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  • #461326
    Lynne G.SD
    Participant

    Hi Shannon;
    Lyme can mimic SD right down to skin hardening.It’s amazing the papers you can find on just about anything if you are in med school.While there a couple years ago I was able to e-mail some papers to myself and have them filed somewhere as I had no access to the info from my own computer.Naturally they are all in French but I was able to find some Pub Med etc. articles that were similar.When I find time to go digging I will post them for you.
    For now don’t panic about SD,it just might be your Lyme trying to come back and haunt you.
    P.S I also had/have Lyme that seems to be persistant

    #461301
    Lynne G.SD
    Participant

    Hi Shannan;
    I had a very bad case of SD and am in full remission.I’m in my 19th year of AP and loads of probiotics.I took 200mg Teva mino but am now on 100 every day or so.Sometimes when I am super busy I forget to take it for a few days and wouldn’t you know it,I get the tingling and a bit of ache in my hands that reminds me pretty fast.
    If you are just beginning the terrible SD route you should be able to nip it in the bud quite quickly.The longer you wait,the longer it takes to get better.It took me a good 2 years to get un petrified and almost 4 to get total finger dexterity.
    Hope this help,Lynne

    #461175
    Lynne G.SD
    Participant

    Floating stools can be caused by lack of the proper digestive enzyme needed to break down fat,fat always floats. If you make chicken soup from bones left over from a roast chicken you will see globules all over the top.

    #461154
    Lynne G.SD
    Participant
    #461148
    Lynne G.SD
    Participant

    In Norway it seems they are using this for SD,or so I have heard.Will let you know what I find out as soon as I have time

    #461130
    Lynne G.SD
    Participant

    I think that it is our disease that causes us to get food sensitivities.All the people I know who have them never used to have any problem.eating anything.As my SD progressed so did the number of sensitivities .In the end,all legumes,citrus,cow everything,lamb,asperagus were bad news.Slowly I was able to go back on them but even now I can’t have dried legumes but green peas,been are o.k.
    Weirder than this were the phantom smells that still linger.I love cucumbers but for many months I could smell them everywhere and you know it’s not your imagination when cleaning the cat’s litter box and smell cukes.For the last few weeks I have been smelling something with a chemically sweet scent but can’t identify it

    #461102
    Lynne G.SD
    Participant

    Hi S.
    This month marks my 19th year on AP.I did have light fibrosis in one lung but it left around year 3 of AP.Mino works in many more ways than just an antibiotic and is worth a try unless things are bad enough to warrant a transplant.If you are young and have many years ahead of you it will probably have to be done again at some time.Do a little reading on these links for the explanation of how mino controls things.Lots of info here and if you don’t have a good science background you will want to shake out your brain now and then. hehehe but a second reading should make things clearer..Mino/doxy/clindamycin/Zithromax will work IF you have an infectious cause,many do but your average doctors certainly will not take the time to find out.If you have an infection you will know because you will get a Herxheimer’s reaction.Everyone else will react well to just mino/doxy because it controls the Interlukins and Transfer Growth Factor -1b
    Links on Interlukins involved in SD… our worst are 1,mostly 6 and 8 but 10 is your friend

    Primer on SD and how Mino works as a very good anti inflammatory,not as an antibiotic.New drug hopefully to be here soon called Resunab will be a super duper anti inflammatory ,an artificial cannabinoid .It is becoming clearer every day that inflammation is the likely cause of all disease and getting it down is of most importance to feeling better.This is one of the reasons that good diet is so important.
    Those of you that have a good science background will be able to understand all these links.Others will have to read slowly more than once but you will get the gist of it.I have years of medical training but still have to shake out my brain after reading too many

    https://www.sclero.org/scleroderma/causes/interleukins/a-to-z.html NO1
    https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3226076/ No1

    https://www.news-medical.net/health/What-Does-Interleukin-6-Do.aspx NO1
    https://www.ncbi.nlm.nih.gov/pubmed/8315568 NO1

    https://www.ncbi.nlm.nih.gov/pmc/articles/PMC408350/ No1
    https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3136898/ No2

    https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2787259/ No3

    https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3136898/ No4

    http://www.sciencedirect.com/science/article/pii/S0022202X15425217 NO5 Transfer growth factor/tissue factor

    http://www.pnas.org/content/93/24/14014.short this refers to NO4

    http://thorax.bmj.com/content/early/2011/10/24/thoraxjnl-2011-200499.short refer to NO4

    http://europepmc.org/abstract/med/23870534 refers to NO1
    https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5075140/ refer to NO1
    https://www.degruyter.com/downloadpdf/j/infl.2013.1.issue-1/infl-2013-0002/ infl-2013-0002.pdf

    https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4167643/

    https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2785020/
    MINO/DOXY

    https://www.hindawi.com/journals/mi/2015/329418/

    https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3651660/
    https://www.ncbi.nlm.nih.gov/pubmed/22306153
    http://medcraveonline.com/JNSK/JNSK-02-00073.php
    http://journals.lww.com/theneurologist/Abstract/2017/07000/Antineuroinflamm ation_of_Minocycline_in_Stroke.4.aspx
    https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5548869/
    https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5075140/
    INFLAMATION is inflammation regardless of where it is,brain,finger,eyes etc

    #461078
    Lynne G.SD
    Participant

    Hi Sue;
    I did both IV and oral and found oral worked just as well and I did the dosage the same way as you are contemplating.It can be hard on the stomach so take it with a meal to avoid that problem.I just hated the metalic taste in my mouth but that happened with the IV just the same.

