What I learned participating in Georgetown Study in D.C.

Discussion in 'Fibromyalgia Main Forum' started by marti_zavala, May 18, 2008.

  1. marti_zavala

    marti_zavala Member

    Disclaimer: these are my impressions, I may have misunderstood something or gotten it wrong. So, if you disagree or are unhappy about something, errors are mine - please do not write a nasty email to Dr. Baraniuk or Dr. Ravindran. This information does not come from the researchers - it comes from my recollection and I have brain fog. Remember, I was off medication and worn out from trip. Text in parenthesis is where I am fuzzy.

    Georgetown Study - Abnormal Proteins in Cerebral Spinal Fluid, Wash. D.C.

    Dr. James Baraniuk is lead investigator. He also runs a CFS clinic in D.C. He is an allergist, immunologist and a rheumatologist. Dr. Murugan Ravindran is the secondary researcher and he is a neurologist. Both men display true commitment to our illness, compassion, intelligence, integrity. Very aware of our limitations. Very committed to learning from us. - Dr. Baraniuk instructs staff that we are not fragile but we have serious health issues that differentiate us from other populations.

    2nd study to follow-up on abnormal proteins found in spinal fluid of CFS vs normals and abnormally high CSF pressure found during first study. Normal is 8-14 (units - cm?) they are using 20 as abnormal. Some people feel relief after spinal tap due to relief of pressure from small amount of fluid they remove. The percentage for spinal tap headaches was higher than normals but they feel it was the protocol so they made changes to the protocol and the previous four people plus myself did not get a headache.

    They feel that CFS is truly “all in your head”. Basically, it is a neurological illness and the source of nerves is brain and spinal cord so it really is “all in your head”.
    Funded by NIH and CDC
    Reseach study done in special wing separate from normal hospital population.
    Primary goal is identify proteins, then identify source of proteins. Further down would be a biomarker test then perhaps pharmaceutical solution.

    They have found an allergy component in CFS - percentage is higher than in normals.
    Dr. B. stressed that we can have other illnesses so don’t disregard everything as “just my CFS” - “People with CFS can have a broken leg”
    Discussed allergies, allergy testing, false positives, (a negative is true, positive 25-50% possibility false positive due to fallibility of tests)
    Diet-eat moderate, well-balanced diet, good fiber intake, mixed colored veggies.
    Low stomach acid can lead to B12 deficiency.
    Heart-keep diary of arrythmias. Banging in chest common in CFS. Increases adrenaline so pure anti-anxiety med logical to slow down (overactive CNS). Suggests low dose Klonipin.

    My goal to participate was to get the testing as I haven’t had a lot of testing. I already have disability but would someone who needs documentation for disability benefit from participating in study: Answer, No. Dr. B. doesn’t want people to come for testing as it is pretty general and should and could be done locally. For disability, they are looking at the history over 12 months if other treatments are ineffective and that you are unable to return to expected level of activity. The results of these tests wouldn’t show that history.

    Most of the rest was personal in terms of issues I am dealing with or concerned for future: Pancreatitis, family history of cirrhosis, my chances for cancer. Due to balance issues, I am concerned about PSP. Lymph nodes showed scarring. We discussed thyroid (I should be on it even though levels are normal based on mainstream testing).

    We discussed my activity levels and my concerns that I would be bedridden within 2-5 years based on my illness progression and that I felt better somewhat horizontal and inactive but that I was concerned about losing muscle tone. Long term vs. Short Term - he agreed that I need to keep moving in order not to spiral down. Movement helps to regulate sympathetic nervous system, heart rate, blood pressure, (something about it being good for mitochondria and oxidative stress but a little fuzzy here)

    While he did say exercise, he does not mean exertion and certainly not 85% of heart rate but he did mention aerobic (which I questioned and brought up theory of cortisol dropping in ME and he had not heard of that - I wish I knew where I got that). He said movement, 1 minute, and ramping up as possible within MY limits.
    He was a proponent of CBT which rankled me quite a bit but he said that that was already what I had been doing all along - modifying my lifestyle to fit my limitations, workarounds, alternate solutions. We discussed this at length and I finally had to accept what he was saying at face value and drop my sensitivity. He certainly did not use CBT as THE treatment but as a tool to help us deal with future eventualities while we experience limitations from our illness.

