Making Progress

[snglbear24]

Hi all. I just wanted to share a bit of good news. I am not saying I’m cured lol. I started antibiotics June of last year. I tried taking them daily and it was to much for me. The doctor kept saying to try and slow down some people don’t need that much. I was very persistent thinking he was wrong lol. I could never tolerate doxy/mino. I had to switch to biaxian. I switched to taking 1 pill every other day. My ANA is now negative and my SCL went from 3 to 2. I know the antibiotics are helping. I did test positive for Lyme as well. I also have SIBO but all my GI tests are normal. They think the SIBO triggered mast cell issues but hopes it resolves after the SIBO is treated. I bought a sauna i use daily and am going to travel to Bahamas for a stool transplant and pray it fixes my gut. My diet is strict and WBC is low but I am not giving up and will fight to the end!!!💕

Diffused Scleroderma/SLE Overlap
Minocycline June 2016 2 x 100 daily
Culturelle Probiotic 2 x daily
Tumeric 400 mg 3 x daily

[Pinkmoth]

Hi sngl, so glad to hear you’re progressing.
Are your SD symptoms improving and if so, which?
The stool transplant sounds interesting. What kind of doctor is helping you with your gut issues?

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

[Red Lizzy]

snglbear24 wrote:

Hi all. I just wanted to share a bit of good news. I am not saying I’m cured lol. I started antibiotics June of last year. I tried taking them daily and it was to much for me. The doctor kept saying to try and slow down some people don’t need that much. I was very persistent thinking he was wrong lol. I could never tolerate doxy/mino. I had to switch to biaxian. I switched to taking 1 pill every other day. My ANA is now negative and my SCL went from 3 to 2. I know the antibiotics are helping. I did test positive for Lyme as well. I also have SIBO but all my GI tests are normal. They think the SIBO triggered mast cell issues but hopes it resolves after the SIBO is treated. I bought a sauna i use daily and am going to travel to Bahamas for a stool transplant and pray it fixes my gut. My diet is strict and WBC is low but I am not giving up and will fight to the end!!!

snglbear24 wrote:

Hi all. I just wanted to share a bit of good news. I am not saying I’m cured lol. I started antibiotics June of last year. I tried taking them daily and it was to much for me. The doctor kept saying to try and slow down some people don’t need that much. I was very persistent thinking he was wrong lol. I could never tolerate doxy/mino. I had to switch to biaxian. I switched to taking 1 pill every other day. My ANA is now negative and my SCL went from 3 to 2. I know the antibiotics are helping. I did test positive for Lyme as well. I also have SIBO but all my GI tests are normal. They think the SIBO triggered mast cell issues but hopes it resolves after the SIBO is treated. I bought a sauna i use daily and am going to travel to Bahamas for a stool transplant and pray it fixes my gut. My diet is strict and WBC is low but I am not giving up and will fight to the end!!!

I hope you do not mind if I give you some good advice concerning Fecal Transplants. First, the most successful are those in which the donor is a blood relative, this is due to DNA compatibility. As a rule, most non relation FT last only about 6 months, then your old pathogenic bacteria overcomes the transplanted bacteria and you are right back where you started. I assume you will be using Taymount’s new location in the Bahamas? The most likely solution to this is to totally eradicate your biome before transplant, and that includes your oral biome also! Similar to Bone Marrow Transplants in which your marrow and stem cells are totally destroyed by chemo/radiation before transplanting the new material, your biome must be totally destroyed by use of very potent antibiotics so that there is nothing left to reject the new biome. Easier said than done, due to the vast array of strains, many requiring special antibiotics since they are anaerobic and will not respond to most. This is not something that is accomplished in a few days, so be prepared for numerous infusions and side effects. I do not believe Taymount really pursues this practice, it seems they rather feel that multiple infusions (10) overcome this issue. When I asked for statistics on successful FT over 6 months, they said these were not available as this time, so I think they prefer to keep this information private since it may not be too good. Despite doing this, it still does not work every time, but it is more successful than if it is not done. I have looked into this myself and keeping it as Plan B should my current treatments fail at some point. It is a lot of money to spend and you want the odds in you favor as much as possible. Good Luck! Liz

[Maz]

Snglbear, it’s great to hear you’re on an improvement trend. It can take time with SD – especially with lupus overlap, but you stuck it out, fought hard, did the homework, saw an experienced doc, and now it seems you are reaping benefits! YAY! Thanks for sharing this positive news with us.

Nice info on FT, Liz. I’ve often thought that if I ever went down to Australia, I’d try to get in to see Dr. Borody. He’s an interesting guy, because he’s also involved in the development of the Redhill triple-combination antibiotics for various autoimmune processes.

Doctor Tom Borody claims faecal transplants curing incurable diseases like Crohn’s

Redhill Triple Antibiotic

But, honestly, I like the idea the Canadians came up with – poop pills!

I’ve mentioned this before here, so sorry to boringly repeat myself, but my Dad was an old-school veterinary surgeon and it was common practice to scoop poop from a healthy cow and transplant it into a sick cow for various ailments to re-set immune function and fight whatever infections the sick cow was dealing with. I think you’re right about caution in humans, however, as one person’s ideal microbiome may not be another’s. Poop is teeming with bugs – good and bad – and these bugs have a lot to do with what immune-system and genetic switches get turned off or on. It’s certainly a promising field, for sure, though, and something to watch as it evolves.

[Linda L]

Singlbear, how long were you on Mino/Doxy and how long on Biaxin?
Maz, Redhill’s RHB 104 for Crohn’s disease and RA as well. Also for MS /!/ and NTM. Again I am so surprised that so many diseases are being treated with the same medication. The same one pill will be used for everything in the future! Have they started selling it?

RA tried everything: Methotraxate, Arava, Humira. Pneumonia three times. Anemia. Very low iron. Hypothyroidism
AP from April 2014 till August 2015. No luck.
Current medications: Natural thyroid, Mobic, supplements,
vitamins and minerals.
MTHFR heterozygous

[Author]

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