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    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of and finding treatments for complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

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  1. F

    Damn cats! Cats, Bartonella, XMRV and CFS

    I just got the results back. Dr. Schaller was wrong, I don't have babesiosis and also was negative for anaplasma and erlichia phagocytophilium and chaffeensis. The only test left is the amplified bartonella test. I'm curious about whether I have bartonella vinsonii or kohelerae. Otherwise I...
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    Should a CFS female have a baby? Should she go on antiretrovirals during pregnancy?

    My two concerns are that some forms of CFS/ME are likely transmissible and that a patient wouldn't have the energy to do a good job at parenting both in physical care and to pay enough attention to let the kid feel that they are loved. Heaven knows with ME I can barely take care of myself. The...
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    how I ditched CF

    I'm on mohoey's side with this one. This story is too fuzzy and treatment is questionable. We need to know what infected the patient and have a rational treatment for it.
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    Should a CFS female have a baby? Should she go on antiretrovirals during pregnancy?

    Well sickof perhaps you need an analogy. The choice basically is if you had two children, one with cfs and one without, and had to sacrifice the cfs one to save the unafflicted one's life (and the life of their offspring) would it be worth it? Of course the answer is yes, but it's not an easy...
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    Should a CFS female have a baby? Should she go on antiretrovirals during pregnancy?

    Waverunner, good to have some agreement. fla, a little hard to follow but I get your point. Best not to spread cfs vulnerable genes around. rwac, evidence that XMRV matters at all is nonexistent. More likely, other vectors are activating the vitamin D receptor and NF-KB pathway and XMRV...
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    Should a CFS female have a baby? Should she go on antiretrovirals during pregnancy?

    Re: Mark The point of evolution is to select the best adapted traits and weed out the rest. Ironically, medicine opposes evolution by interfering with the process. It allows clearly unfit, disadvantaged beings who would otherwise be totally incapable of survival to live in a population with...
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    Should a CFS female have a baby? Should she go on antiretrovirals during pregnancy?

    Did Konynenburg consider that CFS patients might just need a lot of methionine, an essential amino acid, due to their fight with the disease? This is the most simple explanation for the low serum level, increased need rather than a legitimate metabolic defect. I have a problem thinking that...
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    Should a CFS female have a baby? Should she go on antiretrovirals during pregnancy?

    Isolated cases are called "case studies" and these ARE relevant. It is a fact that CFS occurs in clusters, indicating that it is infectious.
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    Should a CFS female have a baby? Should she go on antiretrovirals during pregnancy?

    >Yout theory about EBV and stealth viruses, is interesting and worth looking at, but it is, as you rightly put it, a guess and a personal one at that. Unfortunately, it cannot be seriously considered in this matter, for that very reason. You seem to be jumping to conclusions to summarily rule...
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    Should a CFS female have a baby? Should she go on antiretrovirals during pregnancy?

    >However, to say that healthy individuals instinctively select out the sick is not correct. If it were so, many of us would not be married or otherwises be in relationships This is a known fact. Just read a book on social psychology. The sick are stuck as outcasts comingling with other...
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    Should a CFS female have a baby? Should she go on antiretrovirals during pregnancy?

    I agree with this and the smartest thing to do is play it safe and assume the worst case scenario that the kids will be infected and that you'll not have enough energy to care for them. As the boy scouts say, hope for the best but assume the worst.
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    Should a CFS female have a baby? Should she go on antiretrovirals during pregnancy?

    I read that blog. What a terrifying prospect, the thought that your kids could come down with it and have no future. More reason not to have them if you have this disease. By the way, you can probably forget about that life insurance policy. Insurers have been limiting disability for CFS...
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    Should a CFS female have a baby? Should she go on antiretrovirals during pregnancy?

    I said voluntary, not involuntary. You need to read more closely. If people want to have deformed babies then that's their right. Just don't give them incentives to do it. I'm not advocating genocide. Maybe there should be a box on people's taxes to support retarded childbearing. But...
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    Should a CFS female have a baby? Should she go on antiretrovirals during pregnancy?

    I don't think that "supportive" posts are always in the best interest of the person. Moreover, if your bad advice fails then I bet you're not going to be responsible for the consequences. Actually I didnt say that, you are making a red herring but aside from that it is a good question. If two...
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    Should a CFS female have a baby? Should she go on antiretrovirals during pregnancy?

