AS / SIBO – Looking for guidance on AP protocol, London

[spondy]

Hi there,

About to start an antibiotic protocol for AS, Undiff SpA, targeting in particular SIBO, leaky gut / gut repair, and Crohn type symptoms. My diet is currently an extreme version of the No Starch Diet (NSD). In AS, we target 1) Kleibsiella Pneumonia, and to a lesser degree, other gram negative bacteria, 2) SIBO, and 3) Gut healing. 2 and 3 are very tricky when on such an extreme NSD + extreme no sugars diet (for SIBO / Dysbiosis).

About to start cycling:
MinoCycline
Doxycycline + Metranidazole
Rifaximin
Cefalexin

This is a modified version of the AS AP Protocol from DragonSlayer:
https://www.dropbox.com/s/4rrat7wt9t8qonf/ASprotocol2.pdf
http://www.kickas.org/ubbthreads/ubbthreads.php?ubb=showflat&Number=518151&page=2

(I replaced the Cipro, as I don’t fancy permanent mitochondrial and neuropathic damage)

Looking for input on suitability, best way to cycle, alternatives, etc.

I am aware of non-abx alternatives, but they are not working for me, and I’m not looking to explore this further.

Many thanks!

[Spiffy1]

Hi! I just wanted to say welcome! I know someone will chime in that has had personal experience with AS and/or your drug combinations. Please remember we are just fellow patients so will not be able to give you specific recommendations. However, shared experiences are worth their weight in gold. And please keep us posted on your journey!

Flare fall of 2014...muscle aches, joint pains, fatigue, hair loss, rashes, etc.
RA Factor 71 in Jan 2015 down to 25 as of September 2017
DR4/DQ8 HLA...biotoxin illness
IGG food allergy to wheat, egg, and dairy...probably all grains
Vit. C&D, probiotics, milk thistle, turmeric, fish oil, methyl b 12, methyl folate, digestive enzymes, Candisol, Ubiquinol, berberine, chlorella, Moducare, LDN, monolaurin, Triphala, Patriot Greens, Paractin
MTHFR compound heterozygous
Igenex IGM positive Lyme, minoMWF

[Pinkmoth]

spondy,
I believe I am on a similar diet to you as I find that sugars and starches exascerbate my issues.

I’m interested in what some of your core foods are ? I have difficulty getting enough calories without starch and having such extreme dysbiosis issues that i don’t absorb fats well.

Autoimmune: ANA positive speckled. Probable MCTD with SD overlap. Hashimoto's. Possible Erlos Danlos. Mold Illness.
Infections: Bartonella, toxoplasmosis, mycoplasma, EBV
Meds: minocycline (Zydus generic) 100mg 1x daily,
Supps: digestive enzymes, Monolaurin, Betaine hydrochloric acid, iron, quercetin, biocidin

[Spiffy1]

Pinkmoth, I notice you have EBV. My numbers were through the roof. Like they quit counting so high. Like over 800. Except not for new infection. I always wondered what part EBV has played with me. So it is like I had extremely high titers for an old infection. Not sure why this would be. No one ever did anything about it. Not much you can do. The Monolaurin is good for that but I have taken a break from all supplements. I just got tired of balancing all of it.

Flare fall of 2014...muscle aches, joint pains, fatigue, hair loss, rashes, etc.
RA Factor 71 in Jan 2015 down to 25 as of September 2017
DR4/DQ8 HLA...biotoxin illness
IGG food allergy to wheat, egg, and dairy...probably all grains
Vit. C&D, probiotics, milk thistle, turmeric, fish oil, methyl b 12, methyl folate, digestive enzymes, Candisol, Ubiquinol, berberine, chlorella, Moducare, LDN, monolaurin, Triphala, Patriot Greens, Paractin
MTHFR compound heterozygous
Igenex IGM positive Lyme, minoMWF

[spondy]

Hi Spiffy1,

Many thanks for the warm welcome, and for providing this service. I hope I will be able to pay it back by providing information / help with what I have discovered so far, and my experiences going forward – I am particularly excited about my new AP treatment.

For people having problems accessing the proper antibiotics, please note that the import of pharmaceutical drugs are actually not illegal in the UK (and I believe also in the US) – This is where I source my antibiotics and other prescriptions, such as Pentasa Granules (Mesalamine), oral Nyastatin (anti-fungal), Entocort (Budesonide), and Ebastine (anti-histamine):
http://unitedpharmacies-uk.md (Bulgaria)
https://www.inhousepharmacy.vu (Tuvalu)

I’ve also noted that its very hard to avoid starch in pharmaceuticals, and I was not able to find any abx that did not contain starch… I guess I will just have to take the hit and be in flare for a few months… ugh.

