((((((( Elsa And Tansy )))))))

Discussion in 'Fibromyalgia Main Forum' started by orachel, Nov 12, 2005.

  1. orachel

    orachel New Member

    Hi There! I saw both of your answers in the "deconditioning" post, and I realized that you felt the same way I do based on my research, but your knowledge goes much much further....

    If I might ask a question of you both...Tansy, I don't know about you, but Elsa, I know that you're not a patient of the FFC.

    My husband is very resistant to me seeking treatment there (simply due to the cost...finances stressed to the breaking point now! LOL)....not that he doesn't think my health is worth it...he just cannot fathom that the hormonal support and viral diagnostics are not available elsewhere.

    Now elsa...how on earth are you guys going about getting these types of treatment if not through a center such as FFC? How do you determine levels of hormones that need support, and the dormant viruses present that need treatment, as well as general body systems that need immune support?

    I'm very open to any suggestions. I KNOW that the multifaced approach of the FFC is essential for me to attain any level of wellness.

    As it is, my body is simply treading water, and that's with mucho mucho poisons swallowed daily! I'm a walking pharmacy, and I'm still feeling wretched.

    I will eventually put my tootsies down and insist on going to the FFC, but out of curiousity, how have you guys attained a level of integrative care without them?

    Interested in any ideas you may have. I've recently met some decent general docs and physiatrists who are open to any treatment options I'd like to explore (whahoo! That wasn't easy to find!)...but now what?

    Thanks so much Tansy...and Elsa, as always hon...I really appreciate your help!!!

    Rachel
  2. tandy

    tandy New Member

    back up top for all yous.

    :)
  3. tansy

    tansy New Member

    I live in the UK and there aren't any here.

    I most self treat, based on lots of research which really challenged my little grey cells. When I started out my cognitive issues had reached an all time low, so it was very hard going and confusing. Slowly over time things made more sense.

    I did get my borreliosis/lyme confirmed and a few other infections through a doctor I self funded; we discuss Tx for these and he's happy for me to continue what I am doing. He learns a lot from his patients so I know he will take note when we report upon what has helped, and when he thinks it appropiate will pass on this feedback to his other patients.

    At times I had to resort to trial and error, some times what I thought would help backfired on me, but as often happens this turned out to be a good thing because it gave me a better idea as to what I was up against. Whenever things went worng I'd go back to basics, the last time I did that was the most successful. I had learned a lot more by then, so less guesswork was needed.

    I had to tread very carefully hormones wise. After one month of HRT (low dose), then natural progesterone which made me a lot worse, I aimed for rebalancing. After only minimal improvements on cortef, and alternatives for my adrenals and thryoid, I decided to aim for treating what was affecting them and for me personally this was the best way to go.

    love, Tansy
  4. elsa

    elsa New Member

    Transformers blowing have a real bad effect on people's power/electrical equipment!

    It gave me a chance to go over alot of my notes before writing you.

    I'm going to start with the hormones first. Then we can go from there.

    1. Firstly ... Getting your blood work done ... I learned two days ago ... during more research, LOL ... that the top three diagnostic labs in the Nation are now allowing patients to come directly to them for tests. Quest Labs (which is my laboratory as well as the FFC's) is one of these labs. Google their website for more information, .. official name is Quest Diagnostics ...

    In general, an individuals can walk into any one of their labs (all over the nation ... they are the nation's largest)and request any test(s). They pull the blood, run the tests and send you, not a doctor, the results.

    Put FFC in the search above for those patient's that have listed their tests, or ... if you'd like, I can post to you exactly what hormone/endocrine tests were run on me.


    2. How to find a doctor who knows how to interpret test results and prescribe compounded bio-identical hormones.

    Some suggestions ... This is what I did ... I googled the American Society of Anti Aging Medicine. They have doctors listed by state. There were several from my city so I printed the list and then started investigating them. Found one whose reputation my PCP was familiar with so I went with him.

    It is my understanding that the practice of preventative, anti aging hormone balance and balancing CFS/FM hormones are very similar. They both run the intricate, correct tests (IE correct thyroid) and both their goals are to bring hormones to the OPTIMAL level not just the "you don't have a bad disease" level.

    I have a list that contains most of the hormone optimal levels that you would probably be dealing with ... I can post it to you if you'd like.

    Please, please use a compounding pharmacy. (With your healthcare wellness background I probably didn't need to beg that did I?! LOL)

    If you don't have a compounding pharmacy already you can google these too and get a list for your area then follow the investigative trail for the best one.