    Well i don't agree. Parents need energy and cfs patients don't have it. Moreover it is cruel to risk a child's health with an infection. Just because you don't agree doesn't give you the right to bully me about it. I've already said this no reason to repeat. Also, the global warming...
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    Should a CFS female have a baby? Should she go on antiretrovirals during pregnancy?

    It's just tiresome seeing people self justify their desires with flimsy arguments.
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    Should a CFS female have a baby? Should she go on antiretrovirals during pregnancy?

    Not just xmrv, that's probably just a trigger for latent bacterial infections that are blood borne. Bad idea to have kids until cured. Accept it and spare your babies the suffering and maladjustment from the inability to parent them.
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    Should a CFS female have a baby? Should she go on antiretrovirals during pregnancy?

    T>The only problem with that is that there is pretty much overwhelming evidence showing that ME/CFS is a lifelong disease.\ Nobody said life is easy Tulip. I dont like to group everyone together. I think CFS is a mixed pool of post EBV, undiagnosed stealth infections (bartonella, lyme...
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    Should a CFS female have a baby? Should she go on antiretrovirals during pregnancy?

    No don't have a baby. CFS pathogens are transmitted in blood. Blood donation is banned for CFS patients by blood services in the USA and other countries. So your baby will likely get it and also you'll be incapable to take care of it. Don't have one until you are completely well.
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    Damn cats! Cats, Bartonella, XMRV and CFS

    What you said isn't totally correct. Galaxy paused their testing to do a study. Well Galaxy's test is expensive as are the "lyme literate" MDs and frankly I question their judgment after reading websites which endorse all sorts of quackery. I'd rather be in the study, get the Galaxy test for...
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    Damn cats! Cats, Bartonella, XMRV and CFS

    No, MDs refuse to treat without a positive test. The Galaxy test is the only test that has high sensitivity for it. It is patented. So yes I need it. Igenix can't test for anything other then the quintanas and henselae species. My symptoms match vinsonii. Standard bartonella...
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    Damn cats! Cats, Bartonella, XMRV and CFS

    Hi again. New update. As of 2011Apr4, visited a new MD. After being strung along for four months MD ordered bartinella sp. molecular diagnostic test from Fry Labs in Scottsdale, Arizona. It was a complete waste of time and I wish someone had warned me about it here. Their test isn't...
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    Damn cats! Cats, Bartonella, XMRV and CFS

    I have an update on my progress. The clueless alt med quack MD I was seeing long distance gave me a notice that he was ending care about two months ago and I had 60 days to find a new one. This initially worried me but turned out to be for the best. I was able to find a new MD on a new...
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    The XMRV tree

    I agree with JPV. Many viruses trigger CFS: EBV, MLV, XMRV. So to think it is just XMRV really is premature.
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    US Disability Judges Get Death Threats Over Claimant Delays

    As far as violence not being justified that's a matter of opinion and ends up being an evaluation of the cost to benefit ratio. In this case the system is clearly being "violent" against the claimants, albeit in an indirect manner and it has been this way for years. So without some kind of...
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    US Disability Judges Get Death Threats Over Claimant Delays

    It's obvious that the goal was to underfund the system to provide delays so they could kill off the claimants before they collected. Even so the payments for those who finally succeed are a joke. Thank you US Republican party.
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    US Disability Judges Get Death Threats Over Claimant Delays

    http://news.yahoo.com/s/ap/20101114/ap_on_go_ot/us_judges_threats Social Security judges facing more violent threats. AP. 11/15/2010. Judges should be worried. Many claimants are former military and it wouldn't be hard to locate them using online search tools. Once located they can...
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    Do you see squiggly bacteria when you look at a blue sky?

    I have suspected bartinella spp infection. One thing I've noticed is that I can see a ton of bacteria when I look at the sky floating around in the liquid covering the eyes. They appear either as single cells or squiggly chains. I was wondering if anyone else sees this.
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    Damn cats! Cats, Bartonella, XMRV and CFS

    I have some updates. Visited a new internal medicine MD under new health insurance. Previous complimentary & alternative MD doc gave me a letter of discharge saying that he felt his office was spending too much unpaid time on my case and didn't want me around anymore! I presented a strong...