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Dr. Bob is Robert Hsiung, MD,
bob@dr-bob.orgShown: posts 1 to 25 of 29. This is the beginning of the thread.
Posted by rovers95 on September 8, 2012, at 16:51:32
Hi, having read (and been delighted by) Scott and Emme's rather encouraging results on minocycline I decided to try myself to treat ongoing low mood/apathy.
Unfortunately after two nights taking just 50 and then 100mg I have had to give up (temporarily) due to terrible anxiety, insomnia, nausea and low mood. I have read things regarding a herxeimer reaction to such drugs but it is hard for me to discern (a) does such a thing exist and (b)what is a herx reaction and what are merely side effects.
Thinking of starting again but it is a bit worrying when this kind of thing happens! Please note that my reaction may not be typical (although I have read similar anecdotal cases) I often have bizzare reactions to drugs and have CFS type things going on as well.
Regards
Rover
Posted by Phillipa on September 8, 2012, at 18:07:05
In reply to minocycline...the other side of the coin, posted by rovers95 on September 8, 2012, at 16:51:32
Rover I also was given minocycline for a skin disorder and had to stop after 4 doses at 75mg twice a day. Reason being the horrible headaches & dizziness. Maybe this will help? Phillipa
Posted by jono_in_adelaide on September 8, 2012, at 18:13:48
In reply to Re: minocycline...the other side of the coin » rovers95, posted by Phillipa on September 8, 2012, at 18:07:05
Phillipa - minocycline often causes "benign intercranial hyperttension" which would explain your symptoms
Doxycycline would be just as effective for your rash, whithot having this side effect. Dose 50 - 100mg once a day with food
Hows your rash responding to the topical treatment?
Posted by Phillipa on September 8, 2012, at 18:15:21
In reply to Re: minocycline...the other side of the coin » rovers95, posted by Phillipa on September 8, 2012, at 18:07:05
Heirzheimer reaction. Phillipa
https://chronicillnessrecovery.org/index.php?option=com_content&view=article&id=161
Posted by jono_in_adelaide on September 8, 2012, at 18:17:28
In reply to Re: minocycline...the other side of the coin » rovers95, posted by Phillipa on September 8, 2012, at 18:07:05
Oh, found this for you - hope it helps
http://www.dermnetnz.org/acne/perioral-dermatitis.html
They recomend no creams on the face (moisturiser, sunscreen, steroids etc) except for your topical antibiotic
They also say an oral tetracycline is more effective than topical treatment - ask your doc if you can try doxycycline instead of minocycline
Posted by Emme_v2 on September 8, 2012, at 19:54:30
In reply to minocycline...the other side of the coin, posted by rovers95 on September 8, 2012, at 16:51:32
> Hi, having read (and been delighted by) Scott and Emme's rather encouraging results on minocycline I decided to try myself to treat ongoing low mood/apathy.
>
> Unfortunately after two nights taking just 50 and then 100mg I have had to give up (temporarily) due to terrible anxiety, insomnia, nausea and low mood. I have read things regarding a herxeimer reaction to such drugs but it is hard for me to discern (a) does such a thing exist and (b)what is a herx reaction and what are merely side effects.
>
> Thinking of starting again but it is a bit worrying when this kind of thing happens! Please note that my reaction may not be typical (although I have read similar anecdotal cases) I often have bizzare reactions to drugs and have CFS type things going on as well.
>
> Regards
>
> RoverHi. A Herxheimer reaction, such as what is experienced by Lyme disease sufferers is related to the release of toxins from bacteria killed by the drug. (From what I've seen in people I know, a Herx reaction can be nasty.) Use of minocycline for unipolar and bipolar depression is based on properties other than its antibiotic capabilities.
Do you have reason to think you might be suffering from Lyme disease or some other spirochete? If not, I don't think what you are experiencing is a Herxheimer reaction but probably side effects from the drug.
You might be starting too high. I had terrible anxiety my first couple of days at 100 mg. I dropped down to 25 mg and after a couple of weeks went to 50 mg. So far so good (*very* good). Have you talked to your doctor about this? I assume your doctor prescribed the 100 mg? Does he or she have experience with this drug with other patients?
Good luck.
