1. Patients launch a $1.27 million crowdfunding campaign for ME/CFS gut microbiome study.
    Check out the website, Facebook and Twitter. Join in donate and spread the word!
No Longer Naive in the Ways of The Beast
After having lived for years with ME/CFS, Jody Smith learned there's more to this beast of an illness than she realized, and that what might help one person may not help others ...
Discuss the article on the Forums.

A LOT of totally incorrect/wrong information and advice given

Discussion in 'General ME/CFS Discussion' started by leokitten, Oct 18, 2013.

  1. August59

    August59 Daughters High School Graduation

    Messages:
    1,479
    Likes:
    401
    Upstate SC, USA
    They do not take insurance anyway and I'm on Medicare.

    I found a small article about HHV-6 that is a little interesting:

    http://jvi.asm.org/content/87/22/12020 - Can someone get the full text of this study, preferably in .pdf, but we can work around that

    Another new virus falling to laboratory contamination:

    http://jvi.asm.org/content/87/22/11966

    Isn't Dr. Lipkin using this in the CFI study?
    SOC and meandthecat like this.
  2. August59

    August59 Daughters High School Graduation

    Messages:
    1,479
    Likes:
    401
    Upstate SC, USA
    I'm with 100% about l-lysine being a good treatment for (in my case - cold sores). As soon as I feel that tingle I pop 2000mg of L-lysine and if I don't have it on hand I'll go to drug store and ask the pharmacist for some "Cure-a-sore". It is a small bottle of ether and I'll put that on it at least 4 times a day. At bedtime I'll usually cover it well with Abreva. Every cold sore I've had since using this has been completely gone in 4 to 5 days.

    The flip side to this is that I have not had one since I became sick 10 years ago.
  3. Little Bluestem

    Little Bluestem Senescent on the Illinois prairie, USA

    Messages:
    2,329
    Likes:
    1,658
    Midwest, USA
    That requires having cooperative doctors and the MONEY to pay for it. Many of us are unemployed and uninsured.

    How many of us do think have that type of background a capability? I think your expectations are quite unrealistic.
    Delia likes this.
  4. madietodd

    madietodd Senior Member

    Messages:
    2,405
    Likes:
    1,580
    East Coast, USA
    I visited with a local friend who also has CFS, who is housebound. I realized quickly that she needed me to talk very softly and a bit slowly, and she asked me to avoid gesturing with my hands. Those aren't my CFS issues - I watch her carefully when I first arrive, to see what she needs.

    I did the same thing when I first came here, using chat a lot, to learn about sensitivities and dysfunctions different from mine. I wanted to be able to talk with people without triggering frustration in them. My natural interests and abilities lie in this direction anyway.

    The steep learning curve I can't handle at all is the medical one. I just don't absorb medical information, and nothing gets into memory. So I am very grateful for members who can digest studies and translate their relevance to people like me.

    I'm struggling with the translation part so far, leokitten, but that's my problem. Maybe some of this is an intellectual rant, and I'm more used to emotional ones. I think we'll all learn a lot from each other.
    Sing, beaker, Countrygirl and 7 others like this.
  5. Kina

    Kina Moderation Team Lead

    Messages:
    5,119
    Likes:
    3,438
    Ontario, Canada
    leokitten. In response to your first post on this thread, the internet itself is rife with 'A LOT of totally incorrect/wrong information and advice given', not just forums.

    I believe all of us are aware that we need to take a lot of information with a grain of salt or research the facts ourselves when it comes to looking after our own health. Really, the information here is just for educational value and if member's feel something is erroneous, they are free to say so and they do.

    In the end, the decision is ours regarding what we do with the information and advice given here. :) I belong to a few non-ME/CFS forums related to various subjects and they too all contain information that is incorrect/wrong. I guess it's just the nature of the internet beast.

    Kina :)

    PS. Welcome to Phoenix Rising.
    Sing, beaker, Little Bluestem and 9 others like this.
  6. heapsreal

    heapsreal iherb 10% discount code OPA989,

    Messages:
    7,064
    Likes:
    4,278
    australia (brisbane)
    I havent read the rest of this thread yet but most people are basing which antivirals are better off personal experience and also what there own doctors have found, problem is there is no black and white answer, everything we do is experiemental, even as cfs/me diagnosis is 100% and as for herpes testing and knowing if a virus is active or not its all an educated guess. In particular with antivirals, the knowledge from this board is mostly personal experience, theres just no concrete answer or we would just look up that X antiviral fixing X viruses and all is done, we dont know as the research is very limited and even more so limited to how these drugs may work in cfs/me patients as they have different compromised immune systems to other illnesses that use these drugs. I just dont think you can say most of the info is wrong because no one even knows what is right and what is wrong.

