Elsa - Can you help?

Discussion in 'Fibromyalgia Main Forum' started by Manwithfibro, Oct 11, 2005.

  1. Manwithfibro

    Manwithfibro New Member

    Just curious what your thoughts are on the growth horomones and hormone levels that you mentioned.


    Suffering terribly
    TIM
  2. elsa

    elsa New Member

    I'd love to help. I'll probably end up telling you more then you ever wanted to know.

    After a hugh amount of research and help from this board I am dead certain about a few things where these illnesses are concerned.

    We have sleep disorders, some type of infection, we're in pain and our endocrine system ... the HPA axis... get's trashed.

    Like so many other areas, our hormone blood tests will probably come back either normal, or close to. You need to find either an Integrated MD, an Anti-Aging specialist or a very, very up to date doctor where CFS/FM is concerned.

    It being a given that our adrenal gland goes to heck in a hand cart ... and it being considered the "master gland", it stands to reason that ... like dominoes ... the rest of our hormones levels go to heck right along with the adrenal.

    It also being a given that we don't sleep, or don't make it into the restorive sleep stages, that we also don't produce GH ... or not nearly enough GH.

    Recent studies (Dr. Bennett, I believe) have proven that we also do not produce GH after exercise like the rest of the world.

    Therefore, we can't help but be deficient in GH. Without GH, our liver cannot produce insulin-like growth factor-1. Without that, we cannot repair.

    Normal people get normal tears and strains of muscle tissue in the course of living life. But, being normal, they produce the amounts of GH needed during their sleep to eventually be converted to IGF-1. With that conversion, the body repairs the tears and damage on a daily basis.

    Being deficient in GH we cannot repair the damage done day in and day out. Muscle biopsies have shown a grotesque amount of microscopic tears that go unhealed leading to big time damage and big time unrelenting pain.

    The most susceptible areas for damage are the sites where tendon and ligaments attach to the bone. They can only take so much daily damage with no repair before some serious pain kicks in.

    Another malfunctional gland is the thyroid. We will very often have hypothyroidism (low thyroid).

    The problem lies most likely in a failure to adequately convert T4 into T3, causing alot of our symptoms.

    If you would like a more clear explaination google Wilson's Syndrome. You'll see yourself staring back at you from the website. Treatment needs to be bio-identical, not synthetic... And not necessarily exactly following the treatment suggested on the Wilson's Syndrome website.

    The pituitary gland ... part of the HPA axis
    is also referred to as the "master gland". It is responsible for production of ACTH ... a hormone that stimulates the production of steroids in the adrenal cortex... Aldosterone, cortisone and DHEA.

    This leads to the disfunction of the hypothalamus that is responsible for a number of things including sleep cycles.

    Testosterone, estogen, cortisol, pregnenelone, progesterone, etc need to be addressed because the top of the ladder glands pituitary to adrenal to hypothalamus fell down on the job taking all the hormones with them.

    If you listed all of your symptoms and daily health struggles you will be able to trace most of them back to a malfunctioning HPA axis and subsequent malfunctioning hormone production.

    Recalling the areas I am dead certain about (infection, sleep disorder, pain and skewered HPA axis) my suggestion for best possible HPA axis treatment is through the FFC centers.

    I am not a FFC patient, but my sister is. She does not have CFS/FM, but she does have all kinds of hormonal imbalances. The FFC centers have a "hormone treatment package".

    For 299.00, she received two, thirty minute consults, had an initial physical exam and review of a 9 page questionaire. The "package" tests the traditional hormone levels plus thyroid function.

    You can have all the same hormone levels checked that the CFS/FM patients do by request and not have to go through the entire CFS/FM patient protocol.

    I would have been first in line for this if I had not already found an excellent integrated MD to treat me exactly this same way.

    To avoid insurance balking at paying for my GH treatment I had a sleep study done first. This documented the lack of REM sleep and impaired deep wave sleep, both of which are healing phases of sleep and necessary for GH production.

    Following that up with blood tests and physican diagnosed GH deficiency gave my insurance company no choice in paying for the majority of GH injections.

    I'm sharing this because these injections are very expensive and they have become a fad, fountain of youth treatment for individuals that are 200 years old, but want to be 20 something again.

    I am not a "new ager", but to truly address the hormone imbalances, you need to treat them with bio-identical, compounded hormone therapy. Finding an MD able to go this route takes some investigation.

    I am in early remission. I am functioning at a much higher level then I was a year ago but I am not "there" yet.

    I suggest some serious medications to get you through the day, functioning at the level needed to take care of your family and obligations while undergoing your hormone treatment.

    I take tramadol and 800 mgs ibuprofen every six hours. I have, but don't use much, flexeril to break up the muscle spasms common in over doing it.

