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Thread: New member: CD4 620, VL 300 000

  1. #11
    jee is offline Veteran Member (100+ posts)
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    Default Re: New member: CD4 620, VL 300 000

    Joey, first of all, my advice would be to stay calm and not be in panic mode. Mental health can and will determine your physical well being.

    Let me share my personal anecdote with you and what helped me tremendously. After being on Arvs for little less than a year, having started it with CD4 in double digits, I realized that nuking my body with these toxic chemicals was going to have some serious side effects, so unbeknownst to my doctor I started intermittent therapy, first one day on, one day off, then two day, then three day, that too by breakng the med in half. At the same time, I started taking a powerful Indian antioxidant called gooseberry juice (mixed with water) plus Ashwagandha supplement. I saw miraculous jump in my numbers in less than a year, from 300 with meds everyday to over 800 with half-a-med every three days.

    There are always options we have if we are wise enough to study and exercise them. Good luck, and feel free to write and continue asking questions.

  2. #12
    Joey is offline New Member (< 10 posts)
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    Default Re: New member: CD4 620, VL 300 000

    Hello everyone,

    I know it's been a while since I last posted on here. The reasons are as follows total lack of energy and motivation to write any meaningful reply, and health issues that keep me only half-functional in my daily life. This post is gonna be rather short, because I don't have much time and I'm also extremely exhausted. I too apologize I'm not going to reply to some of your last replies in this thread. I would rather focus on my current situation, because I'm starting to see it as serious and alarming.

    The thing is I feel worse and worse everyday physically and mentally. My last CD4 count was around 380, VL around 280 000 if I remember correctly. Since beginning of this year I haven't had ONE single day I felt healthy and "normal". Not one. I tried a lot of things to help myself to get better, but none worked and it's getting unbearable for me to continue like this. I'm extremely tired, the fatigue is getting out of control. And that is just one thing that's making my life miserable.

    My other symptoms are:
    Sweating very easily, with just a little exertion; clammy skin; tight, uncomfortable chest; easily out of breath, dry cough; bad and oily skin; watery, sleepy eyes with heavy eyelids; irritated eyes; very blurry vision afterimages, floaters, visual snow; slight weight loss; getting sick often (bronchitis and weird sinus infections, etc.), anxiety; confusion; VERY itchy skin, especially legs, but anywhere really; food intolerances (can't eat avocado, eggs...), gas, constipation, fatty stool; tingling in hands, legs especially when in some positions, they start tingling almost immediately; mouth ulcers (not much though, I keep them under control with zinc supplementation), oral hairy leukoplakia this is a big one I think, usually only HIV+ people have this; occasionally enlarged lymph nodes; mucus in throat constantly there when I swallow; scratchy throat; muscle twitches especially above one elbow, sometimes eyelids (I take magnesium pills everyday though); weakness; loss of strenght...

    As you can see, there is just way too much. I can't deal with this anymore. I mean, it's been almost a year and I'm completely miserable. I view it that ARVs are my only reasonable option I have now. I'll try them and see, if I'm finally feeling just a little bit better. I just can't afford to continue like this. I would kill myself, honestly (and frankly, still have that as an option if ARVs are not gonna work as I would like... sorry for being this honest :/)

    What I would like your opinions on, is what drug would be least toxic, or damaging to my body, if that is even possible?
    In my country, my recommended options are:

    Genvoya (not sure if I qualify)
    Triumeq (need a depression diagnosis, but I can get it somehow)
    Truvada + Prezsita + Norvir (this one is covered by insurance with no requirements, but I don't want this combo because it's twice a day, bone loss issues, etc.)
    Truvada +Isentress
    Truvada + Tivicay

    I have done some research and would prefer Tivicay monotherapy. Or maybe more of a safe bet, start with Triumeq and over time continue with just Tivicay. I don't know if my doctor would allow me to do this probably not. I really don't want to take those meds, I avoided them like a plague to this day afterall. But now I can't wait to get on them, honestly. I just want to feel normal again

    Tomorrow I'm gonna have some tests done for candidiasis and bacterial smear from my throat. I have a lot of potential diagnosis in my head that could cause all of my symptoms, for example histamine intolerance, GERD, IBS, active mycoplasma infection (I overcame one in January)... But I still feel like even if diagnosed with some of them, they are still a manifestation of this HIV "thing". I was a normal healthy person before this mess...

