Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group LSD + Enbrel or AP??

Hello,

I have been recently diagnosed with AS and am new to this forum. I'm hoping I can get some guidance from all of you more experienced and knowledgeable people about what type of treatment I should proceed with.

First a little background.

I am a 53 year old female and was diagnosed in September with Ankylosing Spondylitis. I believe I have had it since 2000, and have suffered on and off with pain in joints all over my body.

In 2006 I had very bad pain in my neck as well as feet, shoulders, back, hips, knees and jaw (TMJ), and severe fatigue. Two things happened in 2007 which may have put me into remission. I went to see a Lymes Literate doctor who put me on three courses of amoxicillin, 3 weeks each. He also did blood work and found that I was HLA-B27 positive. He explained a little bit about AS, but I didn’t follow up with a rheumatologist at that time. I also started taking a nutritional supplement that has many great vitamins, nutrients, amino acids, as well as herbs. Within 9 months of beginning to take that supplement I was about 90% pain free and remained that way, for the most part, until earlier this year. Late last year, because of my desire to avoid cancer (both my parents died of cancer) I began what I thought would be a better approach to my diet and began to eat less meat and a lot more whole grain and veggie pasta with vegetables. In Feb. I began again to have pain in my back, hips, shoulders and foot, fatigue, and I developed trigger finger in both hands. My left thumb got so bad that I couldn’t move it at all and had surgery done in August. While I was at my orthopedic doctor I mentioned that I was having a lot of pain in my lower back and hips, and he did a pelvic x-ray and found sacroiliitis. Then I went to a rheumy, had an mri, and received the diagnosis. She wants to put me on Enbril, but with my family history of cancer, I am very reluctant to go on medications that might increase my risk of cancer.

I began a very low starch diet in August after my visit to the ortho doctor. I say very low starch because the one starch I won't give up is my Fiber supplement which I really need to keep me from being very constipated. I also developed a UTI in July and my primary doc. put me on cipro for 5 days and amox. for 7 days. After that I was quite pain free for a good while (until just recently).

After reading about how some feel antibiotic protocols may be adequate along with LSD/NSD to treat AS, and with my personal experience of very good response to antibiotics, I am wondering if you all think that would be a wise approach for me to take rather than starting on Enbril?

At this point I am not in such terrible shape. I have pretty good mobility, low inflammation, but some pain in my SI joints, lower back, neck, and fairly loud ringing in my ears. The trigger finger is gone in both hands.

I would love to be able to avoid taking a TNF blocker, but I also don't want to wind up severely disabled.

Any advise you can give me would be so much appreciated.

Thank you,

Ruth.

Hi and welcome to this message board.

I'm sure other folk will come in with much more detailed answers, but from my reading I am pretty sure that the increased risk of incidence of solid cancers is minimal- its the blood borne cancers that are increased risks with anti-tnfs, though even then its not really that much higher than the normal population. You might want to do some research yourself (including asking your doctor for the numbers) specifically looking at what types of cancer are increased risk, and what populations (age, gender, diagnosis or reason for taking antitnfs) are at increased risk. You may just find that you aren't in a particular risk group. Its definitely something to be wary of if you have a family history of cancer though.

The other thing I'd say is that a number of women do seem to have major flare ups of disease activity around menopause, even when they have had very little problem with AS right up to then. I'm one of those who went from easily walking 15 miles at a time one year (age 49) to barely being able to get to my gate with crutches the next (age 50). I'd have just about given anything to get onto hard-hitting treatments like anti-tnfs - though unlike you I don't have a family history of cancer.

It sounds like you had a good response to an AP protocol. My son has been in remission for nearly three years after an AP protocol by a Lyme doctor. My brother has been on Embrel for about 10 years and has also been doing very well with the addition of antibiotics.

Hello, Ruth:



I promote the use of antibiotics along with diet, and prefer this approach to Enbrel, but not totally against this type of drug and do not believe it would increase risk of cancer very much if at all.

However, since You have already responded well to antibiotics and are well affiliated with diet, I encourage You to pursue these therapies over others especially because they actually address the root cause of AS (IMHO).

The Road Back Foundation can provide local physician references willing to prescribe antibiotics to help treat rheumatic disease, and You are very welcome to use my AP for AS (Antibiotic Protocol2) found in my signature (dropbox "Important AS Resources.").

I caution being very strict about diet while taking bactericidal drugs like Cipro (one of the best for killing our nemesis germ). When taking the bacteriostatic drugs like tetracycline (or minocycline as it may be), the diet can be relaxed slightly.

You will, I am certain, still find health improvements over 2 years in the future, but very rapid relief almost immediately, based upon what we know. Find good supplements, especially minerals (Mg, Cu, Ca, etc) and vitD along with Bcomplex and don't forget to take the EFAs throughout the day (EVOliveOil, and if experiencing pain, GLA from borage seed oil--a considerable amount--upon retiring).

HEALTH,
John

Thank you so much for your responses.

I have already contacted the Road Back and have been in touch with a doctor who is about an hour away who may be willing to treat with AP. I am also going to see my primary doctor on Thursday and will ask her if she would do it. I also have an appointment scheduled with a new rheumy in December for a second opinion. I'm thinking that it would be ideal if I can get a good rheumy to treat with AP. Is there realistically any chance of that happening?

I have printed out your AP and will bring it with me to my doctor.

Is it safe to assume that if the symptoms go away (or are practically gone) that the disease is not continuing to advance? That is really my main concern. At this pain level I am not so much concerned with pain management. I can put up with it. I really just worry about how much skeletal damage is occurring.

