scleroderma antibiotics

[Pinkmoth]

hi all,
for those with scleroderma, which abx have you used besides minocycline and found effective?

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

[Luck20]

I’m not sure which antibiotic has done what, but you can see a rotation I’ve done below. Also, did Ivs of Clindo for awhile that I thought was quite effective. Lately, I’ve tried a tincture of Houttynia and see some additional wrinkling in my hands. It is suppose to help with some form of fibrosis and mycoplasmas. I really herxed with the first single drop so I’m thinking it might be effective for me. Now I’m tolerating more.

Originally +Ana May 2018 (now negative Jan 2019), scleroderma or uctd, Morphea (now mostly gone!), Myositis ( better now) Probable Lyme w/coinfections, had Bartonella marks that disappeared,
Mild reflux, mostly gone,mild ild, skin hardening (continued softening and some parts normal again) Impaired liver function, now normal after 1 year and CK, LDH all normal again, 14 mo after starting ap.

Minocin m-f 2x, antibiotic rotation, ldn 4.5, cellcept 3000, probiotics, Monolaurens, Olive leaf extract, fish

[Mountains]

Hello Pinkmoth,
As you know we have only started treatment for our daughter with Scleroderma/MCTD about 2 months ago using Azithromycin 250mg MWF and initially 3 days of Clindamycin IV at 300mg per day. She is a very thin 12-year-old so the Doctor has been conservative. A few days ago we started the Alinia pulsing. The first week 250mg once a day and second week 250mg twice a day. Then 2 weeks off and 2 weeks on for a cycle of three rotations.
The thing I am finding interesting is that as I learn more about herbs that affect the Lyme I am finding that we have had our daughter on products that include some of these herbs for some time now and I can tell you the ones I saw a serious herx reaction resulting in improvement or just improvement in her symptoms after taking them. The first was a tea we used to treat her H. Pylori. Now the interesting thing is that it not only treated the H. Pylori but after she finished the 30 days on the tea she had several months of no Scleroderma symptoms either. Even her reflux was gone. It eventually creeped back as did the other symptoms, in fact after that is when she had her first tendon friction rubs but something happened. That tea is the only thing I can attribute her short remission to. It kills spiral like bacteria. I don’t have enough personal knowledge about the specifics but something in that antibacterial/antimicrobial tea from Africa helped her. It’s called Matula Tea. The second is GI Microb X. This has sweet wormwood and she could not handle taking it for very long (only about a month at half the dose recommended on the bottle) but it seemed to have just started to make a difference in her symptoms. Before I knew she wasn’t tolerating the GI Microb X very well I added Atrantil but that too has sweet wormwood so I wonder if it was too much of that one herb or if she does have Lyme and can’t handle that particular herb. Her kidneys really started to hurt so we stopped both products but I can tell you that although she was herxing that month on the GI Microb X she did have slight improvement in the Raynaud’s toward the end right before we had to stop.
One of the other products we saw results with was Monolaurin. That was the very first antibacterial/antimicrobial we tried and it initially gave her quick results in reducing her symptoms but then they creeped back. We did all these things to treat SIBO, Small Intestinal Bacterial Overgrowth and H. Pylori. We had no idea then that she had Scleroderma/MCTD.

[Pinkmoth]

thank you both for the responses.

mountains, I was recently diagnosed with h pylori as well, so the details on your daughters treatment are very pertinent to me. how is she doing now, by the way?

I was to a point just 4 months ago where I was scleroderma symptom free and living with more health and energy than I had in years. something happened and the SD has come roaring back. in some ways I am sicker than before. so trying to get it under control and looking at options. I know I need to treat the h pylori but the gastroenterologist I saw is a real piece of work and won’t treat.

thank you!

