1. Patients launch $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!
ME/CFS and Beating the Clock
For Jody Smith, the ticking of a clock was enough at one time to chase her back to her bed. But with the passage of time, she has been able to reclaim her living room ...
Discuss the article on the Forums.

$10,000 and where to go??

Discussion in 'General Treatment' started by readyforlife, Jan 1, 2012.

  1. readyforlife

    readyforlife Senior Member

    Messages:
    136
    Likes:
    135
    2012 resolution, set aside $10,000 to see a CFS/ME specialist. I also have Regence Blue Shield insurance. The two doctors that interest me are Klimas and Peterson. I live in Washington state and see a MD who also believes in Alternative Medicine. In the last 15 years i've tried just about everything. The one thing I have not tried is anti virals. I'm really sick of feeling good than crashing. I know that my doctor can get me feeling a little better with glutathione pushes. But what I really want is a real CFS doctor who has a protocol. I do like my Glutathione pushes but my doctor is one hour away and the cost is $75 twice a week.

    So my question is where should I go?? Is Dr. Klimas and Dr. Peterson seeing new patients? I know Dr. Klimas has moved to a new facility.
  2. Ian

    Ian Senior Member

    Messages:
    207
    Likes:
    100
    You tried dentistry ? Most people have hidden infections in their jaws, or metals which they are allergic to, in their mouths. Dead teeth.. cavitations. The list is endless. No amount of pills or injections will help if you have a small pocket of gangrene that is invisible to x-ray in your mouth.
  3. readyforlife

    readyforlife Senior Member

    Messages:
    136
    Likes:
    135
    I just rolled my eyes just like I did when the doctor that i'm seeing right now said the same thing. He sent me to his Dentist and they took out two of my metal fillings and looked for any kind of infections ect. Than my doctor put me on a three month metal detox and that was four years ago. My doctor was telling me all these stories about people that have illness and it's just a problem with their mouth. Not the case here but thanks for the advice.
  4. Ian

    Ian Senior Member

    Messages:
    207
    Likes:
    100
    I wouldn't be so sure. In my case I had a huge (literally) infection and bone defect that was only visible with MRI. So there was no hope of my local dentist finding it with his x-ray. At least you got the metal out of your mouth.
  5. TheMoonIsBlue

    TheMoonIsBlue Senior Member

    Messages:
    442
    Likes:
    54
    Hi ready for life, If you were interested in Antivirals, Dr Lerner may be an option, he is in Michigan, he does long term antiviral treatment for certain herpes viruses and he knows how to test for them correctly unlike most local docs, so if you were interested in that area it might be worth the trip just to be tested and see if anything is showing up.

    I have also heard a lot of positive things about Dr Enlander who is in NYC. Enlander seems to have a lot of different treatment options available at his clinic, I'm pretty impressed by what I have read and heard. I am sure there are patients of both doctors on this board if you wanted more info.
  6. readyforlife

    readyforlife Senior Member

    Messages:
    136
    Likes:
    135
    I've been tested and came back possitive for HSV1, EBV, CMV, MYCOPLASMA, HHV6 and my husband still kisses me on the lips ;) I have an appointment with my doctor who has some ideas on how to treat CFS but not like the big hitters that I want to see. We have talked before about doing antivirals and he just didn't jump up and down about it. I feel like i'm going to have to bring him a protocol and say can we try this. And he is really good at reading anything I bring in for him and will let me try alot of things. It's been about a year since I last saw him and he was really wanting me to try these SAM-PD injections. I'm going to make a decision after talking to my doctor on where to go, than i'm going to call around and see about getting on a waiting list.
  7. Nielk

    Nielk

    Messages:
    5,196
    Likes:
    4,983
    Queens, NY
    What do you think that Klimas or Peterson can do for you that another doctor can't? If you are just looking for anti-virals, I would look for a doctor in your area who can prescdribe it. Alterantively, i would certainly try Dr. enlander who is geographically closer to you.
    No one has a magic potion. I don't hear of patients getting cured by Klimas or Peterson. Not yet, anyway. Just because they have a lot of experience with the illness or knowledge, doesn't mean they are hiding something up their sleeve for the wealthy who can afford the.
    Dr. Enlander in NYC is running open studies for GcNAF and Ampligen. Based on your bloodwork, he would prescribe anti-vitals if he thinks it would help you.

