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LJ…I just got the tingles! Thank goodness we have internet these days, so we can all hold eachother's hands through the airwaves. These diseases can be so isolating, but here on the BB, everyone is just…well, there for eachtother. A dysfunctional “family” at times, but which family isn't? I mean, look at Prix….the bad boy of the BB…honestly, if we can just get him off the booze…we'll have to do an intervention on the chat board one night. :roll-laugh: Then there's Potti Mouth Patti…constantly using expletives that the software picks up. Sheesh…all mad here, but loving life and there for eachother in spite of our challenges. So don't be shy…be as mad as you want. We'll still love you. 😉
Peace, Maz
Too funny, Maz! :roll-laugh:
Good luck on your trip, LJ. Please let us know how it goes and see if you can convince Dr. S. to postpone retirement until he trains a suitable replacement.;)
kim
Hey LJ
Welcome! Being a midwestern too,I am super jealous of your visit to Dr. S. He sure sounds awesome. I look forward to hearing how great you will be feeling very soon! I love Chicago but not DA Bears. I may be eating crow soon with our #4, Farve gone. Who can think about football when you have RA:sick:
Stay tuned frequently to the board. There is so much great information . Things are usually warm & fuzzy here and our “cyber family” loves us just the way we are:roll-laugh: It is a great place to help you cope with all of the stuff that comes with this package. We may even have some fun here now & then, despite our ups & downs.
I am sending well wishes your way!
Happy days!
Patti or PMP:roll-laugh:
Thanks PMP!
Wisconsin is crazy for not respecting Bret, I hope this backfires for his sake. 😎 I will try to keep the site updated on my progress. My main concern is to get off of this steriod, find the best supplements and probiotics while on treatment, and spread the word to others that may deal with this. I am in the process of writing letters to rhemys here in Chicago to see who will follow-up with this treatment with me.
I have no choice but to go to Iowa. Who wants to live like this everyday? My brother has had to bathe me, put on my clothes, drive me around. It's very humbling. I believe this is here to make me a much stronger woman. My tolerance for nonsense has left and I have stopped being a “yes” girl by taking care of everyone. I have to make things about ME for a while.
Has anyone heard about the Infrared Sauna's side effects? I was told that I needed to sweat out toxins in my bloodstream which is supposed to help RA/Lupus patients.
LJ
[user=738]lajones2[/user] wrote:
I am in the process of writing letters to rhemys here in Chicago to see who will follow-up with this treatment with me.
I have no choice but to go to Iowa. Who wants to live like this everyday? My brother has had to bathe me, put on my clothes, drive me around. It's very humbling. I believe this is here to make me a much stronger woman. My tolerance for nonsense has left and I have stopped being a “yes” girl by taking care of everyone. I have to make things about ME for a while.
LJ, Road Back has a list of AP doc for Illinois and we also have a few members on the site from your state who may be able to make an AP doc recommendation. Would you like me to send you a list to help in your searches? By going to see Dr S, this will give you a great start to have the IVs, but if you can get an AP doc nearer to you to manage things after, this would probably help quite a bit.
If this provides you with any hope, at all, I was in the same situation as you in the beginning…unable to dress, shower, brush my teeth, open my jaw to chew, press buttons on appliances…nada. It was horrendous in the early months and, as you say, one of the most humbling experiences of my life….total surrender. The depression was bad, too, but was the first thing to lift after I started antibiotic therapy. I'm now about 95% improved most days…knees and ankles not too painful, but still a bit swollen. I didn't have IVs, which may have helped me improve faster, but the orals alone have worked very well.
Not long now and you'll be in such good hands with Dr S…one of the most compassionate docs you'll ever meet, according to all who have been to him. Your brother must be an earth angel, too! He deserves the dude icon! :dude: And one for you, for hanging in there! :dude:
Peace, Maz
PS Hopefully someone will see your sauna question…haven't used it myself, so unable to comment on that.