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

[Mountains]

Pinkmoth, I absolutely wholeheartedly think Matula Tea is the best way to go for H. Pylori. I found it online after realizing I didn’t want to do the 2 antibiotics and proton pump inhibitor with our daughter. At that point we had been working on her SIBO and microbiome for 2.5 years. Again, at the time we did not know she had Scleroderma, we found out shortly after doing the tea. I encourage everyone to do there own research but our experience was wonderful. It was gentle and it worked. It is an antimicrobial/antibacterial tea. Looking back I see this tea did improve her Scleroderma symptoms as well as resolve the H. Pylori but again at the time I didn’t really know what I was looking at because I didn’t know she had an autoimmune at the root of all of this. Our daughter just got retested one year after doing only the tea to treat the H. pylori and she is still clear. The Matula Tea is from South Africa and comes in a brown box. YOU MUST take it on an empty stomach in am and then again in pm. They recommend others in the house be treated as well but we didn’t do that. Of course, if you have a spouse they should be treated as well but in our case we just don’t share cups and food with each other. It is $200 for one box of a 30 day treatment for one person. One tip for treating one other person using the same box is either steeping the tea bag for the recommended time and then steeping a second cup with that same tea bag for your spouse or freezing the tea bags for a future second treatment if you need it. You will need to steep that second bag in very hot water for much longer. THIS TEA WORKS!! At least for our daugther it did. For 2 years we tested at her Pediatrician and the local hospital and they told us she didn’t have H. Pylori. I was so confused because she had all the symptoms. The stomach pain became excruciating for her. I contacted a Naturepath and she said to use an outside lab that looks for DNA. That test came back sky high. Unbelievealbe high amounts of H. Pylori. I ordered the tea and within days our daughter said her stomach stopped hurting as badly. By the end of the 30 days she could eat without pain. Here is the source I buy from http://www.matulatea.com/ In the future I will post the natural antimicrobials/antibacterials we used for Small Intestinal Bacterial Overgrowth (SIBO) as well because I know now SIBO is a problem in the Scleroderma community and as I’m learning more about this Sclero world I am starting to see that we were affecting her Mycoplasma with some of what we were using for SIBO and H. Pylori. Hope some of this helps!

[Luck20]

So sorry to hear your struggling Pinkmoth. What is happening that is making you feel bad? Have you been under stress? Do you have any ideas on what triggered it?

Originally +Ana May 2018 (now negative Jan 2019), scleroderma or uctd, Morphea (now mostly gone!), Myositis ( better now) Probable Lyme w/coinfections, had Bartonella marks that disappeared,
Mild reflux, mostly gone,mild ild, skin hardening (continued softening and some parts normal again) Impaired liver function, now normal after 1 year and CK, LDH all normal again, 14 mo after starting ap.

Minocin m-f 2x, antibiotic rotation, ldn 4.5, cellcept 3000, probiotics, Monolaurens, Olive leaf extract, fish

[Pinkmoth]

thank you all so much for your responses.

I was doing so incredibly well at just about the 1.5yr mark of AP. I would say I was at 100%. no more skin involvement, joint pain or tendon problems. great energy.

I was able to take up archery and ice fishing again and in October I went to France and even hiked up a mountain. things I never thought I’d be able to do again.

I don’t know what happened but in February I fell apart. there are just too many variables. maybe I was doing too much and the stress caught up to me and wore my immune system down (even though it was “good stress”). was doing a lot of traveling. I wasn’t taking any probiotics anymore. I was pulsing diflucan. I changed my minocycline brand. I was getting lax with my diet.

I will document here my experience here for others. first i began waking up in the middle of the night feeling panicked. this happened more and more frequently. then I would feel fatigued in the middle of the day. I was losing weight and had decreased appetite but I didn’t think much of it. then one morning I looked in the mirror and my saw my skin looked 10 years older. dry, deeper creases around mouth and dark purple bags under eyes. hair started falling out.

I went to a functional nutritionist who ran a really cool test on me called a GI map. it determined that im not absorbing my food, my gut is extremely leaky, my immune system is weak and struggling, my commensal bacteria count is low and I have a significant h pylori infection.

tests also show that my cortisol is very high – inducing panic attacks and keeping me up late at night. probably in response to an infection (maybe the h plori)

my weight loss has accelerated and I am down to the lowest I have ever weighed as an adult (108 lbs). about 3 weeks ago my scleroderma symptoms returned. first with burning in hands and feet at night, a lip that would lose definition in a way I find hard to describe. then a tightness in my right calf. and burning skin on arms from elbow down esp hands, legs from knee down esp feet, and cheeks chin and lip. fingers have become more swollen over time. My face feels tight in my cheeks and top lip when I smile. When the inflammation/burning is intense, the anxiety/cortisol spikes at the same time. the cortisol seems to be inducing blood sugar regulation issues. I am barely sleeping.

so seems that my gut is a wreck, probably due to h pylori. I don’t know if my SD is flaring in response to the h pylori or another bacteria (I’ve tested positive for a lot of random low level infection throughout the years).

