Home Forums General Discussion New to AP and this Site… Looking for encouragement!

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  • #307059
    Woods1977
    Participant

    Hi friends

    #365472
    Maz
    Keymaster

    @Woods1977 wrote:

    I found an AP doctor in my area through the Road Back and began treatment in July, 2012. My doctor did lots of blood work and sure enough the results showed my mycoplasmas were in the high range. Like several of you I experienced a flare between weeks 2-3 of treatment, then finally during week 4 I had a HUGE breakthrough

    #365473
    jcorchard
    Participant

    Maz that was really encouraging. Thank you for that post.
    Like Michelle I’ve just started the protocol in June. I initially self-managed doing the 3 day pulse with Mino until I was able to find an AP physician who is now guiding me. She put me on a combination of Clyndamycin, Erythromycin and Amoxycillin twice a week – she found out from my symptoms that I have a-typical RA and that I also have fibromyalgia and lyme. I have been on what I thought was a good diet, but she said that having dairy, gluten and high-salycilate food wasn’t helping so I have been off of them since then. I started the diet and the therapy just a couple of months ago and within a couple of weeks, I began to feel a lot better. Like you Michelle, I hadn’t felt that good for awhile and really thought I was finally on the track to remission… But it was short-lived. A few weeks ago I began to decline. This time, I am worse than I’ve ever been. No matter what I do, I can’t get rid of the swelling in my joints. The funny thing is, I am not in pain like I was before, I have stiff & swollen joints. Before this therapy, my body would feel like lead and be sore in various spots and only had mild swelling. Now the stiffness and swelling are quite bad but I am not in as much pain. This has been really bothering me and I have been trying to keep myself from negative thoughts but when I see swollen joints that I have never seen before, it really gets me down. My AP D said that it is an infection that I have caught somewhere. She has put me on a 5 day pulse with different set of anti-biotics (rescue drugs) to see if I can get the swelling down and the stiffness. I am on Day 2 and so far there has been no change at all.

    I am really hoping that this is only temporary and will get better in time.

    #365474
    Eileen
    Participant

    “New to AP and this Site… Looking for encouragement!”

    To all the newbies — this site has been a true life saver for me. It is filled with knowledge, wisdom, common sense and plenty of encouragement, loving, kind and caring people. Just the right mix to get us going, walking and recovering on AP therapy. Stay around. There is no quick fix to any of these rheumatic conditions/diseases. They are, however, treatable with great results with remission down the road. You will find your road back. Keep working it!

    Two years ago, I was housebound, unable to walk and do simple, everyday things, unable to play and laugh with my children ๐Ÿ˜ฅ My therapy hasn’t come without lumps and bumps; and there have been many.

    Today, I am walking, not running. I am not housebound and am able to drive again. I’m doing simple, everyday things. I’m able to hold onto a tube of mascara again (at least for today). And most importantly, my children have their mom back:) I have been blessed. No doubt there is a long way for me to go, but if this is as good as it gets, I can accept this.

    Believe in yourself ๐Ÿ˜‰ and your treatment! We’re glad you found us!

    All the best to you and your journey.

    Eileen

    #365475
    Marybeth
    Participant

    Hi Michelle,
    What is so wonderful about this site, everyone shares their experiences. You collect information from so many and apply some of it to yourself to see if it helps. I do not have an AP doctor and am going through my rheumatologist who is not versed in AP. He knows of Dr. Brown but that is about it. So it has been trial and error and lots of reading on my own. I do see a naturopathic doctor who helps me with supplements for inflammation and probiotics. I also keep a food journal along with how I felt the day of, so, if I am not feeling great I can look back at what I ate.

    One of my biggest lifesavers has been exercise. Even if you can do just a little, I believe it helps immensely. There are some that have added LDN (Low Dose Naltrexone) to their protocol. I will be seeing a neurologist next month to discuss possibly adding it.

    It is a roller coaster ride but just hang in there and know that you are doing the right thing. This site is a gold mine of information!

    Marybeth

    #365476
    Woods1977
    Participant

    All,
    Thanks for your kind words of encouragement… It’s just what I needed to hear because I feel like crap today. Not only having a flare, but just really “out of it”, which is making it difficult to concentrate at work. ๐Ÿ™

    Looking forward to hearing from my doctor regarding my most recent labs. Also, I’ve decided to be tested for food sensitivities as my AP doctors swears up and down that his most successful patients follow a special diet based on their food sensitivities.

    As a side note, I feel like my doctor is fairly experienced with the AP protocol. He has done blood work to check for other infections aside from mycoplasma. He’s also discussed swtiching either the dosage or type of antibiotic I’m on- but does’t want to do anything until my labs come back… So I feel like he knows what he’s doing. I’ve also read the book “The Road Back” as well… I’m actually reading it again to get my encouragement back up.

