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Dr. Bob is Robert Hsiung, MD,
bob@dr-bob.orgShown: posts 1 to 12 of 12. This is the beginning of the thread.
Posted by Brot on January 16, 2014, at 8:38:48
maybe i have some kind of infection in my head. i want to give an antibiotic a try.
some month ago i went on amoxicillin because of an post surgery infection in my mouth. one wiered effect was that i felt much fitter. mentally and physically. generylly said i feel physically sick somehow. official diagnosis is shizoaffective.
minocycline made me feel unwell. unpleasently stimulated and so on. i guess that was the effect on glutamate.. took it for a week.
one strange observation was when i tried dimethylfumarate... a multiple sclerosis drug, thought to reduce inflammation in the brain and dampen an overactive immune system. but, after a week or so i fell totally ill... infection went out of hand maybe?
one strange thing also is that i respond quite well to naproxene, a nsaid, antiinflammation drug. makes me feel much fiiter in the head... i am now taking it for some months. bad inflammation in my brain because of an infection maybe?so,i am thinking about doxycycline or amoxicillin. any other suggestions?
thanks
Posted by Phillipa on January 16, 2014, at 9:21:08
In reply to which antibiotic to choose?, posted by Brot on January 16, 2014, at 8:38:48
Is doxycycline available again? As the reason was given mino was because doxy wasn't available. Plus it was summer & the interaction with sun isn't pleasant. Funny sometimes Ibuprofen also seems to make me feel slightly better. The one time took 800mg a day for a dental problem I felt the best I had in years. I'd forgotten about this? Having said all that with docs cutting down on prescribing antibiotics how will you get a script? Phillipa
Posted by bleauberry on January 16, 2014, at 15:19:07
In reply to which antibiotic to choose?, posted by Brot on January 16, 2014, at 8:38:48
Longtime lymie here so I know a bit about antibiotics and the symptoms you described.
What you described looks so familiar. If you are suspecting inflammation, that looks accurate to me. If you are suspecting a mystery chronic infection, that looks accurate to me. Tell-tale clues are in your post.
Most likely is lyme. Only 1 in 10 is diagnosed. Almost all have psychiatric issues. But, there are a handful of other bacterial suspects, mold suspects, and viral suspects. Just from personal journey experience and observation, it is probably bacterial and if so, lyme. But there is no way I or anyone could know that. We have to look at the entire clinical picture and see if it is consistent with our suspicion or not.
The diagnosis is made more clear with a test of ABX (antibiotics). You already did that. And in your test, you felt better than in a long time, and then you got worse. Right? That pattern is, in my opinion and the MDs who taught it to me and use it themselves, diagnostic. You had the pattern.
When we start an antibiotic, the bugs don't die right away but they are pretty much stunned, slowed down, stopped, going on defense, going into hiding.....their daily activities basically stop and because of that they are not spewing out their usual neurotoxins and all of a sudden you feel better! But....in short time, a few days maybe, they start to die and they do so in massive numbers. That feels bad. Even though it is actually the right direction.
Do you know what a Herxheimer reaction is? You described one that you experienced.
Minocycline did not make you feel unwell. The death it caused did. All the death and toxins in the blood at that time....imagine what happens when those poisons hit your brain receptors and nerves! The anxiety/glutamate stuff you described....that wasn't glutamate. That was Herxheimer.
Mino is so strong, if chronic long term infection is suspected, it sometimes has to be started as low as 25mg every other day for weeks or months until it can be increased! It's actually not that strong in potency, but in its ability to work intracellular. Some of these bugs live inside our cells!
I've been on about a dozen antibiotics. Of the tetracycline family, it was almost always Doxycycline. That's the most common one. It doesn't kill. Only suppresses. That is, until the dose is increased to 400mg. At that dose it does cross the blood brain barrier, but not at lower doses, and it kills. Doses of Doxy less than 400mg are probably not going to get you where you want to go.