    Good luck!
  8. Freddd

    Freddd Senior Member

    Messages:
    4,538
    Likes:
    891
    Salt Lake City
    Hi Readyforlife,

    In this real life game of YOU BET YOUR LIFE, it's more a game of "your money AND your life". I spent $10,000 a year for 20 years trying to achieve at least an accurate diagnosis and useful treatment a few years back starting in 1983. I gave up on the docs after $200,000 flushed down the tubes and total futility. Then I solved the problem myself. The active b12/folate protocol will do the trick for a lot of folks, if FOLLOWED with some precision. However, as it is a SYSTEM approach, leaving out important details makes it generally ineffective. If you can't stand the feeling of hundreds of stalled processes all trying to start up at once I don't know how to cure this. I do know that I was healed enough in a year to start exercising and rehabilitation from near death from congestive heart failure and neurological degeneration. I do know that 175 of 200 symptoms are tremendously reduced or totally gone leaving me CURED of FMS and CFS. I just don't have the symptoms to be diagnosed with such any more. All I'm left with are old injuries and subacute combined degeneration. Not perfect but not bad after 16 years of total crash CFS/FMS Lots of other folks have also been successful at it too. It requires careful attention to details and fine tuning, building upon what works. An intense startup appears to predict proportionate success at healing. There are lots of competing hypotheses which will appear to be scary enough to scare the socks off of you. If you buy into the fearful hypotheses you will stop doing what works. Good luck.
  9. TheMoonIsBlue

    TheMoonIsBlue Senior Member

    Messages:
    442
    Likes:
    54
    Hi ReadyForLife,

    If you are positive for all those herpes viruses+ mycoplasma, I would really recommend Dr. Lerner. He is pretty much considered the "tried and true" expert for treating the viruses you mentions. Being positive for all three viruses EBV, HHV6 and CMV would probably make you a prime candidate for anti-viral therapy. If it would not be possible for you to travel to MI for months or years to follow treatment with Lerner, I think you still may want to consider traveling to see him to be tested and be evaulated and see what he recommends. Then, you could try and find a doctor that is local in your area that would be willing to follow his antiviral protocol, if you feel that is something you want to do.

    I believe you can also get in to see Dr Lerner pretty quickly as opposed to being on a waiting list for years!

    It would be worth a shot! He has a website which outlines his treatment program. I think it is cfsviraltreatment dot com

    Again, I also have a high opinion, from what I have read and seen online, of Dr Enlander, whom Nielk has posted about. I think he has a lot more treatment options he is trying at his clinic like mentioned, ampligen and gcmaf, but also does antivirals and other things. He has a website also.....I googled it looks like it is enlander dot com I would really like to see Dr Enlander myself.

    I think there was also some doctor in CA that was going to be doing trials of Ampligen but I do not know who it is....
  10. readyforlife

    readyforlife Senior Member

    Messages:
    136
    Likes:
    135
    Thank you all for the replys. TheMoonIsBlue, thank you for the information and websites. Dr. Lerner is another doctor who interest me alot. I have copied some of his information for my Doctor to read. I have an appointment today with my doctor and will see what he has to say about Valcyte.

    Nielk, Thank you for the comment. I know there is no cure for me, so its not what i'm looking for (I can only dream that will happen one day). What I would like is a true Protocol to follow that has a proven track record. I have a great doctor that tries really hard to help me but there doesn't seem to be a protocol and alot of times it's me bringing him information and saying hey can we try this. The one thing he hasn't jumped on is antivirals and i'm sure its because he doesn't know for sure what kind of protocol to use. Dosage, bloodwork and how often etc...

