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[user=515]orchid[/user] wrote:
Can you truly go into full remission on an AP treatment and live symptom-free? Thanks
Hi Orchid. I can't explain the reluctance to embrace AP any better than has already been posted, but I would like to respond to your question on remission. I think it's a qualified yes. I have RA — last summer I had trouble turning over in bed. This past weekend I rode my bike along our forest preserve trail for almost 2 hours. I was tired, but my body worked fine.
I think my rheumatologist would say I am in clinical remission, because at this moment there are no visible/clinical signs of inflammation. I do still have some symptoms (some weakness and fatigue) but I am stronger than some healthy people I know. My arms — which I could not raise much above my shoulders last spring, are almost ready to try handstands again.
I was caught early, and I guess my disease was mild — it sure didn't feel mild to me. But I am living pretty close to symptom free right now. Will it last? I don't know. I just know I am going to enjoy every single day I can, and work hard to care for my body the best way I know how. I have The Road Back to thank.
Bonnie
Bonnie Lou
RA 02/07,AP 10/07
Minocycline 200mg MWF; Plaquenil 100mg 3 days/week
Fish Oil, Ubiquinol, Turmeric, Vit C (2 grams) , MultiVit, Magnesium, Astaxanthin, D3 (5000), probiotics and a daily dose of yoga!Thank you all for your replies. I appreciate all of the thorough information and you taking the time to write it!
I will definitely look into the book you mentioned and have a few other questions for those who have posted:
1. How early after your RA began did you begin treatment?
2. How severe were your symptoms (scale 1-10 and number of joints)?
3. What other treatments/meds did you try before trying AP?Thanks so much!
Yes agree Tiff that it's very probably both. And that's one of the reasons the aim is to get the body's immune system to eventually be able to take over to handle the pathogens – which will never be completely erradicated – and which we will continue to be exposed to throughout our lives. Lynnie
Be well! Lynnie
Palindromic RA 30 yrs (Chronic Lyme?)
Mino 2003-2008 100mg MWF - can no longer tolerate any tetracyclines
rotating abx protocol now. From Sep 2018 MWF - a.m. Augmentin Duo 440mg + 150mg Biaxsig (roxithromycin). p.m. Cefaclor (375mg) + Klacid 125mg + LDN 3mg + Annual Clindy IV's
Diet: no gluten, dairy, sulphites, low salicylates
Supps: 600mg N-AC BID, 1000mg Vit C, P5P 40mg, zinc picolinate 60mg, Lithium orotate 20mg, Magnesium Oil, Bio-identical hormones (DHEA + Prog + Estrog)[user=515]orchid[/user] wrote:
…a few other questions for those who have posted:
1. How early after your RA began did you begin treatment?
2. How severe were your symptoms (scale 1-10 and number of joints)?
3. What other treatments/meds did you try before trying AP?Hi Orchid,
In answer to your questions above:
1. I began antibiotic therapy about 6 weeks after getting Lyme and was diagnosed with RA about a month later.
2. I had swift onset, very severe RA, affecting every joint. Pain unbearable and I'd give it a 9 or 10, although it might just be because I couldn't imagine the pain could get much worse. I was bed and sofa ridden for several months.
3. Here's my Personal Progress Thread that outlines my meds to date:
http://www.rbfbb.org/view_topic.php?id=301&forum_id=3
You'll find the Progress Threads of other BB members here:
http://www.rbfbb.org/view_forum.php?id=3
If you'd like to add your own Progress Thread, please feel free to do so. Not only does it help to look back as you add to your journaling to see how far you've come, other newcomers (like you) get to see what you've done on your road to wellness. 😀
Peace, Maz
Orchid – I am not sure what you hope to find out with those questions, perhaps comfort in knowing that this may be an avenue to pursue?? I can tell you that you will get the full range of responses for all 3 questions. People have started this treatment early, mid-term and after a very long time – my own was after 16 years. My testimonial is available on the main page of this site along with many others. My recent progress is documented in the Personal History section of this Board. You can learn an awful lot by reading those testimonials and progress posts. Lynnie
Be well! Lynnie
Palindromic RA 30 yrs (Chronic Lyme?)
Mino 2003-2008 100mg MWF - can no longer tolerate any tetracyclines
rotating abx protocol now. From Sep 2018 MWF - a.m. Augmentin Duo 440mg + 150mg Biaxsig (roxithromycin). p.m. Cefaclor (375mg) + Klacid 125mg + LDN 3mg + Annual Clindy IV's
Diet: no gluten, dairy, sulphites, low salicylates
Supps: 600mg N-AC BID, 1000mg Vit C, P5P 40mg, zinc picolinate 60mg, Lithium orotate 20mg, Magnesium Oil, Bio-identical hormones (DHEA + Prog + Estrog)Hi
80 % is a fabulous success rate –its a bit higher than that for scleroderma and lowere than that for RA —I dont think there are very many medicines on the entire market that can claim an 80 % success rate –THe newer biologics that are used to treat RA have no better than a 60 % success rate and that is about the success rate for RA patients using AP
Richie
Tiff – It is true that twin studies, especially twins raised separately, can help with genetic analyses. These studies are complicated by a lack of twins raised separately who just happen to have Fribromyalgia, for example, and especially if they aren't exactly sure what Fibromyalgia is (since they don't know what causes it). Sometimes the samples are perilously small so the conclusions can only be tentative. Even an RA diagnosis is an election process wherein the patient must have 6 or so of any 10 symptoms to get the diagnosis, again implying a lack of precision in the diagnosis which stems from a lack of sure knowledge about what causes the disease. So you can test for a genetic predisposition to get a disease that you can only describe imprecisely. It's all very muddy and at this stage of clinical medicine there is still quite a lot of groping in the dark to just define the problem, let alone to solve it. Twin studies are rapidly being superseded by genetic sequencing but that is still an infant science too.
