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Dr. Bob is Robert Hsiung, MD,
[email protected]Shown: posts 1 to 20 of 20. This is the beginning of the thread.
Posted by bleauberry on January 23, 2019, at 9:12:42
Right now I am suffering bad from what looks like Parkinsons shakes and tremors, paranoid Schizophrenia, depression with panic attacks, stage fright and nervousness. It's terrifying.
I saw two doctors and they both agreed on Bartonelliosis. Which is a common secondary infection from ticks, cats and fleas.
I asked both doctors, "If you knew for a fact that I do NOT have Bartonella, what would be your next suspicion?" There was silence. A virus can cause some of it, for example, the red spots on my torso and generalized weakness. But there is only one thing that causes that sort of "racing anxiety" and certain doctors recognize immediately. 95 out of 100 don't recognize the pattern or the clues. (personal estimate)
So I pondered. I know from experience because I have been here before, that 2 or 3 well chosen antibiotics will calm all of those symptoms down in a matter of days, and that the entire spectrum of symptoms will be gone or mostly gone in a few more months of treatment. Bartonella is a very virulent thing once it gets hold. And there really isn't any proven scientific way to kill it. Each new patient is an experiment.
Bartonella is susceptible to Doxycyline + Rifampin combo, a few other combos, and Cipro, Levaquin. I will likely have one or some of those in my cocktail when I see the doc again this Friday. They say new patients are cleared of bartonella anxiety/depression in about 3 months with antibiotics.
If you have a cat, ever had a cat, or exposure to ticks or fleas, and you have difficult psychiatric symptoms, then you HAVE to consider Bartonella or other similar pathogenic microbes as the actual cause of ALL your troubles. These things fill your body with toxicity and inflammation, not good for the mood center! Lots of short circuiting going on.
I wondered what would happen if I had gone to a psychiatrist instead of an L.L.M.D.? My guess is Lorazepam for the Parkinson's-like stuff and generalized racing anxiety, L-Dopa for the likely misdiagnosed Parkinsons, SSRI for longer term dampening, probably Zyprexa or Seroquel, and likely a mood stabilizer of some kind.
And you know as I do, that if I did all that, I would still be a sick puppy with no hope of getting better.
Some of those would be helpful for the immediate acute phase. For example, while I wait for antibiotics, I would love a BENZO! So I am doing Passion flower, Lemon Balm, Skullcap, and they are cutting the edge making it all more bearable. But I could really use a Xanax about now! :-)
I'm just sharing my story here in real time as it unfolds because I hope others will have their minds opened by it.
Posted by bleauberry on January 23, 2019, at 9:44:11
In reply to Full Blown Relapse, posted by bleauberry on January 23, 2019, at 9:12:42
I just wanted to add that my Bartonella lab test was negative. Which is common. Our testing really sucks pretty bad. It's embarrassing actually. You would think if we could put a man on the moon we could test somebody's blood accurately, right?
Apparently there are different strains of Bartonella. As is the case with other pathogens such as Borellia and Babesia, our lab tests only cover 1 or a few of the many strains out there. And the entire science is flawed because they are looking for antibodies, which is something the lyme bacteria generally turn OFF so you aren't going to have any antibodies.
Hint: If you ever wanted to get tested for Lyme and wanted to do everything possible to make it as accurate as technology allows, then you want to take an antibiotic for a couple weeks, stop it, wait a week, and THEN take the test. The antibiotic caused pathogen deaths which then allowed the immune system to "see" them and form antibodies. There is only one good lab - IGenex. Your lab test money is likely wasted with any other lab out there. Lab Corp is said to be ok but not as good. My first Western Blot test came from Stonybrook Labs, which is second best to IGenex. In that test I had evidence of 5 pathogens. Only 2 of them belonged to the 5 the CDC requires to call it Lyme.
One of those proteins they found was from the "flagella of borellia". Well, borellia is the Lyme organism. I have evidence of the tail but not the body? I share this with you to demonstrate that even with the best testing out there, it can be screwed up. I think that since I had the tail inside of me, it is safe to assume that a body was attached at some point. Yeah?
Very, very, very, very, super important to get a good diagnosis so you know what you are dealing with. If a doc says you have depression, that is NOT a diagnosis. That is a merely a description of your symptoms.