    I have an rx for provigil that I have taken for almost two years to combat excessive daytime sleepiness. I recently added adderal to switch off with provigil. Keeps both medications effective for me with no tolerance build up.

    I have lunesta 2 mgs (that I sometimes break in half) in order to get the proper sleep.

    These are holding me together until I can bring my HPA axis
    function back up to speed.

    Many of my symptoms will resolve when I accomplish this. Have in fact improved already.

    I'm not foolish enough to think I'll be "cured". I will have to take maintainance doses of some hormones probably forever. They will all have to be checked periodically for proper functioning for the rest of my life.

    I will probably also have my "maintainance rx'es" for the rest of my life too, but not have to rely on them as much nor as often.

    Who cares ... this is quality of life I talking about. CFS/FM is not going to kill me. Been there, done that and survived beautifully on the backside.

    Where this illness(es) is concerned, I'm fixing what I can and going around what I can't, getting on with the business of living my life they way I see fit ...

    I apologize for making this response so long. I hope I haven't overstepped my bounds.

    I have been waiting for the chance to share what I have learned, but didn't want to appear all knowing and pushy. We all have to treat these illnesses in a manner that feels right to us individually.

    A member here helped me get going on the hormone issue. He no longer posts as he has greatly improved. His last post I believe was where to purchase perscribed GH at a good price. LOL

    His name is LEE and I think user name was LEAU. You can try and pull up his posts. He has made it back into the weight room, and mountain/rock climbing after being taken out by CFS. He was a no nonsense kinda guy and got after getting his life back. I'm hoping to be able to pass it on.

    I hope this helps you. I can probably answer many questions you might have regarding hormone treatment for CFS/FM.

    Take care,

    Elsa


    P.S. Would love to hear about your family sometime. Mine is a continuing force behind my desire to gain remission from these insidious illnesses.





  3. Manwithfibro

    Manwithfibro New Member

    FFC center?

    What has caused so much hormone disregulation? Pesticides?

    You mentioned infection...what kind? Brain?

    Thanks alot for your help. I am happy you feel so much better. You are right on when you say "where muscles and ligaments attach". That is my WORST area.

    Any idea of a good doctor here in Southern CA?

    Thanks
  4. Rosiebud

    Rosiebud New Member

    putting this in my profile so I can read it again later.

    Very interesting Elsa, thanks.

    Tim, hope you can get some medication etc sorted out soon.

    love
    Rosie
  5. elsa

    elsa New Member

    The simplest route would be the FFC center. They already know everything there is know about the HPA axis dysfunction as it relates to CFS/FM. Also, they only treat with bio-identical hormones, so making sure you get that side of the treatment is not an issue.

    As I mentioned, you don't have to go the entire CFS/FM patient program to be treated for hormone imbalances at the FFC, but you certainly can if you want to. I don't know the costs involved in that program, but you can put it in the search here and all kinds of stuff will come up.

    It was easier for me to manage my treatment plan if I broke it down into the four segments and treat each accordingly. You may want to treat the hormones first and see where you are after that.

    I don't know what kind of maintainance medications you are on or if you have a doctor helping you with this area, but I know the FFC doctors don't bat an eye at rx'ing what you need to stablize you while working on the HPA axis. That has got to be a nice feeling.... having MD's not afraid to do what it takes to get you functioning.

    As far as the infection cornerstone goes ... many have virus' upregulated, or reactivated. My only issue was Epstein Barr Virus that many, many others here also deal with. There are other virus type infections that can also occur, but EBV is my only culprit.

    My PCP started me on anti-virals as soon as he diagnosed me. Valtrex for 6 months, then swithched to famvir for another 6 months. After that, we went the natural route with Transfer Factors, Whey protein shakes and Colostrum.

    All this was probably like hiring a cannon to kill a gnat, but we didn't want to take any chances.

    My EBV levels are where they need to be and I now just take supplements to keep the immune system strong.

    The infections are a hall mark of CFS. I don't know if you have this as well. I have both CFS and fibro., but many people have one or the other. It is not a requirement to have both.

    After treating with the anti-virals, I no longer have that flu feeling where I'd swear on a stack of bibles that my temp must be around 103 degrees, sore throat, weak as a new born kitten, etc. That is a strong indicator of my remission.

    As to what causes the HPA axis to fall apart is anyone's guess. Find the cause of this and you have found the cause of CFS/FM. The messed up hormone system in patients with CFS and fibro is a symptom of the illnesses or in other words ... it is in direct response to CFS/FM. Why? Don't know.

    It is a hugh chunk of the illness, yet most doctors are not up on how to treat this. Traditional blood tests will come back normal for thyroid function even when the majority of us will have every one of the hypothyroid symptoms. The medical community as a whole has a long way to go in establishing a base line treatment plan.

    I have been very lucky. From the start I have been treated with doctors who were cutting edge in the management of CFS/FM.

