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  • #457551
    enzed
    Participant

    Thanks Lynnie, PM sent.

    #457549
    enzed
    Participant

    Hi Wendy,

    I have SD and take a channel blocker called Amlodipine Maleate 10mg for Raynauds. My fingers were good for a long time but 6 months ago became swollen so the doctor prescribed Amlodipine. It worked within days to reduce the swelling by allowing the blood into the fingers. I’ve had no trouble with my fingers since. (Several years ago I was plagued with finger ulcers but that stopped after I began AP).

    I too have lost padding under my feet but that was happening even before I was diagnosed with SD in 2009. After a world wide internet search to find shoes soft enough to walk in, I finally located some extremely soft sneakers. The brand is Brooks and the model is ‘Pure Cadence’. I live in Australia and was able to find this model here once I had identified they might help. (I had previously wasted a lot of money buying sneakers that I then had to throw out). These are the only shoes I can actually walk in. It was worth the search and they weren’t cheap but they are wonderful. I had previously tried on so many so-called ‘soft’ shoes / sneakers and was unable to walk in any of them. None of the other models of Brooks sneakers were any good to me – only that one model. Maybe you can find them where you live. Try them on and see if they suit. I hope they still make that model. I can walk all day in mine.

    I haven’t posted on the forum for a long time as my password process kept failing,although I did keep up with reading posts from time to time.

    PS: I just checked online to find there is a range of Brooks sneakers called ‘Pure Cadence’. The ones I wear look just like the women’s running shoes. Here’s the link to that page;

    https://www.brooksrunning.com.au/womens-running-shoes-and-clothing

    #455658
    enzed
    Participant

    Worldofme – re Tooth Pain

    I went to the dentist several times about pain in the same tooth but he found nothing wrong with it. Finally he worked out it was caused by a sinus issue on that side of my face. I took a course of a strong antibiotic (in addition to Doxy) and the pain stopped. I also began to use an antihistamine occasionally to keep the sinus clear. I also used a sinus flush a few times until it was completely unblocked. You might want to consider the a sinus infection is causing the tooth pain.

    #455465
    enzed
    Participant

    Hi,

    Thanks Phil. My regular doctor has never suspected I have Lyme disease although a ‘locum’ of his once suggested I be tested. Because the tests were not considered reliable enough testing was not pursued.

    The reason I brought up Lyme Disease is because of what you wrote back in 2013:

    I saw my doctor again today. She has been doing a lot of research on my behalf. After all the negative test results I’ve had for other things, we seem to have narrowed down the possible causes of my CREST to Lyme and/or Lupus.

    We agreed there’s not much point in going to the expense of sending blood to the US for Lyme testing at this stage because the test results are not definitive and still need to be considered along with other factors, so it’s a clinical diagnosis anyway. Plus the doctor is now very confident Lyme is the likely culprit causing the CREST, having also taken my medical history into account.

    See: https://www.roadback.org/forums/topic/another-scleroderma-and-raynauds-story-starting-ap-today/page/2/#post-365168

    Some infections require treatment with multiple antibiotics in order for the treatment to have a chance of being successful, and Lyme Disease is one of them. That’s why I mentioned Lyme — so you can have a better chance for a successful treatment.

    Phil

    Hi,

    Thanks Phil. My regular doctor has never suspected I have Lyme disease although a ‘locum’ of his once suggested I be tested. Because the tests were not considered reliable enough testing was not pursued.

    The reason I brought up Lyme Disease is because of what you wrote back in 2013:

    I saw my doctor again today. She has been doing a lot of research on my behalf. After all the negative test results I’ve had for other things, we seem to have narrowed down the possible causes of my CREST to Lyme and/or Lupus.

    We agreed there’s not much point in going to the expense of sending blood to the US for Lyme testing at this stage because the test results are not definitive and still need to be considered along with other factors, so it’s a clinical diagnosis anyway. Plus the doctor is now very confident Lyme is the likely culprit causing the CREST, having also taken my medical history into account.

    See: https://www.roadback.org/forums/topic/another-scleroderma-and-raynauds-story-starting-ap-today/page/2/#post-365168

    Some infections require treatment with multiple antibiotics in order for the treatment to have a chance of being successful, and Lyme Disease is one of them. That’s why I mentioned Lyme — so you can have a better chance for a successful treatment.

    Phil

    Phil, To clarify: The woman doctor I referred to in 2013 was a locum standing in for my regular doctor who was taking a long holiday of 3 months. She was a strong believer in Lyme because a close relative of hers had it – and he remembered the day he had been bitten by ticks. I had no memory of tick bites although after listening to her I was pretty convinced Lyme was a likely cause. It was later, after my regular doctor returned and she had gone that I researched a lot more about dental infections and SD and made a list of every dental infection I had ever had until I remembered them all. It’s quite a list. Dental then seemed the most likely cause. I think it was ‘A Friend’ on this forum who first alerted me to the seriousness of dental treatment and the infections that they can cause.

