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All my autoimmune labs that I know of are normal. Now I don
Dancing feet are Happy feet!
Nov 2007 Raynauds, Jan 2008 Carpal tunnel, Aug 2008 Rotator cuff, May 2008 MCTD, July 2013 H.Pylori, Aug 2015 Vaginal Atrophy
Medications: Minocycline 100 mg MWF, Low Dose Naltrexone 4.5mg, Acidophilus 1-3 a day, Estradiol patch
Vitamins etc.: Vitamin A, Vitamin E, Vitamin D-3 1000 IU a day, Aspirin 325 mg, Magnesium, B6, B12, Beta-carotene, Cranberry, Garlic, Multi Vitamin, and Glucosamine & Chondroitin with Boswellia & Manganese, & MSN, Grape Seed Complex, MetaCarol – my personal opinion is that is is probably too soon to consider coming off medication. In fact, alot of people stay on a maintenance dose ongoing (even after several years on AP) as insurance.
By the way, I have read your Personal History update. I would be thinking about gluten intolerance as a distinct possibility for you (it is rife amongst those of us with chronic conditions). I get bloating and a very distended stomach if I ingest any gluten. 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 Carol,
I think you’re an RN, so you will likely know much more about all this than me, but just thought to mention some things that popped to mind in case it might help in some way…in your signature line you write:
Dancing feet are Happy feet!
Nov 2007 Raynauds, Jan 2008 Carpal tunnel, Aug 2008 Rotator cuff, May 2008 MCTD
Medication: Minocycline 100 mg MWF, Acidolphilus 1 a day, Estradiol patch
Vitamins etc: Vitamin A, Vitamin E, Vitamin D, Aspirin 325 mg, Magnesium, B6, B12,
Beta-carotene, Cranberry, Garlic, Multi vitamin with iron, and Glucosamine & Chondroitin with Boswellia & Manganese, & MSN, NEW-Grape Seed ComplexThe things that popped out for me were the “Acidolphilis 1 day” – just wondering if one probiotic per day is enough while on longterm AP to control candida in the gut – in addition to gluten sensitivity, candida in the gut can cause bloating and other gut issues. On my PB8 bottle it recommends 2 caps a day, but I actually use 8 to 10 caps a day to regulate my gut. I am on heftier abx protocols for Lyme, but usually folk will take more in the way of probiotics than the daily recommended dose even while on low dose AP.
Also, noticed you’re on the “estradiol” patch – estrogen in and of itself can also promote candida. E.g. women who get repeated yeast infections whlie on the BCP.
Another interesting thing I just came across in Dr. Brown’s writings is that he advised staying away from Vit A and D in high doses. This is pretty interesting in terms of the Vit D discussions that often come up here, but not only that, in recent times, the high dose Vit A drug (Accutane), which is used for cystic acne has now been tied to triggering Crohn’s colitis. So, just wondering if Vit A supplementation might also cause some gut issues in some folk even in lower doses? Here is the quote mentioned from Dr. Brown’s Hypersensitivity talk, given sometime during the 70s and transcribed:
Dr. Brown said,
“The fatigue of rheumatoid arthritis is often a very severe problem, and the only medication I have ever found to be highly effective against it is Dexamil in extremely small doses, maybe
we suggest their use, avoiding large doses of Vitamin D or Vitamin A
I think that is more likely to be a general warning based on the fact that they are fat soluble and build up in the body versus water soluble vitamins from which the body takes what it needs and then excretes.
Megadoses of vitamins A, D, E or K can be toxic and lead to health problems.
http://www.ext.colostate.edu/pubs/foodnut/09315.html
LynnieBe 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)Thank you, Lynnie; I agree that it
Dancing feet are Happy feet!
Nov 2007 Raynauds, Jan 2008 Carpal tunnel, Aug 2008 Rotator cuff, May 2008 MCTD, July 2013 H.Pylori, Aug 2015 Vaginal Atrophy
Medications: Minocycline 100 mg MWF, Low Dose Naltrexone 4.5mg, Acidophilus 1-3 a day, Estradiol patch
Vitamins etc.: Vitamin A, Vitamin E, Vitamin D-3 1000 IU a day, Aspirin 325 mg, Magnesium, B6, B12, Beta-carotene, Cranberry, Garlic, Multi Vitamin, and Glucosamine & Chondroitin with Boswellia & Manganese, & MSN, Grape Seed Complex, MetaHi Carol;
Foods can have a devastating effect on the immune system and I know all about it,learned the hard way.I had no warning at all that I had Celiac disease which ended up causing yeast and multiple food sensitiveties.I have a fabulous doctor who figured things out quite quickly.She had me do 2 gluten tests.If you live in the U.S go to http://www.enterolab.com and order the 99$ gluten test,you do not need a doctor for that and they e-mail you the results.She also did 2 food tests and again if you are in the U.S this is a good one,have your doctor do a blood draw and send it to US Biotek 13500 Linden Ave north,Seattle,Washington 98133 This test cost 92$ but that was a few years ago.I showed high IgG and IgE to lots of foods,and could not eat anything in the citrus family,nothing”cow”, no lamb no grapes,no wheat,no spelt,no rye,no barley no legumes,no fish,nothing from sugar cane and nothing in the nightshade family.It took a good 18 months to clear the damage and then I slowly added foods back over a couple years.I still can’t eat any potatoes,legumes,gluten or beef without getting sore the next day because these foods just rile my immune system.
