Invest in ME Conference 12: First Class in Every Way
OverTheHills wraps up our series of articles on this year's 12th Invest in ME International Conference (IIMEC12) in London with some reflections on her experience as a patient attending the conference for the first time.
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Whats The Point?...

Discussion in 'General ME/CFS Discussion' started by YostFMX, Apr 15, 2018.

  1. YostFMX

    YostFMX

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    All general practitioner I've seen (in the US), they do blood test (not the ones i ask for, i feel its viral CFS issue i have), say I'm 100% healthy from the test, won't do anything or seek a specialist, dead end.

    Whats the point of going to the Dr. I ask myself? Such a headache to do, I feel so angry and worse when I leave and get no where.

    I'm at the point to where I say screw it, I'll buy Oxymatrine and just take it how I've read on this site, it will work or not. I mean it seems like even if i had test to see what it is it doesnt make a whole not of difference because it seems its like you take Oxymatrine or and anti-viral or nothing.
     
    Last edited by a moderator: Apr 15, 2018
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  2. Learner1

    Learner1 Forum Support Assistant

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    GPS typically don't have enough knowledge to help.

    You might try seeing a functional medicine doctor, an immunologist, infectious disease specialist, rheumatologist, endocrinologist, neurologist, or maybe a dysautonomia specialist. Or, better yet, an ME/CFS specialist.

    And you may need a team of doctors.
     
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  3. hangininthere

    hangininthere

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    I just take supplements I've read about on CFS support groups, to help ease my symptoms a bit, and to help me rest a bit more comfortably.

    Patti
     
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  4. LINE

    LINE

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    Sadly, most people hit those dead ends with their GPs and it oftentimes causes more trauma and discouragement. Most doctors are not equipped to deal with a complex issue of ME.

    I found that formulating an plan of attack is a better idea than reliance on someone else to do that for me, this puts the ball in my court. I carefully considered all the options and the costs involved such as financial, convenience, how much commitment to that therapy etc. I also did a multi layer back up plan in case plan #1 fails. Obviously one has to consider the risks and rewards, so always be cautious.
     
    Last edited: Apr 15, 2018
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  5. tiredowl

    tiredowl

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    Be careful with oxymatrine if you have autoimmune issues, as it can cause immune activation from what I read. I can understand your hopelessness with the doctors very well. I wish they could understand the tiredness that CFS is... Because not only do such patients get rejected, but having to spend the small amount of energy we have on getting someone to listen is just sad. Thankfully there exist some doctors that aren't like this, but they are difficult to find.
     
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  6. tiredowl

    tiredowl

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    What is your plan of attack if you don't mind telling?
     
  7. LINE

    LINE

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    I am now at an 8 on a scale of 1-10 - for quite some time I had a modest functionality of about 3-4 hours per day. Mine is an involved situation but the thing that pushed me over the edge was a protozoa infection which by far is a chronic infection that hits the body hard. I had some viral issues before that.

    I attack the protozoa with a directed attack (you can see my prior posts for this information). I also used some specialized other modalities which I included in prior posts. If you have questions, please feel free to let me know.

    (for viral issues, I have used black seed, caprylic acid, andrographis, colostrum, high dose Vitamin C, general supportive nutrients (b vitamins, vitamin A etc).
     
    Learner1 likes this.
  8. YostFMX

    YostFMX

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    Sadly with health insurance in the US you have to see a GP first and have them refer you do a specialist, forget about paying cash for one. I live with in one hr of Dr Chia but insurance wont pay for him, and i can only guess cash is a lot to see him.
     
  9. Learner1

    Learner1 Forum Support Assistant

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    I live in the US and can see any doctor who is a preferred provider in my insurance network. Perhaps a little creativity in figuring out who you can see is in order. Even finding a cooperative doctor who will run tests and take any research you bring into consideration can be helpful.

    I do see a ME/CFS specialist, who is not in network, and must pay cash for visits with him. But its worth it to get good help.
     
  10. maybe some day

    maybe some day Senior Member

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    Typical PCP and health insurance for this illness is useless. No use blowing money on specialists as they wont cure you anyways. Use your insurance to keep tabs on typical health issues and any new symptoms that might not be related to ME.
     
  11. Learner1

    Learner1 Forum Support Assistant

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    @maybe some day Your profile says you live in the San Francisco area, one of the best areas for help with ME/CFS, with multiple ME/CFS specialists and functional medicine doctors. It is possible to improve greatly with good help from these resources.
     
