Anyone in full remission? How does AP doctor treat?

[orchid]

From reading a lot of the posts, just wondering if anyone is in full remission – no flares, no pain, no thoughts (pretty much) of having RA?

Of those who are in full remission, how many of you were in the “early stages” of the disease and how early did you catch it – how severe were your symptoms?

Also – did you test positive for RA or was your bloodwork normal (all tests came back negative)?

I'm just asking because I know it's better to catch it early, but is there a difference in response to AP between those with positive and those with negative bloodwork?

One last question (for now – LOL!) what does the AP doctor normally do when treating you, starting out? What I mean is, do they start with bloodwork, test for mycoplasma, then start you on pulsing (slowly increasing) along with diet restriction, supplements, etc and then retest after some time? Do they normally START you on minocin or something else – I read about cipro or something? And after some time do they switch you to different abx or do they just keep you on the one if it seems to be working?

Do the other abx work as well as minocin – in terms of fighting off inflammation but also the joint destruction that goes along with it? From what I've read on minocin – it's the only abx that does both.

Also – I'm assuming the pulsing is done to avoid building resistance to the drug as well as to avoid the side effects (digestive issues, etc). Anyone really go on the abx and feel no side affects at all. I know herxing is considered good – and more a result of the bacteria dying off, so I'm not talking about that.

Thanks!

[m.]

Hi Orchid, I'm not in remission, but I am catching the arthritis early.

The only bloodwork my MD ordered was a CBC. We went with mycoplasma/chlamydia/strep testing through TARCI (http://www.tarci.net).

I came up positive for Mycoplasma Hominis (antibodies) and mycoplasma positive (PCR—detects presence of mycoplasma even without antibodies).

While waiting for the TARCI results, and in anticipation of going on antibiotics, I went on an anti-candida diet, and took some herbal anti-fungals and lots of high quality/high count probiotics.

My MD was going to start me out on a higher dose of Doxy, but I requested starting low and pulsing. I'm doing just 50 mg MWF. It's only been 2 months, but I'm seeing windows of less pain.

My MD has not tested my thyroid or sex hormones or adrenals, but it seems to me it's really important to have optimal, balanced hormones while fighting this disease. I may have to go to a different MD to have that done.

A year ago, I gave up gluten due to testing high for gliadin antibodies. I wouldn't say I felt great right away, but I did notice that with time, I felt I had more energy, a more positive mood, and my cycles were more regular and lighter.

There really are many pieces to the puzzle.

Michelle

[orchid]

Hi M,

I just sent you a private message and then realized I asked you about pulsing and realized you mentioned that in your post (duh) – sorry about that!

Is there a reason your doc started you on doxy instead of minocin?

I, too, want to get my hormones/adrenals tested. Is there a panel for that as well – I'm assuming there is. I have thyroid issues so I'm well aware of those levels, I get tested almost monthly lately.

Are the gliadin antibodies similar to the celiac testing?

Thanks

[Jennhere]

I got it kind of early.  My symptoms began about three years before I got on A.P.  I think I have Palindromic R.A.

I felt better right away.

Then I had some pains return and a bout of herxing which was quite bad.  But it only lasted about 4-5 days.  I think I had it really easy in retrospect, but I was an emotional cripple throughout. That's just the truth.

I think the pains came and went for about a year…. but… you have to realize that each time them come back on, they were less intense, less joints involved and lasted less time.  The fact that they would come back freaked me out and made me question A.P.  It took about a year for me to be convinced that A. P. was winning.

It's two years in November.  I feel great.  I have my life back.  I just had a “flare” in my finger (big deal, right?!) for about three days.  ONE FINGER. 

This past weekend we made tie-dye t-shirts.  I pulled twisted and manipulated rubber bands for an hour with 5 kids.  NO PROBLEM.  :dude:

Jenn

[bonnielou]

Like Jenn, I also got it early. My symptoms began in earnest in February 07. In August 07 I almost couldn't walk down the aisle at my daugher's wedding, my knees were so swollen, stiff and inflamed. I was on AP by October of that year. I started plaquenil at the same time, as my doctor is not an AP doc, and while she agreed to prescribe the minocycline, she would do so only if I started both. I also responded very quickly.

