Burning Feeling in my Head

[snglbear24]

Hi all. I am two months into AP and just recently my head is burning. Like a icy hot feeling. I did just switch brands of mino a couple of weeks ago and I am rotating doxy/mino. I just wondered why the antibiotic would cause burning because I can’t find anything about in on the internet or on this site. Thank you for any advice you could give. Thank you.

Diffused Scleroderma/SLE Overlap
Minocycline June 2016 2 x 100 daily
Culturelle Probiotic 2 x daily
Tumeric 400 mg 3 x daily

[PhilC]

Hi Stacy,

Rather than mix antibiotics, you might want to try taking only doxycycline for at least a week or two to see if that makes a difference. Dr.S. did suggest that you switch from mino to doxy, so I think you owe it to yourself to at least try that for a little while.

Phil

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

[Wendy]

My beginning AP was April 30th after being in remission since January using cellcept for 9 mos. following a flare. I have burning in my feet and stinging sensations moving all over body at any given time. Major Stiffness and tightness in muscles and joints w/ Systemic Scleroderma…..pain always. I would also like to know if a change in brand of minocycline creates side effects. Body is so sensitive to drugs, I am still lightheaded or dizzy for a couple of hours following minocycline pill.

Pulsed dosage 50 mg 4 days a week. Also take 1 500 mg. Valtrex to avoid another round of Zoster Herpes in eye.
Tumeric capsules 230 mg 2x a day
probiotic drink …Synergy Kombucha daily
3 1/2 Tylenol in 24 hr. To take edge off pain.
Levothyroxine for Hypothyroid since 1994…100mcg 1x a day

Thanks to all…first time writing on this site.

Systemic Scleroderma, Raynauds, Shingles 3x in right eye
Diagnosed June 2011 on cellcept Nov. 2011 to 1st remission July 2013, relapse March 2015..cellcept to December 2015... 2nd relapse April 2016...due to possible rare side effect of cellcept..a rare corneal ulcer developed in R eye thus began minocycline May 1, 2016. Mino doseage 100mg PM, 50mg.AM daily, Levoxothyroxine 100mcg 1x a day,Tumeric capsule 450+mg 1x daily, Valium 2 1/2 mg.1x PM, magnesium 200mg 1x daily, Valtrex 500 mg.1x a day,probiotic,

[lynnie_sydney]

Hi Wendy
Glad you made it onto the forum 🙂 Yes your post made it through – first posts from new users are moderated (as a spam preventive) which is why they can take some time to show up on the board.

I’m sure some SD people will chime in here. In the meantime, you may like to click on this link, which is to a recent discussion about Minocin and various minocycline generics.

https://www.roadback.org/forums/topic/minocin-no-longer-available-it-seems/

If you want to start a discussion of your own, just scroll down the first page of General Discussion, where all the topics are listed, to where it says Create New Topic. Put your topic title into the title box, then in the box below the menu bar (below the various icons), type your message. The space will turn grey once you click into it.

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)

[snglbear24]

Hi Phil. When Dr S gave me the doxy he said I should try to get back on Mino ASAP so I am trying to work up to that. I think I could handle the Mino now at least MWF but am worried about my Lupas marker increasing.

Diffused Scleroderma/SLE Overlap
Minocycline June 2016 2 x 100 daily
Culturelle Probiotic 2 x daily
Tumeric 400 mg 3 x daily

[Wendy]

Thanks so much, Lynnie. I had previously read about the brands, have been told Teva is back ordered yet again ….so have been on Activis, supposedly the Watson brand when Watson was bought out by Activis. At a refill last month was given the Ranbaxy brand and was nauseous w/in 15 min of 1 pill….pharmacy quickly responded and restored the A. brand for me the next day. So if and when Teva is available would the body have that rapid a reaction change one generic to another good generic?
Tis the pain so tough to bear…raising arm to try to reach 3rd shelf of pantry, skin so tight feels like it is going to tear. I am seeing a PT who specializes in myofascia release and another PT working on keeping joints. Almost have tendinitis in left ankle due to muscle & soft tissue tightness…
Thanks so much for all your help.
Hoping Richie reads this since he has had scleroderma for a length of time.

Systemic Scleroderma, Raynauds, Shingles 3x in right eye
Diagnosed June 2011 on cellcept Nov. 2011 to 1st remission July 2013, relapse March 2015..cellcept to December 2015... 2nd relapse April 2016...due to possible rare side effect of cellcept..a rare corneal ulcer developed in R eye thus began minocycline May 1, 2016. Mino doseage 100mg PM, 50mg.AM daily, Levoxothyroxine 100mcg 1x a day,Tumeric capsule 450+mg 1x daily, Valium 2 1/2 mg.1x PM, magnesium 200mg 1x daily, Valtrex 500 mg.1x a day,probiotic,

[Calida]

snglbear24 wrote:

Hi Phil. When Dr S gave me the doxy he said I should try to get back on Mino ASAP so I am trying to work up to that. I think I could handle the Mino now at least MWF but am worried about my Lupas marker increasing.

Try not to worry about the lupus labs, you’ll only drive yourself nuts. You have lupus as a diagnosis already and the labs will fluctuate as you bomb the little buggers.

Lynne posted a great link earlier that might help you understand and accept the process in a way that makes sense. Using an antibiotic protocol means you’re going to uncover different levels of infection within different areas of your body. Some herxing symptoms will feel familiar as they are an exacerbation of your earlier disease symptoms while other herxing symptoms will feel new. They’re not new, they were infection sites that hadn’t manifested in symptoms that you noticed or they were so minor you weren’t affected until the microbes in that area were hit hard.

