arrow44 Comments
  1. Annesse Brockley
    Mar 05 - 4:50 pm

    Thank you for sharing your visit. If you would like to check out the possibility that you might not be properly digesting proteins due to missing enzymes called protease and DNase 1, you could visit my Facebook page. The lack of these enzymes would explain EVERYTHING you mentioned in a very direct biological manner. For example, you mentioned disc problems. These enzymes are not only responsible for digesting dietary proteins and DNA, they also metabolize iron and vitamin B12. Without these enzymes you would not be able to transport vitamin B12 into your cells. This would result in elevated levels of an amino acid called “homocysteine”. Research confirms low B12 and elevated homocysteine in the cerebrospinal fluid of patients with CFS and fibro.

    Here is a post we recently made on how elevated homocysteine would be associated with degenerative disc disease.

    COLLAGEN DISRUPTION AND DEGENERATIVE DISC DISEASE IN FIBROMYALGIA AND AUTOIMMUNE DISEASE

    We have been discussing the association between fibromyalgia and autoimmune disease to TMJ, mitral valve prolapse, and joint hypermobility due to an inability to properly metabolize collagen.

    We have shown that patients with fibromyalgia and autoimmune disease have elevated levels of a potent nerve and blood vessel toxin called homocysteine. Elevated homocysteine leads to the production of defective collagen by interfering with collagen “cross-linking”.

    In the following study published in The Journal of Clinical Inves­tigation the researchers stated: “It is concluded that homocysteine interferes with the formation of intermolecular cross-links that help stabilize the collagen macromolecular network.

    A collagen defect in homocystinuria.
    Kang, A.H., R.L. Trelstad. 1973. J Clin Invest 52(10):2571-8.

    “…It is concluded that homocysteine interferes with the formation of intermolecular cross-links that help stabilize the collagen macromolecular network.”

    The interference by homocysteine in collagen cross-linking would explain why many patients with fibromyalgia and autoimmune disease often develop degenerative disc disease. In the following study entitled “Changes in collagen cross-linking in degenerative disc disease and scoliosis” the researchers stated: “The stability of the collagenous components and hence the mechanical integrity of the connective tissues such as the disc is dependent on the degree and type of cross-links between the collagen molecules.”

    Spine (Phila Pa 1976). 1998 Dec 1;23(23):2545-51.
    Changes in collagen cross-linking in degenerative disc disease and scoliosis.
    Duance VC, Crean JK, Sims TJ, Avery N, Smith S, Menage J, Eisenstein SM, Roberts S.

    “The diseases of the intervertebral disc, degenerative disc disease and scoliosis, are both characterized by changes in the extracellular matrix components that will affect the mechanical function of the tissue. The stability of the collagenous components and hence the mechanical integrity of connective tissues such as the disc is dependent on the degree and type of cross-links between the collagen molecules. This article reports results on the distribution of the different cross-links in the disc and the changes that occur with age, degenerative disc disease, and scoliosis…”

    http://www.facebook.com/autoimmunethecauseandthecure

    • Francesca
      Mar 06 - 11:25 am

      Dear Annesse,
      I found your facebook page and hit liked. There is something wrong with my protein numbers as Klimas thought I was vegetarian and I said no. I have aggressively gone after trying to get my and my 13 year old daughter’s protein number up. There are better but still low.
      Is there a specific test name that I can ask for, for this issue? I was diagnosed young with de-generative disc disease that you mentioned. I have been chasing this issue but learned nothing. I look forward to hearing from you again. Piacere, Francesca

      • Annesse Brockley
        Mar 06 - 12:57 pm

        These enzymes originate in the exocrine pancreas. Research has found that most patients with autoimmune disease have exocrine pancreatic insufficiency. We posted some of this research on our page. So, if you wanted to you could do some testing for this.

        The lack of these enzymes would explain EVERYTHING you discussed though and in a very direct biological manner. For instance, you mentioned swollen glands and low NK cells. Without these enzymes, unbroken down protein particles and DNA enter the bloodstream. This activates immune cells called “dentritic cells”. Cort posted research that found ME/CFS patients had much higher levels of these cells than normal. Dendritic cells release pro-inflammatory cytokines such as tumor necrosis factor.