I did have positive blood work (RH factor, and high readings on sjogren's markers, SSA and SSB). I did not test positive for the mycoplasma. At this point my rheumie considers me in clinical remission — she has not redone blood work, but clinical examinations show all swelling and inflammation gone. (She had wanted to drain my knees at one point, but I held out and they are fine now.) I am still a little stiff in the mornings, some weakness in my right hand, and some fatigue. But I have more energy than most healthy people I think. I live a normal life — except for the time I still spend in medical offices (accupuncture, prolotherapy, etc.). And the time I spend working on preparing and eating healthy meals, exercising, and taking medications and supplements. I don't really forget I have RA though. I am conscious of it all the time. I don't want to forget. I want to appreciate everything I can do now that I could not do a year ago.

I also did hormone testing and food allergy testing — and take DHEA and bioidentical hormones. All in all the package is working. I am very grateful to this board, even though I am not on here often — I need to send them a donation.

enjoy.

Bonnie Lou

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!

[m.]

[user=515]orchid[/user] wrote:

Hi M,

I just sent you a private message and then realized I asked you about pulsing and realized you mentioned that in your post (duh) – sorry about that!

Is there a reason your doc started you on doxy instead of minocin?

I, too, want to get my hormones/adrenals tested. Is there a panel for that as well – I'm assuming there is. I have thyroid issues so I'm well aware of those levels, I get tested almost monthly lately.

Are the gliadin antibodies similar to the celiac testing?

Thanks

I requested the Doxy. I've done so much reading, and I'm afraid I haven't kept very good notes. But *somewhere* I read that starting out with Minocin for M. hominis might not be the best choice. That is, start out with Doxy, see how you do, and save the Minocin for down the road, if necessary. Again, I apologize I don't have a reference to share with you.

Yes, if we're going to fight an infection, our thyroids had better be up to the task.

I haven't had adrenal testing this year, but last year my scores were poor, and also showed gluten intolerance. This was the ASI panel from Diagnos-Techs. I gave up gluten in July 07. I thought it would be awful, but it has turned out to be a whole lot easier than I had anticipated.

Last year, I also had a full GI test done, the GI-2 from Diagnos-Techs, and it showed a fungal infection and low good bacteria. It also confirmed the gluten intolerance.

It's my understanding that a formal diagnosis of Celiac involves a biopsy, and there was no way I was going to do that. I just didn't see the point. Seeing the elevated antibodies to gliadin and feeling poorly was enough motivation to give up gluten. (I'll admit reading the book “Dangerous Grains” helped convince me too).

I have a kit at home to test female hormomes. The FHP from Diagnos-Techs, but I just haven't gotten around to taking it. Part of it is not wanting to part with the money. But, I think it's something that would be wise to do sometime soon.

My MD is not a big fan of saliva testing. I am, so I have to order the tests through another practitioner. I'm lucky my MD was willing to order the TARCI test, and write the 'script. I'll be even luckier if he will order up follow-up testing down the line from TARCI (I want to see those antibodies clear), and continues to prescribe the antibiotics. The medical support just seems so precarious to me, y'know?

I think I had a relatively mild Herx in July after starting the Doxy. There were some days where the pain in my elbows was so bad I had difficulty lifting water pitchers at work (I wait tables). It's better now.

I've been biking again to work when I can, and I think I feel better when I do. (Again, I'm a lousy note taker!).

I just had a CBC with diff/plt. No RF factor, anti-ccp, ANA, sed rate, c protein. I don't know why. My MD might be trying to conserve my money since I'm paying out of pocket. Or, he may not be familiar with arthritis and tracking bloodwork.

For probiotics, I've been happy with the Rejuvi-Flora System by Interplexus. I hope to do another GI test soon to see if it is keeping fungus at bay and keeping my levels of good bacteria up. I use Natren Megadophilis as a vaginal probiotic/ suppository. 1-2x a week.

I used to be a vegetarian, but since giving up gluten and cutting back on dairy, I've added back in a little bit of meat.

I used to have a glass of red wine several nights a week, but cut that out for fear it would contribute to yeast overgrowth. Oh, I miss it! Maybe once a week?

