Kickas.org Forums Treatments, Drugs and Alternatives NSD and diet-related; Antibiotics and diet

It’s been a while since I posted and I have my reasons. Mainly every time I feel I am winning I have a setback (generally immediately after I have posted!)

I started NSD 11 months ago (NSD and no dairy 10 months ago). Initially I had great success. Within 3 days inflammation I didn’t even realise I had disappeared. However, my SI inflammation and Achilles tendon were much more difficult to shift.
About 6 weeks ago all I could eat was oils, spinach, olives, eggs, coconut, meat and fish. I was still struggling with the SI and Achilles inflammation. It meant I couldn’t jog and for about 3 weeks I couldn’t sit down...that was very annoying.

It was at that point that I needed to do something radical. So I began a course of antibiotics. I now take 100mg twice per day of doxycycline. I contacted a few people on this site with antibiotic experience to ensure my dosage was correct. I am not sure if they want me to say who they are so at this stage I will withhold their names.

I noticed a difference within about 4 days, not huge but enough to give me a boost. After about 2 weeks I started jogging. I had mixed results as my SI would inflame.

About 5 days ago I played football (soccer) on Thursday, surfed and jogged on Friday as well as cycling every day for a week. The result: minimal swelling.

Today I have a small amount of swelling in my Achilles, I also feel as if I something is pinching around my SI joint.

My diet has changed in a small way. I am still NSD/no dairy/no sugar but I have added nuts. I take daily kefir, I eat no fruit and eat lots of flaxmeal.

Conclusion
After 6 weeks I am doing a lot better. Admittedly I have a moderate case of AS but 2 years ago I was super active, in the last year I have barely jogged. Today I can sit, jog and play football at about 75% of two years ago with minimal swelling after the activity.

Antibiotics + NSD/no dairy/ no sugar = improvement (gradual but definitely progressing).

I am not perfect but I am moving in the right direction. It may be a false dawn. I have been here before only to fall flat on my face. However, today I am progressing. If I have more than 1 or 2 beers I can feel it. Fruit may aggravate me. But these are small inconveniences.

Future Directions
1. Stronger antibiotics if doxy stops working (say after 6 months)
2. 6 months doxy and maybe try and reduce to a pulse MWF if the doxy continues to bring me success.
3. Continue to experiment on the diet.

I just thought I would put it out there if anyone wants to try it. I will post about once a month. Hopefully people can learn from my mistakes.

Hey Keith

100mg twice a day every day seems like quite a high dose to me but glad to hear it's working. Perhaps a risk of becoming resistant?

Jon had sucess using the roadback.org protocol - 100mg doxy once a day only Mon Wed Fri.

All the best

Hi Keith,

One thing to note about oral antibiotics is that in most cases they are designed to be taken to treat a remote infection, so they need to be well absorbed from the gut into the blood stream so they can travel to the site of some distant wound infection for instance. Just how much antibiotic is left by the time we get to the ileum or the large intestine for instance?
When I was taking Tetracycline for a while I cultured my own faeces. I was surprised to see that I still had a heavy growth of E. coli (a Gram-negative bacteria) that in this case tested Sensitive to Tetracycline. Why was it unaffected by the Tetracycline? - perhaps there was not enough antibiotic left?

Few drugs are designed to treat diarrhoea, indeed antibiotics are not recommended for Salmonella, Shigella or Campylobacter, unless the patient's life is threatened.

There are two antibiotics which are worth considering if one wants to treat Gram-negative bacteria in the gut (Klebsiella are Gram negative). Both are poorly absorbed from the gut and hence will persist and be expressed in the faeces. They are Neomycin (which is an aminoglicoside) and Rifaximin (which is actually prescribed to treat Traveler's diarrhoea caused by E.coli). Perhaps it's just as well Neomycin is not well absorbed because it is very nephrotoxic.

Rifaximin may be efficaceus in relieving chronic fuctional symptoms of bloating that are common in IBS. It has also been used to treat Rosacea, which some people think is caused by small intestinal bacterial overgrowth. Interestingly many Rosacea patients also get symptomatic relief by adopting a reduced carbohydrate diet - since such a diet is thought to restrict the amount of available material necessary for bacterial fermentation thereby reducing the offending bacterial populations (sound familiar!!)

Getting a doctor to prescribe Rifaximin for a SpA might be the hard part!

Lastly, my hunch is that the SpA's might be caused by an intolerance to any Gram Negative bacteria (=LPS), and not just an intolerance to Klebsiella - so perhaps Rifaximin in that case would be well worth trying.
Cheers David

Thanks for the advice guys.

How are you doing David? Have you tried Rifaximin?

I am hoping to reduce the dose of doxy. I will do this as soon as I am symptom free (if all goes to plan).

I will keep everyone posted. Doxy is such an easy antibiotic to take (compared to others) that I hope it works for myself and of course others.

Cheers

Keith

Hi Keith

When I took Minocycline I was prescribed 50mg (1 tablet) twice daily immediately after meals. Roadback people I think recommended 100mg Monday Wednesday and Friday and I think suggested taking antibiotics apart from meals.

No I haven't taken Rifaximin.

You've inspired me to try Minocycline again.

Good luck

Cheerd David

I am definitely doing better.

The only starch I eat is in macadamia/pine nuts. I agree with you in your posts in the main section: antibiotics and NSD work together.

If it works I am very low starch-paleo diet for life.

100mg doxy (50mg x 2) 15-30 minutes before food.

What happens in the future who knows?

Cheers I will keep you posted.

One question, why do you choose minocycline?

Keith

Hi Keith,

Thanks for the info.

It wasn't so much me choosing Minocycline as my GP choosing it.

After reading some of John's posts I asked my GP for Ciprofloxacin, but in Australia Cipro is reserved for serious infections (so as not to promote bacterial resistance) and my doctor chose Minocycline instead. This is because Minocyline in Australia is recognised as a treatment for chronic acne as well as an adjunct to Rheumatoid Arthritis therapy (even though I don't have RA).

The medical professon now views Minocycline as a Disease Modifying Anti-Rheumatic Drug (DMARD) through it's action as a matrix metalloproteinase inhibitor. I think that in the case of RA they discount it's antibiotic capability because the current thinking, rightly or wrongly, is that AS is not caused by an infection (although I feel as time goes by nearly all auti-immune or auto-inflammatroy diseases will be demonstrated to have an infectious aetiolgy).

One question Keith, can you tell a difference in how you feel if you take only half your current dose?

All the best
David

I haven't been brave enough to half the dose. I am making such good progress I don't want to risk any setbacks.

If the pinch in my side goes away I will start to reduce the dose.

I will keep you posted, but reducing the dose is phase 2.

If doxy stops/doesn't work I am thinking of cipro. A lot more radical but I after all the hard work I have put in over the last 11 months radical is the only way to go!

Cheers

Keith

I am also taking doxycycline right now. I took minocycline for a long time but the last 2 times I used it, it wasn't effective so I started the doxy a month ago. So far it's not very effective. I am also using the road back dosage of 100 mg M, W and F. I believe the first 6 months of using minocycline made a huge difference so I'm trying to be patient with the doxy.

I think the reason I didn't respond to the NSD alone was that I have a very leak gut from years of ibuprofen and some klebs have escaped my GI tract and are somewhere else in my body. My theory is that people with intact GI tracts respond to NSD alot better than someone with long standing disease.

Good luck,
Annette

Keep me posted Annette.

I am doing well on a high dose, not perfect but a lot better than I was.

I will keep posting.

Cheers

keith