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This topic contains 13 replies, has 4 voices, and was last updated by  RevereRosie 3 years, 4 months ago.

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  • #308373
    RevereRosie
    Participant

    I was recently diagnosed with R/A with overlapping Scleroderma. I am 69 years old. I kept complaining to my Primary Care doctor of the pain in my hands and feet and the swelling for 10 months! Now my wrist hurts sooooooo bad. He finally gave me a referral to a Rheumatologist and he gave me cortisone shots in my shoulders and I felt like a new person the very next day but that was just a temporary fix as the pain returned shortly thereafter. The Rheumatologist also put me on Medrol for four months. I started to vomit. And that horrible moon face and a lump on the back of my neck…….Oh my.

    Finally, my Primary Care took over again and suggested an antibiotic therapy of Minocycline twice a day, every day. 100 mg.
    I started this treatment 7 days ago and so far, the pain is the same. From what I read, it takes time to kick in or it has to get worse before it gets better. I’m also experiencing feeling like I’m losing my balance when walking.

    I’ve been reading all the posts on this site and most are only taking this drug MWF and once a day???? I’m concerned that my dosage is too high. I have very sensitive skin and allergic to so many things.

    I read the book “The New Arthritis Breakthrough by Henry Scammell. I was very impressed. Searching online all about Minocycline is how I came across The Road Back Foundation. Glad I did.

    I appreciate any suggestions any of you may have for me. I’m very concerned and worried about this disease.

    Thanking you in advance for your time and reading my post.

    #372696
    lynnie_sydney
    Keymaster

    Hi Revere Rosie and welcome.
    Many people with Scleroderma do well on daily dosing (what is called the Harvard Protocol). Am sure SD patients will chime in here. Pulsed dosing (MWF) tends to work well (albeit slowly) for those with inflammatory forms of arthrides, so that the “herx” response doesn’t promote inflammation that will stop the antibiotic reaching its target and/or become intolerable. With your overlapping diseases, it may be a case of you and your PCP monitoring to see whether that happens and to dial dose back as necessary.

    It is great that your PCP is willing to assist you in this way. If he/she is not experienced in these protocols he/she might like to consult with Dr S, a very experienced (now semi-retired) AP doctor based in Iowa who will freely consult with patients’ own doctors. If that is of interest, details can be Private Messaged to you.

    Be well! Lynnie

    Palindromic RA 30 yrs (Chronic Lyme?)
    Mino 2003-2007 100mg MWF - can no longer tolerate mino/doxy
    abx: MWF a.m. Augmentin Duo (1/2 x 875mg) + 250mg Klacid p.m. Cefaclor (1/4 x 375mg) + 250mg Zithromax. Annual Clindy IV's
    Diet: no gluten, dairy, sulphites, low salicylates
    Supps: 600mg N-AC BID, 1000mg Vit C, CoQ10, P5P 40mg, zinc picolinate 60mg, B3 1000mcg, EPO 1000mg, Lithium orotate 20mg, Magnesium Oil equiv 400mg
    Topical bio-identical estradiol + DHEA caps + Progesterone caps

    #372697
    Maz
    Keymaster

    @revererosie wrote:

    I was recently diagnosed with R/A with overlapping Scleroderma.

    Did you have positive labs for both diagnoses, RevereRosie? Am thinking you must have, because most docs don’t like to diagnose scleroderma (SD) until those labs turn positive. This is pretty awful for folks who have all the signs and symptoms of the disease and don’t get any confirmation of what is going on. This is likely because they really only have palliative treatments and they don’t want to put a name on the disease and worry patients.

    It’s not unusual for rheumatic diseases to overlap…when they do, it’s often described as “mixed connective tissue disease,” but it’s really a bit of a garbage diagnosis, because they really don’t know what it is. In fact, many MCTD patients report later they discover that they had Lyme disease all along, because it can look like and mimic everything under the sun…Lyme is called, “the second great imitator,” for that reason (the first was syphilis, a similar type of spiral-shaped bug but not nearly as genetically complex as Lyme).

    Finally, my Primary Care took over again and suggested an antibiotic therapy of Minocycline twice a day, every day.100 mg.

