![[dr. bob]](/dr-bob-sm.gif)
Dr. Bob is Robert Hsiung, MD,
bob@dr-bob.orgShown: posts 1 to 19 of 19. This is the beginning of the thread.
Posted by Prefect on March 27, 2018, at 19:13:32
My doctos says I have an active HHV 6 infection that may be causing my neuropsychiatric illness. I don't have the classic body symptoms of such an infection but he wants to put me on long term antivirals for treatment of my mental stuff. Sounds a little wacky to me.
Any thoughts on this?
Posted by baseball55 on March 27, 2018, at 20:03:48
In reply to HHV 6 Infection treatment for mental Illness?!, posted by Prefect on March 27, 2018, at 19:13:32
> My doctos says I have an active HHV 6 infection that may be causing my neuropsychiatric illness. I don't have the classic body symptoms of such an infection but he wants to put me on long term antivirals for treatment of my mental stuff. Sounds a little wacky to me.
>
> Any thoughts on this?I read that probably 100% of people are infected with hhv 6
Posted by ed_uk2010 on March 27, 2018, at 20:05:10
In reply to Re: HHV 6 Infection treatment for mental Illness?!, posted by baseball55 on March 27, 2018, at 20:03:48
What is the treatment plan suggested?
Posted by Lamdage22 on March 27, 2018, at 22:40:42
In reply to Re: HHV 6 Infection treatment for mental Illness?!, posted by baseball55 on March 27, 2018, at 20:03:48
what is that?
Posted by beckett2 on March 28, 2018, at 6:38:59
In reply to HHV 6 Infection treatment for mental Illness?!, posted by Prefect on March 27, 2018, at 19:13:32
I was diagnosed with elevated HHV-C titer and given an anti viral (Valganciclovir I think), but I became markedly suicidal, not a normal for me, and discontinued treatment.
Chronic Fatigue was what I was being treated for. The development of my psychiatric symptoms coincided with the advent of debilitating fatigue.
I'm very curious about your diagnosis and treatment. My regular internist things it's hooey. I don't know.
You might be interested in this site: https://hhv-6foundation.org has information.
Posted by Prefect on March 28, 2018, at 15:06:51
In reply to Re: HHV 6 Infection treatment for mental Illness?!, posted by ed_uk2010 on March 27, 2018, at 20:05:10
> What is the treatment plan suggested?
One of those antivirals that treat herpes viruses for like 6 months.
Posted by Prefect on March 28, 2018, at 15:10:28
In reply to Re: HHV 6 Infection treatment for mental Illness?! » Prefect, posted by beckett2 on March 28, 2018, at 6:38:59
> I was diagnosed with elevated HHV-C titer and given an anti viral (Valganciclovir I think), but I became markedly suicidal, not a normal for me, and discontinued treatment.
>
> Chronic Fatigue was what I was being treated for. The development of my psychiatric symptoms coincided with the advent of debilitating fatigue.
>My symptoms started 20 years ago with the viral infection. Since then it's been revised to anxiety since my body doesn't go through much fatigue.
> I'm very curious about your diagnosis and treatment. My regular internist things it's hooey. I don't know.
>
>
> You might be interested in this site: https://hhv-6foundation.org has information.
Posted by beckett2 on March 28, 2018, at 15:21:29
In reply to Re: HHV 6 Infection treatment for mental Illness?!, posted by Prefect on March 28, 2018, at 15:10:28
> > I was diagnosed with elevated HHV-C titer and given an anti viral (Valganciclovir I think), but I became markedly suicidal, not a normal for me, and discontinued treatment.
> >
> > Chronic Fatigue was what I was being treated for. The development of my psychiatric symptoms coincided with the advent of debilitating fatigue.
> >
>
> My symptoms started 20 years ago with the viral infection. Since then it's been revised to anxiety since my body doesn't go through much fatigue.What do you think (about possible treatment or the relation of your psych symptoms)?
A friend's kid came down with what's been called PANDAS (I think that's it.).
> > I'm very curious about your diagnosis and treatment. My regular internist things it's hooey. I don't know.
