Home Forums General Discussion I guess I am an APer now

This topic contains 10 replies, has 7 voices, and was last updated by  Cheryl F 4 days, 12 hours ago.

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  • #463896
    Uptowngirl
    Participant

    Hi everyone. Well, here’s my basic history. For years I was told that I have fibromyalgia, but like so many other people, I never quite knew what to do with that information. I’ve gone through periods of having frequent colds and frequent bouts of strep throat (which I’ll get back to in a bit). In 2009 I was in an auto accident and I hurt my back. Back pain lead to an overall increase in body aches and pains and increased fatigue. I now have an implanted spinal cord stimulator, which is helpful for sciatic pain.

    Approximately 2.5 years ago I started to have extreme pain in both ankles. The pain feels like it’s very deep inside, not on one side of the foot or the other. The pain is equal on both sides except for the fact that I also have some tendinitis in my lower right leg, so sometimes that ankle feels slightly worse. The ankles don’t appear swollen. X-rays and an MRI showed some inflammation and arthritis but nothing that should cause such extreme pain. I had days when I did not even want to put weight on my feet to get up in the morning. My primary doctor believed that I probably have some sort of autoimmune issue and I do have a strong family history for that.

    A family member of mine was active on this boards, so he found me a doctor who is well versed in AP. I am sorry I am not sure exactly who recommended this doctor, but it may have been Maz?? I am thankful, because even though I have not had a clear path to a solution, Dr. W has not given up on me. I had a lot of testing done. I was treated for borderline results on Lyme disease testing. One would think that either I was bitten by a Lyme infected tick or I wasn’t, but I am sure most people here know that Lyme is not easy to diagnose. I live and vacation in a place where Lyme is endemic. I went through a round of Doxycycline for 3 weeks. I had a major increase in pain for the first few days, the dreaded herx, and then I had almost total relief for the rest of the three weeks. For almost a year after that, I begged to have doxycycline again. In the meantime, doctors found that I had (and still have) extremely high antibody levels for strep. These are measured by the strep DNase test and the Anti streptolysin (ASO) numbers. Both numbers were off the charts. ASO was close to 1,000. A normal range is up to 200, and even when a person has strep throat, the number will go to 300 or 400. The levels can remain high for a few months after a person has strep throat. However, mine were high long after the last time that I knew I had strep throat. Doctors now say that I have an adult version of Rheumatic Fever, and they believe that the ankle pain is Reactive Arthritis related directly to my immune response to strep. They have also referred to it as Atypical Rheumatic Fever. Finally, after a month’s worth of amoxicillin, the number went down into the 400s. My ankle pain was not gone but it was much better. My rheumatologist, Dr. W. wanted to see if the number would remain low if I went off the amoxicillin. After a little more than a month, the number was the highest it has ever been. At my urging, I tried doxycycline again. This time it did absolutely nothing, and the ASO number increased to the highest it’s ever been. So, I went back on Amoxicillin. After a month, my ASO went down to 656. Still high, but this is a great improvement. I will now remain on Amoxicillin for at least 6 months. Also, Dr. W referred me to a Dr. O, an immunologist who is not in my state. I would love to find out whether anyone else from here has seen Dr. O. Dr. W believes that even though there is a family history of scleroderma, I do not have scleroderma or lupus, but I probably have some sort of inherited tendency toward autoimmune issues. He would like to see Dr. O do further testing. Tonsillectomy is not out of the question, but I am really hoping to avoid it. Tonsillectomy may or may not even help with the issue. I could have a tonsillectomy and still have the pain and high ASO numbers. I guess I do not have a specific question at the moment, but I did want to introduce myself.

    If you have followed this far, I thank you. Now I will explain more about how I got here. The family member of mine who was on this board, well, that was Richie. I am Richie’s daughter, Kerie. I want to thank all of you for the lovely sentiments you offered after my dad passed. When my dad’s posts here seemed harsh, it was only because he believed so strongly in the treatments that he used, and he did not want people to suffer. From the messages my mom received after he passed, I gather that you all understood that about him. My father cared deeply for this community. Thank you all for being there for him for so many years. He was truly a special person. He was funny, wise, strong and caring. I will miss him forever. Please know that AP was nothing short of a miracle for him and he died of a totally unrelated and brief illness.