    Dr. B. said our population has a great sensitivity to neuro toxic drugs. Anti-depressants were not right chemistry for most of us but if we have to use them, use smaller doses.

    He recommended (for me personally not our population in general) 0.5mg of Klonipin morning and night - to help reduce anxiety (I do not have issues with mental anxiety - this was like CNS anxiety) and either Flexeril for FM pain and for sleep OR Trazadone for sleep. I am to follow up with a neurologist for undiagnosed issues.

    Dr. B. took my history after a long day and he stayed until we were done - it took three hours and included questions about chemical exposure, head injuries, family history, illness onset, illness progression. Nothing surprised him - he connected all the dots for me. Even connected some dots for my sister and her issues. I was so impressed with his dedication. Dr. R. was reverent with my spinal fluid and he thanked me for participating as he appreciated the sacrifice I made to be there. They do not take participation lightly and I was NOT treated like a number. I really felt that they dropped everything for me to be there.

    What I learned about me while there was mostly about my orthostatic intolerance. Saline IV’s kept me functioning well while there and for a day or so after I got home so I DID NOT CRASH! Truly amazing. I spoke to Dr. R. about it later and he said a patient who is/was a nurse has/had a permanent IV stent (sp?) and when she would feel like she was going to crash, she would administer a bag of saline. I have now started on sodium/potassium tablets and feel difference. I intend to try Dr. Cheney’s Sea Salt/No Salt mix.

    The hospital bed allowed me to get vertical slowly after waking as opposed to standing vertically when I get out of bed. This seemed to eliminate a morning crash. Cognitively better earlier than usual. Trying to duplicate this now with pillows, not very successful yet.

    While I traveled extensively while working, I realized what a difference it makes to travel with this illness. Changes for me in future: no one way’s longer than 2 hours. Window seat, sky cap assistance, smaller bag, check bag, energy snacks, request wheelchair assistance, take cane, disposable heating pads with adhesive for back pain. Pain meds on person not in purse or luggage, flexing feet/legs during flight. I realized that my home has become a cocoon and I do not adjust well to normal light, sound, temperature levels. The hospital staff did their best to accommodate my needs. Refreshing.

    Gee, it seemed that there was so much more but can’t think of anything else. Most of the life-changing stuff was personal and based on my history and my issues. Connecting the dots was great for my understanding and was priceless to me. I am very glad that I participated. I am considering traveling to DC once a year to follow up with Dr. Baraniuk.

    Again, any errors are mine alone.


  2. findmind

    findmind New Member

    What an amazing report, Marti!

    I cannot believe you were able to remember all this, it is truly remarkable, and I thank you for your participation and telling us of your experience.

    They sound really sincere and dedicated to us; such a rarity other than all the better known clinicians/researchers.

    How long is the study? Do they have a lot of patients coming in for the testing?

    So glad you got info that clarified some things for you; we should all be so lucky.

    Wishing you the best,
  3. Mikie

    Mikie Moderator

    It's very interesting to read this. I appreciate your taking the time and energy to post your experience.

    Love, Mikie
  4. lpn9999

    lpn9999 New Member

    That's fascinating! Here's a link to a summary of some of his 2005 research.


    "BACKGROUND: Chronic Fatigue Syndrome (CFS), Persian Gulf War Illness (PGI), and fibromyalgia are overlapping symptom complexes without objective markers or known pathophysiology. Neurological dysfunction is common. We assessed cerebrospinal fluid to find proteins that were differentially expressed in this CFS-spectrum of illnesses compared to control subjects.

    CONCLUSION: This pilot study detected an identical set of central nervous system, innate immune and amyloidogenic proteins in cerebrospinal fluids from two independent cohorts of subjects with overlapping CFS, PGI and fibromyalgia. Although syndrome names and definitions were different, the proteome and presumed pathological mechanism(s) may be shared."

    Also, a link to another study with similar findings: http://www.ncbi.nlm.nih.gov/pubmed/15642984?ordinalpos=1&itool=EntrezSystem2.PEntrez.Pubmed.Pubmed_ResultsPanel.Pubmed_RVDocSum

    "The results support two hypotheses: that some CFS patients have a neurological abnormality that may contribute to the clinical picture of the illness and that immune dysregulation within the central nervous system may be involved in this process."

