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  • #359039
    Kim
    Participant

    Michelle,

    I hope you can feel the collective RBF group hug! I also hope you can feel Kathy smiling down on you with one of her fancy rum drinks and Simba on her lap.

    Take care, friend.

    #355393
    Kim
    Participant

    Oh my, seriously???……Paris for dinner!!!!! Here’s the real truth, friends……… my life has imploded ~ my health has taken a hit, and I’m desperately trying to put all the pieces back together. The only way I know how to survive is to retreat and go back to my original boot camp routine so I can regain my health to deal with all the other crap that just won’t end. It’s called life, right? πŸ˜•

    I want to put this out there that several other volunteers are also dealing with major life stressors and it would be a great show of support to keep the board alive for those who are able to “pay it forward” to do so now. If you can help a newbie with a post on a topic that you feel comfortable sharing what’s worked for you, then please do it. If you’ve hit a good place in your recovery and can offer to help others then please speak up. We need your help. RBF is the solid organization it is because of the amazing, dedicated people behind it. It takes a village, people. πŸ˜‰

    Hugs……kim

    #354330
    Kim
    Participant

    Oh, Michelle, what a horrific event! I am so sorry this happened and am sending best wishes that you can rattle some cages to make sure this never happens again. If anyone can do this, you can!

    Be strong!

    Take care…..kim

    #354407
    Kim
    Participant

    Great, Andrea, it’s just so nice to have a game plan. πŸ˜‰

    Take care….kim

    #354395
    Kim
    Participant

    So as not to disappoint Randy……………yes, yes, yes, I think saunas should be mandatory for anyone with Raynaud’s. πŸ˜‰ Thinning blood and improving circulation is the goal and saunas are the best tool I’ve found. The disposable hand warmers are great to carry in your car and purse.

    Take care…..kim

    #354369
    Kim
    Participant

    Hi Claire,

    Good decision or bad decision…..don’t know for sure, but I do not get flu shots for pretty much the same reason you stated in not wanting to introduce one more thing into an immune system that is already out of whack.

    Take care…..kim

    #354289
    Kim
    Participant

    @Patti D wrote:

    Happy New Year Kim and happy health to you!
    Great article and now of course I think I may have parasites. Before I consider the treatment or cleanse like you did, I need to know how do you test for parasites? Have you got any at home tests to recommend?

    Thanks cysta πŸ˜‰
    Patti

    Hi Patti, and happy new year to you too!

    I have not been tested for parasites, but have “cleansed” for parasites and, oh my! πŸ™„ From what I’ve read I’ve come to the conclusion that the tests are pretty unreliable. You also might post on lymenet because so many Lymies deal with parasite problems. When I asked my PCP about being tested he said that no one around here would have a clue………….seriously, what DO the infectious disease doctors do??? My energy level is still low, still anemic, so I’m thinking I need to “go there” again. 😳 Here is a list of some labs:

    USA

    BioHealth Diagnostics
    2929 Canon St.
    San Diego, CA 92106
    Phone: 800.570.2000 – 619.223.7074
    Fax: 800.720.7239 – 619.223.8175
    http://www.biodia.com
    Email: support@biohealthdiagnostics.com
    They have a Find a Doctor option on their website. Or if you already have a doctor who is interested in using this lab they can call and open an account. BioHealth has excellent physician consultants to go over difficult lab results. They also have up to the minute protocols for all intestinal parasitic infections.

    Diagnos-Techs, Inc.
    http://www.diagnostechs.com/main.htm
    Note: Salivary testing for E.histolytica: The saliva tests offered by DiagnosTechs Inc. will not detect D. fragilis nor B. hominis. The saliva (GI) tests offered will only test for antibodies to Toxoplasma gondii, Ameba histolytica, and Helicobacter pylori.
    At this time, the US is the only facility location.

    Great Smokies Diagnostics:
    http://www.gsdl.com

    GSDL international:
    http://www.gsdl.com/home/client_services/distributors/

    Biotek Laboratories, Inc.
    13758 Lake City Way
    NE Seattle, WA 98125
    Phone : 206.365.1256
    Fax : 206.363.8790
    US Biotek Customer Service: info@usbiotek.com
    http://www.usbiotek.com/services/pcr.htm

    Jetti Katz Tropical Disease Lab
    800 A – 5th Avenue, #203 (at 61st St)
    New York, NY
    Ph: 212-207-4923
    Mo-Fr 8:30-16:30;

    Turner Parasitology;
    519 W. Carson Street,
    Suite 104; Carson,
    CA 90745-9925; USA.