    Wow! You have a very enlightened PCP to suggest AP! Do we have him/her listed as an AP doc provider, I wonder?

    I started this treatment 7 days ago and so far, the pain is the same. From what I read, it takes time to kick in or it has to get worse before it gets better.

    Yes, usually herxing will start within a several days to weeks or even a month or so out. Really depends on so many things unique to each person. Worsening symptoms are a good sign the treatment is working and hitting the intended target, though it’s not much fun to go through. This is why learning how to detox is suggested and practiced by many here. Herxing seems to be relative to how much inflammation the rheumatic patient is dealing with, too…so if there is little inflam, then herxing will be manageable. The reverse is usually true when inflam is high. Herxing can go on for a short period or months…again, different for everyone. Dosing can have a lot to do with degree of herxing and also if the person is on any DMARDs or heavy, masking anti-inflam meds, like prednisone, then herxing will be less noticeable. In lower dosing schedules while on immunosuppressants, the tetracycline antibiotic won’t work so well as an antimicrobial, because these abx don’t kill the bug outright and just disable it…the immune system then does the killing and clearing away of bug debris.

    I’ve been reading all the posts on this site and most are only taking this drug MWF and once a day???? I’m concerned that my dosage is too high. I have very sensitive skin and allergic to so many things.

    If you’re still using prednisone, then daily dosing may not be too high for you (as mentioned above). Lower dosing is usually optimal in situations where the person is starting with a clean slate.

    The goal of most people who are taking immunosuppressants when they begin AP is to get off the other drugs, but to stop them suddenly to start AP can result in treatment failure, due to drug rebound and herxing as the immune system wakes up again….a double whammy. So usually folks will stay on their other drugs, get stabilized on AP and then slowly taper off the other drugs, one at a time. In the case of pred, those last 5mg can be very challenging to get off and can take up to a year to do it for some.

    I’m also experiencing feeling like I’m losing my balance when walking.

    Vertigo/dizziness is a common side-effect of minocycline, because it has greater lipid solubility than other tetracyclines and crosses the blood/brain barrier well, likely having some effect on the nervous system serving the ears. If it becomes worrisome for you (and if still on pred), a suggestion would be to ask your doc if you can start lower and take it just once in the evening, a couple hours before bed (not just before lying down as refluxed med or a stuck cap can burn the esophagus – important to drink it with a full glass of water and remain upright for a couple hours after). If once a day is still too much, then you may need to ask your doc if you can do the pulsed MWF approach. You may need to do this if herxing becomes unbearable for you, anyway. 😉

    It’s all a bit of trial and error RevereRosie. In general, the SDers try to manage the Harvard Protocol of 100mg twice daily to get as much immune-modulation as possible. With the RA overlap (and possible high inflam), starting lower and slower and gradually working up to tolerance may make more sense. It’s much easier to dial the dose up slowly than to dial it down when herxing. Also, in the Minocycline in Early SD trials, the dose was 50mg twice daily for the first month and then increased to 100mg twice daily thereafter.

    http://www.roadback.org/index.cfm/fuseaction/education.display/display_id/113.html

    Hope something here might help, Rosie. 🙂 If you stick around here, you’ll have the hang of it all in no time.

    Ooopss…seems my reply overlapped with Lynnie’s (see above)…sorry about that.

    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.