Tetracycline, according to the big guns in the lyme world, has the least "plateau" effect and the least "relapse" rate of mino or doxy. While most MDs use Doxy, high up specialists prefer Tetracycline based on clinical observations, and Mino is usually reserved for suspected intracellular infections. It is often too strong to start with. It is easy to find tons of people who had to stop it early. Dose was too high, that's all.
Any "lymie" knows what I am saying here, common knowledge, but to folks outside of that population, it can all appear bizarre and new. Not bizarre and not new.
If you got with Doxy, make it 400mg. The max is usually 200mg. I have been as high as 600mg. I only weigh 124 pounds, so that is proof how relatively safe that one is at high doses. If you want to follow the big guys in the know, then go with Tetra instead.
All that said, one antibiotic is not likely to achieve your goals. Commonly 2 to 3 at the same time are required for several reasons. We don't know what bug we are dealing with and testing is unreliable or unavailable. So we have to assume different angles and approaches.....the results of that tell us more of what we need to know. For example in my own journeys, the response to various antibiotics and the disappearance of a certain set of psychiatric symptoms, all was consistent with Bartonella (a tick co-infection) but not so much borellia the main lyme badguy. We did not know that until after, not before. These creatures are very smart on defense, genius actually, and they can easily evade the mechanism of a single antibiotic. They are not so lucky when attacked from 2 or 3 different angles.
Co-infections require different drugs. For example, another common one is Babesia. From ticks and cats. But it is not a bacteria, it is a parasite similar to the malaria bug. Malaria drugs and herbs are used in lyme disease for that purpose. They are also used for arthritic treatments apart from other effects.
I think you would find a few herbs very helpful. Resveratrol by Paradise Herbs (make sure it is made from Polygonum Cupsidatum not grapes). Too much to write here, but it is a primary herb for anti-microbial and anti-inflammation. Another is Cat's Claw, the Samento version of it works better in my experience. Cholestyramine is a prescription powder to mix in drink intended for lowering cholesterol, but we use it to soak up the toxins. That alone makes you feel a lot better, and throws a monkey wrench into the whole inflammation thing, taking their fuel away from them.
Curcumin is powerfully anti-inflammation. Others such as boswellia, ginger, willow. And plenty of antibacterial antifungal and antiviral herbs. No shortage of choices.
Half my life went to depression and psychiatric. It was actually lyme the whole time, but looked like depression. That's the way it is sometimes. Most of it went away over months as I took antibiotics. The only psych drug I never tried was nardil. None of the others worked, but antibiotics did what they could not. Antibiotics even blew ECT in the weeds by a long shot.
Infection in your head? Could be. Hope something here is of help for you.
Feel free to ask any ABX questions or inflammation questions any time.
Posted by Brot on January 16, 2014, at 16:33:15
In reply to Re: which antibiotic to choose?, posted by bleauberry on January 16, 2014, at 15:19:07
generally said, i highly appreciate your posts here. they are, well, quite inspirational. thank you.
i had numerous tic bites when i was younger. but never got this "ring", but this seems to say very little.
herxheimer due to minocycline. yes, maybe. i dunno... ok, might restart it. or reconsidering it. is minocycline as powerful and has the same broad spectrum agains bacteria like doxycycline? (do you even say that in english? xD )minocycline would also be easier to obtain for long term treatment (bigger package size), well at least here..
Posted by Brot on January 16, 2014, at 17:41:06
In reply to Re: which antibiotic to choose? » bleauberry, posted by Brot on January 16, 2014, at 16:33:15
> generally said, i highly appreciate your posts here. they are, well, quite inspirational. thank you.
>
> i had numerous tic bites when i was younger. but never got this "ring", but this seems to say very little.