        Elevated tumor necrosis factor is directly linked to swollen glands, low grade fever, lethargy, and night sweats. Research confirms that tumor necrosis factor is elevated in ME/CFS and fibro. For example, Here is some information on tumor necrosis factor and fibro that we recently posted on our page.

        Researchers in the following study concluded their results suggest that TNF is involved in fibromyalgia (FM).

        Circulating cytokine levels compared to pain in patients with fibromyalgia — a prospective longitudinal study over 6 months.
        Wang H, Moser M, Schiltenwolf M, Buchner M.J Rheumatol. 2008 Jul;35(7):1366-70. Epub 2008 Jun 1.

        “Our results suggest that proinflammatory cytokines TNF-alpha and IL-8 are involved in FM…”

        Here is one on TNF and CFS. http://www.ncbi.nlm.nih.gov/pubmed/10535608

        These inflammatory cytokines activate another pathway called the “kynurenine pathway” which will induce apoptosis in NK cells, as the link to the study confirms. http://www.ncbi.nlm.nih.gov/pubmed/21352963

        Research shows that the toxic metabolites produced by the kynurenine pathway will inflame the fascia-which is something else you mentioned.

        Here are a few studies on the activation of this pathway in fibro and ME/CFS.

        Kynurenine Pathway Activity Linked to Fibromyalgia Fatigue
        Boomershine, C.S., D. Titova, C. Zhu, A.M. Oeser, M.W. Calcutt, A. Bian, T. Gebretsadik, R. Johnson, C. Michael Stein. 2009. [Presentation Number: 1991].

        “ Increased KYN-p activity is associated with FM fatigue in humans and a murine model. IDO enzyme inhibition may be a novel method for treating FM fatigue.”

        http://www.ncbi.nlm.nih.gov/pubmed/23922501

        • Terry
          Mar 06 - 8:26 pm

          Will simply taking digestive enzymes correct this problem?

          Does this condition have other treatments?

          • Terry
            Mar 06 - 8:26 pm

            oops

          • Annesse Brockley
            Mar 07 - 12:25 am

            The enzymes that are lacking are DNase 1 and protease. DNase 1 doesn’t exist in supplement form and research shows that supplemental protease can damage the
            colon and the enzymes that digest fats (lipase). You can replace these enzymes and heal your GI tract through diet and lifestyle changes though.

            • Cecilia
              Mar 15 - 4:08 pm

              Can you please tell us how kind of diet is the best
              and how to change lifestyle ?
              Thank you very much for your informations
              Cecilia

  2. OM
    Mar 05 - 5:04 pm

    Thank you, very helpful to know. Be well!

    • Francesca
      Mar 06 - 11:26 am

      thanks om, you too!

  3. Marg ( Ann)
    Mar 05 - 7:02 pm

    Hi Francesca,

    Good going and thanks for all your reports. I realized after your last video that out protocols are the same, except for the gamma shots. I pulse Imunivor differently though ….off every weekend. I go back to Florida the end of May, last year’s report was good…except some reactivation of EVB and mono but I do not feel sick. I still have my first and worst symptom leg pain. I am anxious to hear the report of the two Alabama doctors, Pridgen and Duffly about the small nerves and EVB hiding there..It is to be out the middle of the month.

    Keep on keeping on you are a fighter, I knew when I saw your first video you were going after it.

    My best you and your cute daughter.

    Marg

    PS
    My best to you too Cort! I found you when you were starting and look what you have done. I am so glad I found you!

    We are going to win this battle.

    • Cort Johnson
      Mar 06 - 10:25 am

      Thanks, glad you’re doing better Marg (Ann). Are you on LDN as well? Not really helping the leg pain?

      • Marg ( Ann)
        Mar 07 - 6:05 pm

        Yes, Cort I am on LDN. It does take the edge off leg pain and helps my mood. Sometimes it comes and goes so maybe that is a good sign. I have gone to 3mg night and morning so we will see. I know it has helped my immune system too…that and Imunivor. Quite a jump in natural killer cells ..working at 5% on the first testing and last May above normal. They had come to normal the second office visit, and that was a year on the protocol… I am very anxious to see my tests this year. I overnight my blood so all the tests are ready to be discussed when I am there.
        Onward and Upward!

