Road Block Dizziness

[whaleharbor]

Ok guys…after a long battle of trying to get to see an AP doc and flying to Boston and getting the RX…I've been dizzy and light headed and drowsy since pill one.  Dr. T has been on 100mg min 2 times per day.

I called him and he said this was very unusual…and rare…but that I should cut down to one a day and see how it goes.

I'm scared that after all of this effort…I won't be able to take it cause I can't tolerate feeling so dizzy.

Argh…feeling so profoundly sad…and lost.

Help.

— whaleharbor

Minocycline 100mg every other day with food...lots of food: Zydus brand. Celecoxib 200mg twice per day: Greenstone brand.

[JeffN]

Cut back and see if you feel better. I think this is not uncommon, cut back and if you feel better build back up. I'm sure someone with more experiece will chime in soon.

[Maz]

Whaleharbor…don't despair! Dizziness is actually a pretty common early side-effect while your body adjusts and should abate with time. I also experienced it along with many others here.

Check out the info on the main website, under Education. Then click on Physician's Packet and Current Protocol. Here's the direct link:

https://www.roadback.org/index.cfm?fuseaction=studies.display&display_id=183

You'll find suggestions for how to alleviate dizziness at this link, under “Side-effects.”

Peace, Maz

[superperroRA]

Cut back on the minocin dose. Many people cannot tolerate 200mg of minocin daily, at first. Build up to it. You should not feel sad. Dr.T has helped you start AP in a good way. What I advise you is not to pin all your hopes on Dr.T. There are other AP doctors, with differing opinions. You can easily switch doctors. Dr.T took you to the first stage. A different doctor might be required to take you to stage 2. Take for example, Cheryl Ferguson and Jessie. They started with Dr.T in Boston, but are currrently seeing Dr.F in Riverside.

[Cheryl F]

Whaleharbor:

I agree with Maz, I have spoken to many patients who experience this, and it does get better.  Everyone I have talked to about this problem said they just had to cut back, and then build up. 

I personally have this problem, but I chickened out!  I took Minocin about a year ago and tried for only three days, and just didn't have the time to be sidelined, so I quit.  (I feel like such a hippocrit!!) 

I have an appointment with an AP doc a week from tomorrow.  I will also fly to see this doctor and go to alot of trouble.  I am more prepared to start, but when it comes down to it, and I have work building up, and am dizzy from the Mino, I am going to need ALOT of support from all of you to stick with it. 

Good luck, try to bak off and build up slowly, and maybe think about taking a day off if you have a really demanding day that just can't be avoided. 

Cheryl Ferguson

 

[whaleharbor]

Thanks everyone…

I think I've cried my eyes out enough…

And gotten enough strength again…from all of you…to go on…

you are truly angels…truly.

most humbly.

— whaleharbor

Minocycline 100mg every other day with food...lots of food: Zydus brand. Celecoxib 200mg twice per day: Greenstone brand.

[marg]

My adult daughter was on this same amount of minocin and became very ill . When she cut back to MWF she was almost immediately much better. She has been taking it for 2 years now with much success for RA and some improvement of SD.

Cut back and give it a bit of time. Good Luck

[lvento27]

Hi
I am new on the board. i am being treated for sd by Dr. T  with 100mg. a day for about 10 weeks. I've had great improvement. The first 2 or 3 weeks I felt very dizzy {a very drunk feeling } but it passed after that so hang in there.

