scleroderma antibiotics

[Luck20]

Thanks for going into such detail about this Pinkmoth. This is a perfect example why these complex diseases are not a one size fits all approach for everyone. There is so much we don’t understand and even healthy, simple things like vitamins might be worth reconsidering in some cases.

I hoped things get better. Thanks so much for being brave enough to share your story.

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]

Pinkmoth~ thank you for the suggestion. I think I want to do this test on myself and my husband as well.

Cheryl

[Cheryl F]

Luck20~

You said, “this is a perfect example of how these diseases are not one size fits all.”

I think this is a very important point, and related to how patients who undertake AP and potentially a combination of other alternative medicine protocols must be their own advocate. They must be the director, quarterback, conductor, of their therapy. Even the best doctors cannot keep track of your symptoms and how they relate to med or life changes. Even in allopathic (one size fits all) medicine, you need to be the conductor, the various specialists aren’t able to see your individual “big picture.”

Good job Pinkmoth to keep track of all this.

Best~

Cheryl

[maddie]

Hi Pinkmoth

I just wanted to say that I’m truly sorry you are going through all of this.

When I was at my most scared and lost last year (when I first got symptoms of an autoimmune disease), I just wanted to sleep all of the time. I was terrified, and I felt like my life was over. I hoped I would wake up and the problem would be gone. It still hasn’t gone!

What helped me when I felt most worried was to remind myself to focus on the NOW. Take a few deep breaths and only think about today or even this minute. I also listened to audiobooks (Audible is great) so that I could focus on other imaginary worlds. I’m a big sci-fi fan 🙂

I think seeing the doctor to help you relieve the stress of this is a brilliant idea. I hope the IV works and that your appointment in July goes well (I’m sure it will).

All the best,

Maddie

No official diagnosis yet but probably some type sero-negative, symmetrical inflammatory arthritis.
Started AP treatment December 2018. 200mg Minocin MR Mon/Wed/Fri.

[PhilC]

Hi,

Pinkmoth wrote:

I talked to the pharmacy. I was on was Aurobindo generic now.

Aurobindo does not have a good reputation on this forum. Several people have reported getting worse after they were switched to it.

Pinkmoth wrote:

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…)

CBD can cause hypertension and tachycardia. It also appears to mess with cortisol secretion and can make your cortisol level increase.

Regarding CBD’s effect on cortisol, see:

Effect of cannabidiol on plasma prolactin, growth hormone and cortisol in human volunteers.
https://www.ncbi.nlm.nih.gov/pubmed/8257923

Pinkmoth wrote:

I am very torn between staying on his and trying to switch to peletted from overseas.

Switching to pelleted mino from overseas is unlikely to help much, if any. It could even make matters worse. A couple of people reported receiving “Aknenim” that was very likely counterfeit. Having said that, I have ordered minocycline tablets from overseas twice. I use them as “insurance” to help make sure that I never run out of mino. Basically, I use two or three of the mino tablets per week as a way to “stretch” my supply of Torrent mino.

Phil

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

[Pinkmoth]

thank you all for your responses.

I agree with you Phil. i decided to stay on the Zydus Mino that I had started AP on (Aug ’17 to summer ’18) and just started back again on May 4. Since I know I was doing better on that and everything else is an unknown, it seems safest for now.

it seems like CBD can affect your entire endocrine system in ways not entirely understood, and mine is definitely messed up right now. I have been off CBD since March 27. I am really afraid that since I was taking such an enormous dose every day for about 3 months that I might have really permanently screwed something up.

but its kind of a chicken or the egg situation in that the reason I went on the CBD in the first place in Dec is that I was having some unusual anxiety. this seemed to be kicked off at the end of November when I started a new round of fluconozole.

so I took CBD and felt great but it seemed to be less and less effective so I took more and more of it.

basic timeline:
oct: severe sharp persistant stomach pain and reflux (probably ulcer)
Nov: flucon, anxiety
Dec: CBD
Jan: weight loss and health decline
April: h pylori positive test

I’m thinking the h pylori was present for a while. maybe the fluconozole made it worse somehow, I don’t know how or why but maybe it’s possible. and maybe the stronger the h pylori infection got the more it raised my cortisol. I spent some time on an h pylori forum today and searched the words “panic” and “anxiety” and pages and pages of posts came up of people describing the panic and anxiety that came on with this infection.

It also seems an extremely difficult infection to eradicate and I’m very afraid that I may never be able to get it under control and therefore my SD will continue to advance uncontrollably. I’m trying very hard to be hopeful.

until I am on Xanax or something maddie, I am usable to relax or enjoy anything in any way. can’t listen to music or the radio or watch anything. my mind is unable to be distracted. as if I’m staring into the face of a lion every second. my body just won’t let me come out of fight or flight mode. as if SD weren’t a bad enough thing to have to cope with, this extra layer of fear is truly the icing on the cake.

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

[Pinkmoth]

also Cheryl there are some good adrenal groups on FB if when you get your cortisol results back there are any abormalities. one I’m in called Adrenal fatigue and thyroid care. some smart helpful women in there

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, please study magnesium. It is known to calm the nerves, muscles, and help you sleep.

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

[bonnielou]

Wow Pinkmoth, I am so sorry to learn about your recent challenges. These are complicated diseases and often difficult to figure out what is at play. It sounds like you have good resources — I hope Zydus does the trick and things turn around soon. Keep us posted.

Bonnie Lou
RA 02/07,AP 10/07
Minocycline 200mg MWF; Plaquenil 100mg 3 days/week
Fish Oil, Ubiquinol, Turmeric, Vit C (2 grams) , MultiVit, Magnesium, Astaxanthin, D3 (5000), probiotics and a daily dose of yoga!

[PhilC]

Pinkmoth wrote:

until I am on Xanax or something maddie, I am usable to relax or enjoy anything in any way. can’t listen to music or the radio or watch anything. my mind is unable to be distracted. as if I’m staring into the face of a lion every second. my body just won’t let me come out of fight or flight mode. as if SD weren’t a bad enough thing to have to cope with, this extra layer of fear is truly the icing on the cake.

What is your resting heart rate? Is it elevated?

Have you tried taking niacinamide? I have taken 250 to 500 mg (usually 250 mg) of niacinamide many times to help me fall asleep. It acts like a mild tranquilizer.

Phil

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

[Luck20]

Some of these symptoms sound like hyperthyroid to me… Sorry to suggest it. I bet the last thing you feel like is more tests.

Hang in there. I hope you feel better soon!

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]

resting heart rate usually elevated but blood pressure usually low.

it DOES sound like hyperthyroidism, (except I have no appetite and don’t sweat and have a rather slow rate of digestion/metabolism ) and actually thyroid/graves was my first avenue of investigation. but my thyroid labs usually show me as hypothyroid (my original diagnosis a couple years ago). tests for graves we’re negative and none of my blood work indicates hyper. but going to run thyroid again soon since I’ve been off thyroid meds for a while now and want to see what might be going on now.

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

[Author]

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