minocin side effects / question for maz

[mary77]

I am hoping to find out about minocin “side effects”. I have a long history (28 years-10yrs no tx or diagnosis) of Lyme disease…a lot of arthritis and heart issues. I’ve been through heavy Lyme IV protocols. Also, low dose, pulsed antibiotics. I prefer the low dose route! Am struggling to get back on minocin after a 5 month break from it but used tetracycline during that time. (250 mgs 3xweek) I now seem to be reacting to this family of meds with severe muscle pain and fatigue. In the past, these meds stabilized my condition and helped over time. I also take clindamycin 150mgs 3xweek and zith 125 mgs every 10 days.
I’m wondering how you felt, Maz, when it was decided you were not tolerating the minocin. Are there blood tests to recognize a problem with mino? I know that serum sickness and mino induced lupus-like symptoms are reported “side effects”. As always, is it a herx or reaction??? Any help would be greatly appreciated!

Thanks!
Mary

[lynnie_sydney]

Mary – I am sure Maz will respond to this when she sees the post. Meantime, she covers the DIL subject extensively in her Personal History thread – second post. Here is the link. viewtopic.php?f=3&t=301Lynnie

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)

[Maz]

@mary77 wrote:

I am hoping to find out about minocin “side effects”. I have a long history (28 years-10yrs no tx or diagnosis) of Lyme disease…a lot of arthritis and heart issues. I’ve been through heavy Lyme IV protocols. Also, low dose, pulsed antibiotics. I prefer the low dose route! Am struggling to get back on minocin after a 5 month break from it but used tetracycline during that time. (250 mgs 3xweek) I now seem to be reacting to this family of meds with severe muscle pain and fatigue. In the past, these meds stabilized my condition and helped over time. I also take clindamycin 150mgs 3xweek and zith 125 mgs every 10 days.
I’m wondering how you felt, Maz, when it was decided you were not tolerating the minocin. Are there blood tests to recognize a problem with mino? I know that serum sickness and mino induced lupus-like symptoms are reported “side effects”. As always, is it a herx or reaction??? Any help would be greatly appreciated!

Hi Mary,

Lynnie – thanks for posting my Progress Thread for Mary….Mary, the details of what I experienced are at the link Lynnie provided, but you’ll have to scroll down the page, because my first post describing my journey with RA/Lyme in the first year of Lyme treatments didn’t translate when we switched forum softwares a couple weeks ago.

I have to re-write that first post, but the pertinent info about DILE (drug-induced lupus erythmatosis) is documented there with all the labs that were used by the immunologist and my LLMD to figure out the problem. DILE is rare with either doxy or tetra, but in some people, minocycline is a bit more hyperallergenic, according to my doc. For some odd reason, too, the only folk I’ve come across that seem to have developed DILE from mino are RAers with Lyme…go figure! Of course, this might just be coincidental, but it is a bit of an odd correlation:

http://www.dermatoblog.com/2007/10/08/risk-of-drug-induced-lupus-associated-with-tetracycline-class-antibiotics/

The trouble with the low dose route for Lyme is that it’s just not enough and is likely more immune-suppressive than anything for Lyme. Usually, chronic Lymies will only revert to low maintenance doses once they’ve reached remission, if they need to hold the remission (relapse is common).

The labs to run for DILE are very standard and any doc can order them for you…the clincher for me was a positive ANA (as I’d been previously negative), along with the anti-histone ABs, which is pretty conclusive for DILE and the single-stranded anti-DNA test (fake lupus marker, if double-stranded anti-DNA is negative, which is the real lupus blood marker).

Mary, hope the link provides the info you need to figure things out for yourself, either way. If you’ve just switched back to minocycline, then (just fellow patient surmise) it’s possible you’re herxing again, because mino does have superior tissue penetration to doxy or tetra and it might just be getting into your tissues a bit more. I hope that’s the case. Alternatively, another consideration to talk with your LLMD about is some coinfection rearing its ugly head again…some folk need several rounds of coinfection treatments. If you do find you’re one of the unlucky schmucks, like me, to get DILE, don’t despair…there are other classes of antibiotics that are effective, too.

Nice to meet you and a warm welcome to you.

[mary77]

Thank you to Lynnie and Maz….this is exactly what I was looking for…I think I need to have the tests run to determine what is happening. Luckily, I have a wonderful LLMD who will help me with this. Strange how those with RA/Lyme seem to be the ones to develop DILE. I have been suspicious for awhile and have found out through experience that I should listen to my “gut’ feelings.

It is very nice to meet both of you. This site is amazing!!

Mary

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