Oral Connection — Me Too??

[Betty S]

Hi Folks, 

I've been avidly reading this board since I discovered it in mid July (by the grace of God, I think).  There really is a wealth of information and support.  I was interested in the oral connection topic.  Here's my story.  I was diagnosed seronegative RA in March 08.  I had some vague symptoms here and there probably starting in 2002.  The only other things going on with me physically during that time were menopause and an infected root canal tooth.  It was by no means a new root canal.  It might have been 25 yrs old and done by an Endodontist.   Nothing was noticed until I actually had pain in the fall of 2006, and I get dental checkups every 6 mos.  My dentist said the x-ray showed a shadow around the root that was abnormal and sent me off to the oral surgeon with the x-ray and an older whole head x-ray from March 03.  And guess what?  The abnomal shadow was alreay on the 2003 x-ray.  So the infection was festering and growing from at least then, but probably earlier.  When I finally had the tooth pulled in March of 2007,  the oral surgeon said it had a good size bubble of infection on it.

I am currently on methotrexate and plaquenil.  Have recently come off prednisone and many symptoms have returned.  On my  last visit to traditional  rheumy  on 8/5/08 he wanted to put me on Enbrel self injections.  I said what about giving me antibiotics instead.  He condescended to write a script for 100 mg Doxy once a day but did not think  it best for me because he said I have a very active disease and Minocycline and Doxy to mild.  He obviously only uses them as mild anti-inflammatories.

Question:  Is there anyone else out there on AP with a similar diagnosis of seronegative RA who can share the benefit of their experience?  I believe Dr. Brown mentioned in the book that seronegative is easier to treat than positive.  Also I filled the script with generic Doxy.  Will that be effective?

Thanks so much for your help.

Betty

 

[trish]

Hi Betty

I'm new to this board as well but I read it almost every day as I have RA dx in June of this year.  Sorry that you've had no replies to your question, and I don't know if my response will be much help, but I did feel to reply to you.  I do not have sero-negative though as my Rh factor was very high. 

I did quite a lot of reading of this site before i saw my rheumy for the positive diagnosis of RA and he wanted to start me on methotrexate straight away as well. However, I resisted that as everything I've read about mtx is not good and definitely not something i wanted to put into my body.  I've been on abx now since the end of June, and while it is still early days and i'm still in quite a bit of pain, I believe I have had some small improvements.  I am also on 5mg prednisone daily (down from 10mg) which I don't think is doing very much.  Most people on low doses don't seem to report much success.  It seems that it is only good when the dose is higher than 20mg daily.  I don't want to go there either as I don't like what I have read about prednisone.

My rheumy is also rather sceptical of AP, but he has agreed to let me try it for 6 months before he wants me to go on methotrexate.  At that point I will be in a bit of a quandary (and will be seeking advice from this board if that eventuates).  I hope to have some real improvements to report to him by then so he will let me continue with AP and maybe become a believer himself:blush:.

The antibiotic I am taking is Minomycin (which is a generic minocycline and is the only one available here – New Zealand).  I understand from the protocol on this site that minocycline is regarded as the best but some people do seem to do well on doxy (which you are on) as well. 

I'd like to hear if you manage to come off methotrexate (if indeed you want to after reading the opinions on this board) and how you continue to do on the doxy.

Best wishes
Trish

[Maz]

Trish, thanks so much for finding and bumping up Betty's post to the top of the pile! 😀

Betty, so sorry your post got missed…sometimes this happens, especially when the board gets busy and it's nothing personal. 😉 

I wasn't seronegative, either, for RA…quite the opposite, in fact. Had very high markers for RA and I'm sure if I had gone the standard rheumatological route, I'd be on heavy doses of immunosuppressives. It's taken 21 months, but I'm now at about 95% improved most days. Still have some herx days, but nothing like in the beginning where they seemed to outnumber the good days. It's been worth every second to be on AP, though, and I have no regrets whatsoever! I know I still have a ways to go and I may be on AP for life, but I'm okay with that, knowing that it's a safe, effective treatment…and not just a mild anti-inflammatory.

You're absolutely right that Dr Brown felt that his seronegative patients recovered well on AP and he also felt that the sooner treatment was commenced, the prognosis even better!

It's great you managed to get a script for doxy, but it may be a little harder for you to work out dosage adjustments if your rheumy isn't AP Literate….or supportive, if you start to experience a herxheimer flare. If you would like a listing of AP docs for your state, I'd be happy to send them to you in a private message. Just let me know.

Peace, Maz 

[lynnie_sydney]

Just to clear up a little confusion on minocycline. Minocycline is the name of the drug itself. Minomycin in Australia and NZ is the brand name. It is manufactured by Sigma. There are other generic versions of it available I believe. In the US/Canada, the preferred brand is Minocin. It is pelleted (which means slow release) and is considered better than a non-slow release version because it has a longer action in the body. Generic versions of slow release are available there and are sometimes (not always) considered not as good, mostly thought to be because of the fillers used in the capsule. In summary, you should be fine on Minomycin. I have used with great success for 5 years. 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)

[Todd WI]

Hi Betty,

I have psoriatic arthritis but that is just a name, I suspect the name seronegative RA would fit as well.  For what its worth, I started on generic doxy and did very well on it.