> herxheimer due to minocycline. yes, maybe. i dunno... ok, might restart it. or reconsidering it. is minocycline as powerful and has the same broad spectrum agains bacteria like doxycycline? (do you even say that in english? xD )
>
> minocycline would also be easier to obtain for long term treatment (bigger package size), well at least here..something i forgot to mention. i experience some visual disturbace that can be described as flickering or "visual snow" ( http://en.wikipedia.org/wiki/Visual_snow )
its there all day. for many years. and never wents away. somehow it gradually appeared, it didnt happen abruptly.. cant remember when it started.
the eye doctor says all fine.. no multiple sclerosis signs or something like that.
Posted by Phillipa on January 16, 2014, at 21:18:37
In reply to Re: which antibiotic to choose?, posted by Brot on January 16, 2014, at 17:41:06
An MRI of the brain will rule out MS. I had two of them and also clear spinal fluid. So a spinal tap can show if any infection in spinal fluid which goes to the brain. Phillipa
Posted by bleauberry on January 17, 2014, at 6:12:46
In reply to Re: which antibiotic to choose? » bleauberry, posted by Brot on January 16, 2014, at 16:33:15
The "ring" you spoke of happens estimated 40%-60%. Often no ring at all. Sometimes a different kind of rash....lots of red spots, or something that looks like a plain ole simple rash.
What I have learned in my journeys is the this stuff is not diagnosable by blood tests. It is a clinical diagnosis....history and symptoms and ruling out other things.
If we take Mino and give it to some perfectly healthy people, is it going to do that crazy anxiety stuff to them? Not likely. Have I felt that crazy stuff myself? Yes. While anything could happen, the likelihood of your reactions being related to mino itself is very low in my opinion. Everything you felt was infection related. I could be wrong but that's what it "looks" like from an outsider point of view.
The "side effects" and the "allergic reactions" to antibiotics....I have come to believe simply because my eyes have seen over and over...these are usually not actual side effects or allergies, but rather, lots of death happening! Did someone actually think we could kill millions of bugs inside our own bodies and think that would somehow feel good? Body parts, debris, corpses, foreign tissues, enzymes, toxins, poop, pee....all their stuff circulating in our blood stream and brain....that's where the supposed side effects and allergic reactions come from. Not the med. Those reactions simply say, "Good job, you are hitting a bullseye!" MD should determine if there is something more serious going on like a liver problem or something. Routine blood tests for monitoring every few months is good.
True side effects might include constipation, diarrhea, heartburn, gastro symptoms. A good doctor helps, because things can look confusing. What is doing what?
I'm not sure but I think Mino has a broader spectrum than Doxy.
It's a tough game to play. But worse sickness and death is what happens if I don't play. I'm humbly improved, haven't needed psych meds in several years. But to achieve that, I am on 2 or 3 antibiotics pretty much all the time, 2 years now, as well as a handful of herbs and supps specific to inflammation and antimicrobial. Adrenal support and immune support are important in this scenario.
Your history is consistent with Lyme disease. That is, you do recall living in a tick area and you do recall at least one tick bite. Some people have no recollection at all, because the first stage ticks (nymphs) are so small you can hardly see them.
The symptoms, broadly speaking from this reader's point of view, with limited information, generally looks quite consistent with lyme or lyme-like.
I mention the word lyme-like because that was part of my diagnosis and was the first time I became aware that this whole thing isn't as black n white as we would like. There are so many mutations of the lyme bacteria, other bacteria we don't know much about, other bacteria that become harmful when we become weakened, on and on....a moldy house can cause symptoms that look like lyme disease.....often misdiagnosed as Fibro, CFS, psychiatric.
An MD shared this story with. It was from earlier in his career when he didn't know any more about Lyme than is taught by CDC that he noticed his pain/fatigue patients improved significantly with antibiotics. That was a mystery at the time. Why was this happening? This scenario has played out in watchful MD offices all across the country, people got better, people are getting better, and the hidden epidemic is more visible and more understood now. But still cloaked in much mystery. There is so much we don't know. Heck, we can't even get an accurate blood test because there aren't any! But we can send a man to the moon.