> >
> >
> > You might be interested in this site: https://hhv-6foundation.org has information.
>
>
Posted by bleauberry on March 30, 2018, at 6:24:03
In reply to HHV 6 Infection treatment for mental Illness?!, posted by Prefect on March 27, 2018, at 19:13:32
Well, all I can tell you is that I had 20+ years of treatment resistant depression, bipolar depression, schizo-affective, anxiety, so many diagnosis, so many psychiatrists, over $100,000 spent, failed backpacks full of prescription meds, failed ECT - after all that, all I can tell you is that all of it went 99% gone with antibiotic treatment.
Lyme = bacteria in the brain. So it should not be a surprise that nearly every lyme patient has psychiatric symptoms. Or that 9 out of 10 psychiatric patients improve more with antibiotic meds and herbs than they do with psychiatric meds.
I am obviously using a broad generalized brush but you get the point. It actually isn't as broad as it seems. It's just that the lack of awareness and knowledge on the topic is woefully low amongst most mainstream clinicians.
So while I consider myself an expert on bacterial links to psychiatry, I am not well schooled on the viral angle. However, I think common sense and logic can be employed to extrapolate the likelihood viruses in the brain are just as bad as bacteria in the brain.
I doubt that anti-viral treatment alone will get you to the goal line. Longterm Lyme patients usually require more than just antibiotics to get well.
There is an inflammation component which is crucial to treat if you want to truly see improvements. There is an anti-toxin component with all infections, or else you won't get better.
Even though the doc has determined you have a virus, I think you would gain immense knowledge and confidence if you read the book 'Healing Lyme' by Stephen Buhner. You will clearly see the direct link between stealth infections and psychiatry in that book.
There is actually no way the doctor can accurately pinpoint that you have a viral infection causing psychiatric symptoms. The doctors who got me well said something like this, "We will employ strategies that get people well but we may never know the exact bug that made you sick".
In stealth infections such as Lyme or HIV and others, a healthy immune system can be made into unhealthy, confused, too weak in some ways and too strong in other ways. In this scenario, friendly bacteria, fungi and viruses can become enemies. So we likely have more issues going on that just that one virus the doc is thinking of.
It would actually make a lot more sense to assume you have an unsuspected case of misdiagnosed Lyme, since 9 out of 10 tick born diseases are misdiagnosed as something else - usually psychiatric, fibromyalgia, or chronic fatigue syndrome, or all.
It really doesn't matter. What does matter is that the treatment involves 4 things:
1. Wide spectrum antimicrobials from multiple angles.
2. Wide spectrum anti-inflammations from multiple angles.
3. Anti-toxin strategies.
4. Time (it took me 3 years to go from suicidal basket cases to remission on antibibiotcis and herbs, with hardly any improvement at all seen in the first year) (it is a totally different game)Whether I agree or disagree with your doc doesn't matter. What does matter is that he is viewing a strategy that has the potential to lead to a cure or long-lasting enduring improvement. Psychiatry by itself really doesn't do that. Psychiatry is more like support, relief of acute symptoms, relief of short term symptoms, assistance with daily tasks. But it is not designed to end disease or infection.
Your doc sounds like he wants to take you to a higher level than merely acute symptoms and that is a great thing!
> My doctos says I have an active HHV 6 infection that may be causing my neuropsychiatric illness. I don't have the classic body symptoms of such an infection but he wants to put me on long term antivirals for treatment of my mental stuff. Sounds a little wacky to me.
>
> Any thoughts on this?
Posted by SLS on March 30, 2018, at 7:31:23
In reply to Re: HHV 6 Infection treatment for mental Illness?! » Prefect, posted by beckett2 on March 28, 2018, at 6:38:59
> I was diagnosed with elevated HHV-C titer and given an anti viral (Valganciclovir I think), but I became markedly suicidal, not a normal for me, and discontinued treatment.
Valganciclovir is actually a prodrug of ganciclovir. From what I saw during a cursory Google search, depression, anxiety, and aggitation are potential side effects of ganciclovir. Depression + (anxiety or aggitation) = suicidality. Suicidality might be particularly likely if a component of depression is anhedonia.