    - Lisa
  5. jyl

    jyl Member

    For participating in the study and reporting the info to us in such great detail!

  6. Tawra

    Tawra New Member

    I swear it's "in my head".

    Why is it that loud noise makes me crash?

    why is it that having the kids talking, the radio on and car windows down makes me crash?

    Why is it that talking on the phone makes me crash?

    Why is it that getting very happy or very sad makes me crash?

    Why is it working on the computer makes me crash?

    Why is it I can't "think straight?"

    Why is it I get my words mixed up all the time?

    I KNOW there is something wrong in my brain. I've had this DD for 20 years now and there is definatly (sp) something wrong "in our heads". :)


  7. labrat

    labrat New Member

    Thank you for posting about your experience participating in the Georgetown study. I am scheduled to take part in this study in early June so your information is appreciated.

  8. marti_zavala

    marti_zavala Member

    Hi findmind

    The study should last another year and a half. The goal was 50 CFS, 50 CFS from Dr. Henderson and 50 Normal controls but I think they have changed this to 66 CFS and 66 normals. Little fuzzy there.

    They seem to have a steady stream of people. They usually keep the number per week to 2 or 3. They don't book someone if they have a full week. They don't want to miss a key clue by rushing or hurrying to get people through.

    They are very thorough.

    Also, they especially appreciate out of towners since they don't want to skew the results by having all New Englanders participate.

    if you have any questions, I am at yahoo. I would be happy to answer any questions.
  9. mezombie

    mezombie Member

    Could you perhaps post this on "that other site"?
  10. MsE

    MsE New Member

    The last few days have been miserable and I have (again) found myself second-guessing: Do I really have CFS? Maybe I'm just lazy. If I did more, would I get my energy back? That kind of stuff.

    Reading your post made tears come to my eyes because of hearing there are docs out there who really validate what is going on with us and are trying to do something about it. I've often thought there was a neurological component to this. I've thought that before articles began to appear on the subject. A gut reaction, I guess.

    Anyway, thank you for the post. MsE
  11. Lichu3

    Lichu3 New Member

    And thanks for volunteering for the study for all of us.
  12. gapsych

    gapsych New Member

    Thank you so much for sharing your story about being a participant in the Georgetown University research.

    Unfortunately, I did not qualify for the study as I have depression, resolved with AD. I did get to talk with Dr. R.(?) on the phone and he actually gave me some good advice. The protocal of the study was fascinating.

    He mentioned that some subjects feel immediately better after they get the spinal tap, something to do with decreasing the pressure of the spinal fluid.

    Did this happen to you? How long were you off of medications?

    Did he say anything about getting periodic IV's to help us?

    I do not know how you wrote such a concise, readable post.

    Kudos, to you for participation in the study. Maybe they will find some answers to unravel the mysteries of our disease.


  13. marti_zavala

    marti_zavala Member

    "He mentioned that some subjects feel immediately better after they get the spinal tap, something to do with decreasing the pressure of the spinal fluid."

    Did this happen to you? How long were you off of medications?

    ***Well, I didn't have the relief of headaches (I don't really have much of a headache, just pressure). And I do feel that I had a relief of pressure for a couple of days. I was off medication (not all, thankfully) for 3 days beforehand BUT I had recently gotten off all my supplements for several months before. Also, I had just filled my thyroid perscription and I was itching to start on it. That was the hardest - I knew I would get some relief from fatigue from thyroid. So, I used that as my reward.

    I do think it is helpful to get off everything once in a while and start over. I lost 6-9 months due to some new supplements and I was too brain fogged to figure it out. We think we will regress but I really don't think that is possible if we just get off everything then get back on within a month or two. Anyway, I am cognitive now and starting supplements very slowly so I can track what is doing what. Obviously, this doesn't mean certain medications, like anti-seizure or stuff you have to wean off of, I mean stuff like supplements, vitamins.

    But I didn't need as much pain medication that day and I didn't crash afterward. I attribute less pain to spinal tap and no crash, I attribute it more to the saline.

    My pressure was high but not abnormal - I was at 16 so that may be why I didn't feel such a difference. Other woman who went before I did stated she felt a big difference and her pressure was over 20.

    "Did he say anything about getting periodic IV's to help us?"