    I gotta go to sleep. Thanks for any reply.

  3. #13
    Join Date
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    Default Re: New member: CD4 620, VL 300 000

    The first issue is what you reported 7 months ago around lung/pulmonary issues.
    If you didn't have a bronchoscopy and lung function tests done back then, and any appropriate conventional treatment needed, then you may be suffering from the multiple symptoms untreated lung illness will show. You may also have severe dysfunction in the gut. All of your symptoms do occur in those two problems.
    No 'HIV' drugs will resolve any of the above two issues if tests show that you have them.
    You clearly need a proper full differential health testing that, initially, ignores your 'HIV' status.
    But it reads like you are ignoring the posts in April and just seeking advice from people - who can't give you any such advice - on the use of which 'HIV' drugs you should take. That's putting the cart before the horse.
    People in your situation and dealing with it like that around 'HIV' drugs, have 1000s of posts on the 'positive' forums and it doesn't make good reading.
    If your current mental state is leading you to simply take those drugs then you may feel better - at least psychologically - if you do. But I'm not going to advise which you should take as that isn't morally right as it's not relevant to your actual symptoms.
    Apart from getting yourself properly tested for the issues mentioned at the start, my only other advice is stop using brand names for drugs and refer directly to the drug itself, and in the combinations what they are made from.

    Quote Originally Posted by Joey View Post
    Hello everyone,

    I know it's been a while since I last posted on here. The reasons are as follows total lack of energy and motivation to write any meaningful reply, and health issues that keep me only half-functional in my daily life. This post is gonna be rather short, because I don't have much time and I'm also extremely exhausted. I too apologize I'm not going to reply to some of your last replies in this thread. I would rather focus on my current situation, because I'm starting to see it as serious and alarming.

    The thing is I feel worse and worse everyday physically and mentally. My last CD4 count was around 380, VL around 280 000 if I remember correctly. Since beginning of this year I haven't had ONE single day I felt healthy and "normal". Not one. I tried a lot of things to help myself to get better, but none worked and it's getting unbearable for me to continue like this. I'm extremely tired, the fatigue is getting out of control. And that is just one thing that's making my life miserable.

    My other symptoms are:
    Sweating very easily, with just a little exertion; clammy skin; tight, uncomfortable chest; easily out of breath, dry cough; bad and oily skin; watery, sleepy eyes with heavy eyelids; irritated eyes; very blurry vision afterimages, floaters, visual snow; slight weight loss; getting sick often (bronchitis and weird sinus infections, etc.), anxiety; confusion; VERY itchy skin, especially legs, but anywhere really; food intolerances (can't eat avocado, eggs...), gas, constipation, fatty stool; tingling in hands, legs especially when in some positions, they start tingling almost immediately; mouth ulcers (not much though, I keep them under control with zinc supplementation), oral hairy leukoplakia this is a big one I think, usually only HIV+ people have this; occasionally enlarged lymph nodes; mucus in throat constantly there when I swallow; scratchy throat; muscle twitches especially above one elbow, sometimes eyelids (I take magnesium pills everyday though); weakness; loss of strenght...