Severe depression is a common phenomenon seen when taking interferon, another antiviral.
- Scott
Posted by beckett2 on March 30, 2018, at 10:25:31
In reply to Re: HHV 6 Infection treatment for mental Illness?! » beckett2, posted by SLS on March 30, 2018, at 7:31:23
> > I was diagnosed with elevated HHV-C titer and given an anti viral (Valganciclovir I think), but I became markedly suicidal, not a normal for me, and discontinued treatment.
>
> Valganciclovir is actually a prodrug of ganciclovir. From what I saw during a cursory Google search, depression, anxiety, and aggitation are potential side effects of ganciclovir. Depression + (anxiety or aggitation) = suicidality. Suicidality might be particularly likely if a component of depression is anhedonia.
>
> Severe depression is a common phenomenon seen when taking interferon, another antiviral.
>
>
> - ScottWould you know how others have coped with the bump in depression? Yes indeed, I was agitated. Thanks for confirming my experience as within the spectrum of side effects. I knew interferon could precipitate depression, but wow *-*
Posted by Prefect on March 30, 2018, at 12:01:08
In reply to Re: HHV 6 Infection treatment for mental Illness?! » Prefect, posted by bleauberry on March 30, 2018, at 6:24:03
Bleauberry,
How are you deducing from posts I've made so far I have Lyme Disease?
Posted by ed_uk2010 on March 30, 2018, at 16:34:36
In reply to HHV 6 Infection treatment for mental Illness?!, posted by Prefect on March 27, 2018, at 19:13:32
>My doctos says I have an active HHV 6 infection that may be causing my neuropsychiatric illness.
HHV-6 is really common, so most people have probably been infected with it at some point. In general, infections are mild and not diagnosed so antivirals aren't prescribed. Occasionally, people have a serious infection needing treatment, often because they are immuno-compromised, but not always. Some people think HHV-6 has a role in certain forms of chronic fatigue.
Unfortunately, the common and relatively safe antivirals acyclovir (Zovirax tablets) and valacyclovir (Valtrex) aren't very effective against HHV-6 at all, whereas more problematic antivirals such as valganciclovir (Valcyte) are active.
I must admit, I'd be a bit concerned if he wants to use something like valganciclovir (Valcyte). In the body, valganciclovir is converted to ganciclovir, which is the active drug. Ganciclovir and valganciclovir are potentially toxic drugs, which are mainly use for serious viral illness in people with a weakened immune system due to advanced HIV infection, or after an organ transplantation. Side effects can include bone marrow depression leading to low white blood cell counts. In animal studies, ganciclovir appears to be carcinogenic and impairs male fertility.
I think there needs to be a clear reason to use this medication. So, it would normally only be used by a specialist in infectious disease. Have you seen a doctor like this?
I'd also wonder about payment or insurance issues for non-approved uses. How would this work if something like Valcyte was used? The full cost of this med is very high.
Posted by SLS on March 30, 2018, at 23:29:17
In reply to Valganciclovir (Valcyte) questions » Prefect, posted by ed_uk2010 on March 30, 2018, at 16:34:36
Hi, Ed.
Thanks for posting this.
- Scott> >My doctos says I have an active HHV 6 infection that may be causing my neuropsychiatric illness.
>
> HHV-6 is really common, so most people have probably been infected with it at some point. In general, infections are mild and not diagnosed so antivirals aren't prescribed. Occasionally, people have a serious infection needing treatment, often because they are immuno-compromised, but not always. Some people think HHV-6 has a role in certain forms of chronic fatigue.
>
> Unfortunately, the common and relatively safe antivirals acyclovir (Zovirax tablets) and valacyclovir (Valtrex) aren't very effective against HHV-6 at all, whereas more problematic antivirals such as valganciclovir (Valcyte) are active.