HTH,

Michelle

[orchid]

Thanks to you all for your replies!

We should all start a chicagoland AP meet! I've seen several posts from Chicago and I'm in Chicago, too – well, the burbs!

M – Thanks for telling me which probiotics you use and which tests, etc you've had done. I'll have to look into getting a hormone panel done. I agree about the gluten thing. No sense testing if you notice a difference just adjusting your diet.

Bonnielou – I'll have to PM you about the prolotherapy. Glad you're feeling better!

Jennhere – I can totally relate to the “emotional cripple” thing! Glad you've got your life back.

[Michele]

Wow, I'm learning so much from you “newbies!” Thanks for sharing!

Hi Orchid and Michelle,

I know I have mycoplasma hominus, pneumonia, and 3 positive bands of lyme. I did react really strongly to the minocycline and plaquenil and wondered about another antibiotic. I know another RBF patient with hominus and also had lots of trouble with mino. When I had so much trouble with mino I kept asking my AP doc. about doxy…but he really wanted me to desensitize to mino.

Maz, your comment in another thread about plaquenil being used as a cyst buster really struck me. It sure appears that if I saw an offical LLMD, I'd be a lyme patient…the combo of plaquenil WITH mino may have been producing too much herx for me. Once I dropped plaquenil (which was not easy) I started tolerating mino much better.

I've been at this for 11 months and get part days of pain free and then increasing “niggles” to days with pain in at least three symetrical places. Usually knees, wrists, hands. My wrists and hands freak me out because I'm a musician. However, they hurt…but I can now MOVE and use them fluidly and with strength. Last Nov. I couldn't hold a fork and for months had my husband cut my food. So LOTS of improvement. Just ready for more…

For me, Benicar is helping modulate inflammation / mino enough to get it to work. For once I won a 50/50 gamble. Whew. It does make me photosensitive but I'm not living in a cave. Now I wonder about the plaquenil part of this puzzle. Oh, the things we do to get out of this predicament.

Michele

[Lynne G.SD]

Hi orchid;
      I own a greenhouse with 16000 orchids so I just love your avitar.I have systemic scleroderma and am in total remission.The only thing that you can see if you look closely is tight skin around my fingernails.I had to make drastic diet changes and use a rotation of 2 to 3 antibiotics.It took a while but I am fine now.When I get super tired the SD tries to break through so I stay on a low dose still in rotation.  Lynne

[orchid]

Hi Lynne –

I'm so glad you're doing better. This board gives people so much more hope than the others I've been on, where they are all talking about side effects from the drugs etc :sick: There is a lot of scary stuff out there on the internet, so I'd rather come here where there's still hope and I hear stories of real people getting better 🙂 My doctor told me she wants to have the healthiest looking waiting room anywhere, no wheelchairs or canes! — so I'm pretty confidant she'll work with me if I choose AP for whatever it is I have.

Thank you – I love orchids, too, obviously! Wow 16,000 😯 – how do you care for them all? I have to say I don't have the best green thumb and I have 2 cats so we can't have any real plants indoors, unfortunately. 🙁 One of our kitties was in the ER last year because he ingested a lily I had sitting on the counter — little stinker (he's not supposed to jump on the counter :angry: ) – he is ok, now, but it really scared me! I'd rather have “live” cats than “live” plants. So, I get to enjoy “photos” of flowers instead of the real thing – LOL! :roll-laugh:

[Lynne G.SD]

Hi Orchid;
    Did you know that your avitar is a Cymbedium? I have some that are are in pots 3 feet in diameter that produce 4-5 foot spikes with 20 flowers each.Having so many plants is the reason I am totally exausted,not to mention 16 cats ,one robin we saved from the cats and one poor bedragled husband.All these plants have to be repotted ebery year and one can't use dirt.They grow in coconut bbark…..talk about dermabrasion!!!! heheheYou can peek into the greenhouse if you go to http://www.exoticorchidsplus.ca   The big plant with small yellow flowers is called “bruiser” and in a prise winning oncidium sphacelatum.It is about 12 feet high by 15 wide with thousands of flowers.Judges at the show just freek out when they see it coming because if it is going to win a ribbon some poor soul has to count each flower and unopened bud

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