted in green C: hiv brain treated with diazepam. https://aac.asm.org/content/aac/41/11/2566.full.pdf  My doc has been cool about everything else, very awesome person not gonna fault her, but I think she thought I was just doc shopping for meds when I showed her this study. Now I am kinda pissed off the world because I tried diazepam and itís really working, both for my brain and for my physical discomfort. Diazepam can cause drowsiness, but feeling slightly sleepy is way fucking better than feeling like however the fuck I was feeling before. My brain hurt, my body hurt, I had unexplainable cognitive distress(not psychological anxiety, but like something very unpleasant that was driving me crazy despite the fact I was sane). Now I can think more clearly and my body doesnít hurt and I feel like my normal self like I did years before diagnosis. Iíll be cautious, because I donít want tolerance or withdrawals, but thank God I found an answer. I honestly actually have more energy than I did(paradoxically as diazepam causes drowsiness) because my body isnít uncomfortable and I donít have a constant buzzard mind head ache. The diazepam stops the inflammation. In my first post, I mention I tried pain pills, because it seemed to help some, probably helped a little bit with inflation, but diazepam is way better. And I really donít want to take opiates. I also was having insomnia, not sure if dapsone and bikitarvi side affects, or just mild aids dementia because of late diagnosis far advanced HIV infection at time of diagnosis, but now I sleep like an angel. Sorry for my foul language but Iím both very happy and very pissed off. Anyone experiencing aids dementia or far advanced  hiv infection causing mental and/or physical distress should be prescribed diazepam(Iím not a doctor, so I canít recommend it for others, I am just saying, this is the only thing that has provided me relief).

Offline dallas nk

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Re: Any advice for nutrition or supplements for neurological health
« Reply #2 on: April 26, 2020, 10:07:26 am »
Are there any natural supplements that work for this?
09/20/2016-diagnosed cd4 41 cd%5.8 VL 34990
11/2016-post-poned treatment while awaiting to qualify for ARV study- cd4 29 cd%? VL?
12/2016-started treatment (Triumeq) this late because found out didn't qualify for research study
1/24/2017- cd4 233 cd%15 VL<40
4/27/2017 cd4 206 cd%18 VL <40
07/24/2017 cd4 227 cd%20.6 VL <40
10/31/2017 cd4 191 cd%23.9 VL 70
12/7/2017 cd4 248 cd%22.5 VL <40
1/30/2018 cd4 220 cd%27.5 VL <40
4/17/2018 cd4 295 cd%29.5 VL <40
8/9/2018 cd4 310 cd%31 VL <40
11/15/2018 cd4 293 cd%32.6 VL <40
02/12/2019 cd4 347 cd%31.5 VL <40
10/09/2019 cd4 380 cd%31.7 VL<40
01/30/2020 cd4 337 cd%37.4 VL 70(started Biktarvy)
06/05/2020 cd4 306 cd%38.3 VL 20

Offline Jim Allen

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Re: Any advice for nutrition or supplements for neurological health
« Reply #3 on: April 26, 2020, 10:23:01 am »
Are there any natural supplements that work for this?

Not that I'm aware off any but if you are diagnosed with HAND as it's called by your doctor, it's something to discuss.

Progress and understanding thankfully has been made since the mid-'90s reference from the OP including HIV treatments that cross the brain barrier. Far from finished but good progress nonetheless.

Jim

https://www.poz.com/basics/hiv-basics/hiv-associated-neurocognitive-disorders-HAND
« Last Edit: April 26, 2020, 11:36:13 am by Jim Allen »
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HIV 101
Read more about Testing here:
HIV Testing
Read about Treatment-as-Prevention (TasP) here:
HIV TasP
You can read about HIV prevention here:
HIV prevention
Read about PEP and PrEP here
PEP and PrEP