So then they look for thyroid maybe, a blood test, maybe test for virus or whatever. And they come back and say you have low thyroid. Well, again, that is NOT the diagnosis. That is the symptom not the actual problem. If you know me, then you know I will claim that it is pathogenic microbial insult, and the resulting inflammation and toxicity, which messes everything up and destroys the brain's ability to operate the mood center efficiently. It's so screwed up that it can't work with psych drugs either. And we are all evidence of that.
Anyway, again, just sharing info in real time hoping it might open doors for somebody else who is struggling hard. Keep in mind these are my opinions, my beliefs, my perspectives, based on my experience and study, and may be different than somebody else's.
Posted by linkadge on January 23, 2019, at 15:19:23
In reply to Full Blown Relapse, posted by bleauberry on January 23, 2019, at 9:12:42
Dude. Constant antibiotics ain't doing sh*t.
Linkadge
Posted by Phillipa on January 23, 2019, at 17:09:44
In reply to Re: Full Blown Relapse, posted by linkadge on January 23, 2019, at 15:19:23
Just making one resistant to antibiotics if really need them. What then?
Posted by Jeroen on January 23, 2019, at 17:32:20
In reply to Full Blown Relapse, posted by bleauberry on January 23, 2019, at 9:12:42
2 months on Saphris guess what, depression is back only got a few days better, positive symptoms are treated but my deep dark depression that as lifted with minocycline and Cipro ear drops (now resistant to the ear drop form) not tried pills which was kind of odd
d.. 2 days on cipro (Panotile) ear drops and psychosis gone... but then after retry full blow mania and psychosis this happened years ago not now..Im infected with a lyme or something im 100% sure now
please tell me how to proceed i believe you and my first alysia lyme test was positive, i dont respond to doxycycline but also doesnt make me worse a little better on 200 mg, but minocycline cured my schizophrenia and depression, if i only could take it safe i would do it again or another anti biotic. Please i know youre in very bad shape bleauberry but Id like to be well even if its for a few months from this horrible disease. Please help me bleauberry!
Posted by bleauberry on January 24, 2019, at 7:42:50
In reply to Re: Full Blown Relapse, posted by linkadge on January 23, 2019, at 15:19:23
Dude, I wasn't on them. That's the problem.
Today, day 3 of restarting, my Parkinson's tremors are almost gone, my depression is 90% gone, and the racing anxiety is 95% gone.
So I have no idea what you are talking about.
> Dude. Constant antibiotics ain't doing sh*t.
>
> Linkadge
Posted by bleauberry on January 24, 2019, at 8:04:35
In reply to Re: Full Blown Relapse, posted by Phillipa on January 23, 2019, at 17:09:44
I remain patient with a certain level of misinformation or ignorance by some posters who embrace wrong narratives. Myths abound.
Maybe it's just my own perception, but I do not sense in some patients a willingness to learn, to have an open mind. Prefer myths.
I'm not going to get into it. Just to say that you could not be more wrong about resistance. If you want a detailed scientific explanation of that, let me know. Otherwise, I aint wasting my time with closed minded skeptics. I will spend endless time with open minds who want to learn and get better.
I will tell you this short story. I was not on antibiotics. I relapsed super bad. Probably worse than anything you've ever experienced, unless you've had Parkinson's, schizophrenia, depression, panic attacks, and a torso covered with red spots all at the same time before. If you have, then you can relate.
I restarted them, the antibiotics,. Today is day 3. The horrible anxiety and depression is 90% gone already. Where is this resistance you talk about? I've taken these same antibiotics multiple times, sometimes for months. No resistance. They save my life. Probably would save a lot of people here too, if not for closed minds.
Let me bust one myth here. Antibiotics DO NOT develop resistance when they are used PROPERLY. What does that mean? It means you NEVER take just one at a time. A second or third one, of a different mechanism, makes it impossible for the germs to develop resistance. They can't adjust to the different mechanisms simultaneously. The biggest mistake American medicine has made in the arena of antibiotics is prescribing them as mono therapy. That is bad and that does lead to resistance.
I'm on Doxy and Rifampin. This combination does not develop resistance even 9 months later. It has already erased an impossible treatment resistant depression in just 3 days.