Posted by Phillipa on September 8, 2012, at 20:51:36
In reply to Re: minocycline...the other side of the coin, posted by jono_in_adelaide on September 8, 2012, at 18:17:28
Jono thanks was told by both dermatologists no doxy during summer when sun cause of photosensitivity. I've taken doxy before and did fine. Maybe it's the autoimmune stuff I have that causes the mino reactions. But both dermatologists said get off. I am using clindomyacin lotion during day and another antibiotic lotion at night. Only thing other that use is sunscreen as told to. Since I did so much googling this looks familiar but will read and refresh. Thanks Phillipa
Posted by Phillipa on September 8, 2012, at 20:56:05
In reply to Re: minocycline...the other side of the coin » rovers95, posted by Emme_v2 on September 8, 2012, at 19:54:30
Emme glad to hear you are still doing well. I'm wondering if they will find it works for bipolar with lamictal? I don't know just wondering. Phillipa
Posted by SLS on September 9, 2012, at 2:44:20
In reply to Re: minocycline...the other side of the coin, posted by jono_in_adelaide on September 8, 2012, at 18:13:48
> Phillipa - minocycline often causes "benign intercranial hyperttension" which would explain your symptoms
Would you happen to know how often?
Thanks.
> Doxycycline would be just as effective for your rash, whithot having this side effect. Dose 50 - 100mg once a day with food
I believe any tetracycline has the potential to cause this side effect. I just don't know the numbers.
- Scott
Posted by jono_in_adelaide on September 9, 2012, at 18:54:31
In reply to Re: minocycline...the other side of the coin » jono_in_adelaide, posted by SLS on September 9, 2012, at 2:44:20
To be honest, no idea how often Scott, but i have read it, and I remember the doctor warnig me about it when I was prescribed it for acne 20 years ago.
It cant cause it that often, or it wouldnt be allowed on the market, but it must be somthing often enough for a doctor to mentionit to the paitent specificaly.
Posted by Phillipa on September 9, 2012, at 21:10:53
In reply to Re: minocycline...the other side of the coin, posted by jono_in_adelaide on September 9, 2012, at 18:54:31
From what I read only monocycline can cross the blood brain barrier hence all the horrific possible side effects. In the past took doxyclyine for lymes and was fine other than sunburn. You will sunburn on it even in a car. The dermatologists don't use it in the summer here they use the minocycline. No transient lupus and the blue color on doxy. I was told tetracyline is so inexpensive now it's not available by a doc. No idea if true or not. Phillipa
Posted by SLS on September 9, 2012, at 21:51:41
In reply to Re: minocycline...the other side of the coin, posted by jono_in_adelaide on September 9, 2012, at 18:54:31
> To be honest, no idea how often Scott, but i have read it, and I remember the doctor warnig me about it when I was prescribed it for acne 20 years ago.
>
> It cant cause it that often, or it wouldnt be allowed on the market, but it must be somthing often enough for a doctor to mentionit to the paitent specificaly.My doctor almost didn't let me try minocycline because he had concerns about its producing intracranial hypertension. I wish I had some numbers to work with.
Thanks for your reply.
- Scott
Posted by jono_in_adelaide on September 9, 2012, at 23:36:26
In reply to Re: minocycline...the other side of the coin » jono_in_adelaide, posted by SLS on September 9, 2012, at 21:51:41
I guess, its like everything, its about risks and benifits..... taking a couple of Advis has a small risk of a gastric bleed. If minocycline (or any other drug) allows you to live a normal life, its worth the small risk associated with it.
If you are unfortunate enough to suffer benign intercranial hypertension, all you have to do is stop te drug.
Posted by SLS on September 10, 2012, at 7:05:37
In reply to Re: minocycline...the other side of the coin, posted by jono_in_adelaide on September 9, 2012, at 23:36:26
> I guess, its like everything, its about risks and benifits..... taking a couple of Advis has a small risk of a gastric bleed. If minocycline (or any other drug) allows you to live a normal life, its worth the small risk associated with it.
>
> If you are unfortunate enough to suffer benign intercranial hypertension, all you have to do is stop te drug.I'm looking out for headaches and double-vision. Do you know any other symptoms I should watch for?
- Scott
Posted by jono_in_adelaide on September 10, 2012, at 18:43:02
In reply to Re: minocycline...the other side of the coin » jono_in_adelaide, posted by SLS on September 10, 2012, at 7:05:37
Persistant headache seesm to be the key symptom, but I'm no expert.
Posted by Phillipa on September 10, 2012, at 20:44:56
In reply to Re: minocycline...the other side of the coin, posted by jono_in_adelaide on September 10, 2012, at 18:43:02
No wonder the dermatologists agreed with me going off it after 4 doses at 75mg had an unrelenting headache. Phillipa
Posted by SLS on September 10, 2012, at 20:57:38
In reply to Re: minocycline...the other side of the coin » jono_in_adelaide, posted by Phillipa on September 10, 2012, at 20:44:56
> No wonder the dermatologists agreed with me going off it after 4 doses at 75mg had an unrelenting headache. Phillipa
So far, I have absolutely no side effects from minocycline. I suppose it produces photosensitivity, but I really haven't spent too much time in the sun. All in all, I find minocycline to be a very clean drug. I am extrememly lucky. This stuff really works (for me).
