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Hello all…I can't believe it but I haven't been on this site for probably 8+ years other than to look up the address again b/c I am recommending AP to someone. I have been one of those tremendous success stories. Very painful RA, bone erosions, extensive joint damage to one hand when I began AP. My symptoms disappeared. I knew of others who were on the traditional regimes AND taking anti-inflammatories AND progressing and here I was taking motrin only for the random headaches, etc. I went off AP when I was pregnant with our third, and after delivery the RA returned with it's customary vengence. Went back on AP, again with tremendous success.
My doctors have prescribed AP, and have even admitted, albeit reluctantly, that I “appear” better but they are so waiting for me to fail.
And now I feel as if I AM beginning to fail…..after all these years, I can't believe it. My hands and wrists (which already had a great deal of damage) are stiff and tender and warm to the touch and I am very frightened and depressed that the AP is beginning to fail.
I certainly can not turn to my doctors who simply believe that I have been in denial for 10 years (though the frequent blood test and X-rays counter this). What advice?
Molly
Hi Molly,
Very nice to meet you and so sorry you've had to make a return here after so many wonderful years of remission.
Have you thought of trying IV clindamycin for a booster? Or, adding a second antibiotic….or changing up your mino to doxy and zith, for instance? Have encountered other AP old timers who find that rotating their mino after a number of years does the trick. They do this for a period of time – say a year – and then go back to mino.
Not saying this is what is happening in your case, but my personal suspicion of why this sometimes happens is because, when remission is reached, other opportunitic coinfections seize the opportunity to try to get the upper hand. Strep L-Forms, perhaps…or if one has had Lyme in the past, another coinfection like babesia.
You'd probably have to find your self a good AP physician willing to help you with a protocol change as your current docs are unsupportive. If you'd like a listing for your state and/or are willing to travel to one of the best AP physicians, just jot a note to apdoctors@roadback.org
Also, have you considered candida as a possibility?
Wishing you every success of turning this around!
Peace, Maz
[user=588]mollys[/user] wrote:
Hello all…I can't believe it but I haven't been on this site for probably 8+ years other than to look up the address again b/c I am recommending AP to someone. I have been one of those tremendous success stories. Very painful RA, bone erosions, extensive joint damage to one hand when I began AP. My symptoms disappeared. I knew of others who were on the traditional regimes AND taking anti-inflammatories AND progressing and here I was taking motrin only for the random headaches, etc. I went off AP when I was pregnant with our third, and after delivery the RA returned with it's customary vengence. Went back on AP, again with tremendous success.
My doctors have prescribed AP, and have even admitted, albeit reluctantly, that I “appear” better but they are so waiting for me to fail.
And now I feel as if I AM beginning to fail…..after all these years, I can't believe it. My hands and wrists (which already had a great deal of damage) are stiff and tender and warm to the touch and I am very frightened and depressed that the AP is beginning to fail.
Mollys would you mind emailing me kindly rosemary@roadback.org – what fungal treatment you used during this 10 yrs of treatment? It is a huge issue here and I need to find out what everyone is using to combat this discomfort from treatment with abx.
I certainly can not turn to my doctors who simply believe that I have been in denial for 10 years (though the frequent blood test and X-rays counter this). What advice?
Molly
Hi Molly,
I'm so glad to hear of your ten year remission (it gives us newbies such hope) and sorry to hear about your recent flare.
I think Maz is right on the money about switching round the antibiotics. That's the first thing to try I'd say.
Another thought, and please don't take offence at the personal nature of the question, is is it possible that you've entered menopause and are encountering hormone fluctuations?
I ask because I've recently been taking clomid (a fertility drug to help me get pregnant) and it has the effect of increasing all the hormones, but especially estrogen. I've noticed, without a shadow of a doubt, that on the days when my estrogen levels are dropping, such as after ovulation, or in the run up to my period, my arthritis flares very suddenly and very badly indeed. It is only through taking the clomid, and it amplifying all my hormones, that I have noticed this.