The thing is, my journey is not at all unusual. There are millions of patients with stories exactly like, or very similar, to mine. I propose that many of them are right here at babble.> Just making one resistant to antibiotics if really need them. What then?
Posted by bleauberry on January 24, 2019, at 8:27:14
In reply to Bleauberry omg friend i need to tell you something, posted by Jeroen on January 23, 2019, at 17:32:20
Hi Jereon! We know two things for sure. 1.You respond positively to antibiotics (pooping out and herxherimer reactions are a different story). When you start them, you respond immediately. Right? That is so super important to keep in mind. 2.Mysteries abound. Medical science is nowhere near being able to fully explain, diagnose, or treat the things we deal with. It's mostly anecdotal evidence and experimentation that yields good results.
So with that in mind, we don't know you have any of the half dozen Lyme germs. I suspect Bartonella, which can come from cat scratches, cat bites, and fleas, as well as ticks. The reason is because Bartonella is notorious for causing "racing" psychiatric symptoms such as schizophrenia, anxiety and panic attacks. Depression always goes along with that. Where there are psychiatric symptoms with any kind of neurological symptoms, Bartonelliosis HAS to be suspected and treated.
I have full blown Bartonelliosis right now and yet a lab test was negative. Anecdotal and clinical perception works better.
Cipro is excellent for Bartonella. There is no scientific data how to treat Bartonella. There are various antibiotics that have been successful but without consistency - each patient is an experiment.
If you can ever get Rifampin and Doxy (or Mino) at the same time, that combo has a 95% of getting you well in a 9 month period, according to one of the Lyme experts Marty Ross, M.D. That is his experience. He gets about a 85% success rate with other antibiotics, and a 75% success rate with the two herbs Side Acuta and Houttyunia. Rifampin and Doxy is what I am on, day 3, and already feeling way better.
I have seen a repeating pattern with you. That is, when you start, you feel benefits pretty quick. But then it goes haywire and you go crazy. Right? It starts good and then goes bad. Right?
Well, that is in a reliable diagnostic tool that doctors use when they are suspicious but not sure. With that pattern, there is great surety. Much more accurate than labs.
So we know there is something there. Is it Lyme? Bartonella? Something else? My first lyme doctor told me, "We will probably never know the exact germ and it doesn't matter." Again, that brings us back to mysteries, inadequate science, anecdotal successes, and experimentation. The whole approach is basically wide spectrum antimicrobials, and that is made much better with additional anti-inflammation and anti-toxicity strategies added to it.
When you start feeling bad after feeling good, that is a HERXHEIMER REACTION. It is what you feel when the toxins of microbial death hit your brain receptors before getting peed out of your body.
When that happens you can either lower the dose or stop for a couple days and then restart.
Do not expect the good feeling at the beginning of treatment to last. It won't. That good feeling will eventually come back, slowly over time, weeks and months not days, but it requires being on the antibiotics the whole time even when you don't feel like they are doing anything. They are.
Long story made short - you need to be on constant antibiotics for at least 3 months but more likely 9 months minimum. So try not to judge things on a day by day basis, or even a week by week basis. Know that even when you don't feel well, the antibiotics are doing their job, but they need more time.
Rifampin and Doxy? Can you get those? I am not aware of any better combination on planet earth for you than that. You could go to the Marty Ross, M.D. website and gather whatever information you want to try to convince your own doctors why you would like to try this. That way you've got some actual medical expertise supporting you, not just your own thoughts.
> 2 months on Saphris guess what, depression is back only got a few days better, positive symptoms are treated but my deep dark depression that as lifted with minocycline and Cipro ear drops (now resistant to the ear drop form) not tried pills which was kind of odd
> d.. 2 days on cipro (Panotile) ear drops and psychosis gone... but then after retry full blow mania and psychosis this happened years ago not now..
>
> Im infected with a lyme or something im 100% sure now
>
>
> please tell me how to proceed i believe you and my first alysia lyme test was positive, i dont respond to doxycycline but also doesnt make me worse a little better on 200 mg, but minocycline cured my schizophrenia and depression, if i only could take it safe i would do it again or another anti biotic. Please i know youre in very bad shape bleauberry but Id like to be well even if its for a few months from this horrible disease. Please help me bleauberry!