Doctors are not sure if Celiac is the cause of our disease or if it happens once we get sick but know for sure that 70+% of people with any chronic disease has a gluten intolorance and that one in a hundred seemingly well people has it unbeknownst to them.
Hope this helps,LynneThank you for alerting me to the signature link Carol! That was the link that worked for the old forum software, now defunct. I have updated the link and also provided one to my original testimonial in 2007. Lynnie
Note: what I also need to do is go in and prune all the early posts in my Personal History that havent successfully moved across to this Forum. We think this happened with posts that were originally formatted externally (such as in Word) and then pasted in – the “language” didnt move across when we changed formats last November. I’ll go in and “tidy up” over the next week, will have a look and see if I can find any of the old text and reformat and delete all else.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)Thank you, Maz; well today I have a sore in my scalp so maybe it
Dancing feet are Happy feet!
Nov 2007 Raynauds, Jan 2008 Carpal tunnel, Aug 2008 Rotator cuff, May 2008 MCTD, July 2013 H.Pylori, Aug 2015 Vaginal Atrophy
Medications: Minocycline 100 mg MWF, Low Dose Naltrexone 4.5mg, Acidophilus 1-3 a day, Estradiol patch
Vitamins etc.: Vitamin A, Vitamin E, Vitamin D-3 1000 IU a day, Aspirin 325 mg, Magnesium, B6, B12, Beta-carotene, Cranberry, Garlic, Multi Vitamin, and Glucosamine & Chondroitin with Boswellia & Manganese, & MSN, Grape Seed Complex, MetaDear Jan,
It would be excellent to get the answer from a REAL AP doctor! I used to be a nurse but this is AP is new to me. I think the answer would be unique to each patient depending on how sick you have been and how long you’ve had the disease. As I’m in the mist of this I’m aware of the damage that this disease has left behind and I don’t want any more damage!!! But I don’t believe that taking a medication past it’s useful time is beneficial. I would not take the antibiotic indefinitely once your symptoms are gone and your labs are normal.
carolDancing feet are Happy feet!
Nov 2007 Raynauds, Jan 2008 Carpal tunnel, Aug 2008 Rotator cuff, May 2008 MCTD, July 2013 H.Pylori, Aug 2015 Vaginal Atrophy
Medications: Minocycline 100 mg MWF, Low Dose Naltrexone 4.5mg, Acidophilus 1-3 a day, Estradiol patch
Vitamins etc.: Vitamin A, Vitamin E, Vitamin D-3 1000 IU a day, Aspirin 325 mg, Magnesium, B6, B12, Beta-carotene, Cranberry, Garlic, Multi Vitamin, and Glucosamine & Chondroitin with Boswellia & Manganese, & MSN, Grape Seed Complex, Meta@quilter wrote:
Dear Jan,
It would be excellent to get the answer from a REAL AP doctor! I used to be a nurse but this is AP is new to me. I think the answer would be unique to each patient depending on how sick you have been and how long you’ve had the disease. As I’m in the mist of this I’m aware of the damage that this disease has left behind and I don’t want any more damage!!! But I don’t believe that taking a medication past it’s useful time is beneficial. I would not take the antibiotic indefinitely once your symptoms are gone and your labs are normal.
carolHi Carol,
Unfortunately, we’re all just patients here, but I can send you Dr. S’s contact info if you’d like to email with an experienced AP Physician on this matter? Dr. S., a doctor of osteopathy in Iowa, received his training directly from Dr. Brown and has treated thousands of rheumatic patients over the years. Now that he’s in semi-retirement (many still travel to him for the 5-day IV clindy series), he’s very kind to answer patient questions by email and also to consult with local physicians open to the therapy.
Dr. Brown’s ultimate goal was to get patients to a remissive state and, according to the book, The New Arthritis Breakthrough, when all labs and symptoms normalized for a reasonable length of time, he would try to have patients come off their abx therapy. Patient experience, however, has shown that relapse is fairly common (period of stress, illness, surgery, unrelated infection – anything compromising immune function) and the risk/benefit of remaining on a low maintenance tetracycline dose is neglible in terms of risk and preferable in terms of benefit.
Tetrcyclines in low doses are very benign and safe for longterm use:
I have been honored to speak with patients who have used AP for decades with no issues and they have been able to maintain remission well. I think the main concern for most rheumatics is the risk of relapse. AP is not generally considered to be a “cure” and treating relapses can be more challenging in some cases. This is why most folk prefer to remain on a low, pulsed maintenance dose rather than risk relapse, but it is a very personal decision that should be made between individual patients and treating physician. 🙂
Dear Lynne,
Thank you for sharing your experience: it scares me. 🙁 You have had a long hard journey. I canDancing feet are Happy feet!
Nov 2007 Raynauds, Jan 2008 Carpal tunnel, Aug 2008 Rotator cuff, May 2008 MCTD, July 2013 H.Pylori, Aug 2015 Vaginal Atrophy
Medications: Minocycline 100 mg MWF, Low Dose Naltrexone 4.5mg, Acidophilus 1-3 a day, Estradiol patch
Vitamins etc.: Vitamin A, Vitamin E, Vitamin D-3 1000 IU a day, Aspirin 325 mg, Magnesium, B6, B12, Beta-carotene, Cranberry, Garlic, Multi Vitamin, and Glucosamine & Chondroitin with Boswellia & Manganese, & MSN, Grape Seed Complex, Meta
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