- Scott
Posted by Phillipa on September 10, 2012, at 21:30:08
In reply to Re: minocycline...the other side of the coin » Phillipa, posted by SLS on September 10, 2012, at 20:57:38
Scott since it seems we have opposite effects to meds not surprised but I'm thrilled for you. Someone suggested cymbalta just today via email. Remember I found babble when you were trialing it? I knew nothing of your med history thought this what most experienced. So any advise appreciated. Sorry to get off the minocycline. Have no other way to contact you. Phillipa
Posted by SLS on September 11, 2012, at 1:54:18
In reply to Re: minocycline...the other side of the coin » SLS, posted by Phillipa on September 10, 2012, at 21:30:08
> Scott since it seems we have opposite effects to meds not surprised but I'm thrilled for you. Someone suggested cymbalta just today via email. Remember I found babble when you were trialing it? I knew nothing of your med history thought this what most experienced. So any advise appreciated. Sorry to get off the minocycline. Have no other way to contact you. Phillipa
As you know, Cymbalta (duloxetine) is a SNRI. It has demonstrated itself to be a legitimate antidepressant with efficacy not much different than Effexor. I was surprised when I responded briefly to Cymbalta. However, I did not care for the fatigue and tiredness it produced. Of course, not everyone will experience the same side effects.
Would you discontinue the Luvox (fluvoxamine) in order to try the Cymbalta? Some people would say that this is necessary to avoid serotonin syndrome. I'm not so sure, though. I often see people combining SRIs. It would certainly be important to familiarize oneself with the symptoms of SS.
Given your history of PTSD-like stuff, you might consider trying prazosin. It certainly produced an antidepressant effect for me. However, it is its ability to treat PTSD anxiety that you might find helpful.
- Scott
Posted by rovers95 on September 11, 2012, at 10:08:10
In reply to Re: minocycline...the other side of the coin » rovers95, posted by Emme_v2 on September 8, 2012, at 19:54:30
> > Hi, having read (and been delighted by) Scott and Emme's rather encouraging results on minocycline I decided to try myself to treat ongoing low mood/apathy.
> >
> > Unfortunately after two nights taking just 50 and then 100mg I have had to give up (temporarily) due to terrible anxiety, insomnia, nausea and low mood. I have read things regarding a herxeimer reaction to such drugs but it is hard for me to discern (a) does such a thing exist and (b)what is a herx reaction and what are merely side effects.
> >
> > Thinking of starting again but it is a bit worrying when this kind of thing happens! Please note that my reaction may not be typical (although I have read similar anecdotal cases) I often have bizzare reactions to drugs and have CFS type things going on as well.
> >
> > Regards
> >
> > Rover
>
> Hi. A Herxheimer reaction, such as what is experienced by Lyme disease sufferers is related to the release of toxins from bacteria killed by the drug. (From what I've seen in people I know, a Herx reaction can be nasty.) Use of minocycline for unipolar and bipolar depression is based on properties other than its antibiotic capabilities.
>
> Do you have reason to think you might be suffering from Lyme disease or some other spirochete? If not, I don't think what you are experiencing is a Herxheimer reaction but probably side effects from the drug.
>
> You might be starting too high. I had terrible anxiety my first couple of days at 100 mg. I dropped down to 25 mg and after a couple of weeks went to 50 mg. So far so good (*very* good). Have you talked to your doctor about this? I assume your doctor prescribed the 100 mg? Does he or she have experience with this drug with other patients?
>
> Good luck.
>
>
>
>Thanks for your reply
I am down at 25mg now, hoping to build to 50mg, still had a poor nights sleep at 25, but I'm hoping this will wear off as often things that negatively effect my sleep have a positive effect on my mood.
How long did it take you to feel better at 25mg? I must note that previously I did poorly on both lamictal and NAC, but riluzole was great for me at the time.
Regards
Rover
Posted by rovers95 on September 11, 2012, at 10:08:53
In reply to Re: minocycline...the other side of the coin » rovers95, posted by Emme_v2 on September 8, 2012, at 19:54:30
> > Hi, having read (and been delighted by) Scott and Emme's rather encouraging results on minocycline I decided to try myself to treat ongoing low mood/apathy.
> >
> > Unfortunately after two nights taking just 50 and then 100mg I have had to give up (temporarily) due to terrible anxiety, insomnia, nausea and low mood. I have read things regarding a herxeimer reaction to such drugs but it is hard for me to discern (a) does such a thing exist and (b)what is a herx reaction and what are merely side effects.
> >
> > Thinking of starting again but it is a bit worrying when this kind of thing happens! Please note that my reaction may not be typical (although I have read similar anecdotal cases) I often have bizzare reactions to drugs and have CFS type things going on as well.
