did AP help with Psoriatic Arthritis.

[nelfam]

Hello,

I am new to this website. I was diagnosed with Psoriatic Arthritis about a year ago. I was on prednisone, and weaned off of it. I currently take Methotraxate (6 pills), and a NSAID. I started with pain in my right foot, then in my left hand and that is when I started seeing the dr. Now, I have pain in both feet and it hurts terribly to walk.

I brought the book with me and print outs from this site with me today when I visited my rheumotologist. He said he has one patient with Rheumatoid Arthritis whom he is treating with AP, but there was no way it would work for me because I have Psoriatic Arthritis. I’m just wondering if it did help anyone with Psoriatic Arthritis. When I read the book, I was under the impression that AP could help with any arthritis other than osteoarthritis.

Thanks so much.

[DragonSlayer]

Hello, nelfam:

There are several underlying causes for PsA, but, secondarily, it is due to molecular mimicry with the germ Klebsiella pneumoniae; antibiotics *CAN* help, but nothing works so well as DIET. In PsA in particular there can be a serious condition of celiac and if this alone is properly addressed the PsA symptoms can be reduced considerably. The primary germ has not yet been identified, but it has nearly identical characteristics with Klebsiella pneumoniae
, so that NSD (No Starch Diet) will help considerably, but if celiac this can be modified to exclude gliadin.

These polyarthritides are so often closely linked with LGS (Leaky Gut Syndrome), and also dysbiosis (displacement of gut flora, especially from colon to small intestines), but nearly all are due either directly or indirectly to bacteria, so any reduction is good.

Psoriasis is so often treated with long-term tetracycline, and what is the mechanism of activity? I mean “THEY” just don’t have a clue! Occam’s razor: Almost certainly bacteria and NOT any very mild anti-inflammatory properties of the antibiotics.

Good Luck to You,
John

[Pixelfixer]

NELFAM,
There is definitely hope. My daughter was diagnosed with PsA in November of 2009. She was 17 and in her senior year of High School and it hit her so hard that she found it very difficult to leave her bed. What started as pain in her right pinky toe, had moved to her right knee (which swelled to the size of a large cantaloupe) and throughout much of body including her collar bone, back, fingers, neck, hips, etc. Many nights either her mom or I would have to stay with her and talk her to sleep to keep her mind off the pain until she was so tired she couldn’t stay awake. It was a nightmare.

I thank God for leading us to this website and discovering AP. Cheryl, Maz and many others helped me fast-track my education on this subject to the point I felt comfortable that this was the right choice for my daughter. By mid Feb ’10, we had connected with Dr S. in IA and a doctor in our home town that agreed to work with us on this. She started with 10 consecutive daily IV infusions of Clindamycin @ 1200mg each. followed by 100mg twice per day, M-W-F, of minocycline alternating with a good pro-biotic on Tu-Th-Sat to rebuild the good bacteria wiped out by the antibiotics. Long story longer, she seemed to be in remission by the end of May! We were so THRILLED! She continued to remain in apparent remission through the summer and through her first semester at college. She felt so good, that (we found out months later in hind sight) she quit taking her maintenance dose of mino’ as soon as she started college in August, and also through all caution to the wind with her diet. She consumed little else than candy, soda and pizza. I think the only vegetable related item that passed her lips was the tomato sauce on the pizza. Nor did she excercise other than walking back and forth across campus, which actually did add up I guess. Yet still, she appeared to remain in remission.

As of the middle of March, this year, she has started to show some minor signs of arthritis returning. Enough to change her mind about taking the meds again. So, she is now trying to restrict her sugars and other carbs, starting to do some excercise and again taking her mino’, although still not as regular as she should. I am convinced that she would likely not have regressed if she had remained on her maintenance dose of mino’ longer and also refrained from so much sugar and other carbs.

AP worked very well for my daughter, but we got on it quickly and aggressively. I don’t claim to know enough to tell you it could work as well for you, but I don’t know why not either. And it surely has a less threatening side-effects than the alternatives. If you’ve only had PsA for around a year, then I would think you would find success with AP earlier than those that have had it much longer. My reading tells me the theory is that the longer you have arthritis, the more bacteria there is to flush out and so it takes much longer. Feel free to PM me if you like. And trust in the Angels (I mean moderators) on this site to help you. They have learned a lot and are a wealth of helpful information!