        Marg

    • Francesca
      Mar 06 - 11:30 am

      Dear Marg,
      Thank you… my daughter is cute isn’t she and so creative too! She’s on her third language at school. When a link comes out for the “two Alabama doctors, Pridgen and Duffly” please get it to me too. My EVB is always reactivated but now my HHV-6 has started in… Kisses from Italy! Francesca

      • Marg ( Ann)
        Mar 07 - 6:10 pm

        The results of the study are suppose to be out the middle of the month. I will let you know when I hear anything. I have spoken with their office twice, they are all excited about the study.

        Marg

  4. Susan Kennedy
    Mar 05 - 8:04 pm

    I’m glad she got to see Dr. Klimas and is receiving treatment. I’m happy for her. I have been trying for years to see Dr. Klimas for help with my CFS but to no avail. I’m always told ‘We are not seeing anymore people at this point please try again’! What does it take to be seen or an appointment?! I even contacted the drug company who makes ampligen and she said she would contact the doctor and get back with me.That was about 5 months ago and I never received a reply. It’s not fair to me and others looking for help. I reside in Florida too!

    • Francesca
      Mar 06 - 11:33 am

      Make an appointment with Dr. Rey, her partner… Dr. Rey is just as good but not as famous! But they are in the same office and you will get the same treatment and care… Once you in the system, you can ask down the road to see Klimas… I got in August 2011! It was about a 5 to 6 month wait back then… DON’T GIVE UP! GO see Dr. Rey. Kisses, Francesca

      • Chris
        Mar 07 - 6:58 pm

        I am a patient of dr Rey and I have had several friends with cfs who have tried to get in but have been turned away for over a year. I don’t know how persistent they have been though. I would suggest being a squeaky wheel and calling at least monthly and ask for cancellations or any availability even 6 months out,

    • Chris
      Mar 07 - 7:05 pm

      Dr Klimas and Rey’s basic protocol are famvir, LDN and inosine

  5. Tania
    Mar 05 - 8:43 pm

    Hi Francesca

    It’s great to hear you are hopeful and someone is listening intently to all of your issues.

    I just thought I’d suggest that you audio record your meetings with doctors, if they are OK with this. I have been doing this, since I easily forget most of what is spoken about during a consultation, and it is very helpful. Besides most good doctors are very expensive to see and you are paying for their time, so why not get the most out of it.

    Tania.

    • Francesca
      Mar 07 - 3:46 am

      Dear Tania,
      I have done this in the past but my 2nd computer was broken and I couldn’t figure it out… This is a very helpful thing… THANKS!

  6. Angela
    Mar 05 - 9:46 pm

    So how does a person get in to Dr Klimas’ clinic? Impossible. Do they even have a waiting list for the other Dr now?

    • Cort Johnson
      Mar 06 - 10:27 am

      She needs to clone herself. Every year she has other doctors come and learn what she’s doing. I don’t know if they’re mostly foreign doctors or not, but it would be great if there was a list somewhere of doctors trained by her.

      Simmaron Research Foundation is sponsoring a doctor this year to come in and learn from Dr. Peterson.

      Hopefully when we get the Practitioner Review program complete we’ll be able to find more good doctors.

      • Angela
        Mar 06 - 10:24 pm

        Amen to that. She sure does need to clone herself. It’s sad to read other’s stories and wish we were able to get in to such and such Dr… because there are so few.

    • Francesca
      Mar 07 - 3:48 am

      CAn her office and ask of Dr. Rey is still open. They are both fantasitc but Klimas is the one in the lime light… But Dr. Rey is here attached at the hip side kick

  7. Francesca
    Mar 06 - 10:24 am

    I am very sick at the moment. But Dr. Rey is in Dr. Klimas’ office. I beleive Dr. Rey takes people and they work side by side all the same machines and drugs. I will write soon. Been vomiting and ear inflamation. Francesca

  8. Cathy
    Mar 06 - 2:00 pm

    Good grief Francesca,
    You poor sweet thing, you sure do have a lot going on. Keeping you in my thoughts.
    I have been wanting to see Dr. Klimas also but I live in Pennsylvania and just don’t know how on earth I would be able to do that and then I hear that you are from very far away!!!

