Home Forums General Discussion Introduction

Viewing 8 posts - 1 through 8 (of 8 total)
  • Author
    Posts
  • #308353
    scingram
    Participant

    I just wanted to say hi to everyone, and introduce myself. My name is Sarah and I am just beginning the AP. I’m glad to have a place to come for information and interaction. I made this post on my personal history, but thought I would put it here as well.

    I am a 31 year old stay at home mother to 2 boys (L is 5, and R is 3) in Baltimore, MD.

    In 2010 we adopted a dog who has terrible leash manners and pulled when we walked her. I attributed sore shoulders and wrists and knees to her for a few weeks before realizing something else was going on. I had also received two corticosteroid injections in my foot for Morton’s Neuroma around this time, but never thought it might be connected.

    I was referred to a rheumatologist, sent out for bloodwork, and returned for results. She told me I had rheumatoid arthritis and gave me a prescription. I suspected I was pregnant so I never filled the prescription, and a week later a doctor confirmed the pregnancy. The pain wasn’t bad, but I did a little research, and saw where many women have bad flares a few weeks after giving birth. I wanted to be prepared, so I made an appointment with another rheumatologist, who seemed to take great offense to me being pregnant and thinking I had RA. He told me pregnant women CANNOT have RA and if I did have it, I would need chemotherapy, DID I UNDERSTAND?? I didn’t, but I didn’t want to cry in front of him, so I left. My husband and I agreed, maybe it was a good thing, that he was saying I didn’t have it…but there was a nagging feeling in the back of my head.

    A few weeks after the birth of my youngest son, I did have pain and saw a doctor who prescribed prednisonse. I felt pretty good, so I left it at that. I thought, if I can manage this with a single little pill, life is good. (Of course, I was also taking a lot of ibuprofen.) I think I only saw this doctor to get refills, because to this day I don’t remember if it was a man or a woman or what. After a year and a half, my in-laws, noted that I must still be on prednisone because my face was fat. One of them suffers from fibromyalgia and had experience with prednisone. I was pretty shocked to realize that a lot of what I attributed to age and having kids, was probably being caused by the prednisone (weight gain, purple stripes on my legs).

    So I went to yet another rheumatologist, who put me on methotrexate and hydroxychloroquine with prednisone as needed. I also started having a mild stomach pain, but saw a general practitioner who attributed it to the prednisone use and put me on omeprazole as needed. Things seemed mostly fine, and I continued on taking ibuprofen often.

    I had an abnormal pap last year, followed by a colposcopy, and then a cold knife conization to remove a part of my cervix. I had cervical carcinoma in situ. Before the procedure I had to come off the methotrexate, and I confided to my rheumatologist that I was hesitant to get back on a medication that dulled my immune response, when I clearly had a problem with HPV. I asked about the antibiotic protocol and she said that made her uncomfortable. She prescribed prednisone again and recommended Remicade.

    My husband and I agreed to find a doctor who would at least talk about the antibiotic protocol and I found an integrative family practice. Our insurance doesn’t pay for it, so I don’t know how long I can keep it up. I certainly cannot afford to continue the LDN. I tried it for two months, without any noticeable results, aside from the gnawing guilt when I had to pay for it. I did begin the Mino, for about a month, while trying to taper off the prednisone.

    I planned an elimination diet, and was prepared to start one Monday a few weeks ago, but the weekend before I started experiencing stomach pain, vomiting, and fever. I went to the emergency room, and they believe I had a gastrointestinal perforation due to diverticulitis. They kept me off medications while I was there, aside from the antibiotics they were giving me to calm the infection. Next week I go for a colonoscopy to be sure I don’t need surgery. I did not start back on the prednisone, even though the pain got very bad after the new course of antibiotics.

    Now I am trying to get back on Mino. My doctor doesn’t want to go in too strong, since I need to build up good gut flora. I was beginning to feel a little lost and alone, so I thought I would join this board, and maybe be able to talk with people who have insight and understanding. I hope I can also track my own progress.