I wish you all the best in your journey on the road back to health!

Steve

[nelfam]

John and Steve,

Thanks so much for your replies. I was definitely feeling discouraged and upset after my appt. yesterday. But, it did get me to call my PCP and I have an appt. with her in 2 weeks, and I called another rheumatologist in a nearby town who does treat PsA with AP (Yay!) They have to review my paperwork, and then make an appointment. Only negative is that they can’t see me for 6 months. I’m wondering if they are so popular b/c they do the AP, it’s interesting.

John- I did think Celiac as well. I had asked previously to get tested when my Dad had suggested it (he is a retired dr.). I asked again yesterday (and had my printouts on that as well), but he said insurance wouldn’t cover it and I should see a G.I. dr. to get that test. I have had stomach problems for about 15 years, and noticed other symptoms of mine matched the symptoms on the website (tooth enamel that is wearing off, and reduced padding in my feet – that is mostly where my feet hurt). I’m going to discuss that with my PCP as well.

Steve- it gives me hope that the treatment worked so well for your daughter. I didn’t understand yesterday why the dr. thought it couldn’t help this specific disease. But, I am so glad to hear that it helped her, and I read another’s story on the main page with PsA. I definitely think it’s worth a shot. I was all set to start on biologics, but got an infection that put that off, which I now look at as a sign! During that time, my husband and I were reading a patient website on the biologic and were horrified by some of the experiences people had. I hope your daughter has continued success:)

Thanks again,
Amy

[Parisa]

Amy,

You don’t have to have a doctor to test for celiac. You can do stool testing and gene testing through enterolab. http://www.enterolab.com. Also, removing gluten from your diet and getting symptom relief is much better than waiting for a doctor’s approval ogten faulty intestinal biopsy process.

[NineNineSeven]

I will just echo a couple of comments here. I’ve been on AP for about 7 months and definitely feel better. As John mentioned, diet seems to play a huge role in feeling better. While my rheumy has been very supportive and knowledgeable about AP, he does not seem to have much regard for the anti-starch benefit. But he sees no harm in it and I will continue it with or without his agreement.

An acquaintance of mine who is about my age also was diagnosed with PsA a couple of years ago and his doctors pretty much said “get ready to be disabled”. He did not start AP but did his own research and started the anti-starch diet and it has helped him immensely, but he still leans on NSAIDs quite a bit. I rarely take NSAIDs. My friend is going to start seeing my rheumy and get on AP as well.

Cheers
Michael

[nelfam]

To update my post, I finally did find a dr. who is treating me with AP. I have been on Minocyclin for about 6 months. I haven’t noticed a difference. I’m still taking Celebrex daily as it seems to be helping.

John, I did have a test for Celiac and was fine, but they also noticed a high level of the klebsiella. The dr. put me on Bactrain and my feet felt great. Then, I went off it, and 2 days later my feet hurt badly again. I told the dr., and we tested again, and this time I took it, I could straighten my elbow. Now I am trying it for the 3rd time, because when I don’t everything hurts a lot worse. Not sure if this is something I should stay on permanently, but I did just want to let you know that you were right when you told me before to get tested.

Also am being tested further for Lyme.

[PhilC]

Hi Amy,

Have you had any problems with cystitis or urinary tract infections?

I’m not sure that Bactrim is an antibiotic you would want to be on for a long period of time. I was on it for about 14 weeks back in 2008/2009, and I had a definite feeling that it was taking a toll on my body. On the other hand, I wasn’t taking a high-quality folate supplement back then, something that almost certainly would’ve helped.

A possible alternative to Bactrim is trimethoprim (Trimpex). That’s the drug that doctors really should be prescribing instead of Bactrim as it’s a lot safer due to the fact that it does not contain a sulfa drug. I have been taking trimethoprim since the end of September 2010 (along with doxycycline), with no side effects except for a little bit of fatigue. The first month I was on it I experienced a noticeable increase in fatigue because I was on a high dose (200 mg BID), but that went away as soon as I started taking 800 mcg of L-methylfolate (Metafolin) every day. Reducing the dose to 100 mg BID also helped a lot.