> >
> > Regards
> >
> > Rover
>
> Hi. A Herxheimer reaction, such as what is experienced by Lyme disease sufferers is related to the release of toxins from bacteria killed by the drug. (From what I've seen in people I know, a Herx reaction can be nasty.) Use of minocycline for unipolar and bipolar depression is based on properties other than its antibiotic capabilities.
>
> Do you have reason to think you might be suffering from Lyme disease or some other spirochete? If not, I don't think what you are experiencing is a Herxheimer reaction but probably side effects from the drug.
>
> You might be starting too high. I had terrible anxiety my first couple of days at 100 mg. I dropped down to 25 mg and after a couple of weeks went to 50 mg. So far so good (*very* good). Have you talked to your doctor about this? I assume your doctor prescribed the 100 mg? Does he or she have experience with this drug with other patients?
>
> Good luck.
>
>
>
>Thanks for your reply
I am down at 25mg now, hoping to build to 50mg, still had a poor nights sleep at 25, but I'm hoping this will wear off as often things that negatively effect my sleep have a positive effect on my mood.
How long did it take you to feel better at 25mg? I must note that previously I did poorly on both lamictal and NAC, but riluzole was great for me at the time.
Regards
Rover
Posted by bleauberry on September 11, 2012, at 14:08:02
In reply to minocycline...the other side of the coin, posted by rovers95 on September 8, 2012, at 16:51:32
Well, just 2 nights is a bit early for a herx to kick in. Usually takes 3-4 days, sometimes a week or more. But....what you described is actually a pretty good description of herx's I have had in my lyme wars. Especially the anxiety low mood part. Bingo. I know from my own experiences over the last 3 years dealing with various antibiotics, not just mino, that when the antibiotic is doing what it is supposed to do, my herx's are exactly as you described.
Everyone responds differently and everyone herx's differently, so indeed it can be hard to discern whether it is a herx or side effects.
In your case, and mine, it appears to be a brain herx more than a body herx. Which would indicate a deep seated stealth infection that has penetrated the brain.
Let's assume that to be true just to make a point, whether it is actually true or not. If true, 50mg is WAY TOO HIGH! Not to mention 100mg. OMG! But how could you know? You couldn't. I do. Been there done that. This is stuff I know.
If you want to continue, here's how to do it. Reduce the dose to 25mg. Take it once every 3 days. After a week or two, start taking it every other day. If the bizarre effects return, back off, slow down, stop temporarily if needed. That's how I had to get started, and that's how my Lyme specialist does it with most of his patients. Here's the flip side.....3 months later I can take 400mg a day with no ill effects! Yeah, 400mg. Such is the world of chronic lyme. I started at 12.5mg and it felt like a nuclear bomb with every symptom you listed.
So while it seems just a day or two early for a herx to begin, what you described looks like a brain herx to me. And for sure, the dosing is way too aggressive.
All this is telling you something. There is more going on than just your psych symptoms, and whatever it is that is going on, is probably causing the psych symptoms.
Fortunately we don't need to know exactly what we're dealing with, and many times never do. Is it borrellia? Bartonella? Babesia? One of a half dozen other possibilites? Candida? Virus? We don't know. But we do know, whatever it is, mino hits it. Your reaction proves it. That is highly diagnostic.
Posted by Phillipa on September 11, 2012, at 18:53:34
In reply to Re: minocycline...the other side of the coin » Phillipa, posted by SLS on September 11, 2012, at 1:54:18
Scott I think the prozosin is what a lady across the street takes for PTSD nightmares. Having low blood pressure myself wouldn't this lower it more. I would again try the cymbalta but a lower dose that doc here the second time I tried it was a wack job here. Go to 120mg in 4weeks scared me silly. And the first time took it no side effects. Thanks for responding. And is the mino still working well today? Phillipa
Posted by SLS on September 11, 2012, at 20:24:59
In reply to Re: minocycline...the other side of the coin » SLS, posted by Phillipa on September 11, 2012, at 18:53:34
> Scott I think the prozosin is what a lady across the street takes for PTSD nightmares. Having low blood pressure myself wouldn't this lower it more.
Interestingly, the dizziness that occurs when one first begins taking prazosin lessens over time. It should resolve within a week or two. If prazosin does work but produces intolerable dizziness, you can treat the hypotension with Florinef or Ritalin. Actually, if you combine prazosin with Cymbalta, the Cymbalta might prevent the dizziness by increasing blood pressure. If you take prazosin 2 - 3 times a day, its anxiolytic and antidepressant effects will last all day long.
> And is the mino still working well today?
Yup!
Thanks for asking.
- Scott
Posted by Phillipa on September 11, 2012, at 20:34:05
In reply to Re: minocycline...the other side of the coin » Phillipa, posted by SLS on September 11, 2012, at 20:24:59
Scott thanks and so glad the mino is working so well. Phillipa
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