    @Fredd, I will google b12/folate protocol tonight when I get home. Thank you for the info.
  11. Freddd

    Freddd Senior Member

    Messages:
    4,538
    Likes:
    891
    Salt Lake City
    In general I have found that 16 grams of vitamin C, Olive Leaf extract (Planetary worked well for me) and the active b12 protocol renovated my immune system, got rid of all the suspected viral and bacterial things I had. I had so many long illnesses ascribed to "misc. virus" through the years I don't know any more what ones I had or didn't have. About the only thing I can be sure I didn't have was Lyme disease as far as the testing could tell.

    My immune system is the best in my life now and with two very minor cases of flu or colds have had nothing at all in almost 9 years. This is a complete change from my entire previous life in which I was sick for 1/3 of the year and never well the rest of the time.

    Olive leaf extract can cause some stomach upset. I found that twice a day for a month get rid of most everything. Somebody I know found that the olive leaf extract stopped cold herpes infections in 2 days each time there was an outbreak and has been outbreak free for some years now.
  12. Daffodil

    Daffodil Senior Member

    Messages:
    2,801
    Likes:
    776
    ready.....i keep hearing that in a couple of months, we will know something concrete about what lipkin is finding in CFS patients...wonder if you should wait until then to see a specialist? maybe there will be some new news on treatment?
  13. Freddd

    Freddd Senior Member

    Messages:
    4,538
    Likes:
    891
    Salt Lake City


    Hi Daffodil,

    I wouldn't hold my breath. Viruses as an ongoing cause of CFS/FMS, rather than an intial trigger, looks like flogging some naked brokendown RNA.
  14. Daffodil

    Daffodil Senior Member

    Messages:
    2,801
    Likes:
    776
    i dont agree. i believe 100% it will be a retrovirus.
  15. Nielk

    Nielk

    Messages:
    5,196
    Likes:
    4,983
    Queens, NY
    Is there something you know that we don't?
  16. readyforlife

    readyforlife Senior Member

    Messages:
    136
    Likes:
    135
    @ Daffodil, thanks for the tip. I googled lipkin and read his latest message http://cii.columbia.edu/blog.htm?cid=CalAzy
    In this letter he states that "We intend to complete collection and analysis of samples from 150 patients and 150 controls in early 2012." Is this why you said in a couple of months we might hear something? I will keep and eye on this and I hope early 2012 means a couple of months. ;)
  17. Freddd

    Freddd Senior Member

    Messages:
    4,538
    Likes:
    891
    Salt Lake City
    Hi Daffodil,

    Is that the one "true" retrovirus? What happened to epstein barr virus? What about coxsackie/echo family of viruses? What about all these other various viruses of so many types that people have had? What about those triggerred by traumatic injury. So everybody that had any regular viruses rather than retro viruses, traumatic injury or no obvious cause at all would be back into the mystery disease category and and not have ME/FMS/CFS? If the multi universe interpretation of quantum theory is correct and we kind of steer to the version of the universe we end up in by the choices we make, you would choose to steer to one least likely to have a cure in the lifetime of anybody currently alive?

    Then consider if there might be triggerring causes that then tip a person into a different meta stable physiological condition that is the ME/CFS/FMS that isn't maintained by the triggerring cause and might have any of dozens of triggerring causes in the first place. That seems to be the hypothesis that makes sense with so many people sick from appraently so many diofferet triggers. In any case I'm much more concerned with the cure than the cause. I was sick all my life and became terribly sicker in 1987. I'm much healthier now and intend to remain that way rather than dwell on ancient history. I wish you the same good health.
  18. Charles555nc

    Charles555nc Senior Member

    Messages:
    436
    Likes:
    56
    I also believe it is 100% retrovirus XRMV mutants (explains lack of single test to detect) with coinfections adding to the wide variety of symptoms. We also have "endogenus retroviruses" that can influenced by other infections.

