Elsa's Treatment / Remission Pawprints' & Other's Requested Info

Discussion in 'Fibromyalgia Main Forum' started by elsa, Feb 6, 2006.

  1. elsa

    elsa New Member

    Sorry it took me some time to get to this .. My treatment plan follows much of the expert's idea of major systems affected in CFS/FMS ... I call them the cornerstones ...

    Before I started I asked myself tons of questions ... I hoped to come up with the best plan for me and one I would stick with ...

    Ask yourself: What are my goals? What do I want to accomplish while on treatment? How do I feel about rx'es, ... AD's for fibro pain, sleep and energy vs the needed AD's for depression? How do I feel, what's my worse symptom?

    What do I want to feel like on medications? Or What side effects will be acceptible for the medication benefit? What are the best med/supplement delivery systems for me? What other illnesses do I have? What do I want to avoid? How much time do I want to devote daily to treating CFS/FMS?

    These were important because they set a guideline to follow when coming up with plan.

    Also, remember that healthcare is a business ... You hired them ... you get a vote. Be sure to pick the right docs that match your goals for treatment.

    The Cornerstones of CFS/FMS are HPA AXIS Disregulation / Hormone Imbalances .. 2. Sleep Disorder(s) .. 3. Immunity / Infection .. 4. Mitochondrial Dysfunction ...
    5. Elsa's added cornerstone ... quality of life medications ...

    Immune/Infection ... I'm not sure I would have started with this one first in hindsight ... probably the hormone imbalances, but what is ... is.

    I took 6 months valtrex 1gr 3xd then moved to famvir for another 6 months .. 750mgs 2xd (?). We then switched to first colostrum themn added whey protein concentrate and then finally added Transfer Factors 560 ... geared specifically towards EBV ... which is the only infection I had to deal with.

    I built up slowly on the TF's ... one a day for 5-7 days then added another, finishing with 3 a day. Usually improvement can be seen in 6 to 9 weeks, but can be much much longer ... depends on co-infections, hypercoagulation, other illnesses, etc.

    The TF was the most impresive of all the immunity / infection treatments .. Got a big herx early on and then all traces of flu-like symptoms went away.

    Next ... Sleep Disorder ... I tried many of the natural sleep aids first ... Gaba, L-theanine, Melotonin, ZMA which very small results.

    Doctor ordered a sleep study ... found the ususal Alpha Intrusion plus an unexpected Zero REM sleep stage. Made a big difference in what I could and could not take .. not just for sleep , but for anything. If it had REM suppression as a side effect it was off my list.

    Serotonin, SSRI'd and 5 HTP have this side effect, so none for me thanks.

    Lunesta worked best for me ... started at 2 mgs and reduced down to 1mg ... Don't take any at the moment, feeling better ... but I will go back in a heart beat if need be.

    During all of this I was taking basic nutritional support, ie a good WHOLE FOOD multi vitamin, lecithin, flax seed, vit's c and e, magnesium, malic acid, etc..

    After the sleep study and medications I looked for a NO doctor ... I wanted to know more about Amino Acid therapy ... Specifically ways to stimulate GH and Dopamine. There are many good treatments involving amino acids and very much worth looking into ...

    I don't take many any more as I take GH directly and am feeling overall much better, but I do recommend it ... Mucana Pruriens is an excellent supplement to take to build dopamine.

    I posted a couple of times on AA therapy ... can look it up here for more information.

    HPA Axis and Hormone Imbalances ... I wish I had started here ... oh well ... I'm on it now!

    T3 100mcgs first thing AM with second dose between 1-2pm at 50mcgs ... It is working but I am not regulated all the way yet ... My body temp is still too low, but will get there.

    Cortisol .. 10mgs thirty to an hour after T3 .. I am thinking of adding a dose around T3's second dose and again in late afternoon if needed ... 10mgs . 5mgs . 5mgs respectively.

    Cortisol needs to be in place with T3 ... My low temps fluctuate in the low ranges which indicate thyroid plus adrenal issues, and I still hit the wall in the afternoons comparatively speaking. My current wall hitting at nothing compared to 2 years ago .... LOL Cortisol wil not shut down your adrenal gland if you keep the total mgs at 20 or below.