    I wanted to comment on your sleep concerns, I have tried the prescriptions medications and honestly if you read the research on these so called sleep medications like ambien and the like: They only increase your fall asleep time by a few minutes and they only keep you asleep maybe 15 or 20 minutes longer!!! The way they “work” is that they are hypnotics so they trick your mind into not realizing that you have NOT been asleep!! That certainly does not sound like restful sleep to me. When I was not sleeping at all they were helpful but in the long run I knew that I was not really sleeping so I got myself off them as soon as possible. So what to do?? Well if your current situation allows ( ask your doctor), I would suggest good old fashion Benadryl. As an antihistamine this drug did not pan out so well because of the fact that it made people so sleepy. As a sleep aid this is were Benadry actually shines. As an added bonus it does not interrupt sleep patters at all. It has worked wonders for me. I hope you will be able to take it and I hope that it helps you like it has helped me. I look forward to seeing more of your video clips and I hope that you are feeling better soon. Take care.

  9. Francesca
    Mar 07 - 3:49 am

    Hi Cathy,
    Even Klimas does not want me to do them… I will wait till I am over the real flu and I will see how I sleep after that.
    Francesca

  10. Francesca
    Mar 07 - 3:54 am

    Cathy, when klimas was accepting patients the appointment was 5 to 6 months out. I then bought tickets from Colorado to Miami, though I was living in Italy! Anyway, Bates in Utah was a year out and other specialist were closing their practice to new people. Klimas allows me to skype her as long as I do all my blood tests correctly and get them to her… She has been great to me… but make an appointment with Dr. Rey down there… It was the best $4000 trip I ever made… airfare, hotel, car, food, klimas and ALL test, tilt table, VO2max… and insurance paid for NOTHING! But she gave me a 50% increase in my life value…

    • Cathy
      Mar 11 - 11:36 am

      Francesca,
      Thanks for the info. I was wondering just how much a visit to Dr. Klimas would be. So about 4,000ish dollars for 50% of your life back, that sounds so worth it to me! So you had insurance at the time and “they” still would not pay for anything???? That just really sucks….
      I have not heard of the other doctor: Dr. Ray but from what you are writing, it seams like that would be the way to go to at least get into the office and be seen. Thank you so much for the heads up. I hope you are feeling better and almost over the flu and I hope you are getting some much needed sweet blissful sleep.

  11. Donna Richburg
    Mar 07 - 9:38 am

    Just a comment on getting into see Dr. Klimas or Dr. Rey . I have called more times than I can count and have been told that no one in the clinic is accepting new patients, and there is no wait list.

    If anyone knows otherwise please let this very sick , very frustrated girl know!

    • Francesca
      Mar 07 - 1:37 pm

      I am sorry… please read what I wrote below to at least get her forms… and lab tests…

  12. Betsy
    Mar 07 - 1:03 pm

    I wonder if she or any of the other specialists have published a list of the tests they order? I know Dr. Teitelbaum has one in his book but from what I’ve been reading on these boards, seems it’s not as extensive as others would be. I asked my doctor for a homocysteine test and she didn’t want to do that even. Maybe if we were armed with a list from the best specialists, some of us who can’t get to one could at least get our doctors to order these so we’d have more data for treatment purposes.

    Hang in there Francesca – you have a great attitude and hope you’re soon in a much better place.

  13. Francesca
    Mar 07 - 1:36 pm

    Betsy, join this group on facebook:
    Hunter Hopkins Center’s ME/CFS/FM Private Chat Room
    Once you have been accepted there… go into the FILE link on the top right. I just uploaded all of Klimas’ forms there plus a sample of the tests she runs. The Natural Killer Cell Test Needs to be done at that specific clinic in Miami. It must be arranged in advance and all clear in advance and the blood can be over nighted for that test. Get the blood drwn late in the day with the federal express hazard bag already. You drop it off at the fed ex place… but you must work it all out. You local doctor will need to order it. No other lab breaks it down the way this lab does. Even Dr. Dan Peterson was shipping his blood to Miami…Francesca

    • Cathy
      Mar 11 - 11:39 am

      Just looked on Facebook and I noticed that the group is closed.

