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by MikeHersee
on Wednesday, 16.December 2009 23:29

Doctors not Listening

"I was diagnosed HIV Positive in Feb 2002. I’ve always believed in the holistic approach to illnesses, and years ago threw Prozac I was prescribed down the toilet. At the time of my HIV diagnosis I had a good friend who supported me. He also had a strong holistic approach. For someone who hardly ever went to the doctors having to go to the hospital twice every 3 months to have blood tests done was very stressful but my friend said, "Go with your sunglasses on, and hold your head up high", that really helped.

I maintained a positive attitude, but when I went to see the doctor and told him I had an alternative approach, within a matter of minutes he tried to destroy my ‘positivity’ and told me virtually that there is no point having that attitude and, "Do you know how serious this is?" and how someone who thought like me and had a holistic approach is now in a wheel chair.

At the time I was quite vulnerable, and hearing that crushed me a bit. After that I went to the hospital in tears. I did maintain my health regime though and a year later My CD4 count went up from 250 to 650. Instead of encouraging me the doctor said the result must be a mistake and again I felt crushed. It seemed when the counts when down it predicted doom, but when they went up it was an error, so there was no way out.

Since then I stopped taking care, and my CD4 count has been as low as 190. Every time I go to the doctor’s I feel they pressurise me to go on their drugs and when I tell them I don’t wish to they say, "Well, eventually you'll have to".

This has all felt an enormous pressure, for as well as having to deal with the other issues that go with being diagnosed with a so-called terminal disease, I feel that my views are not being recognised, and really felt alone with this. I went to other support groups that had the normal beliefs about AIDS, and the people there also said the same thing. I felt I was alone in this battle, until I discovered HEAL London. It was a relief to know that there were some intelligent people out there that think ‘out-side the box’ and that I was not alone in my views.

I don’t feel any support from the medical profession, as they are so one-sided in their views; They don’t support any patients who go against them, and don’t listen to them as a holistic being but just see them as a statistic, and it feels like they can’t wait for them to take their meds. This has made me lose more trust in medical professionals.

Apart from the diagnosis, physically, but for a few rashes,  (which they also blame on the HIV)  i have been in good health.  But the psychological effects have been imense, and deterimental to progressing in my life in most areas."

SB

(heterosexual, non-drug-using female)

A health professional comments:

Your experience of not being listened to by medical professionals is a very common one but of course I realise that that doesn't minimise the lack of consideration that you have personally experienced. As I'm sure you now know, there are many explanations as to why your test showed 'positive' other than the official explanation forced on you.

You rightly took care of your own health but you have found this difficult whilst being in contact with medical professionals who are trained to reduce people's life experiences into some form of statistic ('CD4'/'Viral Load' etc); to dismiss people's own explanations about their own health; and to pressurise people into certain forms of behaviour and accepting pharma treatments.

Comments  

 
0 #16 MM 2010-11-23 23:46
One study you quoted showed an increase in mortality on HAART, there are 1000s that show a decrease, absolutely hundreds.

.. and believe me there are 1000s, is not science, its misrepresentati on.

Would you just name ONE or TWO please?
er... no, I would rather not believe you.
Same old story: there are thousands... Why don't you just tell us one then.
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0 #15 MM 2010-11-23 23:35
You make all this sound like a competion, who dies first those on ARV's or those not...
This is not a competion, but real Lives.

It just seem like once we are diagnosed we are non-people but just statistics, in the middle between scientific arguments... But hang on we are here too.. Listen to real people! Ask them how they are doing, and what they want...
or don't we have a choice??

SB

a) So, everyone in the world who does not have a HIV positive diagnosis is fit and healthy??? I wonder what is the source of this incredible assertion.
b) Ditto. I would love to see some evidence for this.
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0 #14 S 2010-10-10 19:05
[quote name="#1"]I can relate exactly to what your saying and i gave in to them in 96. However , i have only 5 weeks ago found out about the other points of view from other scientists and doctors , so have quit my meds 3 weeks ago. Wish id never taken them as they damaged my genetic make-up while on them and dont know if it will ever recover.