>
> I must admit, I'd be a bit concerned if he wants to use something like valganciclovir (Valcyte). In the body, valganciclovir is converted to ganciclovir, which is the active drug. Ganciclovir and valganciclovir are potentially toxic drugs, which are mainly use for serious viral illness in people with a weakened immune system due to advanced HIV infection, or after an organ transplantation. Side effects can include bone marrow depression leading to low white blood cell counts. In animal studies, ganciclovir appears to be carcinogenic and impairs male fertility.
>
> I think there needs to be a clear reason to use this medication. So, it would normally only be used by a specialist in infectious disease. Have you seen a doctor like this?
>
> I'd also wonder about payment or insurance issues for non-approved uses. How would this work if something like Valcyte was used? The full cost of this med is very high.
>
>
>
Posted by bleauberry on April 19, 2018, at 12:49:22
In reply to Re: HHV 6 Infection treatment for mental Illness?! » bleauberry, posted by Prefect on March 30, 2018, at 12:01:08
I automatically deduce that 9 out of 10 psychiatric patients have a tick born disease.
I do that because the first doctor from one state who saved me told me that. The second doctor from another state told me the same exact thing. Both are family doctor LLMDs.
They were merely pointing out why the epidemic of lyme/psychiatry was so big. Most family doctors have no clue on the topic. The 9 of 10 estimates they shared with me were the results of what they had experienced over the years in their own clinics. 9 out 10 patients came from other doctors and were poorly managed and were on psychiatric meds. By the time Lyme treatment was done - 9 months to 3 years - there were no more psychiatric symptoms, or very mild remaining symptoms.
I can't think of any reason those 2 separate doctors would lie to me about any of that, or how their lies would be exactly the same. These guys are experts in both psychiatry and lyme and they actually get people well. You don't see that very often. They got me well - a 20+ year basket case who even failed ECT!!!!!
It is interesting to make a list of all the symptoms of depression or anything psychiatric. And then make a list of symptoms of mid stage or late stage Lyme disease. And then compare how the lists look almost identical.
What the LLMDs look for - when lab testing is poor - are 'clusters of symptoms'. In the book "Why Can't I Get Better" the author even categorizes every symptoms you can think of into groups or clusters. And then you take a long multiple choice test for each of those. At the end of the test, you see very clearly the clusters. Most of them are things the patient hardly ever thinks about, lives with every day, and doesn't associate with their other problems. But the symptoms are all attached and the paint a picture, if you know what to look for.
It's just the unfortunate experience I have in the field that I can recognize patterns and clusters just listening to someone tell their story. The stories are usually similar. The patient thinks their story is unique. It isn't.
> Bleauberry,
>
> How are you deducing from posts I've made so far I have Lyme Disease?
Posted by SLS on April 19, 2018, at 22:51:52
In reply to Re: HHV 6 Infection treatment for mental Illness?! » Prefect, posted by bleauberry on April 19, 2018, at 12:49:22
> I automatically deduce that 9 out of 10 psychiatric patients have a tick born disease.
This is an extraordinary assertion.
Before I continue debating you on this, I am more interested in knowing what should be done with these 9 people. What is the FIRST thing to be done to get these people better? For the sake of conciseness, it might be easier to address the following two scenarios as examples.
1. Acute - early de novo infection:
2. Chronic - late stage infection:
I like the idea of using 3 antibiotics concurrently. I have heard this idea proposed before - sort of like a cocktail of drugs used to treat HIV / AIDS.
Which 3 antibiotics are most often chosen?
- Scott
Posted by bleauberry on April 20, 2018, at 11:40:26
In reply to HHV 6 Infection? Lyme infection? 9/10? Treatment? » bleauberry, posted by SLS on April 19, 2018, at 22:51:52
> > I automatically deduce that 9 out of 10 psychiatric patients have a tick born disease.
>
> This is an extraordinary assertion.I agree. The first time I heard that I thought it was insane. Ridiculous. Impossible. But then, during my own journey, I realized it was all true. Too many details to discuss here.