Maz,
Thanks so much. Yes I would love to see if AP doctors are here, please forward me the link or list. I called some on the list that I had and none stated that they did the prototcol. So maybe there's another list that I don't have. I feel optimistic that I will feel better soon, I just feel iin my gut! You know my jaws are horrible! I have been to the dentitist to see if I needed my fillings (amalgam that is) shaved down. I feel like I have no cushion in my jaws. Has that gone away for you?
LJ
LJ, if you click on “1 new message” in the top right, beside where it says, “Logged in as…” you'll find a private message to you with the Illinois AP doc listing.
My jaw pain came on with the swift onset of my RA, so I knew it was connected pretty much right away. After a month or two on antibiotic therapy (I started on heavy doses for Lyme Disease), the jaw pain disappeared. If you're sure it's connected with your RA or Lupus, there is a good chance yours will clear up, too.
Peace, Maz
LJ – Far-infrared saunas are recommended by many for eliminating toxins (and I believe also give some relief). You can read this at http://www.rheumatic.org site. Also recommended are Hydrogen Peroxide baths. Recipe repeated below. Lynnie
Soak in a bath of 2 cups Epsom salts and 2 x 16 oz bottles of hydrogen peroxide for about 30 minutes. It helps rid the body of toxins deep in tissues and kills a wide spectrum of microbes. (First, soak in tub about 5 minutes before adding the peroxide and Epsom Salts to open pores.) This can be done at least 1 to 3 times per week. Take no vitamins 4-8 hours before bath. The hydrogen peroxide may be increased later to 3 bottles per bath if well tolerated.
Be well! Lynnie
Palindromic RA 30 yrs (Chronic Lyme?)
Mino 2003-2008 100mg MWF - can no longer tolerate any tetracyclines
rotating abx protocol now. From Sep 2018 MWF - a.m. Augmentin Duo 440mg + 150mg Biaxsig (roxithromycin). p.m. Cefaclor (375mg) + Klacid 125mg + LDN 3mg + Annual Clindy IV's
Diet: no gluten, dairy, sulphites, low salicylates
Supps: 600mg N-AC BID, 1000mg Vit C, P5P 40mg, zinc picolinate 60mg, Lithium orotate 20mg, Magnesium Oil, Bio-identical hormones (DHEA + Prog + Estrog)I have a sauna, but I must admit I don't use it enough. Anyways, I have been told people can herx with just the sauna. I defintely feel better the next day after I sit in it. It's and easy detox. I have a little portable one and it works great!!
wendi
I went to a infrared sauna facility and they said if you have RA do not use. I used it anyway and felt ok, just a little more swelling. I will do the baths and occasional saunas. I am trying to meditate each morning to stop the anxiety from me thinking about this trip. I can't wait. Thanks to all of you for your advice.
Love
LJMichele,
Thanks so much for sharing your progress in your wonderful post! Posts like yours help many of us remember that joyful time when we realized there really was “light at the end of the tunnel” and we were truly on the right road.
For some of us, we can get close for a while… then stumble. But when we pick ourselves up, dust ourselves off, and then look for that proverbial “needle in the haystack” that is blocking our more full recovery, I believe we can find that thing that needs addressing, and continue on that road to recovery.
Thanks again for your beautiful post!
AF
Michele,
I am sooo happy that you're feeling better and returning to meaningful living! I used to play flute and piano. What instrument(s) do you play? (sorry if you told me and I forgot).
I hope you'll post a testimonial at your 2 year mark ….. I plan to. I continue to do see slow improvements – now in my fingers.
Take care,
SusanLJ,
Thanks for popping in to say hello. Your brother is a very GOOD brother! A keeper! Dr. S is the nicest Doc and will do proper testing for RA and caring followup. It is much better to visit him in September than in the middle of a horrible December ice storm like I did last year! 😯
AF,
You have so much valuable input and perspective. Glad you helped me with some of those puzzle pieces!!!
Sue,
I do plan to post at some point the whole saga of this road back journey. I will wait until all the pain is really gone on a more significant basis. I move to phase II MP soon and I know that will shake a whole new set of l-forms from their nests for my immune system to whollup! 😕
Michele
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