I saw a gastroenterologist at the University of Michigan who proclaimed that leaky gut didn’t exist and also did not trust the results of my h pylori test. she ran the standard test which came back negative. I have been treating the h pylori with herbals for a little over 2 weeks which I’ve read can cause a false negative. but she won’t treat me. so I have an appointment with another local gastro person next week and Mayo clinic in Minnesota on the 20th. I’m also going to beg my primary to treat the h pylori with the quadruple bismuth therapy.

I also have a round of clindy IVs booked in 2 weeks. I honestly don’t know though if that will be helpful or make matters worse. but I can’t let the SD progress so if I have to throw the kitchen sink at it then that’s what I will do.

I’m trying hard in the meantime to take care of my gut. but i am mostly bedridden at this point mainly owing to the ridiculously high cortisol levels that keep me in a state of panic, unable to function or focus on anything. it sounds crazy and makes me feel crazy but, it is such a strong physiological state – there is no escaping the acute sense terror one is overtaken by during the fight or flight response.

I am very scared because I have again lost almost everything, am wasting away and have very little quality of life, and because I have to make some tough high stakes decisions with no clear answers about how to tackle this. but i take comfort knowing so many of you have been through worse. I am so thankful for you and RBF.

thank you for reading.

-k

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

[Luck20]

Thanks so much for sharing your experiences. I see so many comments that remind me so much of last year at this time. I think the iv’s of clindy is one of the best things you could do. How do you get them perscribed? Is it from an alternative healthcare provider?

Also, last year my cortisol was terrible when getting diagnosed and suddenly I was barely sleeping, which was uncommon for me. I think the pain was a major factor too. I was given Trazadone and it felt like a miracle. In only a day or two, my sleep sharply improved and in a couple weeks I started to slowly turn around. 2 days after starting the rx, my mood improved and suddenly I had the strenghth to make the diet modifications to bring down inflammation. Trazadone is considered an antidepressant but works well for sleep and sometimes nightime pain. I was taking 50mg an hour before bed at 8pm. I’m off it now, but my body has been retrained to sleep well and now I’m getting some of the best sleep in almost 20 years, even before getting sick! 🙂

I’m also on LDN. Its used at bedtime too and I suspect it works as some sort of synergist with trazadone. That might be another drug worth looking into… Its well loved in the alternative medicine community and is suspected to help autoummune diseases.

If your interested, maybe start another post on LDN so everyone can chime in on their experiences. It might be just the ticket to halt the progression!

Hope that helps.

Originally +Ana May 2018 (now negative Jan 2019), scleroderma or uctd, Morphea (now mostly gone!), Myositis ( better now) Probable Lyme w/coinfections, had Bartonella marks that disappeared,
Mild reflux, mostly gone,mild ild, skin hardening (continued softening and some parts normal again) Impaired liver function, now normal after 1 year and CK, LDH all normal again, 14 mo after starting ap.

Minocin m-f 2x, antibiotic rotation, ldn 4.5, cellcept 3000, probiotics, Monolaurens, Olive leaf extract, fish

[PhilC]

Hi,

Pinkmoth wrote:

I wasn’t taking any probiotics anymore.

Why would you do such a thing?

Pinkmoth wrote:

I changed my minocycline brand.

That doesn’t really tell us very much. What were you taking, and what did you switch to?

Phil

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

[Luck20]

It sounds like you have some good ideas on how to heal. Lots of good suggestions.

I’d still put getting good sleep toward the top of the list. Different approaches are available. It can do so much for your hormones, anxiety, pain level and just helping your body deal with stress. Once I slept better, my stress level went way down and I could make positive changes to start to get better and heal. It was definitely a turning point for me.