I've done some research that would suggest that estrogen has a protective effect against excess inflammation and also helps improve the functioning of the immune system, all at the same time. So when we have declining estrogen, higher inflammation and worsening control of infections results. This is an oversimplified explanation and I am just a lay-person, so take this at face value as the ramblings of a half-wit.
Anyhow, that said, there's a lot of evidence that women get auto-immune diseases at times of hormonal flux (usually estrogen decline) such as after pregnancy and at menopause. So this is not a new or outlandish idea.
If you are entering the menopause, it may be worth talking to your doctor about the possibility of taking HRT, depending on how you feel about that sort of thing? It might just help control your RA.
Sorry to be so long-winded, but I do wonder whether previously well controlled RA, or a seemingly previously healthy person, can quickly succumb to bacterial infections as menopause starts. I have several friends of my own (my mum, cousin and mother-in-law included) who are examples of exactly this, with RA starting at menopause as if by clockwork.
I do hope you get better soon and keep us posted.
Best wishes,
ruth
Maz….thanks for your reply. I did not know that candida could cause complications related to joints (naively thought yeast infections were more mere annoyances). I have taken diflucan (1 dose pill) in the past when it has become too annoying. Having just read up on it, this overgrowth of candida may sometimes need extensive long term treatment. Any suggestions? Also, which probiotics have others had success with (are we allowed to mention brand names since many of the bacteria may not survive the manufacturing process?).
Am willing to travel for a doctor who not only is supportive of AP but educated on it so thank you for the link.
Molly
Hello Ruth….everyone should have access to this educated group! At 44, I am on the cusp of that next female adventure (put it in positive term and it impacts positive outcomes!). Not to sound like a real dunce but since I am still regular, are my hormones still at somewhat of a constant state?
Also, am somewhat hesitant about HRT b/c I had a pulminary embolism with the last baby (another RA blessing….a predisposition to PE's) and I could “potentially” be more inclined to clotting now. Will definetly discuss this with my Gynogologist. If the clotting issue remains, I wonder what other alternatives there may be?
Molly
Hi Molly – welcome back even though it's for a blip! Maz and Ruth have given you some good suggestions. Let me just add to Ruth's suggestion re hormones. There are alot of AP docs who believe strongly in the role that hormones play. Many of them suggest using bio-identical versions of them (estriol – the most benign of the 3 estrogens – and progesterone particularly). I am attaching some notes from an online chat on another site by an AP doc which mentions this. Hope you find some answers soon. Lynnie
PS You can have a test that will tell you if you are peri-menopausal
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)Just wanted to mention here on the hormone issue – In Australia they have found an alarming decrease in breast cancer since the drop in hormone replacement therapy. I see Lyyni you are referring to a more benign form of estrogen and yes I have heard of the progesterone issue lately on the TV as well.
I wanted to tell you about the DHEA which was prescribed by a holistic Dr. for me and it works wonders. I then only use the eostrogen pessary twice a week. Reason I am saying this is my daughter has severe rheumatic condition but not on this treatment. Her hormones had gone bolistic for some time and she was using some Lisa Curry Kenny, natural rememedy which was o.k. but not really good enough. I asked my rheumy if he would prescribe her first dose of DHEA 5 % which I send scripts to Aust. Custom Pharmecuticals in the Eastern States. They post the jar back to me which last about 6 months or more. Extremely econmical by comparison. Thing is I cannot believe the difference in her after a week on the DHEA. It is unbelieveable. She is a different person. Her age is 39 extemely early for her to be experienceing this type of problem, I thought but put it down to the rheumatic condition which sends everything haywire.
Sorry to rave on but thought it might help someone. We have to have a script here I know you do not in the States – Just buy off the shelf at the pharmacy.
[user=588]mollys[/user] wrote:
Having just read up on it, this overgrowth of candida may sometimes need extensive long term treatment. Any suggestions? Also, which probiotics have others had success with (are we allowed to mention brand names since many of the bacteria may not survive the manufacturing process?).