    As you are well aware, these auto-immune diseases cause a lot of confusion regarding cause and we continue searching for the ‘most likely’ cause and along the way we discard possible causes until we home in on the ‘most likely’.

    #455463
    enzed
    Participant

    Enzed Rulide is the roxythromycin brand most known but Biaxsig (not US Biaxin)is the roxy my AP doc recommends. Any chance you can get this one? I’m not sure what your doc situation is these days. Not all pharmacies stock it but my local compounding pharmacy does. Its also a great deal cheaper than Zithromax.

    Thanks very much Lynnie,

    I’ll discuss the Rulide / Blaxdsig option with my GP and see how he reacts. What would a starting dose be for SD? Is it increased over time? The more dosage information I can give him the better my chances are he will agree.

    #455452
    enzed
    Participant

    Hi,

    Are there alternatives to the Tetracycline drugs, when a sensitivity to Mino and Doxy has developed?

    Since you successfully used roxithromycin in the past, why don’t you use that? Also, since your doctor suspects that the culprit in your case is Lyme, perhaps a better question would be, “What antibiotics, other than the tetracyclines, are used to treat Lyme Disease?”

    Phil

    Thanks Phil. My regular doctor has never suspected I have Lyme disease although a ‘locum’ of his once suggested I be tested. Because the tests were not considered reliable enough testing was not pursued.

    I think it more likely the SD is an effect of a lifetime of dental infections, including jaw surgery in 1998 or 1999 to clean out an infected root canal and scrape out pus that spread to under other (good) teeth in my jaw. The gaps left behind were filled with dental ‘concrete’ and I was on powerful antibiotics for months until I recovered. Back in the 1960’s I was hospitalised for a week and teated to reduce a serious infection in infected, impacted wisdom teeth. The teeth were removed when the infection was sufficiently under control for the surgery to be performed. I had previously had ‘mishaps’ with dentists and their dodgy treatments that no doubt contributed or may be an original cause. In my case, there is plenty of evidence to suspect dental infections as a cause of the SD.

    On posts (on the original forum), Maz did recommend Roxythromycin or Azithromycin instead of tetracyclines for SD. Right now I have no access to Roxy although I can access Azi. That could be the next move.
    Thanks for your input.

    #455422
    enzed
    Participant

    Thanks very much Lynne G.SD. This is very helpful information. I don’t remember Dolores but I’m glad she found the solution she needed.

    #455371
    enzed
    Participant

    Hi worldofme,

    You don’t say if you have RA (that I know nothing much about) or if you have SD.

    I have Scleroderma (SD) and have used Doxy. I began on Minocycline but it had a very strong herxing effect although it was successful in that it reversed many symptoms of SD in the first 3 months. The medical advice was to switch to Doxy as what may have been misunderstood by me as being herxing may actually have been a sensitivity (not to be confused with an allergy) to Mino which was way too fast acting for my system to cope with.

    Doxy can be started at low doses and increased as the body can cope with it. Advice on this forum from people with more experience is to start slowly, taking a lower dose spread out over a week, only 3 times a week. 100mg on Monday, Wednesday and Friday to begin with is advice that has been followed by many others on this forum. Then it can be increased.

    Although Doxy was slower than Mino to get results (that’s only my experience) it was way more gentle on my body and I was able to manage that very well. The reduction in SD symptoms continued and I did increase the dose to 100mg twice a day. I did continue to experience some side effects, mainly fluid retention in my ankles and my knees that became swollen, stiff and sore.

    I had taken some supplements as well but stopped those after which the fluid retention slowly reduced and then stopped altogether. As others have pointed out, when we get diagnosed we have a tendency to chuck everything at it, and that in itself can create more problems. So the idea is not to panic, to start slowly, to build up slowly, as the body handles the ‘die off’ of bacteria from the AP.

    That’s just from my own experience and I hope it helps.

    #454140
    enzed
    Participant

    The article resonated with me. A few months after being diagnosed with SD in 2009 I saw a rheumatologist. At our second appointment he announced he was about to book me into the hospital where he would carry out an endoscopy. I asked why. He said ‘I need to know what damage the SD has already done to you.’ I knew not to consent to it. I said I would need to think about it. I went back to my doctor and asked for his point of view. He was horrified. He explained about the tears that can be caused by endoscopy surgical equipment and how dangerous the procedure can be. He told me never to consent to that procedure without checking back with at least one doctor as to whether or not it was actually essential for some medical reason. Excellent advice.

    #375484
    enzed
    Participant

    I answered your private message. Look in your message inbox. Good luck.

    #375481
    enzed
    Participant

    I have bought medication from overseas. It takes around 3 weeks for delivery. If you want to know where I ordered mine from, send me a private message and I will send you the name of the company.

    #375213
    enzed
    Participant

    I would never have another root canal.

