Antibiotics/minocycline: Any experience with shortness of breath?

Hello,

 

I’ve been reading the CPNi blog for a long time, and thank you to all who’ve posted. You are a generous and dedicated group and I’ve learned (and been heartened and encouraged) from what I’ve read here.

 

My background:

 

I’ve had health challenges many years, most of my life. They got serious in my 40’s and now into my 50’s. I have had intermittent treatment with flagyli (and other anti-fungals) due to allergies, yeast overgrowth and getting a protozoa of some kind in Guatemala 15 years before being diagnosed with it. I always felt better during and after flagyl treatment (it killed at least one of the critters as the night sweats stopped) but the doc at the time was not a Lyme doc, and the herxes were bad, so the tx was intermittent. However, it’s kept me on my feet, (albeit not living the life I know I’m capable of) along with a rigorous low sugar, low carb (most of the time) diet.

 

I am now working with a very good Lyme doc who I didn’t know was a Lyme doc when I first went to her. She has always suspected I had Lyme but I tested negative for it, so she tested and treated me for many other possibilities. In August, 2008, I got leg/arm weakness that was new and scary. An MRI showed no lesions, only a possible TIA. She decided to start me on abxi and I improved. We both take it from my improvement on abxi that Lyme and/or other bacteria are in my central nervous system (CNSi). Also in my brain. Both symptoms have improved with abx but mostly the neurological symptoms (less depression, less anxiety, improved thought, improved “oomph” factor-ability to initiate and take action). The CNS symptoms have improved in some but not all ways. Leg weakness is unusual now and I can walk/work through it, stamina has improved. Joint pain is more pronounced, strength still impaired.

 

My tolerance for abx is not great. When I first went on the abx, I was on 6 weeks on doxyi and another abx (I forget which), then another 5 weeks on cefdinir and flagyl, before I developed diarrhea and had to stop. I then got so I was only on abx for a week and had to stop. However, I’ve gotten better at managing the symptoms (Pepto Bismol tabs at the first hint of diarrhea, very strict on the diet, lots of probiotics) and I’m increasing the time I can now take abx. I was on doxy one month (Sept-09) before diarrhea started breaking through the Pepto Bismol/Imodium.

 

I was off abx for the month of Oct-09, while taking resveratrol and artemisinin, 2 herbs that do seem to work.

 

I started minocycline (100mg-2x/day) 4 days ago, and I was doing well on it, despite some dizziness and a few palpitations, and some discomfort/fullness after eating. This morning after eating, I got gastric upset, imminent diarrhea, heart palpitations (or feeling my heart beat hard against my sternum) along with shortness of breath. I’ve had palpitations before, but never shortness of breath, which did concern me.

 

Has anyone else had shortness of breath w/ minocycline or any other abx? If so, did it abate eventually or did you just stop? Did you reduce the dose and then ramp up? Does anyone have any insights into tolerating abx and or controlling the diarrhea in order to take the drug?

 

Any insights or experience appreciated.

Comments

Sorry to hear about the

Sorry to hear about the shortness of breath.  It can really be frightening.  Early on in the treatment (using Doxycycline rather than Minocycline although the two are in the same family), I got shortness of breath so bad that I ended up in the Emergency room.  Since I travel for work, it even became something of a running joke that I was "touring the nation's emergency rooms".  The CPni Handbook had a section on reactions and remedies that Jeanneroz has already posted a link to (above).  It's really worth reading.

What helped me the most was the anticholesterol medication WelChol.  It binds with toxins in the digestive tract and helps flush them out.  At lot of people on this site use Cholestramide which is a powder that you mix into a drink, but WelChol is in tablet form which I find them easier to take while on the road. 

CAPi for M.S. 8/2007 - 3/2009.  Twentieth pulse metronidazole + INHi completed 3/12/2009.  Intermittent treatment thereafter until 11/20/2009.  

Thank you, hdwit, for the

Thank you, hdwit, for the info on WelChol and Cholestramide. I will look into taking either to mitigate the porphyriai. Thanks also for your symptom experience- it's good to know that what I got was not unusual, given the context.
Diagnosed w/ tick-borne illnesses (babesia, borrelosis, possibly bartonela, CPNi);Tx w/ abxi (Doxyi, Cefdinir, Tindamax, now Minocycline); also flagyli; resveratrol and artemisinin.

Yes, I had major problems

Yes, I had major problems with shortness of breath. Went to the ER countless times and nothing showed up. Lung function tests, X-rays all negative. I used to wake in the middle of the night short of breath for nights on end. Resolved slowly with treatment. Long term Doxyi and minoi worked for me and the shortness of breath resolved after about 6 months on the tetracyclines along with pulsed zithromax. My real progress was made AFTER the addition of Rifampin. I did Rifampin and Zith for 5 months and progress was staggering. Would highly recommend Rifampin when you are a little ways into treatment. Because Resveratrol seems to help you, it's a good indication you could have Bartonella, in which case the Rifampin would be very helpful. Be well, Chris
CAPi since 11/06 for Cpni, Lyme, Bartonella, Babesia, Myco P, CMV, HHV-6 infectionsi. Rifampin 600mg daily, Zithromax 500mg daily. NACi 2250mg daily. All other supplementsi. Now Bicillin LA 2.4 mil injection weekly.

Welcome here!Shortness of

Welcome here!

Shortness of breath is a typical sign of porphyriai. A lot to read in handbook about it and how to treat it. I find gluccose and carrotjuice helpfull.