    As you can see, there is just way too much. I can't deal with this anymore. I mean, it's been almost a year and I'm completely miserable. I view it that ARVs are my only reasonable option I have now. I'll try them and see, if I'm finally feeling just a little bit better. I just can't afford to continue like this. I would kill myself, honestly (and frankly, still have that as an option if ARVs are not gonna work as I would like... sorry for being this honest :/)

    What I would like your opinions on, is what drug would be least toxic, or damaging to my body, if that is even possible?
    In my country, my recommended options are:

    Genvoya (not sure if I qualify)
    Triumeq (need a depression diagnosis, but I can get it somehow)
    Truvada + Prezsita + Norvir (this one is covered by insurance with no requirements, but I don't want this combo because it's twice a day, bone loss issues, etc.)
    Truvada +Isentress
    Truvada + Tivicay

    I have done some research and would prefer Tivicay monotherapy. Or maybe more of a safe bet, start with Triumeq and over time continue with just Tivicay. I don't know if my doctor would allow me to do this probably not. I really don't want to take those meds, I avoided them like a plague to this day afterall. But now I can't wait to get on them, honestly. I just want to feel normal again

    Tomorrow I'm gonna have some tests done for candidiasis and bacterial smear from my throat. I have a lot of potential diagnosis in my head that could cause all of my symptoms, for example histamine intolerance, GERD, IBS, active mycoplasma infection (I overcame one in January)... But I still feel like even if diagnosed with some of them, they are still a manifestation of this HIV "thing". I was a normal healthy person before this mess...

    I gotta go to sleep. Thanks for any reply.

  4. #14
    Join Date
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    Default Re: New member: CD4 620, VL 300 000

    Sorry if the advice you're getting here isn't what you want to hear, but JeremyB37 is right.

    You so-called viral load is virtually unchanged. Your CD4 count is declining and a matter to be concerned enough to continue to monitor, imho, but you are far from being in a state of crisis on that account (a very personal and subjective opinion on my part).

    So much of the rest of your issues could be related to any number of things, including and particularly your own psychological health, and that may be the hardest one to treat. There are few resources for people who are skeptical about the prevalent notion that if you only take the ARVs you'll be fine. Maybe you'll benefit from the drugs on some levels, but there's a pretty good chance it will be psychological, which isn't to say you shouldn't try them if you feel that desperate.

    The only advice I give regarding drug regimens is to avoid all NRTIs and NNRTIs. They are the oldest and highest risk class of ARV drugs, and even orthodox doctors are looking for so-called "NRTI-sparing" regimens for the sake of their patients. They simply can no longer be justified.

  5. #15
    Deksman2 is offline Veteran Member (100+ posts)
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    Default Re: New member: CD4 620, VL 300 000

    It is not just obsession about Vit D3 (I suggest you go back and re-read your comments when you tell someone whose blood plasma state you don't even know to severely supplement themselves with 40,000 IU a day!!!) but all the other supplements you literally tell them to take will-nilly. There is very little evidence to support high dosing with artificial sources of K2, and there is zero evidence for the medical benefits of BHT.
    Your lack of knowledge on the subject is not directly my problem... however, to alleviate your concerns about Vitamin D and 'high doses', you should read through this:
    https://www.ncbi.nlm.nih.gov/pubmed/21987526

    If you go back and read my comments, I recommended 40 000 IU of Vit D per day as a loading dose with explicit instructions to lower it progressively.
    This would apply if a person is usually deficient in Vitamin D (which would of course require of them to check their levels beforehand), and considering the RDA was miscalculated per clinical trials themselves published on Pubmed years ago by a factor of 10 (https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4210929/), most people would be deficient regardless.

    As for K2... again you demonstrate ignorance on the subject matter:
    https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3172146/

    Synthetic sources of K2 MK-7 have been found to be just as effective as natural ones coming from Natto (which btw contains up to 1000 mcg per each 100 g).

    100 to 200 mcg of K2 MK-7 is more than safe for Human consumption (especially when you take into account that is usually absent from majority of diets around the globe - but not all).