Hi sorry to hear the 'drugs' caused you problems, but i'm so glad that you did some research and now are off them.. I hope you will intime recover from the ill-effects of the 'Drugs'
Yes they do operate very cleverly and put fear into many people, also many people who are diagnosed are 'ill' at the time, and ofcourse with any illness the immune system is already weak...so this in turn causes a false positive anti-body result!! Its all very cleverly controlled.

Thankyou for your encouragement.
All the best.

SB
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-1 #13 S 2010-10-10 16:59
[quote name="#9"]And as already discussed with you via email, of all the HIV denialists I have meet, and discussed with not one can ever explain why a) why those without HIV that are fit and healthy (i.e. non cancer suffers etc) do not acquire opportunistic infections, b) why there is such a big reduction in life expectancy in those with HIV without HAART compared to those without



You make all this sound like a competion, who dies first those on ARV's or those not...
This is not a competion, but real Lives.

It just seem like once we are diagnosed we are non-people but just statistics, in the middle between scientific arguments... But hang on we are here too.. Listen to real people! Ask them how they are doing, and what they want...
or don't we have a choice??

SB
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0 #12 S 2010-10-10 16:35
In reply to #2 cont.

I just don't like the pressure that doctor's put on people and the fear tac-tics involved.. I mean to be told every few months (when you feel great) that in a few months time you'll get ill and be in a wheel chair unless you take the ARV's is not very encouraging or helpful. Many people then do 'give in' to the drugs out of that fear and do become ill, (from the side effects) which is then blamed on the HIV and the 'drugs' not working.
SB
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+1 #11 S 2010-10-10 16:33
In reply to #2
Your first comment says it all 'what they think is best' what about how a patient feels? is that not important?
You say the vast majority of people with low CD4 counts dont remain well, well it is a fact that CD 4 counts don't necessarilly measure health and many people even with low counts are doing very well. I myself apart from a few 'minor' infections have remained very well. I do believe that there are many other's ways to prolong a healthy life, and ARV's are not the only answer. Many other factor's that contribute to a holistic way of health should in my opinion also be taken into consideration... but these are ignored by the medical professionals.
In contrary to what you have seen, I have in over 8 years now seen many people pass away that have been on the arv's. I believe that maybe linked to an over load of toxins in their system.
The people I know who are not on the 'drugs' are doing great.
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0 #10 Guest 2010-09-04 21:04
Thankfully, the vast majority of people with HIV are sensible enough to take HAART, and keep the AIDS of the 1980's in the past. What you suggest will kill so much more than you will ever try to save. I couldn't sleep if that was on conscience.
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0 #9 Guest 2010-09-04 21:03
And as already discussed with you via email, of all the HIV denialists I have meet, and discussed with not one can ever explain why a) why those without HIV that are fit and healthy (i.e. non cancer suffers etc) do not acquire opportunistic infections, b) why there is such a big reduction in life expectancy in those with HIV without HAART compared to those without and finally c) why if these oxidative stresses etc are the cause with HIV meerly being a bistander, why do people that test -ve but have the same risk factors (i.e. popper use, poverty) not develop these opportunistic infections? and d) why if the tests are so inaccurate do close to 100% of people that are positive also show the viral genome on PCR?

To question evidence is wise, to dismiss evidence to further your own point is madness.
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0 #8 Guest 2010-09-04 21:03
I would also like to ask what type of training etc you have embarked upon to act as patient advocates? And what form this takes, do you attend clinics with patients? I find that entirely inappropriate to be honest, you may feel like you have a crusade, however going to a patients appointment with them to further your agenda is also rather disgusting.

One study you quoted showed an increase in mortality on HAART, there are 1000s that show a decrease, absolutely hundreds.

It is frightening the number of people that seem to believe this 'psuedo' evidence it really is, at the end of the day it is each individual patients choice to choose what they decide to do, after all it is their bodies. But to totally disregard any studies that do not support your own opinion, and believe me there are 1000s, is not science, its misrepresentati on.
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0 #7 Guest 2010-09-04 21:02
As for suggesting I need to do more research, as you already know I am a physician and have worked with HIV patients for a long while. What you need to do is stop selectively presenting and misinterpreting evidence. What exactly are your credentials and qualifications in HIV? In terms of clinical practice or research? I mean I thought this website might actually have some interesting theories on the things you emailed such as acetyl cysteine as an additional treatment. But having read this website, it is clear to me that you are meerly dangerous. I mean recommending that people should not get HIV tests, is bordering on the diabolical as I have already said to you, your rates of false positives are much exaggerated and you have not yet explained why if someone tests positive on an HIV antibody test, why they show viral genomic material on PCR.
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0 #6 Guest 2010-09-04 21:01
15. Barnett SW, Quiroga M, Werner Am, Dina D and Levy JA: Distinguishing features of an infectious molecular clone of the highly divergent and non0-cytopathic human immunodeficienc y virus type 2 UC1 strain. J Virol. 67:1006-1014 (1993).