    Someone wrote on this site about swelling and pain- I can relate. Initially my RA symptoms were just “stiffness and soreness”- and it was difficult to move as a result. Now I can move about a tons better, but my pain and discomfort are worse than before beginning AP therapy. I’m also stubborn- I don’t want to take any meds because I hate taking anything… I’m concerned about my liver, kidneys and stomach, so I don’t want to take anything unless I absolutely need to. OH, and I’m still exercising almost daily… I’m not a runner, but I do 20 minutes of cardio 6 days a week- and your right, it does make a difference… ๐Ÿ™‚

    Again you guys are awesome… your comments and advice are welcome!! Thanks again…
    Michelle

    #365477
    Woods1977
    Participant

    Sorry one more question for Maz…
    Can you tell me specifics regarding your Minocin induced Lupus?

    #365478
    Maz
    Keymaster

    @Woods1977 wrote:

    Sorry one more question for Maz…
    Can you tell me specifics regarding your Minocin induced Lupus?

    Yes, of course…I documented this experience in my Personal Progress Thread, the link to which you’ll find in my signature line at the bottom of this post. As you’ve only been on AP for 4 months, I don’t think you need to be too concerned about DILE (drug-induced lupus erythematosis) from mino just yet. If it occurs, it usually develops with chronic use of the offending drug after about one to two year’s (at least as described in all the conventional literature I’ve across), but I suppose anything is possible. ๐Ÿ˜‰

    http://www.ncbi.nlm.nih.gov/pubmed/9382560

    “…minocycline-induced lupus occurs on average 2 years after the initiation of therapy.”

    It is very simple to test for DILE…you’ll find these labs at the same link. It’s also quite rare, affecting about 1:10000. While I tested positive for DILE from minocycline with labs, I also seemed to develop a hypersensivity/serum sickness-like reaction upon re-challenging with it after a break.

    Hope this helps. If you have any questions about this, I’ll do my best to answer. There is quite a bit of info online about this condition, but also a lot of misinformation. DILE, for instance, is not the same as real lupus, though it manifests many of the same symptoms as real lupus. It also clears up completely upon withdrawal of the offending drug.

    #365479
    Woods1977
    Participant

    Thanks Maz… appreciate your information, this is very helpful!!

    #365480
    A Friend
    Participant

    @jcorchard wrote:

    I initially self-managed doing the 3 day pulse with Mino until I was able to find an AP physician who is now guiding me. She put me on a combination of Clyndamycin, Erythromycin and Amoxycillin twice a week – she found out from my symptoms that I have a-typical RA and that I also have fibromyalgia and lyme. I have been on what I thought was a good diet, but she said that having dairy, gluten and high-salycilate food wasn’t helping so I have been off of them since then. I started the diet and the therapy just a couple of months ago and within a couple of weeks, I began to feel a lot better. ….really thought I was finally on the track to remission… But it was short-lived. A few weeks ago I began to decline. This time, I am worse than I’ve ever been. No matter what I do, I can’t get rid of the swelling in my joints. …..I am really hoping that this is only temporary and will get better in time.

    JC, I came to the Board to post some information “somewhere” because I learned the hard/long/painful way how hidden this information can be from so many of us. I was very rigid about a good diet, etc., and hadn’t a clue that I had acidosis big time, even though my labs for the mostpart my physician said looked good — guess that diet was doing something… but not able to change the acidosis. When we become acidotic, the body can use most of the available minerals to neutralize acidic wastes about as fast as we consume them… PLUS our digestive capabilities often lack digestive enzymes to extract needed protein and amino acids that (amino’es known as “essential amino acids” which are a necessary part of our body’s detoxification system.

    These are links that I believe may help someone else with the kind of longterm problems I had… even while looking pretty well and doing pretty well… until the acidosis started producing such wearing-out pain. It was also during this lengthy period of time that my bone density went from “the high range of normal” to problems I suddenly became aware of that were shocking!… involv ing damage to my bones. Don’t mean to scare you and others, but we all need to know this…. and rule it in OR rule it out. Good luck to you. AF

    Acid Diseases…. Fibromyalgia, Lactic Acidosis, etc

    http://www.8candlesonline.com/purify/what_is/about.html

    http://www.webmd.com/a-to-z-guides/lactic-acid-blood-test

    http://drmyhill.co.uk/wiki/Fibromyalgia_-_possible_causes_and_implications_for_treatment

    Fibromyalgia – possible causes and implications for treatment

    http://www.greatplainslaboratory.com/home/eng/fibromyalgia.asp

    Fibromyalgia and Chronic Fatigue

    http://www.ncbi.nlm.nih.gov/pubmed/15180033

    Mitochondrial encephalomyopathy with lactic acidosis and strokelike episodes (MELAS): a mitochondrial disorder presents as fibromyalgia.

    #365481
    Anonymous
    Participant

    NEED HELP!!

    Das anyone know what antibiotics are used on AP for streptococus?? (I have scleroderma)
    Hoping for reply

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