    #372699
    Lynne G.SD
    Participant

    Hi Rosie;
    SD is a stinker but Lyme is even worse so please,please get tested as that will totally change any antibiotic protocol.
    I am sure you have read a lot of posts her about Lyme and where to get tested as most tests are useless.
    Now let’s assume you don’t have it,are you aware that SD can give the exact same symptoms as arthritis,irritable bowel,,fibro and many other immune diseases.A lot of SDers think they have multiple diseases but it really is just SD and it will eventually affect every part of the body in some way or an other.I just love my teeth breaking off at the gum line.Sheeeeesh!.
    If you have true RA you need to start AP very slowly but if it’s SD you really need to hit it hard and fast with 200mg Mino a day.If it is true SD you will not likely Herx but if you have Lyme like I do you will really get hit hard.Since my SD was bad I just sucked it up and tried to ignore my constant herx.I only found out about Lyme after 12 years on AP with almost constant herxing that goes with it.
    You really can’t follow any example from others because this game has no rules and you are the one that has to figure out what works for you.It’s trial and error but the more you read the easier it becomes.Learning the lingo is half the battle as different protocols use different meds and abreviations are normal to us ole timers.As you probably see by my spelling mistakes,I had to learn English along with Medicalese O, La La!!!.
    Take a look at different protocols to see what might appeal to you and whether you think one or an other might be best suited to you.Regulat AP discussed on this board is known as the Harvard Protocol but if you Google antibiotic protocols you will find many such as the CPN, Wheldon,Marshal or CIR.I did Harvard for 14 years and am now on CIR with better results.
    You will feel sooooo lost but there is always someone here who can help you along this road.Pay attention to Maz and A Friend who are worth their weight in gold

    #372700
    RevereRosie
    Participant

    Wow, Thank you all so much for leaving comments and suggestions. It is nice to feel welcome to this wonderful site. I do admit, I’m scared, I won’t deny that but I’m sure all of you have that feeling too.

    All my Tests taken came back positive for Rheumatoid Arthritis and Scleroderma. I’m no longer on the Medrol (family of Prednisone) as it was making me vomit. The Rheumatologist put me on that. I called my Primary and told him I did not feel comfortable under the care of the Rheumatologist.

    I have copies of all my lab work and also CDs to all the xrays and CTscans, Breathing Tests, Electrocardiograms, etc. I learned years ago to always request copies of your medical reports.

    I was so surprised when my Primary Care told me he wanted to try this therapy. I will mention to my doctor about the Lyme.

    I’m praying for all of you as I know you had me in your thoughts today and you all were considerate and kind enough to write.

    I so much appreciate your time.

    Should I be replying back individually or in this one section where it says: “Post a Reply”? I know being a Newbie can be a pain sometimes. I’m sure I’ll get the swing of things on this site soon. I do know I’ll sleep better tonight knowing someone out there cares! Bless all of you! Good Night!

    I’m orginally from Boston and was nice to see that this Foundation is from Cambridge, MA. Can I stop buy during my next trip visiting my children?

    Rosie

    #372709
    RevereRosie
    Participant

    Forgot to ask……..am I suppose to add a photo of myself and if so, how to I do it on this site?

    Rosie

    #372708
    lynnie_sydney
    Keymaster

    Rosie – you don’t have to add a photo but can if you want to. You can do this through your user control panel (top left). Click on that, go to Profile, then Edit avatar (it can be any pic not just a photo of you). It will guide you through acceptable dimensions.

    Be well! Lynnie

    Palindromic RA 30 yrs (Chronic Lyme?)
    Mino 2003-2007 100mg MWF - can no longer tolerate mino/doxy
    abx: MWF a.m. Augmentin Duo (1/2 x 875mg) + 250mg Klacid p.m. Cefaclor (1/4 x 375mg) + 250mg Zithromax. Annual Clindy IV's
    Diet: no gluten, dairy, sulphites, low salicylates
    Supps: 600mg N-AC BID, 1000mg Vit C, CoQ10, P5P 40mg, zinc picolinate 60mg, B3 1000mcg, EPO 1000mg, Lithium orotate 20mg, Magnesium Oil equiv 400mg
    Topical bio-identical estradiol + DHEA caps + Progesterone caps

    #372705
    RevereRosie
    Participant

    @lynnie_sydney wrote:

    Rosie – you don’t have to add a photo but can if you want to. You can do this through your user control panel (top left). Click on that, go to Profile, then Edit avatar (it can be any pic not just a photo of you). It will guide you through acceptable dimensions.

    Thank You

    #372706
    Lynne G.SD
    Participant

    Hi Rosie;
    Since you lived in Lyme territory please,please get a CD57 test(cheap) done as that will give you an idea of whether you need a true Lyme test done(expensive). If it comes back with a low number you probably have it….or cancer.If it is over 200 you are pretty safe.I think I got it 20 or so years ago but did not find out until almost 5 years ago
    http://heallyme.wordpress.com/2009/01/28/understanding-the-cd-57-test/

    #372701
    RevereRosie
    Participant

    I went to the dentist yesterday for a cleaning and I noticed a spot on my lower gum area. I brought it to the attention to the tech and dentist.