[lynnie_sydney]

Cheryl – I had no idea you had something in this “family” of disease…thought it was only Jess. Or did I not read your post correctly? Lynnie

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)

[Cheryl F]

Lynnie:

No you didn't miss anything, I think I have not posted anything except for maybe once on the old BB.  I have my first appointment with Dr. F in RIverside a week from today.  I have been procrastinating this for a long time, I just don't have time for it!  Enough people here that knew about it hassled me enough, including Dr. F at Jess's appointment, so I am getting started!  At Jess' appointment in March, Dr. F asked if anyone else in the Family had any associated diseases, I said yes, I was DXd with Fibro 10 years ago, it was confirmed by a Rheumy last year.  The Rheumy a year ago did all the tests, I test positive for just about everything, mycos, CMV, H-6, Epstien Barr, and others I cannot remember.  Dr. F asked me, How are you treating this?, I answered I am not, I am ignoring it!  He then went on to say, you know … can give you a high risk for heart disease, I said, yes, I tested positive for that.  Then, also, … can give you a high risk for heart disease, I said, yes, I tested positive for that!  He siad, YOU HAVE TO GET TREATMENT!! And, being that he said this to me in front of Jess, I had little choice!  So I will go next week, and you will likely not see me being the brave soul that my daugther always was.  Squeal, scream, wimper, whine!  But is it time that I get out of this denial and do something about it.  Now that we have an experienced doctor available (even though I have to fly to see him) it makes it easier.  Also, now that I feel that Jess is stable I can have a bit of energy to deal with my own issues.

Cheryl

[lynnie_sydney]

Wow Cheryl – what a thing to have found out and to have been carrying around all this time. I am so glad you have decided to do something about it now. I can imagine that all your attention has (understandably) been on Jess – and now it's time for some self-care. Very important self-care. And a great thing to be modelling to your daughters.

you will likely not see me being the brave soul that my daugther always was.  Squeal, scream, wimper, whine![/size%;”> 

[/color]And re this bit: bring it on (if you need to). And dont think just because you have a pretty impressive title around here that you're not allowed. Wishing you the best for next week. Personally, I think it's the first step of a very exciting journey for you. Lynnie 

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)

[whaleharbor]

I'm responding to this post for posterity…you all have helped me tremendously…so I have to pay it forward too…this is posted so that if someone goes searching in the future and reads this…they know the outcome.

Mine was the original desperate post the started this thread.  I was really bad.  I went off minocycline for about 4 days until I got my “land legs back.”  The dizziness, brain fog, depression and general drunk feeling was quite severe.  Afterwards, I restarted at 100mg at bedtime for a week.  The dizziness was only slight on the first and second day and then went away.  After a week or so I began the second dosage for the dosage that was prescribed to me by Dr. T of 100mg twice daily.  No major dizziness…only slight, slight mental fog, slight depression and it is going away.  Phew.

So for those of you like me that are terrified at the dizziness etc…what they tell you to do…that is to build up slowly and/or back off and restart… at least you now know worked for another person. (Thank you to all of you who helped me through it)  And…more importantly it was worth it because some of the pain is already starting to recede.

I made all of these changes under doctor supervision and approval and suggest that you only do so if your doctor approves and supervises.

— whaleharbor

Minocycline 100mg every other day with food...lots of food: Zydus brand. Celecoxib 200mg twice per day: Greenstone brand.

[Maz]

[user=217]whaleharbor[/user] wrote:

I'm responding to this post for posterity…you all have helped me tremendously…so I have to pay it forward too…this is posted so that if someone goes searching in the future and reads this…they know the outcome.

 

Whaleharbor, you're so thoughtful to think to do this and what an uplifting update! So glad the dizziness resolved for you and thank you for sharing this good news. I'm sure it will help many with the same vertigo question. 🙂  Did you read Joe's news article about mino for stroke victims? It mentions the temporary vertigo symptoms experienced by those who use it for acne and RA in that, saying this is good evidence of the drug making it through the blood/brain barrier.

Peace, Maz

[rebeccaavazian]

Whaleharbor,

I take Minocin on Mon,Wed & Friday 2x on those days and I get dizzy just taking it for 3 days so dont feel bad if you have to cut it down like everyone says you gotta find what works for you.

xoxo

[Nico]

I experienced the dizzy's for about 2 weeks, then it went away, also one of the members told me to drink extra water as it dehydrates you, it worked, good luck, its not a good feelin but mine passed!

Nico

[Author]

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