    DHEA/Pregnenolone ... Multitude of reasons ... DHEA is the co-hormone (with cortisol) in the adrenal gland. If cortisol is extremely low ... then in order to make it, "stealing" goes on ... this stealing makes for really low DHEA as it was the one stolen from. They act like sibblings fighting over the best stuff.

    Pregnenolone helps in alot of areas ... creates a great sense of well being, helps with energy levels as it is made in the mitochondria and helps with arthritis ... All of which is moot if you don't have enough to get you to an even starting point.

    Right now I take a supplement with 25mgs/100mgs , DHEA/Pregnenolone. I have taken this 2xd before, but I don't currently. I will probably switch to a subl DHEA and take 200mg pregnenolone by itself.

    Growth Hormone ... Norditropin Nordiflex ... I take this at bedtime which most are familiar with, but I also inject in the AM as well. I am trying to avoid the huge UPS and DOWNS of replacement GH that can happen with just one injection.

    There is not an expert / researcher / treating physician that will tell you that GH is not effective for CFS/FMS treatment. Of course our muscles hurt ... don't have GH then cannot repair the soft tissue tears ... It also is very good for immunity. Dr. Bennett says no other substances has a more pronounced improvement on CFS or fibromyalgia then GH.

    He goes on to say "the longer the illness the more deficient patient's IGF-1 (made from GH), becomes ... It (GH) can make tremendous difference in those with low levels of IGF-1" .... Many, many of us are ....

    Testosterone .... I was so very low in this it was laughable. Again, of course my muscles hurt .. besides not having GH to fix the tears, I didn't have any testosterone to make any new muscle ... I inject 1/4cc IM 1xwk ... Injecting makes life easier on the liver and insures the best possible delivery ...

    If we are low in DHEA ... possibly due to low Cortisol Steal ... Then we are going to be low in testosterone ... It comes from DHEA ... See how all of this is connected?

    Biest less then 1/4cc starting on @ day 15 of cycle. The reason behind this is a little different. My estrogen/progest levels were fine. No where near menopause and no signs of estrogen dominance.

    I wanted biest (two compounded estrogens) to combat the escalation of symptoms that occurred after ovulation estrogen drop. This is not my brillant theory, but several other treating/researching MD's.

    Dr. Elizabeth Vliet comes to mind right off the top. The theory works ... my symptoms ie fatigue, exhaustion, motivation, headaches, etc. improved vastly.

    Melotonin ... 1mg subl at bedtime I don't take this for sleep although it is nice and relaxing ... I take it for other reasons .. mitochodrial support, bolstering immune system and powerful antioxident.

    Progesterone ... I have 100mg compounded capsules, but don't take them. It was added to the plan for sleep issues, but I cannot stand the kick back, sedating feeling progesterone gives off ... I couldn't stand the same effect from serotonin either ... My tests were fine here ..

    Mitochondrial Dysfunction Many research papers on this and easy to locate should you want to look into it more.

    Acetyl-L-Carnosine 1000mgs 2xd .. I have this in powder form and mix with usually apple juice. I follow this with

    Alpha Lipoic Acid 300mgs ... You can find these combined into one product if you like .. They both are for mitoch., but they do many other things as well ... worth looking into.

    ATP/NADH 8mgs subl 2xd ... I am about to drop this down to 4mgs ... There are too many studies to list concerning NADH ... Immune Support here has alot ... even their supplement catelog has info on this. It is pricey, but this combo is not too bad.

    Don't take these with the expectation you are going to be ENERGIZED greatly, immediately ala caffeine. It takes time.


    B12 1cc/ml injection IM about every five days ....

    B-COMPLEX 1cc/ml injection IM same schedule ... I get both of these through my compounding pharmacy ... I just wanted to insure I got every bit of benefit from taking these ... vs what may or may not get absorbed after swallowing or subl. They are both by RX

    D-RIBOSE ... We don't always do a good job making our own D-Ribose from glucose. This has a very bad effect on energy. Need D-Ribose to turn ADP into ATP for energy ...

    Idebenone ... Synthetic CoQ10 ... Can substitute for CoQ's positive and life essential functions but does not have COQ's free radical producing feature which occurs under hypoxic (low oxygen) conditions.