Posted by bleauberry on January 24, 2019, at 8:36:51
In reply to Full Blown Relapse, posted by bleauberry on January 23, 2019, at 9:12:42
Day 3 on Rifampin plus Doxycyline.
My crying, sobbing, feeling worthless depression is 95% gone.
My Parkinsons tremors are 90% gone.
My anxiety is 90% gone.
I feel pretty good. I feel like I've just been to hell and back. I spent 20 years in that same place when I was on psychiatric meds.
I expect Herxing to start today or tomorrow and based on experience it will probably show up as tiredness and blue mood but not deep depression. That will pass gradually over weeks. And the goal, again, is remission.
When I am good and stable (3 days doesn't qualify for that) I will be adding one psychiatric med to my cocktail. Ritalin.
In my journey, my experience, my study, many books, many blogs, I would suggest that whenever anybody's psychiatric profile includes a significant anxiety component to it, or a schizophrenia-like component, anything "racing", that you HAVE to assume and treat Bartonelliosis for at least 3 months and that your best odds of success (95%) are with the antibiotics Rifampin+Minocycline or Rifampin+Doxycycline.
These are cheap, easy, and relatively safe, so I don't know any good excuses why any psychiatric patient wouldn't at least try. Or at a bare minimum, confirm what I have said with your own study. Try Marty Ross, M.D. Very experienced and plain language easy to understand.
Posted by SLS on January 24, 2019, at 9:07:00
In reply to Bleauberry omg friend i need to tell you something, posted by Jeroen on January 23, 2019, at 17:32:20
> 2 months on Saphris guess what, depression is back only got a few days better, positive symptoms are treated but my deep dark depression that as lifted with minocycline and Cipro ear drops (now resistant to the ear drop form) not tried pills which was kind of odd
> d.. 2 days on cipro (Panotile) ear drops and psychosis gone... but then after retry full blow mania and psychosis this happened years ago not now..
>
> Im infected with a lyme or something im 100% sure now
>
>
> please tell me how to proceed i believe you and my first alysia lyme test was positive, i dont respond to doxycycline but also doesnt make me worse a little better on 200 mg, but minocycline cured my schizophrenia and depression, if i only could take it safe i would do it again or another anti biotic. Please i know youre in very bad shape bleauberry but Id like to be well even if its for a few months from this horrible disease. Please help me bleauberry!Jeroen, I think you should continue taking Saphris while you experiment with other things. It helps you with positive symptoms, and you tolerate it well. As I noted, the antidepressant effect can take a few months before you really notice it. Sometimes, family and friends observe that the patient is improving before the patient recognizes it. You have been ill for a long time. Your brain is resistant to long-term change. It will take longer for you to respond well to Saphris. Also, improvements in cases like yours are rarely linear. You will have ups and downs as you improve.
Keep taking Saphris consistently.
Give your brain time to stabilize. It has been insulted by a great many drugs in a short period of time. Saphris works for your positive symptoms and you tolerate the drug well. I can't think of any reason why you should stop taking it. You can still try antibiotics and other things.
Good luck.
- Scott
Posted by Lamdage22 on January 24, 2019, at 11:34:28
In reply to Re: Bleauberry omg friend i need to tell you something » Jeroen, posted by SLS on January 24, 2019, at 9:07:00
Pdocs say that the absence of psychosis helps with depression, too, in the long term.
Posted by Lamdage22 on January 24, 2019, at 11:42:29
In reply to Re: Bleauberry omg friend i need to tell you something, posted by Lamdage22 on January 24, 2019, at 11:34:28
So i agree with scott. Psychosis tears you down.
Posted by Jeroen on January 24, 2019, at 13:39:22
In reply to Re: Bleauberry omg friend i need to tell you something, posted by Lamdage22 on January 24, 2019, at 11:42:29
Does rifampin works like minocycline? Bleauberry?
Posted by bleauberry on January 26, 2019, at 11:18:39
In reply to Re: Bleauberry omg friend i need to tell you something, posted by Jeroen on January 24, 2019, at 13:39:22
> Does rifampin works like minocycline? Bleauberry?
Rifampin works BETTER with Minocycline than with Doxycycline.
I saw my doctor yesterday and she switched me to that combination - Mino + Rifampin. That's what I am on right now. The diff is that I will be taking double the maximum dose of Rifampin. Regular doses work just fine for the vast majority of patients. My case is particularly difficult and challenging.