Originally +Ana May 2018 (now negative Jan 2019), scleroderma or uctd, Morphea (now mostly gone!), Myositis ( better now) Probable Lyme w/coinfections, had Bartonella marks that disappeared,
Mild reflux, mostly gone,mild ild, skin hardening (continued softening and some parts normal again) Impaired liver function, now normal after 1 year and CK, LDH all normal again, 14 mo after starting ap.

Minocin m-f 2x, antibiotic rotation, ldn 4.5, cellcept 3000, probiotics, Monolaurens, Olive leaf extract, fish

[Cheryl F]

Luck20 wrote:

Also, last year my cortisol was terrible when getting diagnosed and suddenly I was barely sleeping,

In December 2018, my younger daughter (not the daughter with systemic SD) experienced an extremely traumatic event. She immediately stopped sleeping, and after a couple weeks of almost no sleep, he sleep pattern was flipped. She stayed up all night, and slept all day unless she had a commitment.

About 3 months later, I noticed what was likely linear scleroderma (en coup de Sabre) on her forehead. During these few months she also gained a lot of weight, and a lot of it in her belly.

I want her to have her cortisol levels checked but so far haven’t been able to find a doctor will to run that test. I think cortisol is a part of her overall health issue.

[Spiffy1]

Pinkmoth, I am very sorry to hear this. I have not had a probiotic in over a year either, and we have to remember that when Dr. Brown was helping patients many of them recovered without probiotics. Is there any way you could switch back to the generic you were on when you were feeling well? Changing up generics seems to mess a lot of people up. It did me. I became allergic to all the rest of them and now have it compounded with only methyl cellulose. As far as sleeping goes Magnesium Calm was a lifesaver for me. Please please get your RBC Magnesium levels checked and with your doctor’s permission start supplementing before bed. It relaxes your muscles and calms your nerves. When I had malabsorption and wasn’t sleeping I got very dependent on it. I stayed on it for years but now only take Epsom salts baths. Sleep is a must. I will be doing some more thinking and get back to you. Hang in there. By the way. What is your take on gluten and dairy? When I gave those up my ship starting turning around. Just a thought. Also I know LDN is helping me.

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

[Luck20]

Cheryl F~
For getting cortisol levels checked, maybe find a good doctor that also understand thyroid and hormones. Sometimes its all intertwined. The hormone saliva kits they givr you also contain the cortisol tubes for multiple daytime testing times.

If you check out local moms groups, either holistic or ‘crunchy’ moms, they can refer you to drs that know how to do the full range of testing. Often, there are local fb groups you can join and do searches on their page. Their an incredible local resource!

Originally +Ana May 2018 (now negative Jan 2019), scleroderma or uctd, Morphea (now mostly gone!), Myositis ( better now) Probable Lyme w/coinfections, had Bartonella marks that disappeared,
Mild reflux, mostly gone,mild ild, skin hardening (continued softening and some parts normal again) Impaired liver function, now normal after 1 year and CK, LDH all normal again, 14 mo after starting ap.

Minocin m-f 2x, antibiotic rotation, ldn 4.5, cellcept 3000, probiotics, Monolaurens, Olive leaf extract, fish

[Cheryl F]

Thanks for the recommendation. I am going to try to talk our GP into doing it. Unfortunately, we had a great integrative rheumatologist that has helped our entire family for years. He is currently on extended medical leave, although I am in contact with him via email and he gave me some guidance for her protocol. As I said in a different thread, finding the right doctor to help is very stressful and a lot of foot work.

She has an appointment with the scleroderma specialist at Stanford but that is not until late June. I’ll will just put this out there, my hope is that the scleroderma lesion will have vanished before that appointment and the doctor will just look at us like we’re crazy! That’s my wish, just putting it out there to the universe.

[Pinkmoth]

thank you all for the replies.

Phil, I think I had developed an issue with SIBO and also felt like I was having mild allergic reactions to probiotics. I thought I had overdone it with probiotic consumption and may be making everything worse by continuing to supplement probiotics. I think I should have gotten medical help to try to get my SIBO under control, but I didn’t.