Phil

"Unthinking respect for authority is the greatest enemy of truth."
- Albert Einstein

[Parisa]

Nelfam,

It’s great you have found an antibiotic that is working for you. AP isn’t just minocycline. The AP approach is try and find the cause of the autoimmune condition and then treat it. Testing isn’t always great so for a good many minocycline covers the base for them.

I believe Dragonslayer already mentioned above the role that the gut plays in PSA. I think it plays an important role in all of the autoimmune conditions as a large portion of the immune system is in the gut. I know you are getting relief from the Celebrex so I hate to tell you to discontinue it but definitely try to keep it to a minimum and try to find other methods of pain relief as it is very hard on the gut. I see you were tested for celiac. What kind of testing? The gluten free diet should really be tried even if you don’t have a positive celiac test.

Good luck with the Lyme testing. Hopefully, that will give you more information also.

[nelfam]

Hi Phil,

I haven’t had any problems so far with it. I woke up this morning feeling a lot better. I had previously taken it twice a day, but my dr. wants me to lower it to one a day. I will ask him at the next appointment about Trimpex. My father had said that a lot of people develop allergies to the sulfa based antibiotics so it sounds like a good idea to switch over, thank you!

Hi Parisa,

He had me send the stool sample to Igenix, and that resulted in the high amount of klebsiella, but a normal celiac test. I did try no starch/no gluten for a few weeks and didn’t notice a difference, but I do think it’s time to try again for a longer period.

My dr. ordered tests for Babesia, Bartonella, and S. Chafeensis and I just spoke to his office and they said all the tests came back normal. Pretty much all of my tests, xrays, mri’s don’t show anything. I was diagnosed with Psoriatic Arthritis based on the exam. I do have swollen toes and small patches of Psoriasis.

Thanks so much for the responses.

[PhilC]

Hi Amy,
@nelfam wrote:

I haven’t had any problems so far with it. I woke up this morning feeling a lot better. I had previously taken it twice a day, but my dr. wants me to lower it to one a day. I will ask him at the next appointment about Trimpex. My father had said that a lot of people develop allergies to the sulfa based antibiotics so it sounds like a good idea to switch over, thank you!

That’s why I switched to trimethoprim– I had an apparent allergic reaction to sulfamethoxazole.

@nelfam wrote:

I did try no starch/no gluten for a few weeks and didn’t notice a difference, but I do think it’s time to try again for a longer period.

Before you do that, there are some other dietary changes you could try. You could eliminate dairy products and nightshade vegetables. For more details, read this message that I recently posted:

viewtopic.php?p=58076#p58076

Phil

"Unthinking respect for authority is the greatest enemy of truth."
- Albert Einstein

[lynnie_sydney]

I did try no starch/no gluten for a few weeks and didn’t notice a difference, but I do think it’s time to try again for a longer period.

I agree – a few weeks is probably not long enough because of the half life of antibodies staying in the body. Also, you need to make sure you are not getting “hidden” gluten – e.g. from instant coffee which uses wheat in the processing but does not declare it on the label as not an ingredient.

Also, celiac is something you are born with, intolerance is different and many people with chronic illness develop the latter, especially with Leaky Gut. There is alot of good info on the net re both these topics. Try Dr Leo Galland for a very detailed explanation of Leaky Gut

http://www.mdheal.org/leakygut.htm

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)

[vera]

My chiropractor informed me that it can take three years for the body to heal from the negative effects of wheat!

I’ve been starch/grain free now for about a year and am just starting to finally feel some better. I tested all my supplements with iodine (the dark kind) as John Dragon Slayer instructed, to find out which have starch and which do not. Even my organic ginger and cinnamon from the local co-op store had starch – but then most spices contain starch. You wouldn’t believe where it is hidden until you start testing for yourself. Just put a drop or two of the iodine on the item you’re testing and if it turns dark brown or black, it has starch. (BTW, don’t eat it with the iodine! but of course you knew that already.)

Avoiding grain/starches has definitely helped my PsA pain – when I do indulge, I suffer the next week! My hands feel like I have boxing gloves on the next day and I can hardly close them. My abdomen also swells immediately.

Lori

[flower]

Hi everyone!
I have psoriatic arthritis …Searching for a solution from AP.
on forum I’m reading the link between Psa and klebsiella pneumoniae

[Author]

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