Rifampin has some significant drug-drug reactions in which it can lower the blood levels of some meds - anything metabolized by CYP-3A4. As an example, Viagra is CYP-3A4, and I found out that for my regular dose to work while on Rifampin I have to double it. Double Viagra to get the same effect, while on Rifampin.
Well that same scenario applies to Doxycycline. It lowers the blood levels of Doxy.
The beauty of Minocycline is that it does NOT have drug-drug reactions with Rifampin. And it can do a better job of intra-cellular antibiotic work than Doxy. Rifampin does not lower the blood levels of Minocycline.
My doctor who prescribed these also had Lyme with Depression and Anxiety. She suffered badly. That's how she got to be an expert on all this psychiatry and Lyme stuff - it seems many of the experts traveled that same path. People here don't believe me, but if they could ask any of these clinicians who have had lyme themselves, you would discover that psychiatric involvement is almost universal. And that most cases of psychiatry out there are actually treatable as infections.
It's amazing how the quality of a doctor's knowledge and care can increase substantially when it becomes personal to their own lives.
Anyway, she got better but it required 9 months of constant Rifampin with another antibiotic. So if you can get it, plan on long term, don't even think short term.
They say that once you feel better, you need another 3 months of antibiotics after that! Just to be sure. That happened during my last remission which lasted 2 good years.
Posted by SLS on January 26, 2019, at 21:18:38
In reply to Re: Bleauberry omg friend i need to tell you something, posted by bleauberry on January 26, 2019, at 11:18:39
Have you thought to try N-acetylcysteine (NAC)? It is a potent anti-inflammatory as well as being an anti-oxident. Andrew Nierenberg has been promoting it for mood illness for a long time. It can take months to produce improvements, though.
- Scott
Posted by bleauberry on January 29, 2019, at 9:22:16
In reply to Re: Bleauberry omg friend i need to tell you something » bleauberry, posted by SLS on January 26, 2019, at 21:18:38
I take 1000mg NAC twice a day and also take Glutathione with it. These are the primary raw materials for the body to remove cellular toxicity.
There were clinical studies on NAC to treat depression. Some of the patients improved. I would suggest those patients were toxic with either a stealth microbial infection such as Lyme or Lyme-like, or toxic with amalgam fillings or other heavy metal accumulation, or toxic with common household molds, or maybe all 3 at the same time.
> Have you thought to try N-acetylcysteine (NAC)? It is a potent anti-inflammatory as well as being an anti-oxident. Andrew Nierenberg has been promoting it for mood illness for a long time. It can take months to produce improvements, though.
>
>
> - Scott
Posted by Lamdage22 on January 29, 2019, at 11:32:35
In reply to Re: Bleauberry omg friend i need to tell you something » SLS, posted by bleauberry on January 29, 2019, at 9:22:16
NAC improved me big time but only for 2 days then i get worse. What does this mean? I quit. Tried 2 or 3 times. I have a Dr Appointment on 7th february to ask all these questions.
MSM=Anxiety
Niacinamide=Depression
NAC= Improvement in depression then worsening
CBD= Anxiety
Fasting= Anxiety
Saffron= anxietyIm sure there is more but thats all i remember at this point.
I am not going to a psychiatric hospital because i suspect toxicity and they will only interpret it as hypochondria.
Posted by Lamdage22 on January 29, 2019, at 11:34:11
In reply to Re: Bleauberry omg friend i need to tell you something, posted by Lamdage22 on January 29, 2019, at 11:32:35
In fact, if you are right bleauberry id be pretty angry. That i was suffering in vain.
Posted by SLS on January 29, 2019, at 20:39:34
In reply to Re: Bleauberry omg friend i need to tell you something, posted by Lamdage22 on January 29, 2019, at 11:34:11
I'm sorry that you have negative reactions to so many different substances. It can be demoralizing.
Are you feeling hopeless?
- Scott
Posted by Lamdage22 on January 30, 2019, at 11:33:33
In reply to Re: Bleauberry omg friend i need to tell you something » Lamdage22, posted by SLS on January 29, 2019, at 20:39:34
No, not really. I'm just going through rough times here in the dorm!
This is the end of the thread.
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