    I know that at times, my dad answered questions about Social Security Disability. I am still a practicing Social Security attorney, so those answers came from me and I can assure you that his information was reliable. I also know that he has made mention of my spinal cord stimulator. I’d be happy to answer questions about my work, the stimulator or anything else that I may have knowledge about. I know that I am not the typical patient for this board as my diagnosis is not the same, but each of us has nuances to our conditions. I am utilizing antibiotics and I will be for the long term. If anyone knows of the doctor I asked about, please let me know. Also, if anyone has a similar history, I would like to know more about what works for you.

    #463901
    Cheryl F
    Keymaster

    Kerie~

    Welcome. I feel like we are family. We too loved your dad. He was here to help me when my daughter was first diagnosed with scleroderma. He was a volunteer in this forum and I will be forever greatful for the hope that his story gave me. The stress of having a child with systemic scleroderma was overwhelming and his recovery gave me hope.

    We later connected over our common interest of competing swimming. He shared the details of your daughter’s competition and her path. I literally watched the online results when she went to Zones, then off to college. Our last private message was about catching up on your daughter’s accomplishments.

    When we learned of your dad’s passing I was in shock, he was fine only a couple weeks prior. We miss him too.

    I am sorry you are going through this. I too have multiple family members with rheumatic disease. My oldest daughter was diagnosed with scleroderma in 2006. My husband was diagnosed with RA in 2008. And, as if my family hadn’t had enough, my youngest daughter now has linear scleroderma, diagnosed just last week.

    Sorry I don’t have an answer to the question you posted, but I had to chime in to say hello and welcome.

    Warmly,

    Cheryl

    #463902
    Lynne G.SD
    Participant

    Hi Kerie;
    So nice to meet you.Your dad and I go back almost 20 years and we both had SD.He is the one that really explained this disease to me as doctors knew very little about it way back then.He is also the one that kicked me in the butt when I was down and wanted to quit both AP and life.I will always love him.I really hope you can conquer your disease as well as he did.
    Lynne

    #463904
    Uptowngirl
    Participant

    Hi Cheryl, That was my sister’s daughter. She’s doing great. She’s becoming a lawyer now. I have one child, a son who is 11 years old. He plays baseball. He’s a bit sad about starting a new season without grandpa.

    Lynne, yes, I do hope I conquer this. I think I’m getting better but I have had a slow road. I hope you are having success in treatment.

    #463907
    jasregadoo
    Moderator

    Hi Kerie, so nice to see you here, though of course I wish the reason were just to offer us advice on Social Security or say hello, rather than you needing treatment. I’m so sorry for the loss of your dad. Ritchie was a great guy and we all miss him a lot. He was so encouraging, and gave so many of us hope. I lost my father in 2017, quite suddenly (he was hiking in the Italian Alps and had a heart attack), and I miss him so much every day, it is really hard. So I understand what you are going through. Hang in there, welcome to the forum, and do let us know how your treatment goes!

    – Julie

    #463908
    Luck20
    Participant

    Sorry to hear about all your going through.

    I just want to say I read some posts on this site by someone named ‘Richie’ and more than a couple times he said everything I was thinking and seemed to really hit the nail on the head. He put into words things I felt that I couldn’t quite verbalize.

    Scleroderma, myositis, morphea and probable lyme. (Test was negative) +Ana, positive SS-ro52. Mild reflux and mild Ild.
    Minocin m-f 2x, Azithromycin 4 days on 10 off 2x, Tinidazole sat/sun 2x. Ldn 4.5, prilosec, Trazadone for nightime pain and sleep, Mycrophenolate 3000.

    Fish oil, Berberine, Tumeric, Probiotics.

    #463911
    Spiffy1
    Moderator

    In reading your post the first thing I think about it the fact that you are grieving the loss of your dad. This is when I found myself in my initial flare…within a year of my dad’s death I had started my spiral downwards. I will be thinking about you and please keep us posted on how you are doing. We are glad to have you with us but sad it is because of your own health but we know your dad would want you here. In addition to antibiotics please consider asking your doctor about food intolerance testing and also LDN. The combination of these three have put me back into life for now.

