Survivor84
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Is it a new disease or its CFS ?
- Thread starter patient.journey
- Start date
Survivor84
Senior Member
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- 108
Ok so nobody found one doctor who cared, at all? Not one that believed you?
Teedot, it sounds as if you are facing the disbelief that early CFS doctors and patients faced (and many still face today). They approached the CDC to report the epidemic in Incline Village and were badly knocked back from their efforts. There appears to be no reliable method to report a new phenomenon to authorities for investigation and for that reason I am assuming individual doctors won't consider it. New viruses are being discovered but only after an obvious epidemic and investigation by authorities. If one of these is ignored then nothing happens.
If I hear you right you are reporting to individual doctors that you are developing symptoms after a specific sexual encounter. Then after a cursory workup you are told that you are imagining it? That's a really tough position to be in. The CFS groups are full of people who have been diagnosed with specific pathogens that appear to be chronic. Most of us don't know who they came from. It's only when we see a doctor with an interest in CFS do we get the tests and are taken seriously.
If I hear you right you are reporting to individual doctors that you are developing symptoms after a specific sexual encounter. Then after a cursory workup you are told that you are imagining it? That's a really tough position to be in. The CFS groups are full of people who have been diagnosed with specific pathogens that appear to be chronic. Most of us don't know who they came from. It's only when we see a doctor with an interest in CFS do we get the tests and are taken seriously.
Survivor84
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ukxmrv yes frustrated. CFS has a lot of things going on, which seems very complicated and all though common, most don't appear to be sexually contagious from my understanding. CFS seems to have many things involved, each person has many things in common, but some differences. I'm frustrated at the lack of medical personnel not taking people seriously when they say they were infected by another person sexually and it is chronic and appears to mimic many similarities of HIV, but it is not so called HIV. Some people suffering for 10+ years. I can't wrap my mind around the ignorance of those we trust our lives with. If one damn doctor country just believe its real and make the connections to get the ball rolling then maybe we could get help. I'm tired of seeing more and more peoples stories about contraction of this thing, there families and many with children involved. I feel like my life is out of my control and I'm always waiting to for the other shoe to drop. Do we have to die in numbers or become extremely deteriorated to ne recognized.? What is wrong with today's world, such ignorance by doctors. So many people trying and yet after years, no attempts to save us.
Survivor84
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http://arstechnica.com/science/2013/03/mississippi-doctors-functionally-cure-a-toddler-of-hiv/
Ok see at the beginning of this article it says " Mississippi doctors are reporting that they cured a baby of HIV etc etc" my point. Why can't there be an article that says " doctors report several cases of people suffering from an undiagnosed sexually transmitted disease etc etc. Who are they reporting to and how do we get this to happen. I heard people say that STD specialist were getting increased reports of people complaining about this. So why is nobody reporting it? Are people that blind or is this some type of cover up? Seriously?
Ok see at the beginning of this article it says " Mississippi doctors are reporting that they cured a baby of HIV etc etc" my point. Why can't there be an article that says " doctors report several cases of people suffering from an undiagnosed sexually transmitted disease etc etc. Who are they reporting to and how do we get this to happen. I heard people say that STD specialist were getting increased reports of people complaining about this. So why is nobody reporting it? Are people that blind or is this some type of cover up? Seriously?
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http://www.iom.edu/Reports/2013/Gulf-War-and-HealthTreatment-for-Chronic-Multisymptom-Illness.aspx
Gulf war syndrome latest report also out. They spent 8mUS$ and did research for 20 years,still they cannot find the virus. They are just doing symptom management.
Gulf war syndrome latest report also out. They spent 8mUS$ and did research for 20 years,still they cannot find the virus. They are just doing symptom management.
Survivor84
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I guess I shall assume that nobody has come across a doctor that believes them? O know I never have.
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As i said in my case non doctor have believed me, and I have seen like 20, infectologists, reumatologists, urologists, internals, etc, etc. Its frustrating when you know something isnt right and everybody say the opposite. I'm very calm and never had psiquiatrics problems, but its impossible be calm feeling this, feeling you are dieing or you can pass away in the next flu and nobody believe you, problably Im gonna get crazy before die but my mind was not the cause of that. Can we organizate some meeting or better a kind congress about this?
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I have a suggestion - I think we all need to create a symptom template and degree scale.
Example
no appetite, 4 months, level 4 ( constant)
Then potentially a % scale of normal.
Next I would suggest a list of diseases checked along with positive, negative results,
Essentially, to approach the problem like a dr or scientist.
When most of us go to the dr we just say x hurts vs. providing information that the dr can review prior to and after the visit easily.
