Change in medication

[elaine e]

I posted that this AM

thanks
elaine

[Jeni]

Is it recommended that you change drugs if you are getting blue spots from Minocin??? I just started feeling pretty good after being on Mino exclusively for the last 17 months, but I just noticed blue spots on my lower legs. The doctor was recommending that I should get a biopsy on the one on my lower right leg. Today I noticed that they are forming on my left lower leg as well and I remembered reading something about discoloration and mino therapy here. The reason I’m asking is that I am working with my family doctor in order to get my Minocin and she’s not at all familiar with the treatment, but is very open to helping me. I know that we aren’t supposed to give medical advice here, but my question is for people with antibiotic knowledgeable physicians who have also experienced these blueish spots: Have they recommended a change in drugs if you have the discolorations forming, and do they mention that these spots indicate toxicity from the drug???
My new rheumatologist just rolled her eyes at me about the mino but she is willing to monitor me for worsening of my RA. I’m supposed to go back in November.

I would appreciate any feedback on this subject since I am basically doing this alone.

Thanks so much!

[lynnie_sydney]

Jeni
Maz covers the blue pigmentation issue very well in her post in this thread
viewtopic.php?f=1&t=6504&p=56883&hilit=blue#p56883
You can also search the entire General Discussion by typing in something like “blue” into the search box at the top of the first page.

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)

[Jeni]

Lynnie,

Thanks for the terrific information and all the support. You all are so wonderful and I really appreciate it a lot!

Jeni

[GayG]

Thank you all for your replies……Elaine I didn’t know about the ruby laser so that very good to know! and Pattie, about the hands mine don’t look exactly as normal as they used to before I got sick but you have to look really close to notice anything, if I don’t point it out noone notices since I can make a full fist now…(unless I’m having a reynauds attack and then it’s ntoiceable). I don’t have too much trouble with Reynauds anymore, thank goodness and seem to only have attacks if I go into a cold restraunt OR for some reason, I get one usually in doctors offices!

Cheryl, it’s nice hearing from you ….I was wondering what kind of a herx did Jesse have on Flagyl?….it seems that since I’ve been on the Zith and flagyl that my lower arms feel tighter and my legs tighten up when I walk around…..they are very loose and normal when I wake up but when I walk around a bit I can feel them tighten and I feel some pulling in my upper legs……I got a little concerned and went back to minocin and that went away in a day completely….so that’s why I was wondering what sort of herx that Jesse had….I have a call into Dr. K but they haven’t called me back yet…..Blessings! Gay

[Maz]

@GayG wrote:

Tit seems that since I’ve been on the Zith and flagyl that my lower arms feel tighter and my legs tighten up when I walk around…..they are very loose and normal when I wake up but when I walk around a bit I can feel them tighten and I feel some pulling in my upper legs……I got a little concerned and went back to minocin and that went away in a day completely….so that’s why I was wondering what sort of herx that Jesse had….I have a call into Dr. K but they haven’t called me back yet.

Hi Gay,

Lovely to see you again and good to hear life is treating you well! 🙂

It’s possible to take a tetra along with Flagyl and Zith together….in fact, it’s the same as the Wheldon protocol for c. pneumoniae (though not sure what your doses are?):

http://www.cpnhelp.org/treatment_protocols

With SD, I wouldn’t come off a tetracycline, just for its amazing immune-modulating properties. Most SDers will remain on at least a maintenance dose of a tetracycline for life, as it’s not worth risking relapse. If mino is causing a prob with hyperpigmentation and, as you’re so near to a remissive state, would ask Dr. K. if you could just switch the mino to doxy for a while till this resolves and you could then stick with the flagyl and zith as add-ons, which sound like they are hitting something in your mix. Not a bad thing…just not fun going through herxing.

The thing about coinfections (like protozoans) or bacterial pleomorphisms (bacteria that shape-shift from cell-walled, to L-form, to cyst) is that if they aren’t addressed at some point, then they might gain a foothold later, leaving one scratching one’s head and wondering if the mino is no longer working. So it’s not a bad thing to use some therapeutic probes like Dr. K is doing to see what else might be going on at some point in the journey.

Interestingly, these abx are also used in Lyme protocols and H Pylori has also been tied to SD, which is a similar spirochete.