    Many of us go down this line as we have been failed miserably by the health care system, and some of us are lucky enough to have found knowledgable GP's who do alot of research on the subject.

    Im sorry but i cant believe that u can say that most of the info on here is wrong when we simply dont really have answers. And we all say that everyone reacts differently to different treatments, no one here gives a 100% certainty of a treatment. Its one big problem that has very few answers and every patient needs to be treated individually and to be treated properly happens by very few doctors, maybe a hand full. One thing i have learnt is there is no correct answer to this disease, maybe in 50 yrs time we will know??

    cheers!!!
  7. minkeygirl

    minkeygirl Senior Member

    Messages:
    2,148
    Likes:
    1,351
    Left Coast
    I don't know one person who has fully recovered and I am starting to wonder leokitten about you and your comments that everyone else is putting out misinformation. That comment sounds like a load of crap to me.

    As ukxmrv said, many of us are way past early intervention and those who may know something is up early can't find anyone to help them.

    August59. Even if I could find a doctor to RX Valcyte, who can afford it?
    Sidereal, Sing, SOC and 2 others like this.
  8. Snowdrop

    Snowdrop Senior Member

    Messages:
    359
    Likes:
    492
    Toronto
    Dear Leokitten
    Welcome to this forum. You must be very terrified at the moment at the thought that you probably have CIFIDS. I think we are generally agreed that the sooner one identifies the exact nature of the health issue and starts appropriate treatment the better the outcome is likely to be.

    I expect as your journey 'down the rabbit hole' unfolds there will in fact be much here that you may find useful. As others have said, some of us have been sick a very long time. And of those people many who would love to go back and be able to 'get right on it' treatment wise. But that ship has sailed.

    Although I have not read to the end here, I'll add that treating this illness is a road full of pit holes and traps that puts certainty on some pretty thin ice. I appreciate your urgency in wanting to help by seeing that we only have good advice here on the forum so like Nielk I suggest if you find some glaring misinformation you point it out to us with a brief statement as to its' error. That would be very helpful.

    I hope you find some useful info and assistance here. In truth (please understand this the right way all) I'd rather be on my knitting forum and other places than here. I wish that for us all (whatever other forum brings you joy).
    best of luck,
    Snowdrop
    Sing, xchocoholic, ukxmrv and 7 others like this.
  9. Snowdrop

    Snowdrop Senior Member

    Messages:
    359
    Likes:
    492
    Toronto
    Also, I meant to add that while true that testing, lab work etc is perhaps the best way to start unravelling what is happening it's not always possible. Some of us either don't have that kind of money or that level of energy or clarity of mind to think through in an organised way how to approach doing something in a logical progression. They may have all three problems. Acceptance isn't easy. We look to the youngest/least ill to help lead us out of this swamp.
    SD
    justy, xchocoholic and Delia like this.
  10. August59

    August59 Daughters High School Graduation

    Messages:
    1,479
    Likes:
    401
    Upstate SC, USA
    minkeygirl - There is always a possibility of getting Valcyte through the Patient Assistance Program. Expensive drugs usually have a pretty generous income limits.
    Delia likes this.
  11. minkeygirl

    minkeygirl Senior Member

    Messages:
    2,148
    Likes:
    1,351
    Left Coast
    I actually thought of that last night, but then forgot to look into it this morning. Thanks for reminding me.

    Usually, though they won't help if you have RX benefits which I do. I wonder how poor you have to be to afford $1000/month of medication when you're income is only slightly more than that?

    Here's the link

    http://www.needymeds.org/drug_list.taf?_function=name&name=Valcyte
    Delia likes this.
  12. August59

    August59 Daughters High School Graduation

    Messages:
    1,479
    Likes:
    401
    Upstate SC, USA
    If you go directly to the company's assistance program and plead your situation, it can get you over some humps that they might have on paper. I'm on Medicare with a Part D program, but I still get 2 of my medications through the company's assistance programs. What got me approval on one was even though my disability income was above their limit the $400 a month in medical cost dropped me below their limit and I qualified based on that.
  13. minkeygirl

    minkeygirl Senior Member

    Messages:
    2,148
    Likes:
    1,351
    Left Coast
    I"m in a medicare HMO with Part D. First I have to get someone to RX it for me. I'm seeing someone on the 31st so we shall see what she says.