The story. Patient had mysterious symptoms of pain and fatigue and slow healing wounds. Patient had never had depression before, but now did have it. No history of ticks. The only event the patient could remember, was swimming in the ocean a few months earlier and got a scratch from a barnacle. With nothing else to go on except intuition guided by experience, the MD hypothesized the possibility it could be some sort of mysterious bacteria and that while it was not Lyme Disease, it looked like Lyme Disease, and thus was "Lyme-like". That is how little we know.
The intuition was correct. Patient was placed on antibiotics. Three months of that and the patient was completely better.
But notice....3 months! MDs usually look at antibiotics in terms of days or weeks but not usually months. In the "lyme-like" world, that was actually pretty fast. Time periods of 9 months to 3 years are not uncommon for longstanding infections. I am at this moment in the 2-3 year range.
I guess my overall point is this. In psychiatric, we are dealing with mystery. We don't really know why the patient feels bad. When a prescription is written, it is basically a guess.
By stepping one foot outside of psychiatric and asking what else can be done, the mystery part remains. The guessing remains. The difference is that the healing potential skyrockets.
imo. patients should do their own research for validation.
> generally said, i highly appreciate your posts here. they are, well, quite inspirational. thank you.
>
> i had numerous tic bites when i was younger. but never got this "ring", but this seems to say very little.
> herxheimer due to minocycline. yes, maybe. i dunno... ok, might restart it. or reconsidering it. is minocycline as powerful and has the same broad spectrum agains bacteria like doxycycline? (do you even say that in english? xD )
>
> minocycline would also be easier to obtain for long term treatment (bigger package size), well at least here..
Posted by Brot on January 17, 2014, at 14:42:11
In reply to Re: which antibiotic to choose? » Brot, posted by Phillipa on January 16, 2014, at 21:18:37
> An MRI of the brain will rule out MS. I had two of them and also clear spinal fluid. So a spinal tap can show if any infection in spinal fluid which goes to the brain. Phillipa
you are right. did CT and MRI some years ago. all fine. spinal fluid never done... doc doesnt want to do that.. he says its a bit risky. but i never really asked/demanded it...
Posted by Phillipa on January 17, 2014, at 18:37:51
In reply to Re: which antibiotic to choose?, posted by Brot on January 17, 2014, at 14:42:11
Brot had it done twice about l0 years ago. It was a piece of cake and didn't even hurt. I also got out of bed for the bathroom as didn't want to wait and didn't get a headache. Phillipa
Posted by baseball55 on January 17, 2014, at 19:39:44
In reply to Re: which antibiotic to choose?, posted by Brot on January 17, 2014, at 14:42:11
> you are right. did CT and MRI some years ago. all fine. spinal fluid never done... doc doesnt want to do that.. he says its a bit risky. but i never really asked/demanded it...
Lumbar punctures are dangerous and used primarily to diagnose infections in the spinal fluid -- like meningitis, encephalitis. MS can't be diagnosed with a spinal tap, nor can tumors, etc
Posted by baseball55 on January 17, 2014, at 19:42:30
In reply to Re: which antibiotic to choose? » Brot, posted by Phillipa on January 17, 2014, at 18:37:51
> Brot had it done twice about l0 years ago. It was a piece of cake and didn't even hurt. I also got out of bed for the bathroom as didn't want to wait and didn't get a headache. Phillipa
I have had, since my early teens, recurrent aseptic meningitis. I have had probably two dozen lumbar punctures over the years. They are painful, can cause persistent back pain and even an experienced doctor can cause damage to the spinal cord.
Why did you have spinal taps? What were they looking for?
Posted by Phillipa on January 17, 2014, at 20:02:13
In reply to Re: which antibiotic to choose?, posted by baseball55 on January 17, 2014, at 19:42:30
I had lyme disease was in the hospital. Together with MRI was able to rule out MS and no lyme in brain or spinal fluid. First lumbar puncture done by the infection control doc himself. Just leaned on a bedside table and he did it didn't feel a thing. Second done during the night in hospital didn't know till was in process that this was the intern's first spinal tap. But he didn't damage me. Phillipa
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