    Quality of Life Medications ... This was a big one for me ... I have zero problem "masking the symptoms" WHILE I try my best to treat the under lying problems. My biggest symptom or the one I could stand the least anyway, was the fatigue/exhaustion ... I could not stand not being able to keep my eyes open.

    I have two rx'es for this ... the reason for two was to prevent becoming use to either one ... insuring I would always have an EDS (excessive daytime sleepiness)medication that worked.

    Provigil 100mgs Can take both in AM, or one in AM and second in early afternoon. Have been known to take three if I have an incredibly long (15) day. It works ... but if you are heading for a crash then you are going to crash. It's not going to let you keep going ... This is not necessarily a bad thing.

    Adderall 20mgs 2xd I rarely take 20mgs at once or take both tabs as directed. It works too ... It also helps with cognitive problems ... Think more clearly.

    Don't ever take both in same day of course ... Am taking less of both since remission ... One doc has moved me into full remission ... I still say 3/4 remission, LOl

    Tramadol/Ultram ... Pain Meds... This is a personal decision .. I never went higher then tramadol ... mostly because I hate that sleepy feeling pain medications can most often cause.

    Tramadol does not make my fatigue worse .. in fact gives me a little boost. Two years ago, tramadol combined with 8mgs ibuprofen allowed my to get out of bed ... still had pain, but I could function. I like to say it gave me a fighting chance. Now, tramadol makes me pain free when I am having pain.

    I still combine it with ibuprofen ... and I still am on my "pain medication dosing schedule". However, more likely then not, I will forget to take my pain meds for several hours past the dosing schedule time. As I get stronger and stronger I seem to forget to take them more and more. My doc loved hearing that one!

    I took flexeril for a short time .. hated the side effect of blurred vision plus the sleepy side effect .. I also have an rx on my fridge for skelexan ... it is supposed to not be so bad sleepy wise ... I just don't need a muscle relaxer at present.

    I have singulair and flonase for the allergies I never had before CFS/FMS. Again, as I get stronger and the longer I am on my hormone treatment, the less I need these meds. I have backed down to taking them every two / three days. So far I am holding my own ....

    Brain fog, short term memory, word recall, etc ... These are getting less and less of a problem too. There are a group of medicines called nootropics that I am talking over with one of my docs ...

    Nootropics enhance cognitive ability, improve short term memory problems, enhance attention to detail and can lessen depression. Some of them also repair existing damage while minimizing natural deterioration to brain.Mental energy is a big plus.

    There are several ... and can't get them in the US I don't think. Dr.Teitelbaum directs his patients to order Piracetam (nootropil 800) from England. Lets not think of why the FDA / AMA won't let a product that has been studied since the early 60's in ... And that comment coming from a basic supporter too, LOl.

    Massage and acupuncture helped alot ... Remember though the question at the beginning that asked "how much time" willing to devote to treatment daily? ... Well, I wasn't interested in devoting that much time ...

    They are treatments that I know helped me ... I know I can always go back to them if need be in the future.

    I think that's it! Quite a long list ... but it has been an eventful two years healthwise for me.

    What can I do now that I couldn't before?

    The list is huge ...My work is physical, high energy and non-stop on your feet ... have many times worked 11, 12 14hr days. I go shopping and run errands after work ... I meet my husband afterwards ... I don't need three days to recover from anything any longer ... I walk my dog every night rain or shine ... I'm happy ... which is probably the best to come out of all this.

    I hope this helps someone out there. I received so much help from our members here .... It was amazing ... I would still probably be chasing my tail wondering how I was gonna make it through the day if it weren't for this place.

    Take care,

    Elsa




  2. ldbgcoleman

    ldbgcoleman New Member

    Thanks for the comprhensive summary! Nightingale is doing great! Her leg gets ultrasounded again tomorrow. She is walking abut 20 minutes per day. She is full and I mean full of energy.

    What do you suggest to calm her down. I have bee told there is a montly shot or a daily pill through the vet but I have also heard of some Herbs. I am just a little apprehensive about getting on her again even though my trainer is going to start her for me.

    Also I put a ball and a lickit in her stall and she is really licking the lickit and going through one every five days or so. Is this bad for her??