What happened with my generic was kind of a long story. In July I noticed that my minocycline pills looked different. I also noticed some subtle symptoms creeping back up.
I talked to the pharmacy. I was on was Aurobindo generic now. they assured me it’s what I had been on the whole time. I knew that wasn’t true but couldn’t figure out WHAT I had been on. so I asked them to switch me to torrent.

that seemed to be fine but maybe wasn’t because in September more symptoms happened that really freaked me out. I was in France at the time so I started on the French name brand which is pelleted around oct 1. a few days later after eating a lot of French sausage I was hit with an intense pain in my stomach that I’m certain was an ulcer. I treated it with aloe vera juice daily and in a week it seemed to resolve. I didn’t think anymore on this…

the French pharmacists only gave me a 2 month supply of peletted mino though so by December I had run out, felt good in oct and Nov and December. started the torrent again in December. I started losing weight in January.

there are a ton of other factors that happened here though including starting starting L glutamine in November, starting CBD oil in December, and during all if this pulsing Diflucan every 2 wks with the oversight of my LLMD.

I knew that diflucan and CBD are both potent inhibitors of cytochrome p450. I had asked my LLmD if that was ok and he said he hadn’t seen a problem before. but I was taking a big doses of CBD oil daily (with a tincture dropper) kindof by accident because I misunderstood the dosing (one of many mistakes I feel like I have made throughout this entire time…)

a few days into my January diflucan pulse I noticed a strong sweet taste in the back of my throat that would not go away. I began waking with panic in the middle of the night every night. my daily anxiety seemed unable to be suppressed even with the CBD oil. weight loss accelerated. skin thinned out everywhere and generally just looked dry, dull, terrible. blood sugar issues and cortisol through the roof.

my doctor’s thought I had a thyroid issue going on so started me on LDN and vitamin D. I started those on the same day. 2 days later woke up with the burning hands and feet in the middle of the night that I knew accompanied my old SD onset. the SD stuff has been accelerating since then, with the face involvement progressing farther than it did 2 years ago before I got it under control.

I went to a functional medicine nutritionist around that time and she ran a comprehensive gi map test that indicated I had an h pylori infection, had severely leaky gut and malabsorption issues.

for the past week I have been back on Zydus Mino which is the generic I started AP on, even though I still have a month of French peletted mino left. I am very torn between staying on his and trying to switch to peletted from overseas.

as you can see the entire thing is a big mess. too messy to really clearly untangle what has happened here. I think probably I had an h pylori infection for a while, and maybe it was slowly messing up my digestion and creating malabsorption issues. maybe those issues are affecting the way I absorb/metabolize the minocycline, because not only is my stomach acid low but my small intestine not absorbing stuff. so maybe I haven’t been getting the Mino into my body for a while. I also think the h pylori is responsible for my insane cortisol levels, because I’m on an h pylori support group on Facebook and severe panic/anxiety issues seem to go hand in hand with this infection. though I have a doctor trying to rule out pituitary/adrenal tumors that could be causing excess cortisol production. I feel doubtful something like that is the cause though…just an instinct…

Cheryl, you can order your own saliva cortisol test here https://www.mymedlab.com/products/search?utf8=✓&q=zrt
that is a really good one and will give you a better picture of what’s going on with whole day cortisol pattern than a 24-hr urine collection or am serum draw.

I’m trying everything I can to get sleep. I’m taking a mix of cortisol suppressant herbs and melatonin and at best I can get down to waking up only 3 times per night.
I also need to take these herbs all day because my heart is pounding constantly and the adreneline is going and I have never in my life felt such a constant intense state of fear and panic. I’m actually going to ask my doctor for Xanax tomorrow because I can’t live like this. I have a lot of decisions to make and work to do to try and right this ship and I am nearing a state of psychological incapacity to do these things due to the intense panicking.

I have been treating the h pylori with mastic gum at the direction of my functional medicine nutritionist but im having a lot of doubts that this will eradicate it and I don’t feel like I have time to muck about. SD advances so fast…it’s terrifying.

I’m thinking my next step is to retest for h pylori and then probably treat it with the quadruple therapy (flagyl, bismuth, ppi, tetrAcycline). I really don’t want to do this, partially because my guts already in bad shape and my weight is dangerously low, and partially because I don’t want to go off of my mino for 2 weeks)

in July I have an apt with Dr F in California… I hope with all my being he will be able to help me. with the exception of this forum, I have felt so very alone through my entire AP journey that started 2 years ago.

thank you all for reading and for your support.

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

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