  14. Betsy
    Mar 07 - 3:04 pm

    Thanks Francesca ! Guess its time I signed up for Facebook again. I’m definitely going to see what my doc will order. Interesting about the NK cell test.

  15. Donna Stout
    Mar 07 - 8:57 pm

    I have been reading about those drugs that you are using but heard that if your gallbladder is even slightly diseased they will not be effective. Do you know this to be true?

  16. Francesca
    Mar 08 - 3:27 am

    Betsy,
    I have the real flu right now on top of a major relapse so my writing was not so clear. I will list out again hopefully clearer.
    1) If some one is already on some type of “ME/CFS” drugs it could alter the results of this NKC funtion test.
    2) The test is very expensive but in my opinion is absolutley worth it. Many of the tests marked on that lab form, you own doctor can so I would skip those. The NKC test needs to be Miami! I have had it done in Colorado and Rome and their NKC function tests are a joke compared to this test Klimas gets from her prior University’s lab.
    3) You doctor must write up the request for it, which means, one needs to contact the lab down there ahead of time and get the lab form. The hours and days best to send it in. Confirm in advance there is no school closures for when you want it to arrive. My recommendation is to have it send out on a Tuesday or Wednesday.
    4) You must reach the lab people and check what it anything your insurance will pay and get them the details in advance. Or do like I did, get it paid for in advance with your doctors office on my credit card.
    5) Klimas ex office manager had me down there on a Friday and the lab was closed. So she sent me home with a tube kit. I then set it up with FED EX hazardous shipments label and found which FED EX drop off station I should deliver it directly to. An actual office where the shipments leave from… not pit stops, as the blood needs to be FRESH.
    6) The blood draw needs to be as late in the day as possible and then carried over to FED EX immediately. I already had all the packaging and label done.
    7) The blood was shipped and my results were ready quite a few weeks later like 6 + if I remember correctly.
    8) Why this one test is so IMPORTANT… my family history of CANCER is HIGH! Klimas found I was at 1.78% NKC function which means I had literally NO protection against cancer! I have three sisters, my mom, my dad, my aunt, a cousin child died at 11!
    9) SO beyond our miserable life with ME/CFS, our risks of cancer are HIGH.
    10) After 3 months on Imunovir, my NKC function got up to 11% and at two and a half years it is at 35%!
    11) So I would say from the bottom of my heart, that that test, avoided or push longer away from me my risk of cancer. Because it gave me precious insight into getting proactive. Klimas just told me last week, Francesca… we may just get lucky with you getting ME/CFS because it circumvented cancer coming first and you have a chance to keep it away…. something like that…
    12) This is why I love this woman… my biggest fear in life, she is helping me have a fighting chance to stay away from.

    I hope this helped… its from the bottom of my heart…

    Francesca

  17. Mark
    Mar 08 - 2:58 pm

    My wife was diagnosed with CFS in 1987, I remember it like yesterday, she woke up one day with the flu and it was the flu that never left. Then few years later, diagnosed with FM, allergies, candida and the list went on. Each year, it was out with the old boss (the latest cause) and in with the new boss.

    After years, over a decade of this, I just got fed up and refused to sit back with this dead-end diagnosis. Long story short, because it is a long story, we seen probably over 80+ doctors, I started going to medical research and seminars, spent a small fortune running around the country to visit doctors and trying various study protocols.

    In my experience, I found that lab tests can be inaccurate for some things, and some people don’t do enough testing. I know we did not due to doctors balking about it, insurance and money (many specialty labs were not covered by insurance including research panels for CFS and other things). I got the VISA card out and started a campaign in 2001-2003 to find the cause of this nightmare. I hired various doctors on a consulting basis to review her case and recommend the best tests to run. Some I found on my own through years of research at home. I found one doctor who let me run anything and wrote the scripts (god blesses him) for the lab work and my local doctor (well, the 6th one) ante up too, some of tests and procedures were:

    -CFIDS 25A Rnase-L pathway profiles
    -Hormonal & hypercoagulation panels
    -Cancer tumor maker panels
    -Full panels of Lyme disease and other tick borne diseases via PCR/DNA
    -Full virology panels, bacterial, parasite, autoantibody
    -Tilt table test/POTS
    -Cardiology panels, Echo and more
    -MRI, SPECT, RAIU thyroid scans, Chairi Malformation
    -Mycoplasma panels via Garth Nicolson/Labs
    -GI studies, scoped downtown and uptown.