    My suggestion to start with the FFC is just that. If you have in mind someone already or would rather research this area youself, that's definately an option.

    The FFC makes things so much easier though because you don't have to sell your case, you don't have to make sure they order the more indepth and sensitive hormone tests and you don't have to fight to be treated with bio-ID's vs synthetic hormones.

    As I mentioned earlier, had I not already gone through the time consuming effort of finding an integrated MD for this treatment, I would have been at one of those centers with bells on, LOL

    You can google the Fibromyalgia and Fatigue centers for more information. They have a very informative website and a list of their locations. They also list the MD's bio for each center so you can make an informed decision.

    I hope I have made a good start of information for you. Remember the 4 corners of treating CFS/FM are to get stabilized, beat back any infections, balance the hormones and fix the sleep disorder. No one knows what causes these four things to happen, but they are treatable (not necessarily curable) and remission does happen.

    'Course, the four corners are what I came up with but it made sense to me and has made treating this illness easier for me to accomplish.

    Don't hesitate to post back if you have more questions.

    Take care,

    Elsa

    PS ... Rosie, I'm glad I could help. That is what this board is all about. I'm just passing things on like people did before me. Let me know if you too have any questions. I'll do my best to answer them.

    E.

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  6. TwinMa

    TwinMa New Member

    Elsa,
    Terrific hormone info! I have felt like my hormones were out of whack since the birth of my twins 11 years ago, but my thyroid tests by my PCP always come back "normal". Went to FFC and found I am hypothyroid and just started taking T3 and pregnenolone. Feeling somewhat better already, but it's still up and down! Thanks for sharing the hormone story.

    Katy
    [This Message was Edited on 11/10/2005]
  7. elsa

    elsa New Member



    For Tim .... and anyone else interested ...

    Elsa
  8. rileyearl

    rileyearl New Member

    Elsa, thanks so much for taking the time to put all you've learned in such a concise and easy to read post. I think you're right on with all of it.

    I've always thought the endocrine system holds the answer to just about every illness.

    I'm going to save your post to share with others.

    Thanks again!

    Francie
  9. Manwithfibro

    Manwithfibro New Member

    Please tell me this is covered by insurance?

    I have lost a ton of money chasing dreams...

    Thanks.
  10. elsa

    elsa New Member

    Morning All,

    Tim, you're in luck buddy. My insurance covers my Integrated Doctor visits with the co-pay being my up-front responsibility and they have always covered any labs I have taken no questions asked.

    I did some research into compounded pharmacies in my area before I had my first doc appt.. I picked one with the longest history. The head pharmasist and owner had many creditials and commendations behind him.

    They too take my insurance. I made sure that the pharmasist and doc were on the same page before we even got started. Look at it as a big ticket purchase.

    If you choose the same route as my sister, then, yes insurance does cover but you have to be the responsible party in filing.

    My sister is a Bio-ID Hormone Replacement patient at the Dallas FFC. She lives here in the Mid-South area, as do I, but after looking into all the FFC doctors she picked the one she thought most qualified to treat her needs.

    All the lab work was covered directly and the office visits were covered 80% but she paid up front and filed after the fact.

    Many people balk at and think badly of the FFC for doing this with their office visits. I couldn't disagree more.

    By not signing on directly and filing directly, the FFC doesn't have to toe an insurance dictated protocol. They are free to treat an individual INDIVIDUALLY ... and free to treat them with any rx, IV, or natural supplement they deem necessary.

    This isn't my opinion, but business fact. My husband deals with hospitals, large physician groups and insurance (private & goverment sponsered) every single day. I am a licensed life and health agent. We know this to be true.

    This filing on your own was how it was done not that long ago. It was between you and your insurance company. The doc was left out of the middle to do his thing. I understand more and more specialty area doctors are going back to this. I hope so.

    But I digress .... simply put ... my sister and I both have our compounded rx'es covered by insurance.

    My sister chose to have her rx'es faxed to the compounding pharmacy here at home. I'm sure you could use the same pharmacy as the FFC if you felt it best for you.

    Both labs were covered and doctor visits covered either by office filing or independent filing for about 80% of cost.

    I was diagnosed two years ago. I wish I had gotten treatment for the HPA axis much sooner.

    I agree with my whole heart that bringing the CFS/FM affected hormones back into balance does and will resolve the majority of my symptoms. (But it won't cure my CFS/FM illness.)

    I didn't have a direction to go in at the time and had to dig a path for myself. Exhausting, but I did it and now I am getting better. I guess I am being pushy while trying not to be too pushy ... But, .... you have the advantage of my hit and miss experience and tons of research ...

    Trust me on this one. It is not snake oil. It is very logical. You fix your hormones and then maintain the balance and you will be very close, if not all the way in remission. Make that appointment soon.