    Right on the wall was a poster advertising Mino for inflammation of the gums! I had my bottle of mino in my purse to show the dentist that I’m already on this medication and the reasons why.

    I was told that two back teeth need deep cleaning. The dentist said that inflammation in the body most times start in the gums and goes thru the blood stream much faster than if the inflammation started anywhere in the body.

    Xrays were taken but I was not told what that round spot was? My wrist was hurting so bad sitting thru the cleaning procedure and then waiting for the dentist to come in and he was only interested in scheduling a deep cleaning which I told him I have to take care of one thing at a time and will discuss this with my doctor first.

    I couldn’t sleep tonight, so many things going thru my mind. Wondering when will the Mino will start to kick in to relieve me of the pain. My wrist hurts so bad. I recall my Primary telling me that it is my Rheumatoid Arthritis. It actually feels like my wrist is broken.

    I have a question also: When I read everyone’s comments, below is a list of the meds they are on. How do I do that for myself? Is that to keep a record of the progress?

    Do I also have to change the subject section. I’m trying to dance around this program but not sure I’m doing things right. How to I keep all my post located in the same area?

    Thank you for listening. Rosie

    #372702
    lynnie_sydney
    Keymaster

    Hi Rosie
    See you’ve mastered adding your picture and also adding info into your signature line. You can update this info at any time by doing the same thing through user control panel. You’re doing great! In terms of keeping your posts in one area, if you keep using this thread (topic) that you started, they will continue to appear under that topic. You may also like to start a new topic or contribute to new topics that others have started and those posts will appear in those threads. You just click on the topic where they are all listed on first page of General Discussion and you will go straight to that topic. You can read the thread or contribute to it. You can also search all your posts at any time by clicking on your username and then ‘search posts’.

    If you want to start a journal of your experiences on the protocol, you can do that by going to Personal History and Progress section of the board, start a new thread and then every post you make, whatever the time gaps, will appear under each other in that thread. It is yours. That is what this area was set up for – for people to make a journal of their progress and experiences on AP. Other people are not able to contribute in this section, so all the posts will be yours – your journal.

    When you want others to join in, use the General Discussion area, which is what you have been doing. While ever you are contributing to this ‘I’m a new member’ topic that you started, the subject will stay the same, you don’t have to change it. Other threads will have different subjects.

    Hope this makes sense!

    Be well! Lynnie

    Palindromic RA 30 yrs (Chronic Lyme?)
    Mino 2003-2007 100mg MWF - can no longer tolerate mino/doxy
    abx: MWF a.m. Augmentin Duo (1/2 x 875mg) + 250mg Klacid p.m. Cefaclor (1/4 x 375mg) + 250mg Zithromax. Annual Clindy IV's
    Diet: no gluten, dairy, sulphites, low salicylates
    Supps: 600mg N-AC BID, 1000mg Vit C, CoQ10, P5P 40mg, zinc picolinate 60mg, B3 1000mcg, EPO 1000mg, Lithium orotate 20mg, Magnesium Oil equiv 400mg
    Topical bio-identical estradiol + DHEA caps + Progesterone caps

    #372698
    RevereRosie
    Participant

    Lynnie, you’re the best! I appreciate the time you take explaining things to me. Bless you! Rosie

    #372707
    lynnie_sydney
    Keymaster

    I’m orginally from Boston and was nice to see that this Foundation is from Cambridge, MA. Can I stop buy during my next trip visiting my children?

    Meant to say Rosie, the Foundation per se doesn’t have a ‘bricks and mortar’ home although it is registered in Boston. Current Board is made up of people who meet monthly, mostly by telecon and from time to time in person – and who live far and wide. They are also all Volunteers.