    If she wants me on it then I can have her get involved. But I also want to either up my Acyclovir or switch to Famvir or Valtrex. Those should be easier to tolerate so once I get those squared away, on the treating my CMV.

    Thanks.
  14. Ema

    Ema Senior Member

    Messages:
    3,142
    Likes:
    3,238
    Midwest USA
    Have you applied for "extra help" from Medicare for drug costs? It is worth applying even if you don't think you'll qualify because there are different levels of assistance available.

    For example, my prescription drugs are capped at 2.65/6 for generics/brand names through Medicare even though my Pt D is through Humana.

    There is an application on the Medicare website.
    Tristen, beaker and Delia like this.
  15. minkeygirl

    minkeygirl Senior Member

    Messages:
    2,148
    Likes:
    1,351
    Left Coast
    I'm not even close to qualifying for that. My meds cost about $80/yr right now.

    I'll double check when I remember. LOL.
  16. Snow Leopard

    Snow Leopard Senior Member

    Messages:
    2,218
    Likes:
    1,568
    Australia
    This may well be true, but unfortunately the answer is not yet out there in the scientific literature. To claim otherwise is totally speculative at this point.

    For me personally, there are lots of stories out there, but many don't fit me at all. I don't personally have detectable titres for any of the herpes viruses besides hsv-2, nor do I remember suffering from any of them. This is not really be a surprise, since I became ill shortly after an immunisation (basically continuous symptoms since the immunisation). The problem is that unless you test positive to the common inflammatory markers (CRP, ANA etc), most doctors don't (want to) know about it. Rituximab is personally my hope, since it will drastically change how the disease is perceived in the medical community.
    beaverfury, Valentijn, Tito and 2 others like this.
  17. Delia

    Delia Senior Member

    Messages:
    137
    Likes:
    231
    Iowa
    taniaaust1

    You took the words right out of my mouth!

    leokitten I hope you don't get burned by this and stop contributing here. We need all the scientific minds here we can.

    I am very sorry you got this thing too. I hope you can understand that, well, your post came off well,

    It reminded me of the old get rich in real estate infomercials:

    Step one: buy an apartment building.

    It assumes we not only do not know these things, but could actually do them, but just aren't. My experiences are very similar to Taniaaust1's

    I'm sure others are too. It also assume none if us are at all critical thinkers about what we read or try. :(

    Please do continue to contribute! And welcome.



  18. aimossy

    aimossy Senior Member

    Messages:
    1,747
    Likes:
    2,023
    NZ
    hi leokitten,
    I am only a couple of months on PR. I think it will take me a few more months longer to gage the temperature and get a good sense of this community here it does take a while.
    It is very valuable to have people on here who can help us make sense of research that is happening and or critiquing it.
    Welcome and I hope you stay

    Aim
    Snowdrop, rosie26 and Delia like this.
  19. Lou

    Lou Senior Member

    Messages:
    448
    Likes:
    275
    southeast US
    Where to start? This thread is disappointing on many levels. While I'm fine with leokitten's return I don't want to be a beggar indigent with an arm outstretched through steel bars for a morsel of something that may or may not be there. We've been starved a long time anyway, there may be some virtue holding onto a last vestige, a proud group,

    I really didn't see much backing off, or at least, some show of understanding for the response to her/his initial posts that a few of us thought condescending, even insulting. However sugarcoated, we seemed a bunch of bumpkins in need of rescue. Btw, even though I let it slide (I've changed my mind) there was no false analogy made in my first post here to your initial one. Simply a matter of scale.

    While I recognize leokitten could be a valuable member, I don't see the relevancy of the urgent shotgun blast approach to tests and treatments for a majority of us for reasons already well stated. We've passed that point.

    Whatever leokitten decides, I wish that person well. More than that, I hope she/he will apply for transfer to the me/cfs section at NIH, use that newfound passion where it might do the most good.
    Tristen and ukxmrv like this.
  20. aimossy

    aimossy Senior Member

    Messages:
    1,747
    Likes:
    2,023
    NZ
    People don't perfectly communicate their thoughts and intentions. A persons intentions/motivations/purpose/meanings are just as important as the specific words that are said when we communicate.
    Did you mean to suggest to me and others that we were being pathetic and begging Lou?
    I have liked this thread.
    peggy-sue likes this.

See more popular forum discussions.

Share This Page