    Dr. Martin Wolfe,
    Traveler’s Medical Service
    Washington
    202-331-0287.

    Let me know if you decide to do this and we can do it together. πŸ˜†

    Take care…..kim

    #353278
    Kim
    Participant

    Hi Aynur,

    You’re doing exactly what you should be doing……..researching and learning all you can about various ways to treat.

    At one point I was intrigued by MP too and decided to try it to ramp up AP. What a mistake! For 6 months on MP all of my SD symptoms came roaring back and I felt worse than I ever had. I had extreme dizziness, so much so that I was afraid to drive. At that time there were a handful of SD patients on the program (had been for several years) and none of them were doing that well. I bailed out, went back on AP, got some sun, and immediately started improving again. So, there’s my 2 cents!

    Take care…..kim

    #354354
    Kim
    Participant

    Hey Andrea,

    Good luck with your appointment. Wish I could offer advice, but my mighty little thyroid is still a work in progress and it’s anyone’s guess where it will eventually settle out, or burn out, as the case may be πŸ™ Mine has cycled from hypo to hyper and now back to hypo again, plus I have a lot of nodules which have been biopsied twice…..ugh! I also take Armour Thyroid and have an rx for 30mg and I have the flexibility to take up to 4/day. My doc believes it’s up to me to see which dose I feel the best on rather than relying on blood tests which can be unpredictable as your levels fluctuate wildly throughout the day. 3/day, spaced out, seems to be the right dose for now. This plan works well for me and I’m grateful to have some control in my dosing.

    Take care…..kim

    #354316
    Kim
    Participant

    AWESOME!!! πŸ˜€ πŸ˜€ πŸ˜€

    Take care…..kim

    #354340
    Kim
    Participant

    Hi Caroline,

    I’m so sorry for the pain you and your son are experiencing and hope you can find the answers soon to turning things around.

    Take care…..kim

    #354247
    Kim
    Participant

    My problem is, I can’t stomach the darn coconut oil. It’s so nasty! I know I just have to, but does anyone have any secrets? Please? I choked on it this morning and couldn’t get it down. I took it solid from a spoon, and I think the texture was the problem. I was going to melt it, but didn’t want to use the microwave as I was afraid the heat would damage it. I know some cook with it, but I’d prefer to just take it mixed with something-maybe juice? Can I melt it in the microwave or on the stove?

    Hi Jen,

    I’m a fan of everything coconut and have found lost of good recipes here:

    http://www.FreeCoconutRecipes.com

    Parisa posted on another thread about a site: The Spunky Coconut, also loaded with recipes

    A wonderful gluten-free site and blog is: http://www.elanaspantry.com (she uses a lot of almond flour)

    Take care…..kim

    #353273
    Kim
    Participant

    Hi Lynnie,

    I’m very happy to hear your sister is doing so much better, she was really in a bad way not that long ago. I agree with Parisa and wouldn’t rock the boat while things are moving in the right direction and she’s seeing improvements. It sounds as if her immune system has become more regulated and can possibly handle her latent infection(s). My doc always says if it’s working keep doing it, and if it’s not then change something.

    Take care…..kim

    #354274
    Kim
    Participant

    Hi Eileen,

    Oh, how I can relate to not sleeping…………hence, I’m up and on the computer @ 4 a.m. πŸ˜₯ “Wired and tired” could not be more me!

    One thing that I’ve found that really helps is total darkness. Sounds so simple, and it is, if you wear an eye mask. There are so many LED lights all over my bedroom that it was never dark and I was looking at the clock all night long. At first I tried to cover up all the lights, but that was a hassle. The mask is much easier, but not all eye masks are created equal. I like the molded ones, not the flat ones, because they don’t put pressure on your eyes. My favorite one is made by Bucky (the company that makes the cervical pillows).

    Take care…..kim

    #354227
    Kim
    Participant

    Hi Nancy,

    Your head must be swimming about now, but here’s my 2 cents. I wouldn’t bother with Dr. M., what’s to be gained there? We ALL agree that Minocin has helped our SD, so if there’s a doctor willing to start her low and slop and then ramp up, why wait? She could start infrared sauna therapy ~ there are proven results with cardiac patients (supervised, of course).

    You also have the option of Dr. K. in Lufkin who would likely be a one-stop doc, and although she is not Lyme-literate, would be open to testing.

    Does your MIL use computers? If so, that would sure help in allowing her to do her own research and to be comfortable with her treatment options. I know traveling to doctors is extremely exhausting and can set you back so keeping it simple has to be considered.

    Good luck, Nancy, you will be her favorite daughter-in-law! πŸ˜‰

    Take care…..kim

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