    In 1999 I had to have surgery on my jaw from an infection that began under a capped tooth that had had a root canal done in 1978. The oral surgeon sawed into my jaw and sucked out pus from under the tooth in question. I was then on a huge dose of antibiotics for several weeks while the jaw healed. The stitches were self dissolving but I was on liquid food for a while as the gum was too painful for me to put food in my mouth.

    A few years ago I was almost talked into a root canal for another tooth but remembered the surgery and told the dentist, just pull the tooth instead and give me a script for antibiotics to kill any infection that may be hanging around. He was very disapproving but did as I asked. I have had a total of 4 teeth pulled instead of opting for root canals. My health is now much better.

    So no, never again for me.

    In 1994, I had all my amalgam fillings replaced with composite fillings in the belief it would improve my health although it didn’t make any difference. It was the surgery that improved the way I was feeling.

    #375109
    enzed
    Participant

    From the New Zealand Medical Journal – the dangers of tick borne disease in New Zealand – a threat to public health.

    http://www.nzma.org.nz/journal/read-the-journal/all-issues/2010-2019/2011/vol-124-no-1339/article-heath

    #375108
    enzed
    Participant

    Lynnie,

    That story really touched me. It reminded me of the 1980’s when at age 39, I was suddenly bedridden from a wicked and undiagnosed infection that doctors could not diagnose. A huge range of blood tests showed nothing. There was no internet and no way to get help or support. When I heard medical hints to the effect I was ‘imagining’ my symptoms I had never felt so alone or so afraid in my life. I had gone from being an independent person to a pathetic patient to the point where I almost gave up. I couldn’t even take care of my children. I had to figure out the cause all by myself although I couldn’t even get to a library to do any research. I decided there was only one explanation – it must be bacteria of some kind although I had no idea what it could be. I had travelled a lot to different countries so had no idea what I could have picked up, or where. I had also had a lifetime of recurring dental infections.

    Through a relative I made contact with a drug company rep who took pity on my desperate situation and supplied me with huge sample containers of antibiotics meant for doctors and I dosed myself liberally. Within a couple of weeks I was able to force my limbs to start moving again. I began walking again with two walking sticks, then with one, at first just around the house and then to the letter box and back. Then driving again – what a day that was when I managed to get into the car and find enough strength to depress the accelerator and the brake. I sat there and sobbed with relief. I found a chiropractor who managed to get my spine straightened up again – I was bent over and so stiff I could not stand up straight.

    I had been back to see a gynaecologist who had treated me in the past because I wondered if something hormonal was going on. When he told me I wasn’t “getting enough sex” I told him that if I could have lifted my foot I would kick him in the balls so that was his lucky day. That felt good. I lost the last of my respect for doctors right about then and fortunately have never recovered it to the extent I will allow any of them to override or bully me. I appreciate the smart ones open to learning.

    A year and a half after starting the antibiotics I was back at work although still with pain and inflammation and very dependant on painkillers and an anti-inflammatory drug. My drug rep left his medical job so I wasn’t able to access more antibiotics although I knew they were the reason I was back on my feet, being a mother to my children, and even earning money again.

    Doctors who deny Lyme exists should ask themselves that university question posed to students to challenge them to open their minds to new learning – “How do we know what it is we don’t know?”

    #374973
    enzed
    Participant

    @Linda L wrote:

    I haven
    t found much about Atkins’ and other high fat diets on our forum. In 2012 Katherine Poehlmann wrote that she and her husband followed Atkins’ diet. When I was buying something in a health food shop last week I was given some printed pages with an article about high fate diets.They mention here a highly respected Dr Weston Price who documented that people who enjoy the abundant health consume a diet which consisted of 50%-65% fat.He has written a book “Nutrition and Physical Degeneration”. Another advocate for a high fat diet is the renowned Dr Jan Kwasniewski of Poland who is the author of six books and nominee of the Nobel Prize in Medicine in 1999.Dr Kwasniewski recommends three basic guidelines:
    1. Eat 1g of protein for every kilogram of your ideal body weight /eg. lean meat/
    2. Eat 2.5-3.5g of fat for every gram of protein /a lot of fat/
    3. Eat 0.8g of carbohydrate for every gram of protein.
    It is crucial to avoid the bad fats like trans fats, margarine, refined or heat pressed oils and polyunsaturated fats.
    They claim that it is a highly anti-inflammatory diet and is consistent with a traditional diet of French who boast the lowest heart disease and stroke rates in the world and consume more fat per capita /also butter/ than any other nation.
    Old cook books /I have one issued in 1914/ also have all recipes with hips of eggs eg. 20 eggs for 1 kg of cheese to make a cheese cake.
    I have avoided fat all my life /even butter/ . I have tried many thing for my RA. So I am going to introduce more fat into my diet and see what happens.
    I wonder if anyone of you has tried this diet.
    Linda L.

    Linda, You might find this youtube video helpful in explaining the low carb diet.
    It’s an interview with Dr Eric Westman – ‘Dubunking Low Carb Myths’.

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