This is what I take to keep my (extreme) flairs under control – they keep me sane:
https://www.lifeextension.com/Vitamins-Supplements/item01639/5-LOX-Inhibitor-with-ApresFlex (1 pill every 2 hours!)
https://selfhacked.com/blog/borage/ (6g before night)

As for gut repair, Dragonslayer from kickas.org recommends:
“Good to supplement with zinc, calcium, vitE, lysine, vitC, and niacinamide/niacin and if in flare borage seed oil can help but also good to take EVOliveOil by teaspoonful many times throughout the day especially before meals but 14-16 X daily (teaspoon).”
— http://www.kickas.org/ubbthreads/ubbthreads.php?ubb=showflat&Number=519354&Searchpage=1&Main=44132&Words=borage&Search=true#Post519354

I also recommend you check your DNA methylation status, as proper methylation is vital for DNA repair, and for the gut and villi to heal.

Please also note that I first had to resolve issues around sulphur, before I could start on my winning diet – My genetic profile meant I was being poisoned by Sulphite because:
1. CBS upregulation (C677T) caused my homoccysteine to drain down the transulfuration pathway, leaving no HC for methylation
2. Broken SUOX gene meant Sulphate was not converted to sulphite
3. Inflammation significantly increases the production of HC

Sulphite poisoning then lead to compromised methane clearance, leading to exhaustion of BH4, which lead to too many brain chemicals and overstimulation, as well as extreme muscle contraction (not a great combo with AS, in other words…) 🙁

So I highly recommend checking ones genetic profile, and in particularly ones methylation status and your transulferation pathways (i.e. detox pathways):
http://go.strategene.org/genetic-analysis

Thanks again!

Spondy

[spondy]

Hi Pinkmoth,

I run a modified (more restricted) version of the Level 3 of the Keystone diet:
https://keystonebook.com/wp-content/uploads/2018/08/low-starch-food-lists.pdf

I also highly recommend this book, as it neatly summarises most of what we know about auto-immune disorders, and how to put them into remission:
https://keystonebook.com

My diet is the same meal, 2-3 times a day:
Cavalla Nero
Bok Choi (Calcium)
Red Cabbage
Garden Peas (type of peas is very important)
Fresh Lemon Juice
Extra Virgin Olive Oil (Please note that 80% of olive oil in US is fake or adulterated, UK / Europe is also very high)
Salt
225g Wild Caught Alaskan Salmon (not farmed – inportant)

I guess you could call it a cabbage diet…

You’re right, I also struggle with keeping the weight on. So I try to eat as much as I can during meal times, often 1.5 large topped plates with veg. the key for me, is copious amounts of olive oil on my veg, as well as sipping olive oil during the day (see my other response here). However, initially, I could not tolerate large amounts of olive oil, and I had to introduce it by sipping a little all the time. Now I can tolerate large lashings with my meal. But without EVOO, I was losing weight.

I also sometimes can’t help but break my diet – you do get very hungry very quickly, so you need to eat every 4 hours or so, but that’s not always possible when you are working. So sometimes I break down, and buy a packed of dried figs or dried blueberries (chased down with Articin + Neem, sometimes enteric coated oregano oil from Oregano)… I also sometime gorge on a pack of macademia nuts, but that causes actual damage to my colon, it feels like. I know, I know, don’t do this. But hunger does trange things to you….

The last key to my diet was to eliminate broccoli and cauliflower….

Hope that helps, and hope the diet works for you. Please note that this is pretty much like torture, so I recommend getting on with treating your SIBO and start healing your gut immediately, so you can start introducing more foods. I’ve been doing this now for almost a year… sigh… But finally making some progress. Just waiting for my Doxy and Mino…

Let me know how it goes 🙂

Spondy

[Mountains]

Hello Spondy,
Welcome! It sure sounds like you have a game plan that will work for you. There is nothing easy about regaining health and I wish you the best. The road is long, hard and sometimes lonely but I want to share just one thing someone shared with me when I was extremely focused on getting rid of my daughter’s SIBO and H. Pylori as soon as possible. Try not to focus only on the kill and eradication of the pathogenic bacteria. Providing the body with the herbs, vitamins, and minerals it needs to heal is just as important. As I’m sure you know, everything we eat or don’t eat and every medication we take whether natural or pharmaceutical affects our microbiome. Not only does it affect the “bad” bacteria (we still need a certain balance of these) but also the good and if the good become too affected you could be opening the door to even more health issues. Once I stopped hyper-focusing on killing and started making healing soups with herbs and nourishing vegetables, everything we were doing to change her microbiome started to work and now she is SIBO and H. Pylori free. She has Systemic Scleroderma so with the extremely slow motility this was NOT easy. I could write a book with all we needed to do to get her to this point. LOL!! Well wishes!!

[Author]

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