Take a hiatus from Minocin?

[redrock]

I’ve been on the AP treatment for 4 years and my ANA numbers and pulmonary pressures have vastly improved. I take 200 mg every other day.

However, I have decided to take a hiatus from Minocin for this reason. I am having severe problems with bloating. I know right away everyone is going to say food intolerance! Celiac disease! Etc. I have tried eliminating grains and dairy from my diet and it makes not a bit of difference. Fact is, the bloat seems unrelated to what I am eating. Sometimes I will go out and run 3 miles and come home looking 6 months pregnant. In fact, I can get bloated after a long walk on an empty stomach. So I’m not convinced it’s food related. This bloating started about 6 months after I started AP and has now reached a critical mass where I must put on clothes 2 sizes too big to accommodate for the bloat that will occur later in the day.

So I’ve decided to go off Minocin for 2 weeks and see if it makes a difference. By the way, I take Micro Flora 50, and have tried Lactaid and digestive enzymes. Makes no difference. Does anyone have any insight?

This post has been moved from Personal History and Progress section of the board where others are unable to reply to posts (it’s for authors’ journal notes on their progress). Now in General Discussion where others will be able to respond. RBFV

[Maz]

@redrock wrote:

I’ve been on the AP treatment for 4 years and my ANA numbers and pulmonary pressures have vastly improved. I take 200 mg every other day.

However, I have decided to take a hiatus from Minocin for this reason. I am having severe problems with bloating. I know right away everyone is going to say food intolerance! Celiac disease! Etc. I have tried eliminating grains and dairy from my diet and it makes not a bit of difference. Fact is, the bloat seems unrelated to what I am eating. Sometimes I will go out and run 3 miles and come home looking 6 months pregnant. In fact, I can get bloated after a long walk on an empty stomach. So I’m not convinced it’s food related. This bloating started about 6 months after I started AP and has now reached a critical mass where I must put on clothes 2 sizes too big to accommodate for the bloat that will occur later in the day.

So I’ve decided to go off Minocin for 2 weeks and see if it makes a difference. By the way, I take Micro Flora 50, and have tried Lactaid and digestive enzymes. Makes no difference. Does anyone have any insight?

Hi Redrock,

See you have CREST and have had breast cancer, as per your signature line below – is your signature line current and are you still taking calcium and iron? If you don’t kind me asking, what treatments did you receive for the breast cancer?

CREST, pulmonary hypertension, breast cancer
Minocin 8/2010 100 mg 2X every other day, LDN, Desiccated Thyroid, Aspirin, B-100, Eve Primrose Oil, MSM, Flaxseed, Biotin, Grapeseed, Calcium, Seleniun, Bilberry, Lutein, Vitamin D3, Co Q-10, Iron, Lecithin,

Do you have calcinosis and was there a reason for supplementing with calcium? Also, any reason for the iron supplementation? Dose of LDN? Have you been tested for candida in your gut? How long did you try going gluten-free?

[redrock]

I had lumpectomy and radiation for breast cancer, no chemo. I do take tamoxifen. I take iron because I’m a vegetarian. I don’t take calcium anymore. I should probably update the signature line. I never really had any symptoms from CREST or PH, it was just a bunch of scary numbers on labs that got me proactive and on AP. I did have a bit of Raynauds but it wasn’t that troubling. I went off gluten for a few days, and dairy. But frankly as a vegetarian that doesn’t leave me much to eat. I haven’t been tested for candida. How does one go about doing that? I should also mention I had a hysterectomy with ovaries removed about 3 months ago (robotic surgery) and I have asked my doctor about this bloating and she says its unrelated. Besides I had this problem before the surgery anyway.

[Maz]

@redrock wrote:

I had lumpectomy and radiation for breast cancer, no chemo. I do take tamoxifen. I take iron because I’m a vegetarian. I don’t take calcium anymore. I should probably update the signature line. I never really had any symptoms from CREST or PH, it was just a bunch of scary numbers on labs that got me proactive and on AP. I did have a bit of Raynauds but it wasn’t that troubling. I went off gluten for a few days, and dairy. But frankly as a vegetarian that doesn’t leave me much to eat. I haven’t been tested for candida. How does one go about doing that? I should also mention I had a hysterectomy with ovaries removed about 3 months ago (robotic surgery) and I have asked my doctor about this bloating and she says its unrelated. Besides I had this problem before the surgery anyway.