This trio (mino/doxy, zith and flagyl) is a pretty comprehensive abx protocol to be on as it hits so many potentials in one’s pathogen load, but need to be really cautious about candida and herxing is not uncommon. 😉

Hope you can figure things out okay with Dr. K., Gay. 🙂

[GayG]

thank you Maz…and I was just starting to think the same thing…that maybe i shouldn’t get off of a tetracycline drug all together since it just took one day of mino to stop the tightening in my legs after being on Zith and Flagyl for about a week or so….and also I woke up one morning after I had been on Zith and flagyl and the top of my hands were also more swollen…thats gone now too after a couple doses of Mino…..I’ve got a call into Dr. K and I’m going to definitly ask if I can take Doxicyline instead and/or add it to the regimen I’m already on….will let you know what she says…..THANK YOU!…..I feel bad that I stopped posting as much as I used to ….life just took off and I got involved in the support group here (a very long story but i’m not involved with the support group any more) …Long story short they are not open to antibiotic therapy at all ….they say they are and that we all have a choice but if you speak up you get shot down quickly in very rude ways…so I decided to go where people really want help instead of beating my head against the wall with that situatio…..so I’ll be posting here more often…..I did get a call from a very nice young man the other day who saw my post and we talked for two hours…I hope I was encouraging and helpful…..I understood every single fear he had……I just now got through to the nurse at Dr. K’s office…she will ask the dr about it and call me back….will post again…thank you! Gay

[lynnie_sydney]

It will be lovely to have you back Gay. And I think you’re wise not to hang around where people dont want to know about AP. Better to help those who at least express an interest – more uplifting and productive for everyone. We are all entitled to our opinions and particular paradigms but changing deeply held views can be exhausting and often fruitless. There are people on this site who will love to have the benefit of your wisdom and experience.

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]

I second Lynnie…we loved having you here before and your bright lovely spirit is always welcome! So glad you are back and can share your success with those just starting out. 🙂 Gosh, those early days were something, eh, Gay? I’ll never forget what you went through. When you turned that corner, though, the miracles just kept coming and your story has been such a blessing to us all.

[GayG]

Thank you both!…and yes I remember those days vividly and Thank God daily for my recovery……I just don’t know what I would have done if I hadn’t discovered this site (that I truly feel God led me to)……..the recovery period was long (about a year for the worst part of it) and I had many terrible symptoms and had to have care to help with just dressing, and sometimes undressing (since the fatigue was really bad at that time)…..couldn’t even tie my own shoes and the pain was relentless!…..the help I got here to just help me deal with the symptoms on the way to recovery was something I’ll never forget…..

[nspiker]

Hi Gay,

What perfect timing! It’s wonderful to have you back, as you have such great insight and a wonderful story to share. When I read you post about how adding the MInocin back in resolved your skin tightness, it reminded me that I can’t give up on AP for my MIL…..

I was hoping to ask a favor of you. As you know, my MIL lives in Houston and has gone the traditional route with her SD. It’s been almost a year, and she is no better 😯 . The main reason she is not on minocin, is because these “big name ” rheumatologists” all say antibiotics are far worse then their proposed treatment 🙄 . One of her doctors is an associate of Dr. M., who I know is your doctor too.

My SIL works at Baylor and is a big believer in the “Medical Center and all the “Big” names in medicine”. She believes in scientific studies, and fact-based evidence. Since none of these docs support AP, and in fact go on tirades warning against it, she is reluctant to recommend AP for her mom. My MIL has read the books on AP, and is looking for answers. I was thinking that since you see Dr. M., and have had such an amazing reversal of symptoms and success with AP, that you might be willing to share your experience with my SIL. I told my SIL about your story, and she was very interested in speaking to you. At this point, my SIL feels she wouldn’t be able to live with herself if she didn’t entertain alternative ideas.

Thanks for everything….
nancy

[GayG]

Sure, i would love to talk with her….send me an email to gayg@charter.net and I’ll send you my cell phone number….

[nspiker]

Thanks Gay! I’ll send you an e-mail…
nancy

[GayG]

I have an update….after stopping the Minocin and just a few weeks on Azithromycin and Flagyl I noticed that my lower arms were starting to feel tighter and in the morning my legs would be perfectly normal but the more walking I did the tighter they felt, especially if I walked a lot…then one morning the tops of my hands were more swollen, SO I started to worry a bit about that and stopped that medication and took a normal doses of Minocin (100 mg. twice a day) and after one day those skin effects went away completely. SO I called Dr. K in Lufkin who put me on Doxicycline 100 mg. twice a day instead and that seems to be working just fine so far….I don’t know if that was a herx reaction (since the only herx experience I’ve had is extreme elevation in pain when I took IV Clindaymcin when I was really sick)…..so I’m not sure what all herx reactions may be like..but I didn’t want to take any chances….it’s very surprising to me that I started having those sensations only after a few weeks after strarting those new antibiotics…anyway the Doxy seems to be working better, so far so good…!

[GayG]

so far so good, have changed to Doxicycline 100 mg twice a day and flagyl 250 mg every other day and things seem to be holding just fine…..had a bit of a flare with tightening and pulling in my lower arms and lower legs after about two weeks on Azythromycin and Flagy but this new regmin is working much better……the ringing in the ears is MUCH better too, now just waiting for the blue spots and darkening to go away!…..Gay

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