Did you read the part that those statements came from two different doctors not from me? And that they specialize in psychiatry and lyme? That's all they do. The same doctors who ended my 20+ years of treatment resistance? What gives that statement credibility is:
1.Different doctors from different localities who do not know each other offered the same exact opinion - their opinions, both of them, were their own, formed from years of clinical observation in their own offices. When they say 9 out of 10, they seriously mean 9 out of 10. They didn't make it up. It is actually what happens in the office. I was one of those 9. Their views are also bolstered and supported by feedback from other LLMDs. They meet annually for large seminars, recently in Las Vegas. Nothing I have shared here is disputable to them - what I share here came from them!
2.Their claims were not empty or wishful - this is what they do - they take poorly managed psychiatric patients from other doctors and they fix them up.
I understand your world view is through the lens of establishment science, not necessarily anecdotal. That creates a certain amount of skepticism if new info comes from some other source besides a scientific journal.
If you ask me, an extraordinary assertion is that 9 of 10 psychiatric patients are not infection victims. I have more proof that they are, than there is proof they aren't. In the end, it is an individual choice. Yours and mine have rarely been in agreement. I present options for those seeking choices. It makes no sense for someone to be stuck in depression and psychobabble for 20 years and not get options, especially when they haven't made much progress in all that time. I mean, we only have one life. It's not like we have forever to double down on things that haven't produced.
>
> Before I continue debating you on this, I am more interested in knowing what should be done with these 9 people. What is the FIRST thing to be done to get these people better? For the sake of conciseness, it might be easier to address the following two scenarios as examples.The first thing to do is to get a second opinion. That second opinion should come only from a doctor who considers themselves to be an LLMD. This second opinion will take about 2 hours, $300, a ton of questions (all of them are listed in the book 'Why Can't I Get Better" Horowitz).
Do not get another psychiatric prescription until the above has been performed first.
>
> 1. Acute - early de novo infection:
>
> 2. Chronic - late stage infection:Huge diff between acute and chronic. When I speak Lyme, you can just assume I mean chronic - either mid stage or late stage. Earlier stages of infection or co-infections are usually more physical and less psychological. As time goes on, it becomes more psychiatric. Acute is fairly easy to diagnose and treat. Chronic is more complicated, requiring greater expertise to diagnose and treat.
>
> I like the idea of using 3 antibiotics concurrently. I have heard this idea proposed before - sort of like a cocktail of drugs used to treat HIV / AIDS.In my case the reason is because Borellia can morph into 3 different forms when it is under threat. Each form responds to different ABX. If we only treat for 1 or 2 of the possible forms, then the bugs will shift into the other form and we make no progress. This is one reason why clinical trials are so useless. They don't do it right.
>
> Which 3 antibiotics are most often chosen?Variable. Most LLMDs agree on the multi-mechanism approach of multi ABX, but they might have their own favorites. My previous docs loved Clindamycin, for example, but my current one is fearful of it.
Doxy is common, as is Azithromycin. Tindamax. Ceftin. Flagyl. Rifampin. More. In my first remission a few years ago, I think I went through over a dozen different ABX over time and I don't remember all their names. Docs like to keep rotating them in and out for effectiveness and to avoid tolerance.
The primary factor is not which 3 (or even as much as 5), but rather, that all of them have different mechanisms so that they cover the entire spectrum of gram-negative, gram-positive, cell wall, cell wall deficient, and cystic.
And then there are common co-infections such as Bartonella, Babesia and Mycoplasma. The ABX cocktails often cover these confections as a side benefit. Sometimes a more targeted approach is needed. In my case for example, and in most psychiatric patients in my opinion, we are dealing with Bartonella and cystic Borellia. imo. My treatment is wide spectrum with an extra focus on Bartonella and busting cysts and biofilms.
I might mention there is a potential side benefit of visiting an LLMD instead of a psychiatrist - in their practice they have no way of avoiding becoming experts on psych meds, since nearly every patient walking in the door has unresolved psych symptoms. It's part of the picture. They have no choice. The psychiatrist is only dealing with psych meds and symptoms, not the whole person, and not other diseases. Generally., The LLMD is very different, addressing the whole person, various clusters of symptoms which seem unrelated but they are actually related, and addressing the psychiatric symptoms within all of that. So they get a certain exposure, perception, and experience that the psych docs just simply don't get in their practices.