  12. maybe some day

    maybe some day Senior Member

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    Perhaps, but I along with other friends have not benefitted. The treatment potential is there, but even paying thousands upon many thousands, its a crap shot if you gain any health- Ive seen it first hand. Two local ME sufferers have access and utilized the best of the best cutting edge Drs. ..yet they are still very sick.

    One advantage though is that your likely to have a Dr that has heard or knows about ME, and believes you. Its a double edge sword. Sort of like having the most classic and exotic sports cars at your finger tips, yet no one has a key
     
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  13. Learner1

    Learner1 Forum Support Assistant

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    The research seems to indicate that this is a multi-headed beast. There are immunological and infectious aspects, but there are also nervous, endocrine, and digestive system aspects. Even the best doctors have gaps in their knowledge due to the state of the research. However, tackling this with a team of doctors with different skill sets may be more productive.

    A functional medicine approach, along with top expertise in immune and infectious topics can get many of us a long way.
     
  14. 5150

    5150 Senior Member

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    If you ever find a Dr. (MD) who knows CFS ME MS, hang on to them. It is rare.
     
    maybe some day and LINE like this.
  15. YostFMX

    YostFMX

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    Looking up MediCAL Drs reviews in my county, how depressing, all of them are the worst of the worst. Poor in America (sick and cant work) you get crap for Drs. I think I'm on the right track to forget even trying to get help from MDs.
     
  16. Sushi

    Sushi Moderation Resource Albuquerque

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    Have you applied for Disability? That would give you Medicare which has a lot more choices of doctors.
    This is sort of my approach. Yes, you are likely to strike out with most GPs, but if you search out ones with experience treating ME/CFS patients (you can ask about practitioners in your area by starting a thread here on PR), you should be able to at least find someone who is open to taking in the existing research and help you with symptom relief.

    I personally have found independent Nurse Practitioners are often more open and flexible if California allows them to have their own practice. At this point--without the research that will pin down the causes--help with symptoms may be the best we can do, but that can make a huge difference in functionality.
     
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  17. JBoneske

    JBoneske

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    How many and how difficult is it to apply for disability and win? I know you probably need an official CFS diagnosis from a dr.
    I’m trying to get diagnosis ASAP cuz I’m getting more and more spent as this 17 months carries on since I got sick. Also I’m missing so much work now in the past 2’months. Can’t reallly do it anymore. Hard enough to shower and leave the house at this point.
    Is disability a difficult and frustrating goal? Like, most of you, I don’t need anymore challenges.
     
    Last edited by a moderator: May 10, 2018
  18. matt321

    matt321

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    What if you spend the same amount of time connecting with recovered people and ask them for advice?
     
  19. Applying for disability is very worthwhile. Nowadays, there are ways to make it easier.

    The first thing is to assess what kinds of disability you're eligible for. California is one of 5 states with a state disability program.

    You may have short term and long term disability from work based on ERISA.

    Then there is Federal program, Social Security Disability, which since you work, would be SSDI instead of SSI. Which is good, because it pays more and you can keep savings.

    For SSDI, you can either use a non lawyer service like Allsup, or possibly be able to hire a lawyer to take your claim from its initial application, vs. having to wait until you get denied to help you.

    That way, you may be able to get approved earlier in the process as they know the right things to get in your file to make your claim successful.

    The idea is to use short and long term disability and possibly California disability while you're waiting for SSDI to get approved.
     
  20. JBoneske

    JBoneske

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    Thanks. Very helpful as usual.
    I actually got terminated yesterday. I knew it was coming and it’s not their fault. It’s nobody’s fault. I’m just too sick to do it. I’ll apply for unemployment to start.
    I’m still not diagnosed by dr yet. I told him I could be in jeopardy soon. I said I need it get diagnosed so I can pursue disability or SSI.
    Worried this could take a while because I think he wants to find what is wrong with me. That was my only goal as well. It’s been 17 months. Unfortunately I had to come up with new “goals”. I reminded him that we ruled everything out and then some.
    I don’t know what I’ll do if I sit here undiagnosed. I need to get the ball rolling because f don’t have much energy or money.
    As you all know it’s hard enough losing your life, on top of that you have to fight for what’s left.
    Need to get diagnosed so I can apply and hopefully not have to worry and fight for survival. Hopefully they know I’m not faking this which I’m sure happens a lot.
    Thanks again.
     

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