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Have a meeting

Our next meeting will be on Tuesday, September 24 from 7-9 PM.

I will be talking about Ultra Clear Renew a medical foods product (coupled with modified elimination diet) that helps 50% of users to reduce their Fibromyalgia Symptoms on the FIQ (Fibromyalgia Impact Questionnaire) up to 50% on average. I have been a fan of UltraClear (formulated for Chronic Fatigue Symptoms) for 13 years but Ultra Clear Renew is formulated for the Fibromyalgia symptoms of altered pain signaling.

I also want to talk briefly about the Fibromyalgia Coalition International one of the few organizations we have left to represent us. I will be traveling to Missouri for their conference in October to check them out up close and personal and I will be an exhibitor there if all goes according to plan.

As always come with your good suggestions and tips for overcoming FM symptoms and as always ask your questions for clarification on what works best for recovery from Fibromyalgia.

Our group is spectacularly experienced and talented in the ways to combat, deal and coexist with our illness and if you are a first timer you will be among friends in this meetup.

As always donations to help me defray my meetup and meeting room costs are greatly appreciated.

Betsy

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  • Greg

    Sorry I missed the last meetup. I was planning on going and looking fwd to it. Unfortunately, something came up and was not able to make it. Hopefully next meeting will work out better for me, as I am looking fwd to it. Thanks

    October 7, 2013

  • Diana R.

    I went to see Dr Pachas today. He was against the LDN. Wants me on a vegetarian diet, "rowing" type exercise starting at 2.5min daily working my way up very slowly, prescribed Savella and Nuvigil and wants me to try Melatonin starting with 10mg and working my way up to 20mg if needed. He also wants me to see Dr Jack Greiner for my dry eyes. He explained that about 70% of FM sufferers have this condition and don't realize the small corneal ulcers can lead to serious vision problems. He ordered about 7 vials of bloodwork and f/u in 6wks. I'm still going to try the L-glycine, GI Revive and Ultra Clear Renew. Probably be a few wks before I can report back on any improvements. The vegetarian diet will be the hardest for me to stick to...

    October 4, 2013

    • Greg

      continued.... I was getting 50mg naltrexone online and mixing my own 4.5 mg doses. Then I decided to get 50mg tablets by prescription so medicaid would pay for it. In order to do so I had to tell my primary care doctor I needed it for an alcohol problem even though I am sober over 30 yrs. She prescribed it a few times. Unfortunately In order to get a new wheelchair I had to see a neurologist (another closed minded idiot) . I unfortunately (BIG MISTAKE) told him I was taking LDN and low and behold 2 weeks later my primary care doc called me to tell me she can no longer prescribe the 50mg Naltrexone!. Coincidence? I think NOT!

      October 7, 2013

    • Greg

      .....My neuro probably read her the riot act about prescribing it. I HATE THEM BOTH. My pc doc gives me the creeps and the neuro is just a plain moron. The neuro refused to believe the LDN had anything whatsoever to do with my progression stopping in its tracks. Even though before taking it I had a different doctor who was telling me that I should start looking for a suitable nursing home as the last "attack" put me in the wheelchair and bedridden for weeks. He said it could only get worse. Needless to say I am looking for a new primary care doc who takes masshealth and has the ability to think "outside the box" Not an easy task to find. Any suggestions are welcomed. In the meantime when I run out of the naltrexone I have left I will get the online again

      October 7, 2013

  • Cathy G.

    Diana, I also have had a problem with dry eyes and it had e worried.is dr jack greene an othomologist ? Where is he located ?

    October 5, 2013

    • Diana R.

      Charles River Eye Associates. Offices in Winchester and Boston. Dr Jack Greiner is an ophthalmologist and is supposed to be an expert in "dry eyes."[masked] (Winchester)

      October 5, 2013

    • Cathy G.

      Thanks so much.

      1 · October 5, 2013

  • Cathy G.

    Lois I have been taking for months a metagenics product called lumina.it is " designed to provide nutrients for modulating dopamine,neuroepinephrine and GABA.". I believevBetsy is a metagenics provider.

    October 3, 2013

  • Diana R.

    Really glad I made it and that my brother accompanied me for support.

    1 · September 25, 2013

    • Lynne

      Diana, I hope to see you at the next meeting. You can tell your brother that we do usually have a couple of guys there!

      1 · September 25, 2013

    • Christina M.

      I thought it was great that he was there for you.

      1 · September 25, 2013

  • Christina M.

    This was my first meeting and the information everyone shared was very useful. I will definitely participate again. It's so hard when others don't understand what you experience with fibromyalgia. It was good to be with others who do.

    2 · September 25, 2013

    • Lynne

      Hope to see you at more meetiings. It's great for information and support in general!

      2 · September 25, 2013

  • Debbi

    I'm going to try to make the next meeting but Tuesdays are difficult for me these days. Betsy, is there a link to the information on Naltrexone? I'm interested in learning more about it. Thanks!

    September 19, 2013

  • Cathy G.

    Hello Betsy and all. I am so sorry to have to miss this group again. At least for once it is for a good reason. My husband and zi are going to go away for a few days. If this works, it will be good. As I am sure you are all so aware of how taxing having fibro is on a relationship !
    Betsy how long will you be in the area ? I will probably be back by Wednesday night.

    September 18, 2013

  • Carole I

    Sorry, thought I could make it but moved Friday and won't be at this one. Will make it to the next one. I live closer now. Onward we go...

    1 · September 15, 2013

  • Betsy T.

    Tiffany, sorry I haven't been on the site, too much traveling going on. If you have any questions you'd like to ask me individually just email me directly at [masked] or call[masked]-7547. I had to convince my doc about Naltrexone and he is very forward thinking usually. I enlisted the help of a compounding pharmacist who is into alternative health and he knew my doc and consulted with him and concurred with me. I actually brought in the Stanford study results from 2009 which was helpful.

    Any competent doctor that can think outside the box will prescribe this because it is safe, effective and has been around for 50 years with few if any side effects. Unfortunately there aren't many doctors around that want their patients being proactive. When you get a doc referral call and ask to have a phone consult and tell them what you are wanting so you don't waste your time in the office.

    Call me if you don't get the information you are looking for from our group.

    B

    September 6, 2013

  • A former member
    A former member

    Hello All, I'm wondering if those of you who mentioned low dose naltrexone in the last meetup could send me the name of your prescribing doctor(s). Either that, or perhaps we could talk about it at the meetup? I'm having a hard time and my doctor doesn't understand! I was just prescribed a muscle relaxer on top of the meds. I have already. At any rate, I feel like it makes my pain worse and it definitely bothers my stomach. He told me outright that he will not prescribe naltrexone. Thanks!

    August 24, 2013

    • Lynne

      Hi Tiffany, Sorry to hear your pain seems worse. Learning more from the others about LDN would be of interest to me too. See you at the meeting, take care, Lynne

      August 24, 2013

    • A former member
      A former member

      Lynne, you are always so nice and welcoming! I hope you know that you are a definite asset to the group.

      1 · September 2, 2013

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