    Thanks for everything!! Lynn
  3. TwinMa

    TwinMa New Member

    That is phenomenal! Thank you SO MUCH for sharing all that information! What a journey you have had!

    I have a couple of initial questions. What is a NO doctor? You referred to a NO doctor for Amino Acid therapy.

    Do you use compounded cortisol or Cortef? Do you think they are equivalent or is compounded cortisol superior?

    I need to read this post several times and digest it. I'm sure I'll have some more questions later. Again, THANK YOU!! Sharing your wisdom is a blessing for the rest of us.

    Katy
  4. dancingstar

    dancingstar New Member

    What a terrific post! I'm on the way, but I've still got such a long way to go. I'm looking forward to getting some GH to take home, got a feeling that will be really useful. We're taking everything very slowly. There are certainly some treatments that I'm not looking forward to.

    Like you, my temperature runs low. I can't imagine keeping a full schedule but look forward to the time when I can once again. :)

    Thanks again,
    Bebe
  5. TwinMa

    TwinMa New Member

    Bump for others to see this very informative post
  6. pawprints

    pawprints New Member

    Thank you so much for the time you spent writing this out. What a journey you have had. I know you will have continued success.

    I will have to reread this many times to comprehend but at least it is down in writing. Once again, many thanks!
  7. Pianowoman

    Pianowoman New Member

  8. Jen102

    Jen102 New Member

    for "giving back" to the people on the list who have contributed to your fine education, and for passing on good info to us who are struggling. I emailed a copy of your post to my good doc. She is so wonderful, she will read with interest what has helped patients.

    You know more than most docs about these illnesses, tho you get to put no letters behind your name, except maybe "S.H." for Still Here. Ha!

    I am working on many of the same paths as you have. I don't know how ill you got at your lowest. Last year I was totally bedridden, and believed that I would not live to see 2006. I am much better now, thanks to glutathione and magnesium IV's. but still highly disabled, and sick.

    The cornerstones of sleep, hormones, mitochondrial function, nutrition, and treating infections seem so important. These are the things I am trying to do, with some success. I think the big one for me, may be lyme disease. I am uncertain the best route. I am afraid of abx treatment, but don't wish to have further brain damage by doing nothing.

    Bless you for the time and effort and thought that went into writing up your plan. Blessings to you. Jen102
  9. laura81655

    laura81655 New Member

    I have been taking 10mg. Cortisol since Nov. I am gaining weight from this I'm afraid. I hate to quit taking it because it does help with energy and with a little of my pain. I am not on any T/3or 4. I haven't added anything different accept the Cortisol. I have never been a big eater, I do watch what I eat very carefully, so I'm not quite sure why this is happening a relatively low dose.
    Any suggestions? If you get the time...

    Laura
  10. laura81655

    laura81655 New Member

  11. elsa

    elsa New Member

    Ya'll are making me feel really good. I didn't expect such kinds words .... I had been thinking for a while now that I should post about what got me to this point ... Pawprint's questions the other day gave me the perfect opportunity.

    There are a few of us around that are feeling a bit better and are able to pass on any information that may help someone else ..... It is important to me to help in the manner that I was helped if at all possible.

    Dancingstar ... (I love that user name by the way ..) I really hope you find great success with GH. It certainly has made a big difference in my day in and day out living.

    Slow is good ... I went slower then I would have liked to at times ... But all in all, we didn't get sick overnight ... it's going to take time. Your full schedule will come back ... Just one step at a time. You sound very positive which is half the battle in my opinion!

    TwinMa .... Sweet of you to say those things .... it means alot to me. A NO is what I refer to as my Naturl Health doctor. He has been so helpful, but particularly when I was interested in amino acid therapy.

    I wanted so badly to feel better, energized ... up that I really thought creating dopamine couldn't hurt. He made sure I did all the things right. He has also helped to explain all about the mitochondria and how best to support it. Not there yet, but mucho better.

    About your dissected cortisol ... I don't have alot of science to back my thoughts on this, but I'm going to always go the compounded route when I can. I know alot of CFS/FMS specialist MD's rx cortef alot though, so it must be a very good, effective product. Dr. Teitelbaum rx'es cortef and it is mentioned in alot of his work. Maybe you can look for more info that way.