Hi Redrock,

Thanks for sharing a bit of back story. You’ve been through the mill, but sounds like you’ve come out the other side a lot stronger. Well done!

I have done a little research on iron, as I have a relative who suffers from hemochromatosis, which is an iron overload disease. According to what I’ve read, it seems that it’s pretty universally accepted in medicine now that women (especially those who no longer have menses and who do not suffer with iron-deficient anemia) should not supplement with iron, because it’s actually pretty toxic, causing free-radical damage to the body. Iron is stored in the body and these stores are drawn upon when needed and recycled, like when the diet is deficient in iron.

The following article on the Cancer Care site is pretty interesting, because it speaks to folks who are vegetarians and claims that vegetarians are no more iron-deficient than non-vegetarians (if anything, they may lack essential amino acids, however). The article also talks about the dangers of iron supplementation in those at risk for or who have had cancers, like breast cancer, as cancer tumor cells (and infections) feed off of iron. The best way to test for iron overload is to check ferritin levels, which is pretty rarely done. In folks with rheumatic diseases, it should really be a part of their metabolic panel blood testing (but that’s just my humble opinion).

http://www.cacare.com/iron-and-cancer

“Vegetarians have no more iron deficiency or anemia than non-vegetarians. On the whole, research indicates that dietary intake of iron by vegetarians, particularly in the case of vegans, meets or exceeds the RDA (Recommended Dietary Allowance).”

The other thing about iron supplementation is that it can cause gastrointestinal upset, including bloating. It’s kind of interesting to read about the side-effects of iron overload diseases, because these folks have so much iron in their blood, they have to have it drawn off at intervals to prevent the devastating effects to their organs. It’s actually believed, too, that folks with MS have high concentrations of iron in their brains and that the resulting toxicity is what contributes to leakage into the blood/brain barrier and causes some of the resulting effects to the nervous system. Additionally, if one adheres to infectious causes for rheumatic diseases, the following study article explains why iron promotes infection by disturbing the body’s natural ability to target and phagocytize infections that lead to overgrowth of bacteria and fungi.

http://jmm.sgmjournals.org/content/55/3/251.long

My best fellow patient insight based on just the above referenced links would be that iron supplementation may be a strong candidate as a culprit in the bloating and is probably not a good thing to take for anyone with a rheumatic disease (and who is trying to reduce pathogen load) unless suffering from diagnosed iron-deficiency anemia.

With regard to gluten, folks can be sensitive to gluten without being celiac. In order to test this, it’s important to be off gluten for several months. As gliadin, the gluten protein, can cross-react with thyroid tissue, increasing thyroid attack, some folks find they actually need to reduce their thyroid meds over time:

http://chriskresser.com/the-gluten-thyroid-connection

Hope something here helps and that others will chime in with their insights for you. Best to you as you figure this out, Redrock. I think if I had just markers for SD or markers and disease symptoms, I wouldn’t want to drop my mino if there were other possible causes of my bloating. I think I’d have to research all the potentials, but it would probably be the last thing on the list I’d want to drop. Fortunately, too, if candida is an issue, tetras can be taken alongside pharmaceutical anti-candida meds (provided liver function is okay).

Here is one lab for testing candida, but others may share their experience of candida testing and where they had it done:

Antibody Assay Laboratories, Inc.
1715 E. Wilshire – Suite 715
Santa Ana, CA 92705
Phone: 714-972-9979
Fax: 714-543-2034
Web site: http://www.antibodyassay.com
E-mail: inquire@aalrl.com

Testing for leaky gut –
Great Smokies Laboratory
Web site: http://www.gsdl.com

[redrock]

Thanks, you’ve given me a lot to think about. I had my ferritin tested recently. I will check and see what it says, but I think it was in the normal range. It used to be very low.

What I’ve decided to do for now is drop down to 1 pill every other day instead of 2 pills every other day. About 6 months after I started taking it, the doctor reduced my dose when my labs showed improvement. But then the numbers went back up again. Since I’ve been on it 4 years now I’m ready to try another reduction. It may be that I need to cycle on and off.

[Karel]

For the bloating I would check your for gut bacteria inbalance via the metametrix/genova (they have joined) comprehensive stool test. Any chiroprator/naturapath can help you with this but there are also internet companies that sell you the kits directly, but you will miss the expert explanation of the results (although the report does explain a little bit). Also try VSL#3 probiotic. That is the only probiotic which has worked for me noticebly, possible because of the amount of bacteria, quality or the temp control it is delivered in. Then again, my problem was not bloating, but i had overgrowth of yeast for many years. Success!

