Home Forums General Discussion Rheumatoid returned after twenty years

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  • #308535
    Old Timer
    Participant

    Am 83 years old. Twenty years ago. I had rheumatoid Seriously crippled? both arms affected! hands like claws. I refused doctors meds. joined Roadback before their website. brought both books. found original of Dr. Thomas Mc Phersons in town library! Went on minocin- 150 MG Mon Wed Fri. .Stayed on for two years. Never had a pain since! I ate macrobiotically for first year and a half. Also finally went to Lourdes. complete remission we are mind body and soul. all three have to be attended.

    Diagnosed with third stage breast cancer November 2013. Utilized Western Medical Protocol..Mastectomy, Chemo, and Radiation…worse mistake I ever made! my Rheumatoid is back big time and worse than ever. Along with it I now have Lymphedema of the right arm.

    Fount Doctor who would start me on minuocycline. Taking l50 MG daily. Intend to change over to Minocin. Give me your thinking. Also intend to take Mon, Wed and Fri. So painful now, I started daily.

    Any advice would be helpful

    RBFV Message: New member post has been relocated to the General Discussion area of the forum where replies can be generated from other posters. The Personal History and Progress Threads are intended for members to create a personal journal and this area of the forum will only allow posts from the author and is closed to responses from other members.

    #373725
    Maz
    Keymaster

    @Old Timer wrote:

    Diagnosed with third stage breast cancer November 2013. Utilized Western Medical Protocol..Mastectomy, Chemo, and Radiation…worse mistake I ever made! my Rheumatoid is back big time and worse than ever. Along with it I now have Lymphedema of the right arm.

    Fount Doctor who would start me on minuocycline. Taking l50 MG daily. Intend to change over to Minocin. Give me your thinking. Also intend to take Mon, Wed and Fri. So painful now, I started daily.

    Any advice would be helpful

    Dear Old Timer,

    It is very nice to meet you and very sorry to hear your RA returned after such a splendidly long period of remission achieved with AP, all those years ago, post-chemo and radiation. I have spoken with another lady with exactly the same scenario having been played out for her…successful RA remission from AP, then breast cancer, with chemo/radiation, and then return of her RA. This lady discovered she had Lyme disease and babesiosis after recalling her RA started within a very short time of what she was told (at the time) was a spider bite. Of course, the immunosuppression from the chemo and radiation reactivated her infections. This doesn’t mean you have Lyme and babesiosis, but it seems very possible that whatever infection(s) set off your RA in the first place, managed to regroup and re-attack you after you lost your body’s natural immune surveillance…releasing those “animals from their zoo cages,” so to speak.

    Has your oncologist mentioned that the lymphedema in the arms can occur after lymph nodes are removed when a mastectomy is undertaken?

    I’m not quite sure whether you meant that you’re taking 150mg every day of the week or just on Mon-Wed-Fri as you did the first time you took AP. Can you clarify this point, Old Timer? Sometimes, when the starting dose it too high, there is too much bug die-off and this releases too much bug endotoxin that will increase tissue hypersensitivity in RAers and anyone with an inflammatory component to their rheumatic disease. When this happens, the herxing can become intolerable, and so Dr. Brown would do a little wash-out of a few days to a week, and then re-start the dose at a lower (or sometimes the same) level. This just provided the RAer’s body a chance to eliminate the circulating toxins, which create immune complexes (bound antibody and antigen). These immune complexes can be due to either a flare or a herx, because the mechanism isn’t much different…it’s just that a flare is a random release of bacterial toxin and a herx is more of a controlled, medication-induced flare that is due to too much bacterial toxin being released as the bugs die. Brown’s goal, therefore, was to slowly reduce the pathogen load while keeping the patient as comfortable as possible and sometimes this meant lowering the dose to a more tolerable level. As Brown believed that tissue hypersensitivity in RA was due to a “bacterial allergy,” he would also use Benedryl to lower the histamine response that goes with the herxing. I always found it difficult to use Benedryl during the day as it made me too sleepy, so I’d only use it at night.

    Many RAers here have recognized the importance of helping the body to detox those nasty toxins and this can be done in many ways. E.g. drinking plenty of water every day, the lemon/olive oil detox drink, taking antioxidative supplements (to reduce oxidative stress due to free radicals) like daily Vit C, alpha lipoic acid (ALA), n-acetylcysteine (NAC), liposomal glutathione (anything that boosts glutathione is helpful), non-denatured whey protein (if there is no dairy intolerance)…and many other ways, like an anti-inflammatory diet (e.g. eliminating dietary offenders, like gluten, nightshades, or dairy) or Alka-Seltzer Gold (leaving two hour window well away from abx dose). If you are unsure of how to detox, then you can post another thread asking what others have done or searching old discussion threads by typing in “Detox Methods” in the search box at the top of this forum.

    Do hope it won’t be long until you are feeling your old self again, Old Timer. You’ve been through a lot, but sounds like you are one heck of a fighter and will do what it takes to get yourself back into remission again.

    Severe, swift onset RA as a result of Lyme disease
    Current Meds: Biaxin (500mg BID), Tetracycline (500mg BID), Tirosint (88mcg), Liothyronine (10 mcg), Compounded Liposomal Artemisinin, LDN (3mg), Topical Progesterone,
    Current Supps: Curcumin, Bovine Colostrum, ALA. NAC, Milk Thistle, Super Liquid Folate/B12/B-Complex, Probiotics, Vit D3
    Supportive Measures: IV Myer's Cocktails, IV Glutathione, FIR Sauna, Gluten-free diet, Gym.

    #373724
    Jan Lucinda1
    Participant

    Best wishes to you.

    Jan

    #373723
    Old Timer
    Participant

    Thank you for such wonderful advice. I understand fully what you have told me. True, I started daily dozes of mino first ten days but am now on 150 M-W-F. Question.. twenty years ago, it was the board’s opinion that the third generation of the tetracycline family being minocin was superior to the gerneric Minocycline. FROM READING THE POSTS OF OTHERS THERE SEEMS TO BE NO MENTION OF MINOCIN…… Mary G.

    #373721
    Maz
    Keymaster

    @Old Timer wrote:

    Question.. twenty years ago, it was the board’s opinion that the third generation of the tetracycline family being minocin was superior to the gerneric Minocycline. FROM READING THE POSTS OF OTHERS THERE SEEMS TO BE NO MENTION OF MINOCIN…… Mary G.

    Hi Mary,

    The problem with the original brand pelleted Minocin is that it’s so expensive now that unless one is fortunate enough to get it covered by insurance, it’s cost-prohibitive to most people. It’s still available, but now sold through Onset Dermatologics:

    http://onsetdermatologics.com/Products/Minocin

    There is some tricky history behind why many of us here believe Minocin is now so extortionate, but it’s pure speculation. When the original developer of the drug, Lederle, sold it to Wyeth, it was during the time when Wyeth’s blockbuster drug, Enbrel, was being marketed. Wyeth quickly gave distribution rights of Minocin to another company, called Triax, which is a dermatologic company that sold Minocin in a funky zit pack, along with facial wipes and a skin lotion. The monthly cost then became exorbitant and beyond reach of the average pocket. It’s not clear why anyone with acne would pay around $900 a month for a simple, relatively old antibiotic, as I can’t imagine any insurance companies would cover it for acne when there are so many generic versions available today. Last Feb, Triax then passed the baton to Onset Dermatologics, another company of a similar ilk.

    Many folks then turned to Canada to buy Stiefel brand Minocin, which was a replica of Minocin here in the US, just in a different colored capsule. However, when Stiefel was bought out a couple years ago, production stopped entirely and it’s no longer available through that avenue either. So, instead, some will buy the brand, Akenmin, which is made in UK and can be bought through some Canadian online pharmacies.

    Alternatively, the generics Teva or Watson seems to get the thumbs up here by those who use them. Some also use Ranbaxy (Indian company) with success, but Ranbaxy has been sanctioned by the FDA for improper manufacturing practices and poor quality control. It’s hard to know how anyone will do on generic minocycline…some do very well and others have sensitivities to the capsule dyes or fillers used. Dr. F. in CA seems to increase the dose in his patients who use a generic and don’t seem to be getting adequate response. As far as I know, bio-availability of generics can vary by 20% either way of the brand, so a bit of trial and error dosing is sometimes (not always) needed.

    Severe, swift onset RA as a result of Lyme disease
    Current Meds: Biaxin (500mg BID), Tetracycline (500mg BID), Tirosint (88mcg), Liothyronine (10 mcg), Compounded Liposomal Artemisinin, LDN (3mg), Topical Progesterone,
    Current Supps: Curcumin, Bovine Colostrum, ALA. NAC, Milk Thistle, Super Liquid Folate/B12/B-Complex, Probiotics, Vit D3
    Supportive Measures: IV Myer's Cocktails, IV Glutathione, FIR Sauna, Gluten-free diet, Gym.

    #373722
    Anonymous
    Participant

    Why when I click on “onsetdermatologics” I get a reply: This site has been blocked by the site administrator? I have tried to display it through Google and I get the same reply.
    Linda L.

    #373720
    Maz
    Keymaster

    @linda L wrote:

    Why when I click on “onsetdermatologics” I get a reply: This site has been blocked by the site administrator? I have tried to display it through Google and I get the same reply.
    Linda L.

    That’s weird, Linda. I can see the site just fine when clicking on it. I’ve heard that if you’ve accidentally downloaded a toolbar like ask.com, this can block some sites. Also, if accessing third party sites from a work computer that doesn’t allow this. That’s about all I can think of right now, but if you paste the message you’re getting into your search engine, you might find an answer online or perhaps someone here who is tech savvy can provide an answer for you.

    Severe, swift onset RA as a result of Lyme disease
    Current Meds: Biaxin (500mg BID), Tetracycline (500mg BID), Tirosint (88mcg), Liothyronine (10 mcg), Compounded Liposomal Artemisinin, LDN (3mg), Topical Progesterone,
    Current Supps: Curcumin, Bovine Colostrum, ALA. NAC, Milk Thistle, Super Liquid Folate/B12/B-Complex, Probiotics, Vit D3
    Supportive Measures: IV Myer's Cocktails, IV Glutathione, FIR Sauna, Gluten-free diet, Gym.

    #373719
    A Friend
    Participant

    @linda L wrote:

    Why when I click on “onsetdermatologics” I get a reply: This site has been blocked by the site administrator? I have tried to display it through Google and I get the same reply.
    Linda L.

    Linda L,
    Welcome to the board, and good luck with protocols to get you well again.

    I wanted to learn more about the Onset Dermatologics links, so tried a search. It was challenging, and the first one didn’t work well at all. But finally found a good, clear link with this site address:

    http://www.onsetdermatologics.com/products/minocin

    Hope this works for you!

    AF

    #373718
    Anonymous
    Participant

    Maz, A Friend,
    Thank you. A Friend, even for this website I am getting this: “This site has been blocked by the network administrator. Connection initiated from country Australia”
    Linda L.

    #373726
    Old Timer
    Participant

    Maz Surely need some advice…Would love to have been able to afford minocin as I find minocycline not as good. After five months on minocycline I tried going off for ten days only to be hit hard with inflammation in all joints especially neck and head. Back on mino M 150 MG, W. 100 MG and Friday 150MG. Already inflammation has started to leave. It took two years twenty years ago, Maz will it take two years with minocycline this time? concerned about heaviness of head (check side effects of minocycline) ..don’t know where to turn as I refuse to go to Rheumatologists and their drugs of choice. Have emailed request for ap doctors in my area but no response yet. mary

    #373727
    Maz
    Keymaster

    @Old Timer wrote:

    It took two years twenty years ago, Maz will it take two years with minocycline this time? concerned about heaviness of head (check side effects of minocycline) ..don’t know where to turn as I refuse to go to Rheumatologists and their drugs of choice. Have emailed request for ap doctors in my area but no response yet. mary

    Hi Mary,

    If you send me a PM, I will look to see what AP docs we have listed for your state. I can also PM you Dr. S’s contact info. He’s in Iowa and semi-retired, but very kind to answer phone and email queries from patients and local docs wanting to help their patients. Just click on my User ID and my profile will pop up. Then just click on “private message.” If this proves to be a challenge, just send an email to maz@roadback.org and can send you a list that way.

    Hang in there….it sounds like after 20 years you might need to do an antibiotic rotation – see info in #10 at link below – but it might also be something to do with the generic brand you’re using. This link will provide some other things to consider:

    http://www.roadback.org/index.cfm/fuseaction/education.display/display_id/131.html

    Severe, swift onset RA as a result of Lyme disease
    Current Meds: Biaxin (500mg BID), Tetracycline (500mg BID), Tirosint (88mcg), Liothyronine (10 mcg), Compounded Liposomal Artemisinin, LDN (3mg), Topical Progesterone,
    Current Supps: Curcumin, Bovine Colostrum, ALA. NAC, Milk Thistle, Super Liquid Folate/B12/B-Complex, Probiotics, Vit D3
    Supportive Measures: IV Myer's Cocktails, IV Glutathione, FIR Sauna, Gluten-free diet, Gym.

    #373728
    Spiffy
    Participant

    Ok. I am confused. Target told me that Ranbaxy was out of New Jersy and PAR was out of New York. Watson was out of India. I told her I thought Watson did not sound like it was from India. I thought Ranbaxy was supposed to be the preferred. What brand should I ask for? I only got a partial fill on Friday because they ran out. I am to pick up the rest of the script tomorrow. Should I ask for Watson instead? I wonder why hey told me India. I specifically asked for an American company!

    DR4/DQ8 HLA, bio toxin illness
    Flare fall of 2014...muscle aches, joint pains, fatigue, hair loss, rashes
    Positive RA factor was 71 in January 2015 down to 28 as of September 2016
    IGG food allergies wheat, egg, dairy
    supplements: C and D, probiotics, milk thistle, Turmeric, cod liver oil, methyl b 12 & folate, digestive enzymes, Moducare, chlorella, berberine, LDN, monolaurin, Triphala, Patriot Greens
    MTHFR compound heterozygous
    Igenex IGM Lyme positive
    Minocycline 100 BID MWF

    #373729
    Spiffy
    Participant

    You are quite an inspiration. Stay strong. Keep the faith. You will be in my prayers!

    DR4/DQ8 HLA, bio toxin illness
    Flare fall of 2014...muscle aches, joint pains, fatigue, hair loss, rashes
    Positive RA factor was 71 in January 2015 down to 28 as of September 2016
    IGG food allergies wheat, egg, dairy
    supplements: C and D, probiotics, milk thistle, Turmeric, cod liver oil, methyl b 12 & folate, digestive enzymes, Moducare, chlorella, berberine, LDN, monolaurin, Triphala, Patriot Greens
    MTHFR compound heterozygous
    Igenex IGM Lyme positive
    Minocycline 100 BID MWF

    #373730
    richie
    Participant

    The nonsense continues —-Valeant Pharmaceuticals has acquired the parent of Onset –{PreCision Pharma }who is the parent of Onset –perhaps their is info on their site —
    Richie

    #373731
    Valsmum
    Participant

    Dear Old Timer, I am sorry to hear about the return of your RA and cancer, you are a trooper. As I write I am wearing a Miraculous Nedal from Lourdes given to me by my mother in law , who is 81 years old . She went to Lourdes with her brother when he had cancer. I have worn it everyday since she gave it to me 10 years ago. I feel closer to Our Blessed Mother than I did before I started wearing it, knowing she was given to us by Our Lord to care for us and pray for us when we are sick and down.

    Have you ever tried the autoimmune paleo diet? It cuts out many foods that seem to aggravate my RA. I can’t say I know the casue of RA, but my frozen joints have reduced from 5 to 1 and my sed rate from 65 to 19 and that was a few months ago, it might be lower now. The diet is this: no grains, no processed sugar, no dairy, no eggs, no seeds no nuts and no nightshades. You can vegetables, fruit and grass fed meat and honey. Give it a try for a week, I think you will notice an improvement. I will pray that you get better again, take care!!

    http://www.olrl.org

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