Best Wishes, Maria

 

Cpni since sep 2006. Autoimmune thyroid,hypofunction.levaxin,b12+folic acidi.All classic cpn,porphyriai and toxinsymtoms.Not able to work.Selftreating cpninfection with AllicinMax(garlic), NACi, high vitamin D3. CAPi for over 3 years. Back to work and life

Thanks, Maria, and I will be

Thanks, Maria, and I will be reviewing the info on porphyriai. I thanked JeanneRoz for reminding me of it. I'd read it some time ago, but it's time for me to re-read it.
Diagnosed w/ tick-borne illnesses (babesia, borrelosis, possibly bartonela, CPNi);Tx w/ abxi (Doxyi, Cefdinir, Tindamax, now Minocycline); also flagyli; resveratrol and artemisinin.

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Diagnosed w/ tick-borne illnesses (babesia, borrelosis, possibly bartonela, CPNi);Tx w/ abxi (Doxyi, Cefdinir, Tindamax, now Minocycline); also flagyli; resveratrol and artemisinin.

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Diagnosed w/ tick-borne illnesses (babesia, borrelosis, possibly bartonela, CPNi);Tx w/ abxi (Doxyi, Cefdinir, Tindamax, now Minocycline); also flagyli; resveratrol and artemisinin.

comment deleted

comment deleted

Diagnosed w/ tick-borne illnesses (babesia, borrelosis, possibly bartonela, CPNi);Tx w/ abxi (Doxyi, Cefdinir, Tindamax, now Minocycline); also flagyli; resveratrol and artemisinin.

comment deleted

comment deleted
Diagnosed w/ tick-borne illnesses (babesia, borrelosis, possibly bartonela, CPNi);Tx w/ abxi (Doxyi, Cefdinir, Tindamax, now Minocycline); also flagyli; resveratrol and artemisinin.

Thank you, Mycoplasma1, for

Thank you, Mycoplasma1, for all your information, which is informative and helpful. Thank you (and JeanneRoz) for "blazing the trail" ahead as regards sticking it out with an abxi that was helpful but giving you a major reaction. I appreciate the good news on Rifampin, too, as my doc has asked me to take it along with the minocycline. I delayed it (with her OK) so I could keep my reactions to the different drugs separate. But your email helps me gird my loins for the next "phase" of my journey back to wellness. With your and JeanneRoz's respective experience with abxi, it gives me the context to not get fearful and give up, but to wrestle with the abx I must take, to see if I can stay on it/them. It's not a straight shot up, this achieving wellness. I wish you a good journey, too.

Diagnosed w/ tick-borne illnesses (babesia, borrelosis, possibly bartonela, CPNi);Tx w/ abxi (Doxyi, Cefdinir, Tindamax, now Minocycline); also flagyli; resveratrol and artemisinin.

Enaxora, there are a few

Enaxora, there are a few here who have had shortness of breath issues....("Mycoplasma1" is one --he also has Lyme).   I had major breathing issues when I added Azithromycin (I had to start by taking 1/2 of a 250 mg tablet, 1X/week).  The shortness of breath stopped when  I was able to tolerate the antibiotic..... (I had to build up my tolerance slowly). 

I'm not sure if many here use(ed) Minocycline.    

Porphyriai is something else that physically happens which can cause many of problems.  There's a reference here you may find helpful called "Reactions and Remedies". (click on the words for the link).

As for the diarrhea, I am going to assume your doctor has checked you for C.Diff? 

Your in the right place.... lot's to read and many helpful, knowledgeable people here on this site!

JeanneRoz 

JeanneRoz ~ DXi'd w/ CPNi 4/2007; 6/07 -"officially" dx'd w/CFIDSi/FM; also: HHV6, EBVi, IBSi-C, 100 Doxyi:BIDi; 500 mg Biaxin BIDi; Tindamax Pulses, B12 shots, ERFA Dessicated Thyroid,Cortef, Iodoral 25 mg, Vit D-6,000 uni

Yes, JeanneRoz, I've been

Yes, JeanneRoz, I've been tested for C.Diff and it's negative so far. Thank you very much for the URL link and the concrete info/experience. It helps a lot to know that breathlessness is a possible symptom of getting used to a new abxi. I also very much appreciate your sharing your protocol on how you got used to it.

Thank you!

Enaxora

Diagnosed w/ tick-borne illnesses (babesia, borrelosis, possibly bartonela, CPNi);Tx w/ abxi (Doxyi, Cefdinir, Tindamax, now Minocycline); also flagyli; resveratrol and artemisinin.

EnaxoraFrom the events that

Enaxora

From the events that happen almost daily here, I suspect that your many symptoms are going to emerge as part of your disease picture.  I have jokingly said that there appears to be a list of a thousand symptoms and we each get to choose ...oh, about a hundred.   I never had your exact ones, but I have certainly had my own list.  After five years, it is getting short.  I think you will have some other perspectives from other people who will see your post.  Best luck.  Sounds like you are on a positive track.

Rica

3/9 Symptoms returning. Began 5 abxi protocol 5/9 Rifampin 600, Amox 1000, Doxyi 200, MWF Azith 250, flagyli 1000 daily. Began Sept 04 PPMSi EDSSi 6.7 Now good days EDSS 1 Mind, like parachute, work only when open. Charlie Chan  In for the duration.

Thank you, Rica, very much

Thank you, Rica, very much for your comment. I know you're a long-time poster with a good deal of information and experience. I agree, I think the number of symptoms is extremely high. It's always interesting to find people who have more than 2 that are the same as one's own. 

 I will keep reading and learning. Thanks for your good wishes.

 Enaxora

Diagnosed w/ tick-borne illnesses (babesia, borrelosis, possibly bartonela, CPNi);Tx w/ abxi (Doxyi, Cefdinir, Tindamax, now Minocycline); also flagyli; resveratrol and artemisinin.