Offline Pete_

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Re: Any advice for nutrition or supplements for neurological health
« Reply #4 on: May 13, 2020, 07:52:58 am »
Diazepam crosses the blood brain barrier and has antiviral properties. Multiple studies verifying this. The protein Tat causes a lot of the AIDs dementia and inflammation symptoms Iíve experienced. Diazepam tackles the Tat. Also takes care of my insomnia perfectly, I only take it at night and the symptoms are gone during the day. Unfortunately my doctor wonít prescribe it. About a month and a half ago I had about two weeks of supply. Was the healthiest Iíve been all year. Felt like almost normal again, was able to sleep normally at normal hours and stay asleep. The month since stopping, the symptoms have returned and my health is not improving the way it was. Having terrible insomnia now, have odd pressure headaches. I am certain the diazepam would work. I will get more regardless of whether prescribed, the studies and affects Iíve noticed were obvious and changes my quality of life by magnitudes. Can avoid tolerance and withdraw by only dosing in the evening before bed. I think if I start talking it again, and it treats my condition and I no longer have those symptoms, not sure if the neurologist will prescribe(if they even would prescribe it in the first place) if I wasnít exhibiting the symptoms. Idk but it seems vitally necessary for me. With such low CD4 starting point, I canít handle the insomnia, makes me frail and digresses my progress. So Iím going to take it anyway if I can. Iím continuing my antiretroviral of course, no changes to my other meds. Adding diazepam whether my doctors recommend it or not. All the studies on diazepam and HIV and tat and neurotoxicity all make perfect sense relative to my symptoms. With coronavirus arround I want to avoid doctors offices, and I need to be in the best physical condition possible, so Iím going to do whatís best for me. Melatonin and benydryl do nothing to cure the type of insomnia I get, only valium is effective, and I think not only because the sedative properties but also because the suppression of tat. Iíve had worse dementia like symptoms before, and if I donít do what I need to do to take care of myself I think it could get worse like that again. I will consult a neurologist, however my general practitioner is no help and just talks about drug abuse. Iím not going to abuse any drug, I just wont live in constant discomfort and insomnia and this definitely works best for me.

Offline Jim Allen

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Re: Any advice for nutrition or supplements for neurological health
« Reply #5 on: May 13, 2020, 08:48:03 am »
Hi Pete,

Really sorry to hear things have not yet started to improve and, that you are not getting support from your GP.

I could understand the misuse concern or even long term use concern but is the GP aware you have been diagnosed with HAND/HAD and that the Diazepam is helping you to manage?

Prehaps the doctor working with you can send a note to your GP or recommend another treatment the GP can agree with? Also, If not already discussed your HIV doctor could check if the ART you are on is optimized to help you with this issue as well.

Wishing you all the best and, just as note if you mentioned studies or any medical claims then please provide peer-reviewed references, thanks.

Best, Jim

https://www.poz.com/basics/hiv-basics/hiv-associated-neurocognitive-disorders-HAND

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6454832/
Optimal treatment of HIV-associated neurocognitive disorders: myths and reality. A critical review

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5365228/
Neuropathogenesis of HIV: From Initial Neuroinvasion to HIV-Associated Neurocognitive Disorder (HAND)

https://www.ncbi.nlm.nih.gov/pubmed/28752495
Changing clinical phenotypes of HIV-associated neurocognitive disorders.

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4446730/
Long-term prescription opioids and/or benzodiazepines and mortality among HIV-infected and uninfected patients
« Last Edit: May 13, 2020, 04:22:51 pm by Jim Allen »
HIV 101 - Everything you need to know
HIV 101
Read more about Testing here:
HIV Testing
Read about Treatment-as-Prevention (TasP) here:
HIV TasP
You can read about HIV prevention here:
HIV prevention
Read about PEP and PrEP here
PEP and PrEP