Here’s the link from Lynne:
https://chronicillnessrecovery.org/index.php?option=com_content&view=article&id=161

Dx: Diffuse Systemic Sclerosis/SLE overlap, Raynaud's June 2013, Lyme August 2013
AP: Azithromycin (Teva) 250mg BID, May 2014, Clindamycin 600mg every 8 hours for 2 weeks July 27, 2015 - Aug 10, 2015
Minocycline (Teva generic) 100mg BID November 20, 2014
Meds: LDN 3.5 mg, Prednisone 5 mg (discontinued), Aspirin 81mg, Liposomal Artimisinin 50mg QID x 3 weeks, 4th week off, rotating (discontinued May 2015, restarted 2016 7 days per month), Daily Nystatin, 2 tabs BID, as a preventative measure
Supplements

[Calida]

Wendy wrote:

My beginning AP was April 30th after being in remission since January using cellcept for 9 mos. following a flare. I have burning in my feet and stinging sensations moving all over body at any given time. Major Stiffness and tightness in muscles and joints w/ Systemic Scleroderma…..pain always. I would also like to know if a change in brand of minocycline creates side effects. Body is so sensitive to drugs, I am still lightheaded or dizzy for a couple of hours following minocycline pill.

Hi Wendy, welcome to the forum! 🙂
The bad news is every time I’m forced to change generics, I Herx anew at about the 3 week point, sometimes sooner. Minocin (brand) is the optimal choice but unavailable to most. Many here find a suitable generic that works for them as I did with Teva which, as you know, is currently unavailable. I had the same reaction as you to Ranbaxy and I’m now using Watson/Actavis.
The good news is, a decent generic will still bring you to remission. It’s a bumpier ride as we try brand after brand but the results will be the same.

Dx: Diffuse Systemic Sclerosis/SLE overlap, Raynaud's June 2013, Lyme August 2013
AP: Azithromycin (Teva) 250mg BID, May 2014, Clindamycin 600mg every 8 hours for 2 weeks July 27, 2015 - Aug 10, 2015
Minocycline (Teva generic) 100mg BID November 20, 2014
Meds: LDN 3.5 mg, Prednisone 5 mg (discontinued), Aspirin 81mg, Liposomal Artimisinin 50mg QID x 3 weeks, 4th week off, rotating (discontinued May 2015, restarted 2016 7 days per month), Daily Nystatin, 2 tabs BID, as a preventative measure
Supplements

[snglbear24]

Hi Wendy. Every time I switch antibiotics I Herx. Mine starts around day 3 or 4 and can last for months. It’s been a very bumpy ride for me. It has gotten somewhat better but something is always popping up that causes me to panic. I am just that type of person. Wendy what is your diagnosis?

Diffused Scleroderma/SLE Overlap
Minocycline June 2016 2 x 100 daily
Culturelle Probiotic 2 x daily
Tumeric 400 mg 3 x daily

[Wendy]

Hi Calida, thank you for your words! The article on chronic disease & herxing was excellent though understand only a bit of it. My rheum. Firmly believes in immunosuppressant therapy and am thankful he offered the minocycline for the tightness…though it has increased greatly since my April appt. I have an appt.,Monday and am hopeful,he will permit me to move forward with additional dosage of mino. though do not look forward to more dizziness and other symptoms popping out. Would like to feel some quality of life! Am certain a round of lab work will take place and would be surprised if this time all was perfectly normal. Thankfully since (diagnosis in June 2012) 2013 heart and lung involvement has been completely clear. Dr. Shanahan’s credentials are years of research at Duke and major work in Scleroderma trials before going into private practice.
My supplements are minimal since a PB 15- 35 reaction of constipation for almost 2 weeks. I am unfamiliar with many meds participants take.
Thanks for reading?

Systemic Scleroderma, Raynauds, Shingles 3x in right eye
Diagnosed June 2011 on cellcept Nov. 2011 to 1st remission July 2013, relapse March 2015..cellcept to December 2015... 2nd relapse April 2016...due to possible rare side effect of cellcept..a rare corneal ulcer developed in R eye thus began minocycline May 1, 2016. Mino doseage 100mg PM, 50mg.AM daily, Levoxothyroxine 100mcg 1x a day,Tumeric capsule 450+mg 1x daily, Valium 2 1/2 mg.1x PM, magnesium 200mg 1x daily, Valtrex 500 mg.1x a day,probiotic,

[Wendy]

Hi there,
Thanks for asking….diagnosis is systemic scleroderma June 2012…began cellcept November 2012 to remission July 2014….flare March 2015, cellcept to Feb.2016. Last flare my body would not tolerate max dosage…only minimal.
Have had some complications with an eye due to,low immunity. Too much to write now…hands throb..
What is your overlap with scleroderma?
Wendy

Systemic Scleroderma, Raynauds, Shingles 3x in right eye
Diagnosed June 2011 on cellcept Nov. 2011 to 1st remission July 2013, relapse March 2015..cellcept to December 2015... 2nd relapse April 2016...due to possible rare side effect of cellcept..a rare corneal ulcer developed in R eye thus began minocycline May 1, 2016. Mino doseage 100mg PM, 50mg.AM daily, Levoxothyroxine 100mcg 1x a day,Tumeric capsule 450+mg 1x daily, Valium 2 1/2 mg.1x PM, magnesium 200mg 1x daily, Valtrex 500 mg.1x a day,probiotic,

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