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  • #466939
    Lynne G.SD
    Participant

    Hi Curly;
    I used both the IV and the oral and found the oral worked just as well and saved me time.I used the same dosage with the oral on and off for a couple years depending on how I felt.

    #466878
    Lynne G.SD
    Participant

    OH LA LA.Iron,calcium never should be taken with most antibiotics.

    #466877
    Lynne G.SD
    Participant

    Hi SK;
    For the last few years I have been saying that Interlukins and TGF 1B are the culprits in SD.I have a lot of info on this but it is too much to post here.If you want it send me a private message with your e mail address and I can send it to you.

    #466852
    Lynne G.SD
    Participant

    Hi S;
    I have been on the usual AP since 1999 plus a Lyme protocol that used 6 different antibiotics 3-4 years and doing just fine.As phil says,probiotics are a must and I take 10 to20 billion every other day while taking heavy doses of antibiotics.Today I only need to take 1 doxycycline every 2 or 3 days and just eat a healthy diet.
    Doctors are fast to put most people on immune suppressants but never tell them that most of them are as hard on the gut as antibiotics….. go figure.

    #466820
    Lynne G.SD
    Participant

    O.K I will send mail as soon as I get your add. I am….lynneandsantos@citenet.net

    #466817
    Lynne G.SD
    Participant

    The same happened to me.I had to get a G mail account.

    #466816
    Lynne G.SD
    Participant

    Hi Laurie;
    Yes,I am still on doxy.The original minocin no longer exists.For a while Canada has a Teva mino that was very good but they quit making it and it was replaced by Apotex(APO) which caused my SD to come back in a few months.We can get Teva doxycycline here and I found it was just as good as the mino.I only need one tablet every other day to keep my remission.I have a library of info on Interlukins and TGF.If I posted some of the really good stuff here it would take way too much space. so I could e=mail it if you wish.Just ask me for my email.In the mean time you can start to educate yourself by doing a little Google.Something like this….what interlukins are involved with scleroderma or what is TGF 1B or how is TGF 1B involved in scleroderma.
    I can bet that doc does not even know about Rouleaux but he should be aware of digestive enzymes.You can get Artimisinin on Amazone,digestive enzymes at your local GNC store and Nattokinase on Amazone

    #466809
    Lynne G.SD
    Participant

    Hi Laurie;
    I live in Ontario and was a patient of DR A.I don’t think she is doing AP anymore as the Gov. was causing her major headaches.A client died mainly because she did not follow doc’s rules,her family complained and the whole mess went to court(I think) So the Gov. cracked down on her.This is rediculous as there is not one med that is approved for SD.They are all “off lable”.Before finding her I just went to a farm supply store that sold tetracycline for animal use..It is the exact same thing as humans take and I have a big enough medical background so I was not worried,this was 25 years ago so I don’t know if it is still possible to get Tetra over the counter.I did respond to it and after a few months I told my sweet GP what I did.He gave me a prescription for Mino providing I did the studying and report back.Any chance that you might find an integrative doc?.Just make sure he/she is open to AP before running around.Most docs will tell you that SD is not caused by an infection but knowing what I do from veterinary medicine I know that an infection can knock down the immune system so much that you can come down with whichever disease you are genetically predisposed to.On the plus side the Tetra family and Zithromax can attenuate Interlukins and Transfer Growth Factor 1B.We deal with IL 1 and 6 that cause the inflamation as well as TGF1B that brings on the fibrosis.I bet your doc does not know of anything that will counter act these 2 devils.If your brother has Raynaud’s he could try Nattokinase (amazone) as it breaks up the Rouleaux that damages fine vasculature.Digestive enzymes got rid of my slow motility that causes Gerd within a couple weeks and it has stayed just fine for over 16 years.I found the best was a cheap one made by GNC,240 capsules for 30 odd $.This sure beats expensive meds .

    #466791
    Lynne G.SD
    Participant

    Hi Bella;
    I found out the hard way that I could not take mino without having food in my stomach first.Seeing as how your daughter is doing fairly well she might be able to use doxy as it’s easier on the system.Not quite as effective if one is in a bad way.I had to get off on mino as I had bad hyper pigmentation.I have been on doxy for 6 years and doing just as well as on mino.My dark purple/grey skin is now 80% better.

    #466752
    Lynne G.SD
    Participant

    Hi DMW;
    I have been on AP for over 20 years and have experienced just about everything there is.Can’t chat now as I am running out the door.Itching from head to toe when my skin was hardening and then the same as it loosened.Doc told me it was caused by the nerves in the skin.Pressure on them when tightening but they eventually got used to it.The loosening gave them wiggle room so it started all over again.Chat later.

    #466642
    Lynne G.SD
    Participant
    #466635
    Lynne G.SD
    Participant

    Here is the latest news from the Global Lyme Alliance.Good reading

    https://mail.google.com/mail/u/0/#inbox/FMfcgzGlkjWzMHlPwbFfjfMvJVPjhklX

    #466634
    Lynne G.SD
    Participant

    Hi Shari
    Here is the latest info from the Global Lyme Alliance,thought you might like to read it.
    How are you doing now?

    https://mail.google.com/mail/u/0/#inbox/FMfcgzGlkjWzMHlPwbFfjfMvJVPjhklX

    #466595
    Lynne G.SD
    Participant

    Hi Mouse;
    I had the pfizer vaccine and only had a sore arm for 2 days,just like any other vax I have received

    #466557
    Lynne G.SD
    Participant

    I find it funny that doc prescribed Plaq as it can lower platelet count.I take 1 doxy every other day.Got too many blue spots on my face from mino.Maybe you could lower your dose or switch to doxy.Found this info

    https://www.mayoclinic.org/diseases-conditions/thrombocytopenia/symptoms-causes/syc-20378293

    https://www.medicalnewstoday.com/articles/314123#diagnosis

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