    Flare fall of 2014...muscle aches, joint pains, fatigue, hair loss, rashes, etc.
    RA Factor 71 in Jan 2015 down to 25 as of September 2017
    DR4/DQ8 HLA...biotoxin illness
    IGG food allergy to wheat, egg, and dairy...probably all grains
    Vit. C&D, probiotics, milk thistle, turmeric, fish oil, methyl b 12, methyl folate, digestive enzymes, Candisol, Ubiquinol, berberine, chlorella, Moducare, LDN, monolaurin, Triphala, Patriot Greens, Paractin
    MTHFR compound heterozygous
    Igenex IGM positive Lyme, minoMWF

    #463914
    whaleharbor
    Keymaster

    Kerie, First let me say how much your dad meant to me. I was diagnosed with RA now almost 30 years ago (how is that even possible). I found this board much later when my doctor (and I) were losing hope. Richie was one of the ones on here whose responses and threads I followed with so much hope. I went to the doctor he went to…he was the one who suggested cultivating a relationship with a smaller independent pharmacy – which was about the best advice I have ever received in my life. I could go on and on. I don’t know how to put into words how much strength and hope he gave me…just by being himself right on this forum. Frankly I loved his pragmatic, forthcoming and direct nature – it was very grounding for me.

    Anyway, I am so sorry you are going through some trying times. As Spiffy suggested grief can bring on autoimmune issues…it did with me. In fact any stress…emotional stress…will cause me problems. I have to be very very very careful to be mindful, get rest etc… Grief is terrible for my RA. Fortunately for you – you already have the answer should this turn out to be some kind of autoimmune flare – AP. It can be a bumpy road, but as you say, quite the miracle.

    Hang in there. You got this and we’ve got your back.

    Hugs.

    200mg Celebrex 1 times per day.
    100 mg Minocycline every other day (Actavis Brand)

    #463916
    Luck20
    Participant

    Thats so beautiful Whaleharbor! Such a beautiful thing to say.

    Scleroderma, myositis, morphea and probable lyme. (Test was negative) +Ana, positive SS-ro52. Mild reflux and mild Ild.
    Minocin m-f 2x, Azithromycin 4 days on 10 off 2x, Tinidazole sat/sun 2x. Ldn 4.5, prilosec, Trazadone for nightime pain and sleep, Mycrophenolate 3000.

    Fish oil, Berberine, Tumeric, Probiotics.

    #463943
    Uptowngirl
    Participant

    Thank you all for the kind words. Yes, I am still in mourning and it has been a stressful time. My dad (Richie) passed just before Labor Day. His illness happened just as the one month round of antibiotics started to help me a little bit. The only day that I did not make it to the hospital was the day he was admitted. My ankle pain was extreme that day. I still kick myself for not making it there as I think that the first day was the worst/scariest for him. However, I made it there every day for the next 9 or 10 days until he passed. I must have had some sort of adrenaline kicking in because the next time I had a bad pain day was the day after he was buried. Now just as I was thinking that I am feeling better and that maybe I do not need the out of state doctor, I have had a few bad days. I need to have some bloodwork done before I go to see him. Meanwhile, I am still taking Amoxicillin. Doctors tell me that I will be taking it for a minimum of 6 months, and I am in month 2 for this round. In the meantime, I may get a more clear diagnosis. As I said, they say it’s rheumatic fever or reactive arthritis but they want to find out why I responded this way to strep throat. I wouldn’t wish that deep ankle pain on anyone. It is so hard to describe. Thanks again for the encouragement to fight this illness and for the very kind words about my father. He was a great dad and a great friend. I’ll be reading posts and I’ll chime in when I have something to contribute.

    #463947
    Cheryl F
    Keymaster

    Kerie:

    I have spoken to so many APers who have shared that their disease process seemed to follow or flare from stress. There is such a connection there that I hope you are really focusing on taking care of yourself, not just medically.

    My youngest daughter is doing he dissertation on the issue of stress and rheumatoid arthritis. Through this process, she had to do a literature search and review. There are literally 100s of published academic research papers on the topic of stress and RA. And, as she is writing this paper and doing this research, she too has been under incredible stress, and now she has signs that clearly point to a diagnosis of linear scleroderma.

    All of this is mainly to say, take care, give yourself what you need to grieve and don’t let the stress make the condition worse.

    Warmly,

    Cheryl

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