    As for BHT
    I suggested BHT as a potential supplement that could at the very least be considered given its noted properties in vitro and animal models (as noted in peer-review).
    I also explicitly mentioned that all of my suggestions should be taken as mere suggestions, with proper links to published clinical trials to back them up so that the OP can get more information and then decide what to do.


    Blatantly disregarding my post even when I provided RELEVANT links to published peer-review no less (whereas you have provided little to nothing of substance in comparison... except for personal disapproval, which I'm sorry is NOT backed up by medical science) would seem to be very ignorant.


    Besides, aren't we here to share information with each other among other things? Information that could demonstrate to be useful and is based on CREDIBLE scientific data?
    No?
    Well, what the heck are we doing here exactly?
    Moan about whether HIV might or might not be real and the cause of AIDS?

    The OP's condition might not have anything to do with HIV to begin with.


    Your other random almost throw-away suggestion that they make a decision to go Vegan is just as irresponsible - and I say that as a Vegan myself. Becoming a Vegan safely is a momentous decision and requires a lot of knowledge and preparation first and emotional strength, and your silly comments about the evidence for replacement of lost B vitamins in such a diet from seaweed is a sick joke as it has no evidence to support it, in fact quite the opposite. The studies available show General Practitioners in the UK facing particular health problems with Vegans who refuse to supplement with B vitamins, either through a personal choice or because they believe the nonsense about seaweed.
    Random and throw-away suggestion?
    You seem to have missed the link I posted that lead to peer-review that backs up my claim.
    As for getting B12 from Nori/seaweed - if you are that ignorant to not even know this was verified in peer review, then honestly, you should stop bugging other people and using your lack of knowledge as a validation.
    At this point I find your ignorance on the subject matter extremely irritating mainly because you are being offensive for no good reason.
    https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4042564/

    There are good and bad ways going vegan.
    Supplementing with B12 is nothing to be ashamed of and can be recommended if one thinks they might be deficient in B12 for whatever reason, or if they cannot afford Nori, or cannot find it (it is certainly more cost effective to get a supplement though).
    Shall I also mention how most omnivores are deficient in B12 too, not to mention Zinc, Selenium, Vitamin C, K2, Vitamin D, etc?
    No?
    Or are you going to cherry pick my replies to death using your own bias and lack of knowledge on the subject as a justification?

    Going vegan isn't THAT difficult.
    Yes, it requires a mental change, but it is doable... and I offered it as a suggestion (which doesn't mean the OP will go along with it).

    The underlying point is that someone new to being diagnosed as 'HIV+', with already stated emotional issues, needs calm guidance around immune health testing - nutrients, gut function, GSK and Glutathione - before they get bombarded with with what looks to me like a pre-ordained template of medical advice from you based on no personal knowledge of dealing with 'HIV' and no reference to the actual individual concerned.
    Just what exactly makes you more qualified than me?
    Given how little knowledge you demonstrated of several different nutrients and relevant peer-review behind it, I think YOU are the one who should refrain from giving ANY sort of advice... that is unless you want to embarrass yourself as you did.

    But hey, what do I know?
    All I do is just use the Internet to broaden my knowledge of the natural world based on the scientific method.
    I don't claim to know everything... I provided suggestions and yes advice backed up by clinical trials which the OP can at the very least study before reaching a decision (which is exactly what I mentioned).

    And finally, the OP's symptoms could be attributed to so many other things that have nothing to do with HIV (as Jonathan mentioned).

    Now, if you'll excuse me, I'm going to sleep.

  6. #16
    Join Date
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    Default Re: New member: CD4 620, VL 300 000

    Deksman2

    Thanks for coming back eight months later to respond to issues unconnected to the OP's latest post.

    Supplementation without prior testing is inadvisable for very simple reasons:
    1. It could be both useless and damaging if the deficiencies don't currently exist.
    2. It could be wasted expenditure if the above applies
    3. It can be detrimental to someone's emotion and psychological state if they see no benefit.

    So the underlying point is - get tested first and supplement after on that basis.