So that brings up a new extraordinary assertion - that LLMDs may be more skilled in treating psychiatric symptoms than specialist psychiatrist are. :-)
>
>
> - Scott
Posted by SLS on April 21, 2018, at 7:13:21
In reply to Re: HHV 6 Infection? Lyme infection? 9/10? Treatment?, posted by bleauberry on April 20, 2018, at 11:40:26
> > > I automatically deduce that 9 out of 10 psychiatric patients have a tick born disease.
> > This is an extraordinary assertion.
> I agree. The first time I heard that I thought it was insane. Ridiculous. Impossible. But then, during my own journey, I realized it was all true. Too many details to discuss here.
>
> Did you read the part that those statements came from two different doctors not from me?Bleauberry - How many doctors are there who would opine otherwise? That's a hell of a ratio working against the numbers you tout. If I remember, I'll ask my doctor, who is currently on a tour speaking about Lyme disease in psychiatry, what he would estimate the numbers to be.
> > Before I continue debating you on this, I am more interested in knowing what should be done with these 9 people. What is the FIRST thing to be done to get these people better? For the sake of conciseness, it might be easier to address the following two scenarios as examples.
> Do not get another psychiatric prescription until the above has been performed first.
Deflection.
> > 1. Acute - early de novo infection:
> >
> > 2. Chronic - late stage infection:> Huge diff between acute and chronic.
Yes. That's why I separated cases into two scenarios.
Let's see how to best ask my question again. Assume that Lyme Disease has been accurately diagnosed. To the best of your estimation, what is the first treatment (please be specific) to be introduced for each scenario? How do we get people well? If multiple treatments come to mind, just choose one to talk about. We can talk about the others at another time.
> > I like the idea of using 3 antibiotics concurrently. I have heard this idea proposed before - sort of like a cocktail of drugs used to treat HIV / AIDS.
> In my case the reason is because Borellia can morph into 3 different forms when it is under threat.
That is very interesting. A bacterium can sense threat? Where can I learn more about this morphing thing?
> > Which 3 antibiotics are most often chosen?
> Doxy is common, as is Azithromycin. Tindamax. Ceftin. Flagyl. Rifampin. More. In my first remission a few years ago, I think I went through over a dozen different ABX over time and I don't remember all their names. Docs like to keep rotating them in and out for effectiveness and to avoid tolerance.
I understand what you mean. Would this be better characterized as treating mutations that have led to spirochete superbugs?
> The primary factor is not which 3 (or even as much as 5), but rather, that all of them have different mechanisms so that they cover the entire spectrum of gram-negative, gram-positive, cell wall, cell wall deficient, and cystic.
>
> And then there are common co-infections such as Bartonella, Babesia and Mycoplasma. The ABX cocktails often cover these confections as a side benefit. Sometimes a more targeted approach is needed. In my case for example, and in most psychiatric patients in my opinion, we are dealing with Bartonella and cystic Borellia. imo. My treatment is wide spectrum with an extra focus on Bartonella and busting cysts and biofilms.This was great presentation. Thank you for that. Busting cysts does not sound terribly appetizing.
> So that brings up a new extraordinary assertion - that LLMDs may be more skilled in treating psychiatric symptoms than specialist psychiatrist are. :-)
Clever...
- Scott
Posted by bleauberry on April 21, 2018, at 9:46:27
In reply to Re: HHV 6 Infection? Lyme infection? 9/10? Treatment?, posted by SLS on April 21, 2018, at 7:13:21
> Bleauberry - How many doctors are there who would opine otherwise? That's a hell of a ratio working against the numbers you tout. If I remember, I'll ask my doctor, who is currently on a tour speaking about Lyme disease in psychiatry, what he would estimate the numbers to be.
Roughly I would estimate "most". Whether that is 7 out of 10, 9 out of 10, whatever, I don't know. But most, for sure, no doubt.