    Mine has been in practice for over 25 yrs ... does alot of work ... and specializes in bio-id Hormone Treatment. They also have available IV Infusion Therapy. ( I haven't used this service yet, but filed it as a future resource.) I'll bet you can locate one as thorough as this one since you live in a large area.

    Look up Power Surge ... it is a website for women ... mainly menopause, but you can get a ton of info from them concerning bio-id hormones and compounding pharms.. If you look up the section of guest speakers (I think that's the title), you'll find several transcripts from a Compounding Pharmacist that is supposedly all world.

    He has his own business ... I haven't looked it up yet, but I gathered I could go to him for hormone help if needed. Sorry I can't remember his name for you .. I only marked in my notes that he's a good resource and how to find him. You may want to work with him some.

    Once you start getting a handle on the hormones, you can then test for the viral/mycoplasm/lyme, etc pathogens. The reason I suggested starting with hormones first is you see results faster, it's less stressful for you physically and you can start to feel better, or see some movement in the right direction, almost immediately.

    You've been feeling so bad for so long I thought it would be easier on your body all the way around this way. Get some good days under your belt before you take on the pathogens and die off.

    The doctors you mentioned who were willing to help you with any new treatments would work great with the pathogen treatments. You take to them the Quest test results and request (with their in-put of course) whatever antiviral needed to get started.

    I started with valtrex first and then famvir and then the immune boosters/Transfer Factors. It was time consuming ... produced a small herx with the TF's and then life got better.

    I am a weannie ... I couldn't do what those brave FFC patients are doing ... blasting everything all at once! My tests only showed EBV so I didn't have it as bad as some, but I'm still glad I did one "cornerstone" of CFS/FM at a time.

    The nutritional aspect was fairly easy for me. We all generally have mitochondria disfunction ... and we all have magnesium problems ..., etc.. I treated for those with a ND watching over my self treat program ... kept me on track.

    I have always been interested in amino acid therapy ... educated myself first and then consulted with an ND who specializes in AA's. Brain neurotransmitter levels can be tested ... once you arrange that, then you can proceed with treatment if you wish.

    With as bad as you are feeling though ... and if I were your "boss" ... I'd make sure you were on the "staples" supplement wise ... add l-tyrosine powder and acetyl-l-carnitine powder (if they don't interfer with any meds you are on), arrange for your own (no doctor as middleman) hormone panel, start HTR and after a few weeks ... maybe 1-2 mths ... go back for your pathogen panel.

    I really would not recommend having your current doctors try to interpret you hormone test results and then rx for you. You need someone who has gone through either anti-aging HRT training or who has had CFS/FM HRT training. I'm afraid otherwise you will only be spending more money on ineffective treatment.

    As for insurance reimbursement ... The lab work was covered asap, no problem. Consults with PCP of course are covered. I chose not to file for reimbursement with the compounded HRT. Insurance companies are sometimes nasty about this in regards to future coverage.

    For some reason, they flag pituitary gland HRT ... which you more then likely will have addressed ... once they pay for HRT, they will mark it for pre-existing conditions.

    Same for the other hormones. That's alot of pre-existing conditions I would get flagged with (based on the 6 different hormones I'm taking now) for balancing my endocrine system.

    It's a personal choice and whichever pharm you go with will provide the paperwork for you.

    Cost of HRT not too bad .... but the GH. I use nordiflex and I'd pull the gold out of my teeth to pay for it if need be ... it's made that much of a difference.

    The rest are reasonably rated ... I think the next in line cost wise is progesterone at 40.00 lasting two months.

    The doctor fees ... Anti-aging, may or may not be covered with your plan. If it isn't you can do reimbursement ... probably be 60-80%.

    I think that covers it. I would love it if your sleep specialist would talk more about your results. They could be treating your deep wave right now and you'd be feeling a lot less pain. They're wasting time,LOL.

    ... sometimes it takes we fibro-heads a while before we find a sleep med that works for us ... man, tell them to get going!! Xyrem is OK for REM problems ... I stand corrected ... so there's lunesta and xyrem you can try. Fixing the sleep made a HUGH difference in my life.

    OK ... now I am really done ... hee hee ... post back if you have any questions. Tansy was right about this being tough to figure out when you are so sick ... Hopefully I was able to cut out some of the hit or miss research and give you a path to head down.

    Take care,

    Elsa
  5. elsa

    elsa New Member

    Bumping ....

    By the time I replied, she posted a week off due to hubby taking laptop on trip .... Wanted to move to top so she might get a chance to read ...

    Thanks,

    Elsa