for spartanjt

Discussion in 'Fibromyalgia Main Forum' started by romalaw, Dec 9, 2009.

  1. romalaw

    romalaw Member

    I'm starting a new post, didn't want to hijack the other one on the movie. Great to hear from you, was wondering how you are doing.

    I am actually, knock on wood, doing pretty well. I had a small flare after my pp gave me a tetanus shot before I had time to refuse it. I simply cannot tolerate any kind of vaccine. But it cleared up sooner than I expected.

    I am actually feeling well enough to do some part time work as a mental health counselor. I have not worked in six years. It's such a thrill to actually be well enough to work.

    I am still seeing Brownstein a couple of times a year. He has not really added anything new to my treatment except a supplement he says works similarly to growth hormone. I think I told you about his testing that revealed I have some genetic defect for synthesizing folic acid and addeing a supplement for that, which has seemed to give me a little boost,

    I did have some problems with the Armour thyroid scarcity and have had to up my dosage from 60 to 90 mg-- not sure if it's because they have changed their basic formula.

    How about you? How are you feeling? Have you tried any new treatments. What do you think of this whole XMRV development? I am thinking of asking B about low dose naltrexone next visit.

    Looking forward to hearing from you.
  2. romalaw

    romalaw Member

  3. romalaw

    romalaw Member

  4. spartanjt

    spartanjt New Member

    Hello again - Great to hear how well you are doing. Getting back to work must be very satisfying for you , after all you've been through over these past years.

    Interesting that you mention the Armour supply problem. I also ran into the same thing with my pharmacy & am now buying my 90 mg caps from a compounding pharmacy in Farmington Hills. Actually turns out to be cheaper buying this way, without using insurance, as compared to paying just the co-pay through the pharmacy,,,,,go figure !

    As for my health, I've been feeling pretty good over the past several months. I think that the dhea/pregnenolone combo that I'm still taking, along with the Armour thyroid is helping me there. Had the flu (type A) last month, but made a pretty quick recovery from that, so I guess my immune system is working okay.

    Honestly, re the XMRV that you mentioned, I've not been on this board, or any other CFS boards for so long, that I don't know about that. My doc has not mentioned it to me either,,,,can you give me a brief summary of what its all about ?

    Talk to you soon,

  5. romalaw

    romalaw Member

    So glad you picked up my post, I bumped it a couple of times and was beginning to think you wouldn't find it.

    XMRV is a retrovirus that was found to be present in significant numbers of CFSers in a recent study. It has caused quite a stir in the CFS community as you will see on this board. Basically many are (prematurely, I think) rushing to conclude that this is the causation that all have been looking for. Since AIDS is a retrovirus, it brings up all kinds of issues. I have to say that I remain skeptical. Further research is underway and I will await more information. I guess my sense of the illness is that we have a faulty immune system that makes us susceptible to new and dormant viruses, infections, etc. The whole Lerner experience and the still unproven effectiveness of antiviral treatment (not to mention how it seems to make so many relapse) makes me reluctant to experiment with anything too toxic.

    Anyway, you can probably get more scholarly and indepth info if you just read some of the many, many posts on the subject. If you decide to check it out, I would be interested in your take on it.

    I will check out the compounding pharmacy. I am glad to hear that you are faring pretty well.

    Let's keep in touch.
  6. spartanjt

    spartanjt New Member

    This XMRV virus theory sounds interesting. I took a look at a few posts re it yesterday & noted that there a lot of discussion of exactly how this virus is passed,,,i.e. possibly sexually transmitted like the AIDS virus.

    I think the idea that CFS is due to an immune system disregulation has been the one that's been around for a very long time. Cheney's theories re CFS related to heart dysfunction has always made some sense too.

    I just have a difficult time subscribing to the theory that a single virus is the primary culprit in this. I'm more in the boat that there are multiple factors involved,,,possibly viral, bacterial, immune system dysfunction, toxins/heavy metals,,,etc. I guess this goes back to my time spent with Dr Conley, who is a believer in attacking CFS/FM on multiple fronts, with multiple therapies. In my case, the amalgam removal & chelation efforts, along with the thyroid, hormonal & candida therapies have been key.

    You've already seen my posts re Lerner.....personally, I'm not a fan of that kind of intense viral therapy, but maybe it works for a subset of folks. Probably docs like Brownstein, Conley & Kavieff are more in line with what you & I believe to be the best way to attack this. And like you say, its gotten now to the point, after all these years,where we really know better than anyone, even the docs, what is best for us to do treatment-wise & going forward.

    Just my two cents worth !