    I have compiled a list of hormones and symptoms. For example, I have listed all the symptoms one has if they are hypothyroid (low thyroid). It's quite a list. I would be happy to post it for you if you'd like a more detailed look. I think you would be surprised to see the cause and effect in relation to how you feel on a daily basis.

    How long have you been diagnosed? Do you have CFS and Fibro or just one of them? Are you on any medications to help you through? I apologize if my asking is out of line. I may be able to make helpful suggestions if I understand more clearly what you are dealing with.

    As always, post back if you have thoughts or questions on this.

    Take care,

    Elsa


    Miss Francie and Katy: You'll are very sweet to say those things. I just think doing whatever it takes to balance these hormones results in our feeling so much better. This board is all about helping each other and sharing what we know.

    Unfortunately, until traditional medicine comes up to speed on treating the four areas of CFS/FM, we'll need to rely on each other.

    I don't think that day is too far off. The business the FFC's generate and their success rate in improving the quality of life for CFS/FM patients is hard to ignore.

    Traditional Medicine needs to see these illnesses as causation and not "diseased" symptoms. Again, I'll use the thyroid as example. Traditional Medicine will only treat low thyroid if the tests show "diseased" numbers.

    When the thyroid is treated as causutional symptoms thru testing, we start to regain our pre-illness functionality.

    Since the doctors at the FFC are all traditional,western medicine board certified, I believe it won't be long before the this "new idea" of treatment for us trickles down to the mainstream, frontline doctors.

    I don't fault these guys. This is new territory. It will take time to get it mainstreamed. Until then, the "MD Mavericks" (LOL) thinking outside the box will get us through.

    E.










  11. elsa

    elsa New Member

    I am going to do the injections for a while as I think I need a jump start and have many tears to repair.

    I have considered using the medication you mentioned for maintainance after I have balanced, etc, the GH.

    I have studied Dr Bennett quite a bit. His research results are too logical and simple for words in my opinion. I agree that physical activity will continue to degrade the soft tissues until the GH deficiency is addressed.

    That's why I stopped training and competing in horse shows until I fixed this. Just living everyday life produces muscle, tendon and ligament damage that I cannot currently repair. I'll start back when I have this under control.

    Thanks for your input. I have the name of the medication Dr. Bennett is using in my files for possible maintainance. I have to say though, that is one area that I'm not going to have all possible tests to prove things ... no spinal taps for me by golly!!

    Take care,

    Elsa
  12. elsa

    elsa New Member




    Bumping for Tim ..... Chance to read over ....

    Thanks guys,

    Elsa
  13. Manwithfibro

    Manwithfibro New Member

    I take Guaifenesin and some painkillers. I also take Klonopin.

    I don't know. Nothing helps alot. Klonopin eases my restless legs some.

    I feel like muscles are hanging on with fish-hooks at times.

  14. elsa

    elsa New Member

    Sorry about that. Had a problem with the boards earlier, and got behind in my schedule .... just now able to respond to some posts.



    The imagery ... Wow! Fish hooks pulling through muscles. The thought makes me tremble, but ... unfortunately ... pretty correct sometimes. I'm sorry you're going through that.


    I haven't felt that badly in a while. Doesn't mean I don't think it can happen again ... Hope not though.


    I haven't taken klonopin as it suppresses REM sleep which is my particular sleep disorder. I actually have quite a list of things I can't take because of that.

    I do take guaifenesin 1200 2xd, but I don't follow the Marshall Protocol. It was added to combat my Maniere's Syndrome that had been exacerbated by FM. If I get an added benefit from it ... great.

    My sleep study was one of the best moves I made. You probably already know how I feel about the studies ... I think it should be automatically ordered during diagnostic phase right along with the blood work.

    There is more then one kind of sleep disorder and one sleep medication does not fit all. The reduction in pain and fatigue and headaches was remarkable for me.

    With all the different systems affected by CFS/FM, it is interesting to me that one person may have to really fight the viruses and improve the immune system where as the next person may find that it is their endocrine system that is the main contributor.

    What is certain is sleep, immune, and endocrine sectors all play a crucial role. What makes it tough to treat is determining which sector is the dominant symptom producer in any given patient.

    For me it is obviously the endocrine system. Treating the viruses was not a tough process and I didn't suffer the herx responses like many here have talked about. I did herx, just very mildly and quickly done with.

    For every symptom I have there is a hormone deficiency/dysfunction that is contributing to, if not directly responsible for it being present.

    That doesn't mean I think I will be cured after adjustment, nor does it mean hormone imbalance is the sole cause, but once it is resolved, I can't help but be in a better place.

    I hope you get some relief from all of this soon. Maybe things will start to fall into place for you treatment-wise and you can get on with living life.

    Please let me know if you decide to get tested/treated for endocrine problems. I would be very interested in hearing which route you took.

    Take care,

    Elsa

    [This Message was Edited on 10/13/2005]