[redrock]

Thanks I will look into these tests and this probiotic.

[PhilC]

Hi,
@redrock wrote:

Sometimes I will go out and run 3 miles and come home looking 6 months pregnant. In fact, I can get bloated after a long walk on an empty stomach. So I’m not convinced it’s food related. This bloating started about 6 months after I started AP and has now reached a critical mass where I must put on clothes 2 sizes too big to accommodate for the bloat that will occur later in the day.

It sounds like you’re saying the bloating comes and goes. In other words, you’re not constantly bloated, just some of the time. Is that correct?

Phil

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

[redrock]

Yes Phil, that is correct. It’s mighty peculiar. It comes and goes.

[PhilC]

Hi,

I did a Google search on the probiotic that you are taking and was surprised at how little information I was able to find. And I was not thrilled with the info that I did find. I recommend that you try some other probiotics. With the money that you are spending on Micro Flora-50, you could buy several different probiotics. That’s the approach I use and recommend. By using diversification, you protect yourself against unknown factors, such as products that aren’t really as potent as the manufacturer claims, occasional quality control failures (which can happen at any company), probiotics that were improperly stored prior to your receiving them, etc. Also, since there are a number of inexpensive probiotics with good reputations, I believe you may find that this approach actually costs less than what you are spending now.

These are some probiotics that I’ve had success with:

Enzymatic Therapy Acidophilus Pearls *
Natrol Probiotic Acidophilus BioBeads
Gr8-Dophilus from Now Foods *
Saccharomyces Boulardii + MOS (Jarrow Formulas brand) *

The probiotics above that are marked with an asterisk are the ones I am currently taking. Initially, I took Saccharomyces Boulardii + MOS every day for one month, but now I only take it once or twice a week. Since Saccharomyces boulardii is a species of “friendly” yeast, it should be resistant to most antibiotics. That’s why I don’t take it every day.

Phil

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

[redrock]

Thanks for this list. I will finish up what I have and try this. I am wondering now whether this is a gut problem at all or if it is a water retention problem. I was at the gym today. There are mirrors everywhere. When I first walked in I thought I looked pretty lean. After about 30 minutes of lifting weights I glanced at myself in the mirror and suddenly looked 4 months pregnant. I would go to a doctor about this but I wouldn’t even know what type of doctor to go to. A sudden water retention/bloating specialist?

[redrock]

While we are on the topic, what do you think about dosage, i.e. if a “normal” person is supposed to take 1 probiotic a day, should a person on long-term antibiotics take 2?

[lynnie_sydney]

If it were me, I’d be taking a closer look at the Tamoxifen as a possible culprit. Given it’s hormonal activity in the body – as a selective estrogen-receptor modulator – I’d think it far more likely to be indicated in things like bloating in the body than a tetracycline antibiotic.

It is listed as a possible side effect (amount of incidence unknown)
http://www.drugs.com/sfx/tamoxifen-side-effects.html

and bloating is discussed on some medical forums.
http://www.medhelp.org/posts/Breast-Cancer/abdominal-bloating-on-tamoxifen/show/681892

If it were me, I’d be having a chat to my oncologist (or nurse practitioner there) and have a talk about this – whether and how you can test this out

Be well! Lynnie

Palindromic RA 30 yrs (Chronic Lyme?)
Mino 2003-2008 100mg MWF - can no longer tolerate any tetracyclines
rotating abx protocol now. From Sep 2018 MWF - a.m. Augmentin Duo 440mg + 150mg Biaxsig (roxithromycin). p.m. Cefaclor (375mg) + Klacid 125mg + LDN 3mg + Annual Clindy IV's
Diet: no gluten, dairy, sulphites, low salicylates
Supps: 600mg N-AC BID, 1000mg Vit C, P5P 40mg, zinc picolinate 60mg, Lithium orotate 20mg, Magnesium Oil, Bio-identical hormones (DHEA + Prog + Estrog)

[PhilC]

@redrock wrote:

While we are on the topic, what do you think about dosage, i.e. if a “normal” person is supposed to take 1 probiotic a day, should a person on long-term antibiotics take 2?

Yes, that seems reasonable to me. It’s another reason why I take more than one probiotic.

Phil

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

[redrock]

@Lynnie, you may be correct, however Tamoxifen is a must for me at this point. I think my onco wants to switch me to Arimidex in a few months and I wonder what will happen with that.

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