To avoid pure speculation I can only answer what I know. That is, two separate doctors told me that in their offices they experience 9 out 10 new patients get better on antibiotics after having been failed by other doctors who treated with psychiatric drugs and pain killers. It was all quite profound to me, as well as to you, with the difference being that I actually experienced what they promised was coming. I actually got to test their wisdom, ask tough questions, challenge them, pick their brains....and it all turned out true.
We have a new LLMD in my state. She just left the hospital system to go into private practice. I saw her a few months ago just to establish a relationship in case I ever need her. Anyway, she told me an interesting story of another patient. The patient was going crazy with anxiety and depersonalization. The doc had a choice of Xanax, SSRI, referring the patient to a psychiatrist, or other. She chose other. She treated the patient for 3 months for Bartonella - a common co-inffection with symptoms consistent with what the patient was suffering - and the patient recovered totally. You and I both know that if that patient had gone to any other doctor, they would be on psych meds today and still complaining of not being restored to wellness.
>
> > > Before I continue debating you on this, I am more interested in knowing what should be done with these 9 people. What is the FIRST thing to be done to get these people better? For the sake of conciseness, it might be easier to address the following two scenarios as examples.
>
> > Do not get another psychiatric prescription until the above has been performed first.
>
> Deflection.NOT a deflection. I said very clearly the FIRST thing to do, which is exactly what you asked, the first thing to do is get a second opinion. Not another prescription. Not a test. Not a specialist. Not another appointment with your doc. None of those. A second opinion. The caveat with that second opinion is that it is mandatory it must be performed by an LLMD, not an average family doctor, not an infectious disease specialist, not a psychiatrist, only an LLMD. THAT IS THE FIRST THING TO DO.
>
> > > 1. Acute - early de novo infection:
> > >
> > > 2. Chronic - late stage infection:
>
> > Huge diff between acute and chronic.
>
> Yes. That's why I separated cases into two scenarios.
>
> Let's see how to best ask my question again. Assume that Lyme Disease has been accurately diagnosed. To the best of your estimation, what is the first treatment (please be specific) to be introduced for each scenario? How do we get people well? If multiple treatments come to mind, just choose one to talk about. We can talk about the others at another time.How to start treatment after a diagnosis? Well,that is a very individual thing, varying wilding from patient to patient. Some patients come into the office super sensitive to many things - meds, foods, perfumes - like I was - key word 'was' - and these folks have to be started very cautiously. The over-riding governor in how aggressive or how conservative to treat a patient is how sick they are at the baseline, and how intense the anticipated Herxheimer reactions might be predicted to be. It is very possible to land a patient in the emergency room or even a coffin with overly aggressive treatment too early.
One patient may be able to go straight into 3 antibiotics on day 1. That is something that the doctor would have a feel for. Another patient may have to start with micro-doses of just one ABX. Like me, for example. I was so sick in the beginning, when I left psychobabble and went searching for true improvement, that I couldn't even handle the lowest dose 100mg of Doxycycline. My LLMD backed me off to 50mg and I was still Herxing to hard - made depression way worse. He backed me off to 25mg once every 3 days. I could barely handle that.
Fast forward about 6 months later after that and I was taking 400mg Doxy per day, all in one dose for a big spike, and 2 other antibiotics at full doses, and Herxing was still heavy but tolerable.
Another common thing at the beginning of treatment is to clean app the patient's diet and supplements. We want a good professional multi, maybe some anti-inflammatory anti-lyme herbs in the background, vitamin c, vitamin d, probably gluten free, organic and non-gmo as much as possible, do some food elimination experiments to identify any probs. These are common things that happen at the start of treatment.
Most docs start off with either Doxy or Azithromycin. My first LLMD favored Tetracycline. As different psychiatrists have their own styles and favorites, LLMDs are like that too.
>
> > > I like the idea of using 3 antibiotics concurrently. I have heard this idea proposed before - sort of like a cocktail of drugs used to treat HIV / AIDS.
>
> > In my case the reason is because Borellia can morph into 3 different forms when it is under threat.
>
> That is very interesting. A bacterium can sense threat? Where can I learn more about this morphing thing?http://www.treatlyme.net/treat-lyme-book/lyme-disease-antibiotic-guide/
I just did a real quick internet search to find the above link. It touches on the morphing thing. There are many others.