This oxidative stress theory that you present as I have already discussed, DOES not explain why AIDS suffers, close to 100% of them test HIV positive, and those that are not positive almost never, ever present with opportunistic infections. You imply that HIV is an innocent bystander, if that is the case, why do we not see so many people that are HIV-ve showing up with immunosuppressi on?
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0 #5 Guest 2010-09-04 20:59
References please. As for needing to do alot more research, no I really don't, being a physician and having worked in Africa, I think you need to look at the patholgoy of HIV post HAART and pre HAART and I am sorry, but people live longer with HAART. Also one metaanaylysis doesn't make it so, there are plenty of studies that show a declining CD4 count is associated with increase mortality.



As for proving that HIV exists, where do I start? This Perth Group nonsense that HIV does not fulfill the Koch postulates, they do not apply as they do to viruses, no virus has EVER been isolated to the Perth groups standards, however the fact that HIV has had its genome cloned 13. Fisher AG, Collalti E, Ratner L, Gallo RC and Wong-Staal F: A molecular clone of HTLV-III with biological activity. Nature (London) 316:262-265 (1985).
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0 #4 Guest 2010-09-04 20:58
As I have already discussed with you via email, that CD4 counts individually may no predict health. However, trends within the CD4 count and the CD4 percentage (which doesn't change much) is more accurate. You rarely if ever see some of the opportunistic infection at certain CD4 counts, even one physician admitting that the CD4 count does not always predict whether someone will get ill, doesn't derive from the fact that those with falling CD4 counts have a much higher mortality than those without. Where does this assumption that CD4 counts are a trailing edge indicator? Where does this come from? I have seen many well patients with a consistant falling CD4 count. Doctors have mistake the cause for the effect? Says who?
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0 #3 MikeHersee 2010-09-03 07:03
James, we are arguing that fact. You are making several mistakes in your analysis. Firstly, CD4 counts do not have a useful predictive ability. A metastudy concluded that as a prognostic tests CD4 counts were as reliable as 'the toss of a coin' - ie, useless - and this was even admitted by an AIDS specialist in North West London. What has been confused is that CD4 counts can drop as a result of ill-health because the CD4 cells have moved away from peripheral blood where they are measured and are doing other things. CD4 counts are a trailing edge indicator, not a leading edge indicator, because they tend to trail behind the health of the body. Doctors have generally mistaken the cause for the effect.

With regard to AIDS drugs, I think you need to do a lot more research. Firstly, where's the HIV for them to kill in the first place? We're still waiting for someone to prove it exists in humans.
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0 #2 Guest 2010-09-02 23:50
Its sad that your doctor made you feel like that, regarding the drugs, at the end of the day a doctor is there to advice you of what they think is best. And despite the fact you have remained well, the vast majority of people do not remain well with CD4 cells at that level. You are more at risk of infections, and I have seen many more patients die with low CD4 counts, then I have seen die when on anti-retrovirals. The decision to not take the medications is your own, no one can argue that they are not toxic, however ARVs have moved AIDS from a acute condition where patients deteroiate and die to a chronic condition that can be managed. No one can argue that fact.
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+1 #1 Guest 2010-03-26 10:38
S.B. , I can relate exactly to what your saying and i gave in to them in 96. However , i have only 5 weeks ago found out about the other points of view from other scientists and doctors , so have quit my meds 3 weeks ago. Wish id never taken them as they damaged my genetic make-up while on them and dont know if it will ever recover. You did the right thing and my opinion is to now stay away from these people who clearly have no intention of listening to sound advice when they clearly have no idea what they are doing. Or perhaps they do, cause its cleverly done how they target people!
Stick by your guns , i salute you. Peace.
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