    There were many more tests, a lot of them— my motto was “Run everything…”, but find the best specialty labs, find the best doctors in that specific area.I learned the basic Lyme disease test we ran many times is actually inaccurate, we found during our new testing she was loaded with Lyme disease . In addition, we found the Borna virus and some elevated levels of the CFS panel; specific markers. I remember a doctor telling me if you look hard enough, you will find things in your body that shouldn’t be there that may or may not cause a problem.

    There’s also another side of this I want to share to, I remember doctor after doctor telling us, my wife is suffering from depression. At the time being married to her since 1981, I would know if she was depressed or not— I mean we live together, if you have a toothache all the time, you’re going to be depressed, but something unknown that caused fatigue, muscle/joint paint, headaches, dizziness and a whole a laundry list of symptoms– most doctors would be just confused, perplexed and not know what to do.

    Well, in the end, around 2004-2005, she started having serious psychiatric problems and many hospitalizations. It was horrible. The final primary diagnosis was manic (bipolar) depression with secondary diagnosis Lyme disease and the third CFS/FM.

    Today, she is about 90% recovered with some minor muscle/joint pain; her treatment is meds for manic depression (she also had 42 shock treatments in-patient and out-patient). She was pretty far gone in the hospital and the 2nd shock treatment she did well on. I know what your thinking, shock treatment! It was either shock therapy or move her in a nursing home, it was that bad.

    To this day, I don’t know which came first, the chicken or the egg; some doctors believe the Lyme disease crossover to the blood-brain barrier and invoked the manic depression, others believe she had a low-level form of dystonia depression that worsens over time and can be undetectable.

    Today, my wife and I learned to count our blessings and realize there are many good doctors out there doing excellent work.

    We lucked out, so far so good…..keep on fighting people.

    Mark

    • Cort Johnson
      Mar 08 - 4:17 pm

      What an amazing story, Mark and thanks for sharing it. However it happened it’s great that she’s recovered so well. It’s a miracle of modern medicine, really. I don’t suppose that it matters what the original cause is – a slowing developing depression (caused by???) or an infection but it’s interesting that they’re finding that antidepressants have antiinflammatory effects as well.

      I kind of think of, in my laymen’s way, of transcranial magnetic stimulation as a milder form of ECT; both are changing I believe brain activity patterns. There’s the also the common use of anticonvulsants in ME/CFS and bipolar depression such as neurontin……the brain is a mysterious place and I suppose it will remain that way for a long time.

    • Francesca
      Mar 09 - 3:04 pm

      Thanks Mark… anything you think was the magic bullet… I have become stable from the real flu as of yesterday, not perfect yet but I jumped right back in,.,.. LDN started tonight… let’s hope there no vomiting this time…
      Francesca

      • Cecilia
        Mar 15 - 3:53 pm

        Gentile Francesca,
        ho letto la sua esperienza con la dott.Klimas e vorrei avere notizie al
        riguardo. Ho mio figlio molto malato e anche noi siamo andati negli USA
        ma probabilmente abbiamo scelto il medico sbagliato.
        Mio figlio non puo’ uscire di casa, ha dovuto interrompere gli studi universitari, non ha più amici, malato di CFS, dopo un viaggio, da otto
        anni. La prego di rispondermi in privato per darmi utili informazioni,
        la ringrazio, cordiali saluti
        Cecilia

  18. ellen
    Mar 09 - 11:03 am

    I want to ask you for your help and support in Florida as we are working to grow our network. We need proactive people like you all. On facebook/FLFMCPN I am working towards statewide support networks.

  19. ellen
    Mar 09 - 11:06 am

    I want to ask you for your help and support in Florida as we are working to grow our network. We need proactive people like you all. On facebook/FLFMCPN I am working towards statewide support networks. I am also interested in the specifics of the mentioned testings and what they are looking for. Anyway to get that in easy to understand form to bring to local doctors?

    • Francesca
      Mar 09 - 3:05 pm

      Ellen, put the link here so we can see what you are talking about please. Francesca

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