    I saw the hunter hopkins center "cfs specialists" for 2000$ including tests (they lied about the costs). They only quoted that study that says that people who cant sleep should take sleep meds, in pain? take pain meds, and you wont hate your life as much. I think its the shine study? What a joke. Some people quote it as the cure who havent read it or know anything about cfs.

    Cfs speacialists can be some of the worst scam artists, so yes get a reliable refferal before you go and get price quotes BEFORE. Get tested for viruses: epstein abrr, hvv6, mycoplasma, chlamdiya pneumonia, hormones levels, coxsackie viruses etc etc.

    I have tried everything including antiretrovirals, only havent tried ampligen and visitide. In 8 years of suffering, this has worked the best for me. And its not nearly as costly...

    Vitamin C - 18 grams sodium ascorbate, 6 grams per meal (Im 210 lbs)
    *Lysine - 6 grams per day, 2 grams per meal. Combined with vitamin C, this is a
    natural protease inhibitor.
    *Proline 6 grams per day, 2 grams per meal. Combined with vitamin C, this is a
    natural protease inhibitor.
    *Glycine - 6 grams per day, 2 grams per meal. This is a natural protease inhibitor.
    *A glass of all natural/organic Green Tea once every 3 days (makes me feel great but I get some nerve pain)
    *N-Acetyl Cysteine 1800mg per day. 600mg per meal. This is a critical component to protect your
    liver.
    *Acetyl-L-Carnitine - 1500mg
    *Co-Q10 300-1500 mg per day, Take the larger dosages if you have serious muscle weakness or chronic
    fatigue. It is very expensive, so take whatever amount you can afford.
    *Vitamin E - 400iu natural vitamin e
    *Lugols Iodine (5%)- 2 drops, twice per day, weekends off. Go off of it for a month if you get pain in the bottom of your neck.
    *SAM-e (from gnc)- 400mg a day (ive tried 3 brands and sam-e from gnc only one I felt good on)


    +occasional (once or twice per week) zinc, selenium, magnesium, melatonin, potassium, raw thyroid supplement, edta suppositories, taurine, b vitamins, and sulbutiamine

    Avoid taking selenium and melatonin within two days of each other. Ive had horrible scary auto immune reactions.
  19. November Girl

    November Girl Senior Member

    Messages:
    301
    Likes:
    126
    Texas
    I've seen more than my share of doctors who thought they could help. I don't think they were quite scam artists, but I spent a huge amount of time and money for very little improvement.

    What I really like about Klimas and Peterson is that they specifically ME/CFS, and have serious research credentials to back them. I don't look for a cure, but would love to see improvement. I'd love to have someone knowledgeable take a good look at me and my test results and advise which supplements would help and why. I'm very tired of trying to treat myself. I like my PCP, but she knows squat about ME/CFS. She would be comfortable working with a respected MD like Klimas or Peterson. I'm leaning towards Klimas, but really help I can get in to see one of them in the coming year.
  20. Freddd

    Freddd Senior Member

    Messages:
    4,538
    Likes:
    891
    Salt Lake City

    Hi Charles,

    Vitamin C - 18 grams sodium ascorbate, 6 grams per meal (Im 210 lbs)

    YES! I found 16 grams a day to be most excellent in helping my immune system, inspired by Pauling "Keep increaseing Vitamin C until you stop getting sick" as 2 doses of 8 grams each

    SAM-e (from gnc)- 400mg a day (ive tried 3 brands and sam-e from gnc only one I felt good on)

    I didn't try that brand. I also found Nature Made to be better than any other I did try. I haven't found anybody else who can tell the difference between brands.


    I am one of those few and far between people that am quite thoroughly CURED of FMS/CFS. I did it with the active b12/folate protocol as 100% of FMS/CFS symptoms are b12 and folate deficiency symptoms with some secondary and tertiary deficiencies as variations.
    http://forums.phoenixrising.me/showthread.php?11522-Active-B12-Protocol-Basics
    http://forums.phoenixrising.me/showthread.php?188-B-12-The-Hidden-Story

See more popular forum discussions.

Share This Page