    Be well! Lynnie

    Palindromic RA 30 yrs (Chronic Lyme?)
    Mino 2003-2007 100mg MWF - can no longer tolerate mino/doxy
    abx: MWF a.m. Augmentin Duo (1/2 x 875mg) + 250mg Klacid p.m. Cefaclor (1/4 x 375mg) + 250mg Zithromax. Annual Clindy IV's
    Diet: no gluten, dairy, sulphites, low salicylates
    Supps: 600mg N-AC BID, 1000mg Vit C, CoQ10, P5P 40mg, zinc picolinate 60mg, B3 1000mcg, EPO 1000mg, Lithium orotate 20mg, Magnesium Oil equiv 400mg
    Topical bio-identical estradiol + DHEA caps + Progesterone caps

    #372703
    RevereRosie
    Participant

    @Lynne G./SD wrote:

    Hi Rosie;
    SD is a stinker but Lyme is even worse so please,please get tested as that will totally change any antibiotic protocol.
    I am sure you have read a lot of posts her about Lyme and where to get tested as most tests are useless.
    Now let’s assume you don’t have it,are you aware that SD can give the exact same symptoms as arthritis,irritable bowel,,fibro and many other immune diseases.A lot of SDers think they have multiple diseases but it really is just SD and it will eventually affect every part of the body in some way or an other.I just love my teeth breaking off at the gum line.Sheeeeesh!.
    If you have true RA you need to start AP very slowly but if it’s SD you really need to hit it hard and fast with 200mg Mino a day.If it is true SD you will not likely Herx but if you have Lyme like I do you will really get hit hard.Since my SD was bad I just sucked it up and tried to ignore my constant herx.I only found out about Lyme after 12 years on AP with almost constant herxing that goes with it.
    You really can’t follow any example from others because this game has no rules and you are the one that has to figure out what works for you.It’s trial and error but the more you read the easier it becomes.Learning the lingo is half the battle as different protocols use different meds and abreviations are normal to us ole timers.As you probably see by my spelling mistakes,I had to learn English along with Medicalese O, La La!!!.
    Take a look at different protocols to see what might appeal to you and whether you think one or an other might be best suited to you.Regulat AP discussed on this board is known as the Harvard Protocol but if you Google antibiotic protocols you will find many such as the CPN, Wheldon,Marshal or CIR.I did Harvard for 14 years and am now on CIR with better results.
    You will feel sooooo lost but there is always someone here who can help you along this road.Pay attention to Maz and A Friend who are worth their weight in gold

    If I had Lyme, wouldn’t I have some sort of skin issues to show that? I’m confused. Rosie

    #372704
    RevereRosie
    Participant

    @Lynne G./SD wrote:

    Hi Rosie;
    SD is a stinker but Lyme is even worse so please,please get tested as that will totally change any antibiotic protocol.
    I am sure you have read a lot of posts her about Lyme and where to get tested as most tests are useless.
    Now let’s assume you don’t have it,are you aware that SD can give the exact same symptoms as arthritis,irritable bowel,,fibro and many other immune diseases.A lot of SDers think they have multiple diseases but it really is just SD and it will eventually affect every part of the body in some way or an other.I just love my teeth breaking off at the gum line.Sheeeeesh!.
    If you have true RA you need to start AP very slowly but if it’s SD you really need to hit it hard and fast with 200mg Mino a day.If it is true SD you will not likely Herx but if you have Lyme like I do you will really get hit hard.Since my SD was bad I just sucked it up and tried to ignore my constant herx.I only found out about Lyme after 12 years on AP with almost constant herxing that goes with it.
    You really can’t follow any example from others because this game has no rules and you are the one that has to figure out what works for you.It’s trial and error but the more you read the easier it becomes.Learning the lingo is half the battle as different protocols use different meds and abreviations are normal to us ole timers.As you probably see by my spelling mistakes,I had to learn English along with Medicalese O, La La!!!.
    Take a look at different protocols to see what might appeal to you and whether you think one or an other might be best suited to you.Regulat AP discussed on this board is known as the Harvard Protocol but if you Google antibiotic protocols you will find many such as the CPN, Wheldon,Marshal or CIR.I did Harvard for 14 years and am now on CIR with better results.
    You will feel sooooo lost but there is always someone here who can help you along this road.Pay attention to Maz and A Friend who are worth their weight in gold

    If I had Lyme, wouldn’t I have some sort of skin issues to show that? I’m confused. Rosie

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