    Jen .... Wow!! How incredibly nice of you. I just thought it was time to try and get some things down on paper. I hope some may find some benefit for their own treatment with it.

    I wish I knew more about Lymes Disease. I think it probably maybe much more difficult then CFS or FMS to deal with. I know it takes a longer time to reach your goals but many people do so everyday. Have you looked up a poster here named SARASMOM? I believe that is how it's spelled .... She posted early about treatment through FFC for lymes .... for herself, daughter and son! If memory serves, they got better.

    I understand about being hesitant on whether to take anti-biotics or not. I believe I would go for it though. It is a pretty standard treatment for lymes with good results behind it ... You might want to weigh the illnesses itself against the risk of AB treatment. In this case, I would go for the AB's ... might be the "lesser of two evils" you know?

    I am sorry your illness has taken you so low ... How great you are making progress! I'll keep you in my thoughts for a continued, steady increase in your health!

    There isn't much bigger compliment then having someone print out a post you have written and forwarding it on to their doctor. Thank you for thinking I made a bit of sense. I hope there is something useful to you in all that! (Pretty long HUH?!?)

    Pawprints ... I was glad to do it ... I should be thanking you for the push needed to get going on it. Because of your questions, I got motivated to write this epic, LOl ... Been meaning to for a while ... Thanks for being the catalyst behind it.

    MISS LYNN !!! How good to hear from you Bahama Mama !! (Except that's not where you were right? Some other beach somewhere .... Hummm, Now that it is getting colder and acting more like winter around here, I am truely unhappy about your dream trip!!!! I can be terribly selfish sometimes huh?!

    I am glad to hear your baby is improving. I am looking forward to hearing the results of this latest ultra sound. I bet she has improved greatly!

    I know all about ligament/tendon lay up energy! Whew! Smetimes I wondered if I would survive. In my opinion, that's why God created the wonderful tranq ace promazine. (Spelling on second word is questionable ... but that is how it "sounds" when you say it.

    At the three week mark we would start actually getting on them and doing x amount of time a day walking ... we would do this instead of turning them out and risk doing something stupid to themselves. A 1/2cc IM of ace about 20 minutes before you get on will help alot with most horses.

    The once a month shot (I'm guessing without more info) could be depo provera ... yep, the same stuff the give to humans ... Now how does that make us all feel?! LOl

    I helps some horses to chill out ... even geldings ... but not all of them are successful on it.

    There is another injection given once a month that is like horse prozac ... another one that really, really chill's them out, BUT .... it can cause liver problems. A horse in our barn was on it for a while ... His coat turned dull, he lost weight, etc ... I don't think the trade off is worth it in this case.

    Lots of good supplements to choose from, but they may not settle her down enough for what you need right now ..... may not be strong enough.

    It was great to hear from you .... Keep me posted on how she's doing.

    Laura ... As far as I know, when we take cortisol for adrenal fatigue, then weight gain should not be a factor like what we hear all the commercials talking about.

    It's true that stress raising cortisol can cause weight gain ... especially around the middle. However, all that stress and elevated cortisol levels will eventually wear out the adrenal gland. When it does, cortisol production will drop below what you need for good health.

    The stress may still be going on, but instead of high cortisol numbers and weight gain ... we end up with a need to supplement the adrenal gland with cortiol so it can get a bit of a break and heal. I could be wrong, but weight gain isn't an automatic in situations like these.

    Some doctors have their patient try a five - seven day period of no cortisol after having been on it for three months. This is a way of seeing if the gand has had enough time to rest up and get strong again.

    If you feel good (or no worse, then you might stay off of them. If your symtoms escalte, then you stil need the cortisol daily.

    Maybe you are just improving enough that you don't need it anymore and that is effecting your weight? These are just thoughts out loud ... maybe you could run it past your doctor.

    Thank you so much ya'll ... My night has been made with all the positive and supportive posts. I have just fininshed a two day work contract. Today was a 14 1/2 hour day ... This is office time ... not my whole day time ...

    Whew! I qam tired!! But it is a good tired ... I am going to keep all fingers crossed that we all continue to get better ... one step at a time.

    Take care,

    Elsa
    [This Message was Edited on 02/08/2006]
  12. elsa

    elsa New Member

    Bumping
    e.