Offline Lorenzopier

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Re: Any advice for nutrition or supplements for neurological health
« Reply #6 on: May 25, 2020, 04:27:10 pm »
For anyone who is experiencing cognitive decline or neurological dysfunction despite having there viral load well controlled and suppressed I would definitely suggest making sure you address this issue with your doctor or healthcare specialist who should be able to manage this quality of life issue for you. For me personally, I have noticed that using 600 mg of Acetylcysteine a day with with a meal and 50mg of alpha lipoic acid on a empty stomach definitely enhances my cognitive functions and focusing abilities as well as decreases symptoms of fatigue. Adding 1-2 grams of Glutamine a day on a empty stomach further enhances cognitive function and modulation of fatigue. Just because micronutrients such as these work for me does not necessarily mean that they will work for you as everybody's chemistry, metabolic and immune responses are slightly different.
« Last Edit: May 25, 2020, 04:46:38 pm by Lorenzopier »

Offline zach

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Re: Any advice for nutrition or supplements for neurological health
« Reply #7 on: May 26, 2020, 08:08:11 pm »
Acetylcysteine is a bronchial cough medicine used to treat asthma... it is not a micronutrient, it is a mucolytic

Alpha-lipoic acid has been used in alternative medicine as a possibly effective aid in weight loss, treating diabetic nerve pain, healing wounds, lowering blood sugar, improving skin discoloration caused by vitiligo

Sounds like a cure all snake oil

Glutamine is an amino acid.

In fact, none of the compounds you suggest (and recommend dosages for) are micronutrients.

Nothing you've said is supported by medical science. Your qualified warnings don't make your suggestions any less dangerous.


Offline Lorenzopier

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Re: Any advice for nutrition or supplements for neurological health
« Reply #8 on: May 26, 2020, 08:17:56 pm »
From https://pubmed.ncbi.nlm.nih.gov/10416949

Toward a New Definition of Essential Nutrients: Is It Now Time for a Third 'Vitamin' Paradigm?

The concepts of vitamin 'deficiency' diseases and the recommended dietary allowances (RDAs) have not kept pace with the growing understanding of the cellular and molecular functions of vitamins and other micronutrients. As a consequence, many researchers and clinicians rely on outdated signs and symptoms in assessing nutritional deficiencies. A new paradigm, presented here, proposes that: (1) deficiencies can be identified on biochemical and molecular levels long before they become clinically visible; (2) the definition of essential micronutrients be broadened to include some carotenoids and flavonoids, as well as various human metabolites, such as coenzyme Q10, carnitine, and alpha-lipoic acid, which are also dietary constituents; (4) individual nutritional requirements are partly fixed by genetics but also dynamically influenced by variations in the body's biochemical milieu and external stresses; and (5) the distinction between nutritional and pharmacological doses of vitamins is meaningless, since high doses of micronutrients may be required to achieve normal metabolic processes in some people.

Offline Lorenzopier

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Re: Any advice for nutrition or supplements for neurological health
« Reply #9 on: May 26, 2020, 08:19:00 pm »
https://pubmed.ncbi.nlm.nih.gov/19608349

Micronutrients and Amino Acids, Main Regulators of Physiological Processes

Human physiology is supposed to be a complex interaction of regulating processes, in which hormones, genes, their proteins and apoptosis are thought to play a dominant role. We hypothesize that regulation of physiological processes is mainly influenced by amino acids and micronutrients with hormones, proteins, apoptosis and gene modifications being their derivatives. Furthermore, we suppose that the cells power plant, the mitochondrion, is in fact an intracellular bacterium, living in absolute symbiosis. Because of its intracellular existence it depends on the host's micronutrients completely. Within the host these micronutrients regulate their own formation, degradation, uptake and excretion. Known deficiencies, such as iodine and vitamin D, affect billions of people. Many micronutrients neither have been investigated, nor have they been studied in relation to each other and solid data are not available. Optimal levels of many micronutrients and all amino acids are not known. Amino acids, vitamins and minerals are capable of altering gene expression, inducing apoptosis and regulating chemical processes. It makes them highly attractive for creating better health, against low cost, as we have already proven in the case of rickets, cretinism and scurvy in severe deficiencies. By creating optimal living conditions and study mitochondria from a symbiotic point of view we suppose that diseases not only can be prevented, but the course of diseases can be altered as well.