I am relatively new to my situation and hopefully mine also stays mild.
I think if individuals did this the dr will take us more seriously as it makes their job easier.
I know I can make decisions quickly if I have the relevant information in front me.
I will also spend more time on the root cause vs the basic stuff.
I already have my history by month, tests, symptoms. I just have to consolidate it a bit more.
Example
no appetite, 4 months, level 4 ( constant)
Then potentially a % scale of normal.
Next I would suggest a list of diseases checked along with positive, negative results,
Essentially, to approach the problem like a dr or scientist.
When most of us go to the dr we just say x hurts vs. providing information that the dr can review prior to and after the visit easily.
I am relatively new to my situation and hopefully mine also stays mild.
I think if individuals did this the dr will take us more seriously as it makes their job easier.
I know I can make decisions quickly if I have the relevant information in front me.
I will also spend more time on the root cause vs the basic stuff.
I already have my history by month, tests, symptoms. I just have to consolidate it a bit more.
Survivor84
Senior Member
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wyomingscared you mean individual templates or a group one. I would like to create a survey for us with questions regarding symptoms, test exposure and timing and whether partner developed symptoms. Like a website that keeps it all on percentage. Like 95% experienced weight loss, 80% oral thrush. Or 200 people had sexual exposure
Get people to come to it. What year did each person get infected. Like 100 people infected in 206
06. That would be a way to statistically show results and make a better more believable presentation. Anybody good at making websites?
Get people to come to it. What year did each person get infected. Like 100 people infected in 206
06. That would be a way to statistically show results and make a better more believable presentation. Anybody good at making websites?
Survivor84
Senior Member
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Read this link, lengthy but good, answers some of our questions if you believe
BOSTON illness following sexual exposure. Referred me back to hhv6 research.
http://www.mecfsforums.com/index.php?topic=12278.15
BOSTON illness following sexual exposure. Referred me back to hhv6 research.
http://www.mecfsforums.com/index.php?topic=12278.15
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Yeap, continuing thinking in hiv is keep going around in circles. This guy (boston) has a lot of information but he considers true the less reliable information. Remember that although this world is full of unscrupulous trying to deceive and even make money at the expense of the health of people, it is also full of people inventing false conspiracies because it is fashionable and sells well. I still believe in a world where most acts honestly and truths soon made public (even in EEUU
).So, I stay with the ironic phrase of one of the members "you were found to be negative but you have a chronic illness with immune system abnormalities expressed in CD4/CD8. Yes? And,for reasons I do not know, your illness has been more like AIDS than MS which I would guess means fewer neurological symptoms and more opportunistic infections, but I'm guessing" . . . I know most of us are feeling very bad, but probably our answer for this questions is mostly "no", seems like aids but isn't it, we have to believe that at least. I hope we can at least overcome this topic.
Survivor84
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@unrraco I was trying to show that according to Luc montagnier this has nothing to do with retroviral activity, so BOSTON states she was told after the studied her blood. Her exposure being sexual. If this were true, what other viruses mimic transmission, symptoms and chronic? If it were not a retrovirus, makes me question the honesty of some of the best medical experts. What could this be?
Survivor84
Senior Member
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Does anybody still come on here? Anybody heard from hip,Collegeusername, ron,Omar or sherezade? Any ideas on creating a website?
patient.journey
Senior Member
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Doing better after couple of days on Valcyte and maneging better days with less fatiuge but still having symptoms !
Its the firs 2 weeks and the road is still long !
Pray for me guys
Its the firs 2 weeks and the road is still long !
Pray for me guys
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Good luck Omar. Wish you all the best and I have included you in my prayer. Thanks a lot for the update
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So - I am doing better. Basically back to normal the last few days. Also got the results back from my latest tests - all negative.
I guess it is good. I am going to a new infectious disease dr. in 2 weeks.
A colleague of mine out ofthe blue had a similar virus ( diiferent city) they have him predisone, weird these things occur more frequently than I thought.
Wishing everyone well
I guess it is good. I am going to a new infectious disease dr. in 2 weeks.
A colleague of mine out ofthe blue had a similar virus ( diiferent city) they have him predisone, weird these things occur more frequently than I thought.
Wishing everyone well
Survivor84
Senior Member
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wyomingscared how did you're colleague contract his virus?
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There is a senator from my country that was attacked by an unknown virus causing viral neuralgia, its said to have been intensified by stress. She was hospitalized and was criticized for several weeks. As you say, there symptomatology that even powerful people can have a clear diagnosis, just know what caused it but do not know what it was that caused it.