    #372545
    Lynne G.SD
    Participant

    Hi Sarah;
    Welcome to our group.You will find lots of help here but be prepared to make a post and then wait,and wait,and wait.For us that is a good thing as it shows that we are well enough to live almost normally and are preoccupied with our daily lives.You will get there in time.I don’t know how much you have read about AP but with RA you have to go low and slow.Some people even had a rough time with 25mg of mino 3 times a week.Be prepared to feel worse(herx) each time you increase or change antibiotics.
    I have been on AP for almost 16 years and have had my share of gut problems.You really need good probiotics
    but meds+ children = being broke a lot of the time.Fermented foods have a hundred times more probiotic in them than do the capsules.Saurkraut,kefir,miso,kimchee are the best.I never used to like saurkraut but now I love it.I eat 1/2 cup a day along with a couple enteric coated probiotic capsules.Make sure they are coated or you stomach acid will just send your$ down the drain.Fermented foods have so much that even if the stomach acid has a go at them you still have plenty extra.
    Got to run,see you later,Lynne

    #372543
    Maz
    Keymaster

    @scingram wrote:

    I had an abnormal pap last year, followed by a colposcopy, and then a cold knife conization to remove a part of my cervix. I had cervical carcinoma in situ. Before the procedure I had to come off the methotrexate, and I confided to my rheumatologist that I was hesitant to get back on a medication that dulled my immune response, when I clearly had a problem with HPV. I asked about the antibiotic protocol and she said that made her uncomfortable. She prescribed prednisone again and recommended Remicade

    Hi Scingram,

    Wondering how Remicade could provide a solution when struggling with cervical carcinoma due to the virus HPV? 😕 When anyone has a chronic inflammatory rheumatic disease, this predisposes that person to a higher risk for various cancers. Unfortunately, while chronic inflammation (infection) may be at the root of this, the immunosuppressant meds used for rheumatic diseases decrease the immune system’s ability to find and control the body for cancer cells, too, as you wisely pointed out to your rheumy.

    http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3155180/

    It sounds like LDN was a struggle, financially, so not sure if the following is do-able for you, but when it comes to any type of cancer, no doubt anything (weighing risk/benefit, of course) is worth a try to get things controlled.

    While no one is a doc here and can only offer patient experience, if this helps, a close relative of mine has had HPV with pre-cancerous, Stage III lesions. She has had multiple colposcopies and laser treatments to remove the dysplasic lesions. This required paps every 6 months and each time – for several years – the results were the same, requiring more interventions. After doing a bit of research on an over-the-counter supplement my Lyme doc prescribed for me, specially-compounded Liposomal Artemisinin (compounding pharmacy in MA mails it to me), I found all sorts of info on it regarding its applications in medicine, from breast and prostate cancer to the treatment of cervical cancer due to HPV. As my relative had had just about enough of the constant fear and growing concern over the increasingly invasive treatments her gyne was prescribing (and if it would prevent her carrying a baby in the future), she decided to give the Liposomal Artemisinin a go after getting yet another “abnormal pap” result. The gyne said she needed to go back after one month for another colposcopy, but during that month, she took the liposomal artemisinin. This time the results were different! She had no abnormal results on the colposcopy and no need for laser treatment. That first time, she only took the artemisinin for the month prior to the colposcopy. After 6 months, she went back again for a routine pap and they found abnormal cells again, so she took the artemisinin again – a month later, she had a negative colposcopy result. So, she decided to take a month of liposomal artemisinin one month prior to her next pap. This latest test was negative and so no dreaded follow-up call for any further intervention! 🙂 She is now committed to using a month of liposomal artemisinin (with EDTA and ALA) every 6 months as boosters to keep the virus in check.

    http://www.ncbi.nlm.nih.gov/pubmed/24754594

    http://www.ncbi.nlm.nih.gov/pubmed?term=Dihydroartemisinin%20is%20cytotoxic%20to%20papillomavirus-expressing%20epithelial%20cells%20in%20vitro%20and%20in%20vivo.

    http://www.freshpatents.com/-dt20120112ptan20120010278.php

    “Example 1 Effect of Artemisinin and its Analogs on Cervical Cancer Cells
    FIG. 2 shows that artemisinin is lethal for cervical cancer cells. The indicated cervical cancer cell lines were treated with 25 ?M artemisinin (or control solvent) for 3 days and then photographed with a phase contrast microscope. Normal cervical cells (HCX) showed little change in morphology in response to artemisinin whereas the cervical cancer cells rounded up and detached from the tissue culture plate.