Todd

[Lizz]

Hi Betty, I just saw your post, thought I would share my experience, keep in mind everything is individual. I'm seronegative and have been on AP for 15 months, several months 200mg per day, and then changed to pulsing Feb. 08. I also take sulfa salazine and a tiny bit of pred. I need to get up early in the AM to get my boy to school, not getting up in the morning is not an option. I'm not sure if being seronegative makes any difference, because people's trigger's are different, some lyme, some a combination of infection, hormones, leaky gut, allergies ,stress..I could go on but I think you know what I'm talking about. It seems the source of you issues may be the root canal, but if I were you I'd look at some of the above triggers also, commonly called your total “pathogen load”. After I stared AP, my sed rate and anti-ccp went sky high- I then switched to pulsing and things are slowly reversing. But I watch what I eat, take probotics, digestive enzymes and ALWAYS avoid excessive stress if possible. I think, like you many of us have symptoms years before the official diagnosis. Look at what you are doing today, what you're eating, your environment, etc.The key for me is getting the inflammation under control so the AP can do it's job. This can be whatever your body can tolerate, herbs,  MSM, advil, celebrex, or a small amount of pred., people on this board have alot of helpful opinions on this. Try to find an AP doctor, doing it on your own is alot harder, but people here can help.I don't feel great every day, but overall the improvements are palpable. I remember when I couldn't wash my hair, drive the car or brush my teeth without considerable pain. I can do all of it now. I haven't had my bad knee shot with cortisone in seven months, before I could barely make it three, begging for help! I hope some of this helps. We all have alot to learn and share with each other. Betty, I wish you all the best!

________________________

Lizz RA 11/07, AP 5/07

[Betty S]

Thanks everyone for your kind responses.  Just thought I would add a little more history about my meds.  When I first came down with heavy-duty swelling, stiffness and pain in late Dec. 07 and Jan 08 I already had an integrative/alternative medicine doctor.  I went to him at that time and he put me on natural products to try to control the inflammation — no help, however.  Then we tried food allergies, different tests and food elimination — no change in my condition at all.  We both decided it was not the food thing with me.  Since I was getting worse,  and alternative doc did not have any other ideas, I went to a traditional rheumatologist in March 08.  He immediately put me on prednisone and plaquenil.  A month later he added methotrexate.  At the time I did not know about AP.  Did not find the website until mid-July.

When I found out about AP, I contacted my alternative med doc and told him about it.  He agreed to read the book “The New Arthritis Breakthrough.” He then mentioned his preference would be doxy over mino because in the course of his practice (before becoming an alternative med doc he was an emergency room physician for 17 years) he had seen people that “looked like leopards” who had been on mino.  While he was reading the book, he asked me to find out what direction the traditional rheumy was going to take.  I wanted to see the rheumy anyway because many symptoms were returning as I was coming off the prednisone.  The rheumy did give me script for Doxy for 3 months, but he is not supportive and I believe I won't be staying with him much longer.  I asked about coming off methotrexate and rheumy said – no – said it is a good medication.  I thereafter asked my alternative med doc and he also said to remain on it because he felt it was a good thing in keeping the “walls of inflammation down” so antibiotic could do its work.  So what is a person to do?  I am staying on it for the present along with plaquenil, but I honestly don't know how much either of them are doing for me as I am quite puffed up and hurting.  Maybe it is the herx?

Thank you Maz for the offer of sending me list of AP doctors.  Please send it to me just in case I need it.  Now that my alternative med doc is on board, I will probably continue with him.  I think it will be an experiment for him also, however, because he has never treated RA with AP before.

Betty

 

[Maz]

[user=673]Betty S[/user] wrote:

I thereafter asked my alternative med doc and he also said to remain on it because he felt it was a good thing in keeping the “walls of inflammation down” so antibiotic could do its work.  So what is a person to do?  I am staying on it for the present along with plaquenil, but I honestly don't know how much either of them are doing for me as I am quite puffed up and hurting.  Maybe it is the herx?

Thank you Maz for the offer of sending me list of AP doctors.  Please send it to me just in case I need it.  Now that my alternative med doc is on board, I will probably continue with him.  I think it will be an experiment for him also, however, because he has never treated RA with AP before.

Hi Betty,

Have sent you an AP doc list for Ohio. Actually, you have a very good AP doc right in Parma, a lady doc – Dr C.T! I 'think' I heard she might be retiring shortly, but if you're keen to stick with your current alternative doc for the time being, then he might be willing to consult with Dr C.T. on your behalf, to learn more about AP therapy. If you find he's really good, please let us know so we can add him to the AP doc list – if he's amenable to this, of course. 😉

Normally, when people are currently on other DMARDs (methotrexate, plaquenil, gold, biologics, etc), it's recommended that you don't stop them immediately when starting AP. Your doc is right…if you come off those other drugs too quickly, you could very well experience a rebound flare and think AP is not working for you. It's quite normal to experience a herxheimer reaction when beginning AP (worsening can last several months or more in some people), so you don't want a rebound flare on top of any herxing that may be going on. 😯 Over time, as you begin to notice improvements, you can always begin to slowly wean off the other drugs you're on with the help of your physician. Many people have and are doing this on the bulletin board, so you can always post later and ask how others have achieved this and ask more about their weaning off experiences.

Not everyone experiences skin hyperpigmentation on longterm minocycline. It's said that it can be averted by using low, pulsed dosing as well as taking daily Vit C. There is more infomation on this in the education section on the main http://www.roadback.org website. The reason minocycline is generally preferred is because of its increased tissue permeability and anti-inflammatory benefit, although doxy works for others, too. It's an option for you, anyway, if you find later that you aren't progressing as well on doxy.

Great going, Betty…sounds like you're off from the starting block on your road back now!

Peace, Maz

 

 

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