Also, I am currently taking a very good supplement, but would love to know what you consider so be good supplements for the things you mentioned, including amounts and brands that you recommend (hopefully no one will consider that advertising). Also any recommendation for a good probiotic?? I was using Kefir, but I have gone on a low carb diet in order to loose some weight, and the Kefir is loaded with carbs. Is there such a thing as a good low carb probiotic that really works?


Thank you again.

Ruth

Hello Ruth,

Glad you found Kickas and hope you are feeling better soon.

You will need to learn all your options and make a personal choice best for you how to approach your treatment. but I would learn first, discuss options with rheumy and become comfortable in making an informed choice.

I formerly took azulfadine and did well with that medication. After 7 years... I had to find new plan and went with No Starch diet after learning about it and reading about nutrition, diet, supplementing etc.

Personally I am leery of long term antibiotic use.

Best to you,

Tim

It's always good to have options.

Here are some other proven methods of decreasing the amount of klebs.

http://www.iasj.net/iasj?func=fulltext&aId=3828

Inulin powder and ultimate flora(bifido probiotic) are easily found on amazon. I haven't looked for chicory root yet but i prefer the inulin powder so I can control and gauge my reaction to the amount taken.

If you look at Dragon Slayer's signature links, he discusses candida albicans which might be an issue based on our condition and your history of abx? You can take these basic questionnaires to give yourself an idea.
https://www.kickas.org/ubbthreads/ubbthreads.php?ubb=showflat&Number=505467#Post505467
Candida is said to cause "leaky gut." I don't know if it's due to candida but my organic acids urine test determined that I was high in hippurate which indicates gut permeability.

I was VERY weary of biologics as well. My Mom has had hodgekin's lymphoma twice. My grandparents ALL passed due to cancer but I couldn't take the pain or risk fusion due to inflammation and hopped on enbrel for 3 years anyways. For myself, it 100% took away my pain but I developed iritis shortly after starting. My opinion is that it simply masks the pain/issue and tricked me into thinking I could eat whatever I wanted and stress myself out without consequence. It didn't fix my AS/iritis AT ALL as I got off for a couple months to test myself and was right back at square one. I only got off because I noticed enbrel was becoming less effective at about the 2 and a half year mark. I took my first shot of Humira(meant to help with iritis too) a couple weeks ago and I'm back to 90% pain free.

I went very low carb for only about one month and developed an intolerance to egg whites, nuts and dairy. That was devastating for me! Initially, I thought it was the lack of starches but now I wonder if it was just the lack of carbs in general. Here's a podcast from someone with a similar experience.
http://drbganimalpharm.blogspot.ca/
Their second podcast talks about inulin too.

Dr. BGanimalpharm, alongside Tim Steele's blogs have successfully scared me off most abx except in situations of absolute necessity.
http://vegetablepharm.blogspot.ca/

Sorry for the wack load of possibly overwhelming info but as Dotyisle said "You will need to learn all your options and make a personal choice best for you how to approach your treatment. but I would learn first, discuss options with rheumy and become comfortable in making an informed choice."
Watch out for a very subtle rolling of the eyes when talking about probiotics or antibiotics etc. to your rheumy, though.

Good luck to you, Ruth

Dragon Slayer, is there any way you can start a new forum for test results to be posted and viewed? It might be helpful to be able see the similarities/differences between any of us willing or able to get and post them. Stool/urine/blood/pcr assay/synovial fluid and tissue tests etc. I would offer my stool and urine tests to start.

Hi CoatTails,

Thank you for all the information. That's just what I need: plenty of it so I can make an informed decision.

That is so funny that you warn me about the rolling eyes. That is exactly what I experienced when I started telling the first rheumy about my diet issues associated with this flare earlier this year. Personally I find that so off-putting and unprofessional. I have a son who is currently in med school, and I've told him he should never treat a patient like that. Thankfully they teach human kindness at his med school, and he is by nature a very kind person, so I'm confident he will be a great doctor.

There is a very good movie called "First do no harm" with Meryl Streep about how a family found out about the Ketogenic diet to treat their son's epilepsy. When the mother mentioned it to her son's doctor, she gave that exact eye roll. I was amazed how much she looked like my rheumy.

Anyway, thanks again.

Ruth

Hi Ruth,
Interesting that you saw an LLMD first. Did he diagnose you with lyme? If so amoxicillin alone will not eradicate lyme. I have neverheard of an LLMD using just that one antibiotic.

Enbrel could be very risky for someone with a history of lyme as it will turn off your immune system allowing the lyme bacteria to flourish. I am in a similar situation. I was diagnosed with lyme 3 yrs ago, but diagnosed by rheumy with possible AS. Rheumy wanted me to try enbrel, LLMD sid no way...

I think at this point the the AP my be the way to go as you may still be dealing with lyme. The ringing in your ears as well as the all over joint pain are seen in lyme. Unfortunately you may be dealing with both AS and lyme which stinks I know or lyme is the major player right now and you happen to be HLA+ The Road Back is a wonderful resource. I'm not sure which state you are in so I cant suggest anyone.

Hi lulu12,

I do live in a deer tick infested area and have had at least one deer tick bite that I know of. We are always very careful to check anyone who has gone in the woods or bushy stuff and remove ticks right away. I have been tested for Lymes several times and they have always come back negative. I suppose it is possible that I have it, but I've never really felt strongly that I do. But I suppose that could be one more reason to be wary of Enbrel.

It is interesting that I have numbness in my arms, especially when I sleep. I almost always wake up with pins an needles in my arms and a numb feeling. But during the day I don't usually have that. Back when my AS was feeling much worse, I would get numbness in my arms when I went for my walk, but I don't get that now. When I described this to my rheumy as well as my ortho doc. they suggested I see a neurologist. But I've been to so many doctors recently that I really don't feel like it.

Any thoughts out there as to whether this is really important to do at this point?

Ruth