    Yes, keep in touch,,,always enjoy your updates.


  7. spartanjt

    spartanjt New Member

    Know its been quite a while since we touched base. If you're out there lurking, would love to hear how you've been doing over the past year.

    I'm still hanging in there,,,,bit tougher year in 2010 than last year though.

    Hope to see you posting soon.

  8. romalaw

    romalaw Member

    Hello my friend, I haven't been on this board much in the last year. I occasionally check in on Phoenix Rising. I just happened to stumble on this post you sent me because I was checking this site for a client who needs some info on filing for disability. I'm still working part time, it does exhaust me but also energizes me, if that makes sense.

    The stuff that Dr. B gave me that was supposed to work like growth hormone--my body didn't like it very well, so I stopped it.

    I am back on Armour now that it's back on the market and it seems to work better than the other I was taking while it was unavailable.

    I see folks are still seeking the miracle cure from Dr. Lerner. So few seem to benefit and they seem to suffer a great deal in the process. I am at a stage in my life, that I am not willing to risk losing the quality of life I have worked to hard to regain on a gamble.

    So how are you doing, health wise? Any new treatments. I'm still pretty much on the same regimine. Curiously, I have had bouts with respiratory infections this last year and recovered from both. What is curious is that for many years, I have not gotten sick in the traditional sense, don't seem to catch what's going around. Not sure if this is a sign that my immune system has recovered somewhat or has gotten worse!!

    Love to hear from you and hear any new insights, thoughts you might have. Go Spartans!
  9. spartanjt

    spartanjt New Member

    Hi Romalaw - Good to hear that you're still lurking on the board.

    Reading your post I found a couple of things very interesting. The growth hormone treatment Dr B gave you,,,,,what exactly were you taking ? I ask because based on conversations w/a friend in AZ who has done extensive research into CFS & amalgam poisoning, increasing my GH levels could be a very good thing for me. Specifically, he has mentioned the fact, that increased REM sleep for men, would boost the GH levels,,,,& that the drug Ropinerole would be the best choice to assist in getting deeper sleep.

    One other thing per his recommendation, I stopped taking melatonin at bedtime for now, & am only taking a small dose of klonopin. He cited me research re that melatonin over time can cause auto-immunity problems & i was starting to have some of those problems.

    Re the respiratory infections,,,,,for a long time, like you, i seemed to never get a standard cold or bronchitis. Over the past few years, I've had both bronchitis & recently, a very bad head/chest cold. I'm in agreement with you, that this is a sign that the immune system is working more like normal,,,which is a good thing.

    For myself, I'm still on thyroid meds, but was switched from Armour to Levothroid earlier this year. I was beginning to really struggle w/fatigue & my labs were going in the wrong direction on the Armour dosage. Since the switch, my labs have improved & i've gotten some energy boost too. Per Dr Kavieff, he's seen this before, where over time, the Armour just doesn't work for some &'or an intolerance to the pig thyroid develops. Apparently, over many months/years of use, that happened to me.

    Anyways, i'm hanging in there,,,,& am planning on working w/Dr K re the GH situation next time I visit. My daughter is getting married this weekend, so there's a lot going on w/my wife & daguhter right now, which can be quite stressful too.

    Again, great to hear from you & looking forward to your reply.

    & as always....

    GO GREEN !!!!

  10. spartanjt

    spartanjt New Member

    bump for Romalaw
  11. spartanjt

    spartanjt New Member

  12. romalaw

    romalaw Member

    Hi JT, Interesting about your being switched from Armour to Levothroid. The GH is took was a supplement base, not the hormone injection. It didn't do anything for me and expensive to boot, so I stopped taking it. I've not heard of the drug Ropinerole

    I'm seriously considering switching to Dr. Ng in practice. They charge a new client fee to change docs so have been reluctant but I've been feeling for a while that Dr. B has taken me about as far as he can. I would like some fresh eyes.

    Here is my email address since I don't get on this board very often maybe we could stay in touch better that way. Would be interested in how your GH tx is going

    (e-address removed by moderator)
  13. spartanjt

    spartanjt New Member

    Hi again- Interesting re your decision to switch docs. A friend of mine who does cranial sacral treatments & massage work is also a patient of Dr Ng. She does have good things to say about him. Guess i always thought that Dr B was the main guy at that office, but sometimes it does help to get a different perspective.

    So your e-m address got removed from your post. Not sure how we're supposed to get that type of info to other folks, if they're cutting it off this board.

    Maybe one of the mods will have some advice re that ?!?
  14. I hope you pick up this post