Offline Lorenzopier

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Re: Any advice for nutrition or supplements for neurological health
« Reply #10 on: May 26, 2020, 08:30:20 pm »
It looks like to me because you can't understand or comprehend what it is that I do for my own personal health reasons you are trying to come up with a way to say it is somehow dangerous or snake oil. By the way, just because something is not supported by medical science does not mean it is snake oil or can not be used to benefit a person either.
« Last Edit: May 26, 2020, 08:35:36 pm by Lorenzopier »

Offline zach

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Re: Any advice for nutrition or supplements for neurological health
« Reply #11 on: May 26, 2020, 08:34:38 pm »
And none of what you just posted does anything to support your original recommendations

You put out an asthma medication as a micronutrient with cognitive benefits

Support that claim with specific medically supported evidence

Meanwhile, I call bullshit snake oil

Offline Lorenzopier

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Re: Any advice for nutrition or supplements for neurological health
« Reply #12 on: May 26, 2020, 08:40:34 pm »
https://www.smartpatients.com/trials/NCT02505477

Treatment of Cognitive and Negative Symptoms in Schizophrenia With N-acetylcysteine

The purpose of this study is to attempt to treat cognitive and negative symptoms of schizophrenia, with the nutritional supplement N-acetylcysteine (NAC).

Schizophrenia is a chronic mental disorder that affects approximately 65 million people worldwide, and causes significant disability and suffering. Patients with schizophrenia often hear voices and have persecutory delusions. Though these are the most recognizable features of the illness, the deficits most closely linked to disability are known as cognitive deficits and negative symptoms. Cognitive abilities refer to the ability to perform mental tasks that require focus and attention, and also include memory and verbal skills. Negative symptoms refer to a lack of interest in the world, and decreased social interactions. In our study, the investigators aim to improve these symptoms and deficits by targeting the glutamate system.

Glutamate is the major excitatory neurotransmitter in the brain, and its regulation is abnormal in schizophrenia: glutamate levels are too low at some receptors, and too high at others. As well, free radicals surrounding glutamate receptors also interfere with their proper function. N-acetylcystine (NAC) is a safe and widely-available dietary supplement that may restore glutamate to its correct levels in the brain, and may also help protect the brain from antioxidant damage.
« Last Edit: May 26, 2020, 08:50:00 pm by Lorenzopier »

Offline Lorenzopier

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Re: Any advice for nutrition or supplements for neurological health
« Reply #13 on: May 26, 2020, 08:45:25 pm »
https://www.semanticscholar.org/paper/The-effect-of-N-acetylcysteine-(NAC)-on-human-%E2%80%93-A-Skvarc-Dean/428eabd7234ab5c4681076a27add57681e4a5452

The effect of N-acetylcysteine (NAC) on human cognition Ė A systematic review

N‐acetylcysteine (NAC) is a glutathione precursor with potent antioxidant, pro‐neurogenesis and anti‐inflammatory properties and a favourable safety profile. A systematic review of the literature specifically examining the effect of NAC administration on human cognition revealed twelve suitable articles for inclusion: four examining Alzheimer's disease; three examining healthy participants; two examining physical trauma; one examining bipolar disorder, one examining schizophrenia, and one examining ketamine‐induced psychosis. Heterogeneity of studies, insufficiently powered studies, infrequency of cognition as a primary outcome, heterogeneous methodologies, formulations, co‐administered treatments, administration regimes, and assessment confounded the drawing of firm conclusions. The available data suggested statistically significant cognitive improvements following NAC treatment, though the paucity of NAC‐specific research makes it difficult to determine if this effect is meaningful. While NAC may have a positive cognitive effect in a variety of contexts; larger, targeted studies are warranted, specifically evaluating its role in other clinical disorders with cognitive sequelae resulting from oxidative stress and neuroinflammation.

 


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