    FIG. 3 shows that cervical cancer cells, but not normal cervical cells, are efficiently killed by artemisinin A dose-response curve is shown for the effects of dihydroartemisinin (DHA) on the viability of normal cervical cells (HCX) and 3 cervical cancer cell lines (HeLa, SiHa, Caski) The cervical cancer cell lines demonstrated 80% loss of viability within 3 days of treatment with 25 ?M DHA. HeLa cells were the most sensitive, exhibiting 95% cell death at 25 ?M DHA.”

    There are many brands of liposomal artemisinin on the market and finding one that is of good quality and readily absorbed can be a challenge without an experienced doctor’s input. The one I buy costs approx $90 for a month’s supply (no insurance coverage on this one).

    I actually take liposomal artemisinin for its anti-microbial and cartilage-protective effects for RA/Lyme and I love that it also has protective effects from various cancers. Doses need to be carefully titrated by a doc who knows what they’re doing to prevent any neurotoxic effects and also to prevent resistance issues (this is why I pulse it and take breaks occasionally).

    http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2758403/

    http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2275452/

    Btw, not so surprising that minocycline (tetras), hydroxychloroquinine and artemisinin all have anti-protozoal effects. 😉

    #372544
    lemons
    Participant

    #372542
    scingram
    Participant

    Thanks so much for the info. I’ve never heard of Coriolus Versicolor of Artemisinin. I’ve started reading some about them and will continue and plan to discuss them with my doctor, too. The oncologist recommended I get the HPV vaccine as well, and I have one more shot to go in that series.

    It’s really amazing to read how all these things are interconnected. I think I always saw health as pretty compartmentalized…like for the RA, I saw a rheumatologist, for a sore throat, a general practitioner, etc. Now I’m beginning to see things differently.

    Also, thanks for the info on the fermented food. I will definitely be looking into that as well.

    #372541
    Woods1977
    Participant

    Hi Sarah,

    Although I

    #372540
    m.
    Participant

    In the beginning, I had trouble finding (antibiotic) help for my RA. At the time, we had a very high deductible insurance plan, so we were paying out of pocket.

    I encourage you to think strategically, and try not to be deterred. You might be able to get your prescription for abx long distance, with an initial outlay of cash to travel to a good AP doctor. Then, a local MD with whom you have insurance coverage can run routine monitoring, tests, etc.

    I had to proceed without a lot of testing and extra expenses. Not ideal, but we could not afford “perfect”.

    After my initial flare, I got busy getting that prescription secured and beginning treatment. I did end up traveling, and it was one of the best decisions I made.

    Good luck! You can do it!

    #372539
    scingram
    Participant

    Thanks for the welcome and encouragement. We’re definitely making a lot of sacrifices to put my health first. Sometimes it’s hard to believe it’s going to pay off, though.

    I had another setback with taking antibiotics, as I had ANOTHER gastrointestinal perforation (one should be enough), as I was preparing for a colonoscopy. The scan from that incident may indicate ulcerative colitis, but we are still waiting for my gut to heal in order to do a colonoscopy.

    However, I’ve been reading some older discussions and saw where LDN is used for UC and RA. And I saw a link where it is sold for half of what I was paying! Who knows…maybe time will see me give that another try.

    While I am off Minocin, I am on 2 antibiotics (Metronidazole and Ceftibuten) and an antifungal (Fluconazole) and eating a liquid/soft foods diet, my arthritis pain is barely noticeable. Small blessings.

    If you

Viewing 8 posts - 1 through 8 (of 8 total)

You must be logged in to reply to this topic.