My point of mentioning genetics is because Orchid's father and sister have RA and now she shows signs of RA. That is a high probability of a genetic propensity toward RA. Genetics do not cause disease but they do serve as a pathway for disease to travel.
Based upon her family history, I am saying genetics plays a role. Obviously, environmental exposures would be similar in families as well.
Susan
Susan – It may indeed. But some researchers claim that CWD bacteria can be transmitted by sexual contact and in utero as well. I have challenged a number of recovering patients to look about their immediate nuclear families to see how many members either have clear AI disease or very suspicious symptoms. When first on the AP treatment it doesn't seem so obvious but once we start healing we very frequently see clear signs in our close family members. I am not genetically related to my wife or daughters but all 4 of us have conditions that have improved with antibiotics. Wife and daughter no longer exhibit asthma. Oldest daugher has ADD which gets remarkably seriously temporarily worse with a dose of a mere 25mg or 50mg of Minocycline. We haven't pursued that enough to validate whether ADD will ultimately yield to antibiotics but it is extremely intriguiging, no? When we starting treating Cricket (wife) with antibiotics for asthma she first started herxing with bilateral RA symptoms in her hands and fingers before she started herxing with asthma symptoms. She had never had joint pain before and this only on the off dose days. I am deeply suspicious that the only genetics at play are those of the microbes. But until someone does the lab work sometime in the future we can only speculate. But look at your own family aggregation. Any suspicious symptoms out there?
john
The mycoplasma organism has been found in the blood and body fluids, spinal fluid, bone marrow, urine, and in the lungs, nose and mouth. The mycoplasma is reported to be able to survive for two hours outside the body (Baseman & Tully, 1997).
Maybe the genetic link is the susceptability of reaction to the mycoplasma.
No one in my family has ANY thing like this. I'm the only one in any chain of my family. My problems began after a traumatic experience involving the now ex. I think I weakened my immune system and the bugs moved in because they're opportunistic that way. I also think my lack of genetic susceptability is the reason why I have the weird possibly PRA rather than straight up R.A. and negative test results even five years after it all began.
Jenn
John,
Your story of whole house cleaning using mino makes me think of the time when we lived in Houston, TX. One day I noticed several flea bits on my legs and feet. My husband said, we got to fog the place. So we did. We cleaned our bedding, changed the clothes and got everything cleaned…. and we fog the place. we drove to school to hide out for whole day. After a few days later, we still found fleas inside the place…. why??? We did not fog our car. Ha…. so we did entire cycle again, but this time, we fog our car the night before and the next morning we fog our home before we left. No more fleas.
If infectious theory holds, we have to treat the whole family in order to get better together, perhaps including the pets inside the house. Every one carries mycoplamas in their body, it is just when it gets over grow, we get sick. Lower immune system plays an important role. I am sold on this hypothesis even though I am not a scientist.
John,
Very interesting and I believe right on target about spreading it through the family. My husband has very similar symptoms though not RA. He tested positive for Lyme at the same time I did and he has suffered CFS ever since I have known him. He is not receiving treatment for any of this. I will show him this thread.
Genetics still play their part in determining how your body deals with the microbes, (I believe). Your wife ….asthma, Your daughter….ADD, You….RA. (You lucky guy!:cool:)
For 1 yr I was told nobody in my family had ever had RA. During this time, my mother absolutely refused to believe I had RA. She just felt it was lyme. Then in Dec, my rheumy found inflammation in all my joints and she was very upset since she had me on MTX at the time. She said I have “explosive RA to the extent of which she has only seen 3 or 4 cases as bad as me in all her career”. And I was feeling good at the time too. My RA did come on sudden and like Maz, I was originally housebound. I remember reading if you had over 30 joints involved you had a 75% chance of dying within 5 yrs. I had way more than 30 joints involved initially.
Listening to the dr that day was sickening. But I was in for more upsetting news. On the long (3 1/2hr) ride home, my mother confessed something she and everyone else had been hiding from me. They have the “head-in-the-sand” syndrome.
Seems Mom's first cousin died of RA at the age of 58. At the time of her death, she had Zero cartilage left in her body. Mom says she was horribly deformed. Mom offered to show me a picture. I declined.
So, yes it is in my family from someone I never met. However, I do not take that to mean I have no hope. Nope. I am believing it is microbes and my body's poor ability to produce glutathione which would enable me to clear the toxins from the bugs. My genes just determined how I would handle the bugs. I think it is empowering to know this and take steps to assist my body where needed such as IVs of glutathione.
The fight goes on.
Susan
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