Hi Molly,
Yes, overgrowth of candida in the gut is something many with rheumatoid disease must be vigilant about. In essence, many of the rheumatologic drugs used either suppress the immune system (by some estimates, 80% of which is in the gut) or longterm antibiotic use, can encourage candida overgrowth. In a healthy individual, the candida probably plays an important role in the flora (yeast) and fauna (bacteria) balance in the gut. However, when the balance is disrupted, candida can get the upper hand. As I understand it, their hydra-like roots attach to the gut lining, causing tiny perforations, often referred to as “leaky gut.” It's through these perforations that microscopic particles of partially digested food escape into the surrounding tissues and bloodstream. This sets up the scenario for food sensitivities, as the body sends in its cleanup taskforce and recognizes these food particles as foreign bodies.
Some of the signs of candida overgrowth can be things like yeast infections (oral or vaginal), nail fungus, itchy skin rashes, stomach bloating, excess gas – to name a few – but also joint pain that can mimic RA-like pain. One diflucan may tackle an overt infection quite well, but many AP docs also feel that pulsing in regular doses of a systemic, like Diflucan, is a good preventative. However, it's also important to take measures to heal the gut. You'll find many dietary and supplemental suggestions here on the board by doing a search. The most obvious dietary exclusions are sugar and simple carbs, which feed the yeast.
Probiotics are wonderful for keeping the yeastie-beasties at bay, taken well away from the antibiotic dose….at least two hours either side. However, once candida sets in, they can't cure a candida problem. Their use is mainly to replenish the good fauna in the gut that are lost through antibiotic use. There are some good ones out there…I've personally found PB8 (sold in vegetarian caps) to be very good and I take 8 a day all in one go, two or more hours after my morning mino. I've found them to be reasonably priced, purchased through Vitacost.com and usually stock up with about 5 or 6 bottles to save on shipping.
Hope this helps some….there's lots of info here on the site and in the old archives on this subject. If you need any help with this, just let us know.
All the best Molly and hope you find a good AP doc to help you through this rough patch.
Peace, Maz
Rosemary – just wanted to clarify a couple of things. The stats that are taken for HRT are for the HRT's that are manufactured by the big paharmaceutical companies. These stats do NOT include bio-identical hormone relacement therapies. If you read the label of the HRT's, you will see that the names of the ingredients are similar to – but not the same – as the natural hormone. For example, progesterone is the name of the natural hormone, progestin is generally what is included in manufactured HRT. It can be (and often is) very confusing for consumers unless they have studied up on this and are aware of the differences. 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)Hey Lynnie, I have a question you might be able to help with.
I think hormones definitely play a role in my RA. I could go the DHEA route, but it's very complicated and I'd rather consult a knowledgeable person. I have a feeling that a regular endocrinologist is going to be useless. Got any brilliant ideas on where one finds a practicioner who is knowledgeable in this area and would tend to use the bio identical stuff?
I did see a naturopath, but she was against the AP stuff, so I stopped seeing her.
Okay, thanks for any bright ideas you might have. I appreciate your knowledge in this area (and others).
klogan
Klogan – I'm not sure where you live. Here, in Australia, I'd try a general practitioner (do you call them PCP's in the US?) who was younger (so maybe more open), and/or had some knowledge of holistic medicine, perhaps incorporating some into their practice – and probably a woman! Another good way would be to find a compounding pharmacy (they make up medications as opposed to just selling pre-packaged ones. They would be who would make up bio-identical hormones to prescription). Then I'd ask them for physicians in your area who prescribe bio-identical hormones. Best of luck with your search. 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)Sadly, I am in NY.
But I found a Web site that has info on a compounding pharmacy and practitioners who proscribe bioidentical hormones:
http://www.womentowomen.com/I think I'll start with my Rhuemy, give him the benefit of the doubt, and go from there.
Thanks!
Lynnie
Thank you for that however I do not need anything else.
The DHEA was prescibed by a holistic Dr for my hot flushes which were horrific and the Vagifem was prescibed by a Gynacologist. I did hear about the progesterone on the tele recently but see no reason to use anything else unless I need it.
I have written down what you said though for my friend but her Dr. is unfortunately keeping her on the usual therapy even though they are claiming the alarming drop in breast cancer since women stopped taking it and also he is refusing to treat her fungal problem even though it is causing severe memory loss so there is nothing more I can do. I will remember not to go to him.
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