    #461021
    Lynne G.SD
    Participant

    Hi Shannan;
    I have long standing Lyme and probably will just have to live with it.I did use the heavy duty antibiotivs and hoped it was gone also.Not so,every now and then it wants to come back with it’s pal SD.Now I am only using mino or doxy and it pretty well stays under control.Never count on Lyme to be gone if you had it a long time before getting a diagnosis.I am sure that Maz will see your post and give you good advice,as she always does.

    #460990
    Lynne G.SD
    Participant

    Hi Angelina;
    I live in Canada and we can’t get any pelleted either.Our Teva generic works just as well(thank God) but I have heard that Teva in the U.S is not good.Phil is the guru of minocycline so scroll down and look at his old posts.

    #460989
    Lynne G.SD
    Participant

    I forgot to add that I take 3.5ml of LDN every night

    #460984
    Lynne G.SD
    Participant

    Hi EFG;
    Could you get a new family doctor?I had my best success with brand new doctor fresh out of school as they think oustide the box more than the old onesI really don’t think that most doctors know how mino/zith work other than being an antibiotic.They control the Interlukins that cause inflamation as well as Transfer Growth Factor 1-b that causes out fibrosis.Being in med/school for the last few years has given me a chance to find lost of great info on how these drugs work.Mind you all I have is in French but I have found comparable English versions mostly from Pub Med or Medscape.I can inundate you with links if you want the info.
    Re LDN,doctors here know even less and prescribe even less so I just get mine directly from Ian who heads up the “buylowdosenaltrexone.com “site as well as the ” lowdosenaltrexone4pets ” site. I costs me around 50$ for 10 50mg tablets that I simply disolve in 50ml of water.Between me and a trio of old arthritic cats one tablet lasts about 5 weeks.Cats are a good 50% better when on it but I am not sure whether it helps me or not but I am not about to go off of it to find out if I regress.I think it’s probably the LDN that alows me to only take 100mg of doxy a day or other day

    #460980
    Lynne G.SD
    Participant

    Hi EFG;
    Do you think that your family doctor could write a prescription for you? Did he/she notice how well you were doing on AP?If your insurance won’t pay for your mino you could get it here in Canada as it is relatively inexpensive.Despite having SD I have not seen a rheumatologist since 2003 and only see my family doc once a year to renew my prescription.He knows that I know way more about this disease than him and that I know which antibiotics are needed.We both agree that seeing a rheumy is a waste of time and money as he is sure that no rheumy would ever prescribe antibiotics

    #460834
    Lynne G.SD
    Participant

    Hi Richie;
    I know what you mean about being a New Yorker as I have an aunt and cousins there who think just like you.Kind of makes me laugh.I suppose you would say we have socialized medicine and education here.My yearly cost was under 6000$ as Quebec makes it very easy to further one’s education.We also have almost free day care,somewhere between 7 and 10$ a day depending on how high one’s salary is .
    Many antibiotics and probiotics come from the soil and decaying matter in forests.Animals know all about it and us humans have to figure it out by watching them

    #460832
    Lynne G.SD
    Participant

    Hi Liz;
    You have not heard from me because I am running in 10 directions at once.Just got back from the clinic,worked 07:00 to 15:00 and now I have to hit the greenhouse and clean plants for this weekend’s show in Montreal,then I have to find a substitute dance teacher for Saturday as I won’t be here.It’s only for 5 gruling hours but not a full day so that (hopefully) should not be a problem.
    I was only contemplating trying those probiotics as I use myself as a test dummy before trying things on animals.Let me know what you know as one never knows what might come in handy one day

    RICHIE,
    I get the feeling that you have not seen the documentaries done by Dr. David Suzuki,Canada’s top biologist and environmentalist.For years he and his crew have been documenting the Mountain Goats in British columbia.He clearly explains the probiotic pools where they go to drink until their systems get back in sinc.
    I have not been sitting on my fat ass for the last 15 years of remission but have been back at the veterinary uni. in St. Hilaire.I had so many credits from my other degrees that we(uni. councillor and me) decided that I should apply them to a vet. degree.Now working at our local clinic as a part time tech.If I can find that film I will send it.

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