    Read what the OP says about their health and any testing they have already had and respond to that, not what you think they are deficient in.

    And the evidence for what the potential benefits are of various supplements and for what conditions is not difficult for anyone to find.

    I'm disappointed you still don't get that.

    Quote Originally Posted by Deksman2 View Post
    Your lack of knowledge on the subject is not directly my problem... however, to alleviate your concerns about Vitamin D and 'high doses', you should read through this:
    https://www.ncbi.nlm.nih.gov/pubmed/21987526

    If you go back and read my comments, I recommended 40 000 IU of Vit D per day as a loading dose with explicit instructions to lower it progressively.
    This would apply if a person is usually deficient in Vitamin D (which would of course require of them to check their levels beforehand), and considering the RDA was miscalculated per clinical trials themselves published on Pubmed years ago by a factor of 10 (https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4210929/), most people would be deficient regardless.

    As for K2... again you demonstrate ignorance on the subject matter:
    https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3172146/

    Synthetic sources of K2 MK-7 have been found to be just as effective as natural ones coming from Natto (which btw contains up to 1000 mcg per each 100 g).

    100 to 200 mcg of K2 MK-7 is more than safe for Human consumption (especially when you take into account that is usually absent from majority of diets around the globe - but not all).

    As for BHT
    I suggested BHT as a potential supplement that could at the very least be considered given its noted properties in vitro and animal models (as noted in peer-review).
    I also explicitly mentioned that all of my suggestions should be taken as mere suggestions, with proper links to published clinical trials to back them up so that the OP can get more information and then decide what to do.


    Blatantly disregarding my post even when I provided RELEVANT links to published peer-review no less (whereas you have provided little to nothing of substance in comparison... except for personal disapproval, which I'm sorry is NOT backed up by medical science) would seem to be very ignorant.


    Besides, aren't we here to share information with each other among other things? Information that could demonstrate to be useful and is based on CREDIBLE scientific data?
    No?
    Well, what the heck are we doing here exactly?
    Moan about whether HIV might or might not be real and the cause of AIDS?

    The OP's condition might not have anything to do with HIV to begin with.




    Random and throw-away suggestion?
    You seem to have missed the link I posted that lead to peer-review that backs up my claim.
    As for getting B12 from Nori/seaweed - if you are that ignorant to not even know this was verified in peer review, then honestly, you should stop bugging other people and using your lack of knowledge as a validation.
    At this point I find your ignorance on the subject matter extremely irritating mainly because you are being offensive for no good reason.
    https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4042564/

    There are good and bad ways going vegan.
    Supplementing with B12 is nothing to be ashamed of and can be recommended if one thinks they might be deficient in B12 for whatever reason, or if they cannot afford Nori, or cannot find it (it is certainly more cost effective to get a supplement though).
    Shall I also mention how most omnivores are deficient in B12 too, not to mention Zinc, Selenium, Vitamin C, K2, Vitamin D, etc?
    No?
    Or are you going to cherry pick my replies to death using your own bias and lack of knowledge on the subject as a justification?

    Going vegan isn't THAT difficult.
    Yes, it requires a mental change, but it is doable... and I offered it as a suggestion (which doesn't mean the OP will go along with it).



    Just what exactly makes you more qualified than me?
    Given how little knowledge you demonstrated of several different nutrients and relevant peer-review behind it, I think YOU are the one who should refrain from giving ANY sort of advice... that is unless you want to embarrass yourself as you did.

    But hey, what do I know?
    All I do is just use the Internet to broaden my knowledge of the natural world based on the scientific method.
    I don't claim to know everything... I provided suggestions and yes advice backed up by clinical trials which the OP can at the very least study before reaching a decision (which is exactly what I mentioned).

    And finally, the OP's symptoms could be attributed to so many other things that have nothing to do with HIV (as Jonathan mentioned).

    Now, if you'll excuse me, I'm going to sleep.

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