There is a lot of information online at blogs. Try finding stuff to read by DR MARTY ROSS or DR BILL RAWLS and DR RICHARD HOROWITZ.
The bacterium we are talking about have been around for 1000s of years and they have 1000s of genes. They are smart. I cannot tell you how they operate. As far as I know, all living organisms have a fight-or-flight response of some kind. Even plants.
They talk too. They form biofilms - sort of like cocoons made of your own DNA - with entire colonies hiding safe inside where the immune system, blood circulation and antibiotics cannot reach them. That is their defense tactic. If one bacterium is being attacked by an immune cell or one is being sickened by an antibiotic, the others are going to know about that. They talk. There is even anecdotal evidence that chemicals unique to berries serve to clutter up their communication channels. So I eat a lot of berries. :-)
>
> > > Which 3 antibiotics are most often chosen?
>
> > Doxy is common, as is Azithromycin. Tindamax. Ceftin. Flagyl. Rifampin. More. In my first remission a few years ago, I think I went through over a dozen different ABX over time and I don't remember all their names. Docs like to keep rotating them in and out for effectiveness and to avoid tolerance.
>
> I understand what you mean. Would this be better characterized as treating mutations that have led to spirochete superbugs?The link above hints at the fact that there are constantly mutating new versions of the bacteria which makes testing almost impossible, and treatment needs skilled experience.
I automatically view the whole lyme thing as a superbug. It is tough. It is THE GREAT DECEIVER or THE GREAT IMITATOR. I am not aware of another bacteria which can impact the human body in such a devastating and yet stealth manner.
Ever heard of Plum Island? We don't know if this story is true or not but many say it is. It's off the coast of Connecticut. During WWII we hired some of Germany's best scientists to produce chemical warfare agents. They worked on Plum Island. Even today boats are not allowed near it. It is still a mystery. The scientists came up with some nasty germs but they had difficulty finding the right way to distribute the germs. They ended up favoring ticks - ticks could attack the army and basically render them useless without killing them.
In my own journey I often wonder if the germs we are dealing with originated in Plum Island decades ago? The first formal discovery and naming of Lyme disease happened on the mainland not far from that island.
There were rumors that the island is safe because there was no way the germs could get off of the island, no way for ticks to escape. But they didn't consider migrating birds. They didn't consider the herds of deer that swim out to the island and back.
Anyway, I think Lyme is a superbug. It makes a lot of people super sick with Fibromyalgia, Depression, Chronic Fatigue Syndrome, Anxiety, Schizophrenia, on and on. There are even stories of the lesions on the brains of MS patients disappearing after longterm antibiotic treatment. A high percentage of autopsied ALS brains show remnants of Borellia. Recent rumors are that Lyme may be implicated in both Dementia and ALS. We won't know in our lifetimes. But having been through the journey I have been through, it makes total sense to me. That's because these bacteria we are talking about drill holes into brain tissue and glands. The repercussions of doing that are endless.
>
> > The primary factor is not which 3 (or even as much as 5), but rather, that all of them have different mechanisms so that they cover the entire spectrum of gram-negative, gram-positive, cell wall, cell wall deficient, and cystic.
> >
> > And then there are common co-infections such as Bartonella, Babesia and Mycoplasma. The ABX cocktails often cover these confections as a side benefit. Sometimes a more targeted approach is needed. In my case for example, and in most psychiatric patients in my opinion, we are dealing with Bartonella and cystic Borellia. imo. My treatment is wide spectrum with an extra focus on Bartonella and busting cysts and biofilms.
>
> This was great presentation. Thank you for that. Busting cysts does not sound terribly appetizing.It makes for some seriously intense Herxheimer reactions - the worst depression I ever felt - and the exact same depression I was battling all those years - it was actually my first Herx that clearly showed me there is a direct link between infection and psychiatry.
>
> > So that brings up a new extraordinary assertion - that LLMDs may be more skilled in treating psychiatric symptoms than specialist psychiatrist are. :-)
>
> Clever...
>
>
> - