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Just needed to vent that I got my wrist well and truly slapped on another board (for people who have my original diagnosis). What's more, my post was in the forum that is specifically dedicated to discussion and information on Antibiotic Therapy (thanks to Pip). I answered someone who was interested in AP with my personal experience and a personal recommendation to read the Scammell book if she's interested to take it further. I only visit that board to occasionally post my results and to offer anyone who's interested (especially in Oz) information and my own experiences. It's hard to understand the resistance. I have even just been told it would have been better to have put a suggestion to also visit this website into a PM rather than on the open board. What is wrong with people that they seek to censor rather than share???????????? Thanks for letting me vent. Lynnie
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)Lynnie,
I recently tried to help a woman who is in her 30's and has scleroderma. Her mother died of it . This woman has raynaulds, calcinosis, has had 3 esophagal dilations or whatever the name is for that. she has stomach probs, you name it. Well i took her tons of info and even put these sites into her computer. She is choosing not to even research AP or these sites.She is going by the almighty rheumy treatments and has lived with this since diagnosed at 19.
We can only do so much and if hands get slapped for us trying to help , so be it. I, too, dont understand either why so many just choose to sit still.
My family doc has a sister with severe RA. When this started with me, i took him all the info i could and even bought him Henry scammels books. He did prescibe abx for us right away , i think due to sympathy. Bottom line in the end, his sister is still with her rheumy on the traditional meds . He is a doc AND her brother so i dont get it. On top of that, he was more than willing to prescibe mino or doxy to us , including my 12 yr old son because they are safe drugs.Having said that and knowing these are safe, i will never understand what the safety is behind his sister on methotrexate, pred, plaq etc.
If i cant convince a doc for his own sister, well i guess that says it all.
Also, i had a argument with top rheumies at a childrens hospital. When i took my son in, i thought they may agree to AP because i had pos myco tests and strep tests. Yea right, they told me all the lupus patients have chronic infections. I told them if they treated the chronic infections , they may never have a disease or at least stop it early. They were so mad at me and finally i just asked them how they look in the eyes of these kids , knowing they have chronic infections , and never treat them and how they sleep at night. I asked them why they became rheumies. Well to help children. They know they help nothing in the end but they make $600000 a yr. Thats what its about to me. I said they would do more for these kids if they went out on their own and treated these infections. But they will lose their almighty dollar. My last words were” i hope you never have to walk in these shoes” and we never went back . They also lied to me as the emerg doc told me they test for mycoplasma. The rheumies told me they didnt. :headbang::headbang::headbang::X
It all makes me mad and sick.
You did a good thing trying to help and i have done it too. Whether someone is receptive to it is another story.
Casey
I can relate. Most everyone who knows me still thinks I'm nuts taking antibiotics for my health condition. STILL. Even after nearly two years and the observable fact that I can now function as I once did. Until the higher beings (doctors and pharmaceutical companies) start showing commercials on tv touting A.P. as a treatment, I know people who will still be waiting for me to come to my senses…:?
I know people who believe in A.P. as a result of my success, though. Some of my friends have enough sense to embrace my choice and accept my improved health.
People on A.P. or M.P. are mavericks. There are too many sheep out there. Being independent minded scares the sheep. Keeping with the animals… remember: “You can lead a horse to water…”
Jenn
Lyn,
I know you understand that people in pain sometimes strike out irrationally. I, personally, appreciate the fact that you have been willing to share your knowledge and experience….even at times when it was not convenient for you to do so. I don't mean to judge anyone, but if your action comes from a pure place in your heart and mind you shouldn't let yourself be troubled by “troubled spirits.”My frustration was with appropriate discussion in an appropriate forum being, in my view, inappropriately censored. Yesterday I was mad, today (after a good night's sleep and a great cup of coffee) just a little sad. :crying:
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)MP = Marshall Protocol. However, this was not the Board I was referring to.
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)Hello my name is Mary, and i have just joined the group as i have just been diagnosed with MCTD. It is scaring the hell out of me at the moment, as I am reading so much on the internet that is conflicting with what you are saying regarding the antibiotics. but i am very interested in the results that seem to be happening to the people in this group. i live in perth western australia, so feel a little isolated. is there anyone out there from Perth. Looking forward to chatting and sharing information.
You are doing a great job Lynnie. Happens all the time. It will take time but I live in hope that things will change or it is going to be a very nasty world to live in if someone does not do something. Cannot understand it either. You have lots of friends here and in Australia I am sure.
[user=441]marymarsh[/user] wrote:
Hello my name is Mary, and i have just joined the group as i have just been diagnosed with MCTD. It is scaring the hell out of me at the moment, as I am reading so much on the internet that is conflicting with what you are saying regarding the antibiotics. but i am very interested in the results that seem to be happening to the people in this group. i live in perth western australia, so feel a little isolated. is there anyone out there from Perth. Looking forward to chatting and sharing information.
Mary – welcome to the group! There are a number of people who frequent this bulletin board with MCTD who are on the antibiotic protocol (AP). So, if you have any questions, please feel free to start a new discussion thread, if needs be, to ensure your posts are picked up by others able to make a reply.
Lynnie is RBF's wonderful AP volunteer link to Australia and we are all here to offer you support, understanding first-hand how it feels to be scared and unsure when receiving such a diagnosis.
The website is full of great information and, if you can also manage to get a copy of Henry Scammell's book, “The New Arthritis Breakthrough,” these will provide you with a very good start to understanding the rationale for antibiotic therapy.
Wishing you all the very best on your road back!
Peace, Maz
Thank you for the welcome Maz, its good to know there are others out there who understand. I have already ordered the book from Amazon, but so far it hasn't arrived. Mary
Mary, You may want to start a brand new thread so you can attract a bit more attention. Also, if you click on the Australia hyperlink just under your picture you will get the list of members who identified themselves as neighbors. The rest of us would like to live in Oz, or at least to visit, but alas…
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