    As I said, he mentioned it re: that nurse. But in mentioning this to another list, several people have standing orders to get salines whenever they want. I am going to attempt to discuss this with my Doc for a big event - like a college visit for my son. Staying hydrated is part of this too.

    "I do not know how you wrote such a concise, readable post. "

    *** I took lots of notes - I didnt want to miss a thing! I filled out the 59 page questionnaire before I left as I knew I would not be cognitive while there - that freed me up to write notes. I wish that I would have done a better job writing my history out before I had gone up there. Just ran out of time. I would have included head injuries, chemical exposures, etc which they asked about.

    "Kudos, to you for participation in the study. Maybe they will find some answers to unravel the mysteries of our disease."

    *** Thanks GA for being open to participating and trying to participate. I am very hopeful and there are a few other studies that are focusing on the brain and they are starting to see a little overlap. I will post that on another thread due to the interest here on this study.

    *** Thank you everyone for your kind words. It really took me by surprise. I was posting this report as my duty to our community and I was not expecting much response. I hope this info will help someone.

  14. moreinfoplease

    moreinfoplease New Member

    I want to add my thanks to you for sharing your account. I know how difficult it is to gather, synthesize, organize that much info together, especially with a illness that causes brain fog. I very much appreciate it. The fact that you say you did not expect thanks, and saw it as a duty to the community, is just very sweet.
  15. monicaz49

    monicaz49 New Member

    your personal efforts on traveling and participating in this study is appreciated by our community. Thank you! Its great to at least hear that it was a pleasant overall experience considering.
    I am still considering participating but again am having a tough time swallowing the length of air travel.
    I also want to clarify as to whether or not participants receive results of these proteins found in their fluid or not. Even if they have to wait for the study to wrap up.
  16. tansy

    tansy New Member

    Many researchers and specialists refer to ME/CFS as a multi system illness; but there's no doubting the CNS involvement.

    Dr Kerr's research is helping to tie research findings together; and it proves we're neither imagining our Sx or faking them for secondary gain.

    I'm pleased to see the warning about SRRIs; I get very concerned when I see these being pushed when so many with ME/CFS cannot tolerate them. Insisting adverse effects are due to not staying on them long enough is irresposible.

    Even before Cheney's comments specialists were wary of SRRIs. If it was thought tricyclics could help they were Rx in small doses ie in lower doses than needed to treat depression.

    Funny thing happened today. Glaxo's CEO, who had been invited to talk about a new avian flu vaccine in a BBC radio interview today, walked out when challenged on Seroxat.

    I do recognise that patients can also have clinical depression and genuinely need ADs; but patients should not be given them as a matter of course in ME/CFS.

    tc, Tansy
    [This Message was Edited on 05/19/2008]
  17. marti_zavala

    marti_zavala Member

    Monica -
    The participants do not receive the results of the genetic tests nor the presence of abnormal proteins.

    They will receive the spinal pressure reading, and (I think also - not 100% Certain - CSF Glucose, CSF Total protein, CSF Cell count , CSF Albumin, CSF IgG (antibody), and quantitative amino acids in CSF.)

    Then participants will also get the following:

    Thyroid Stimulating Hormone, Sedimentation rate (for infection), Rheumatoid factor, Anti nuclear antibodies, Pregnancy testing, HIV testing (as per protocol, we do these tests in everyone).

    Other tests are : Complete blood tests (cell count, differential count), Serum Albumin, Serum Glucose, Serum Total protein, Ceruloplasmin serum, IgG serum, Complete metabolic panel, Lipid panel,Basic metabolic panel, amino acid quantitative in serum, Urine creatinine tests."

    Most of these tests could and should be done by a doc locally but we all know that this is easier said than done.

    I will share the list when I get my results - should be soon now.
  18. marti_zavala

    marti_zavala Member

    Dr. Baraniuk really stressed small doses of AD's. He even mentioned pediatric doses.

    and Yes, putting the blame on the patient that it is not working because they are not giving it long enough is shameful.

  19. mbofov

    mbofov Active Member

    Thanks for your very thorough, interesting and informative post. I know we are all very grateful for the time and effort it took you to put it together, no mean feat!

  20. Timaca

    Timaca New Member

    Thanks for your report. How did you find the lumbar puncture and recovery? How long were you at the clinic?


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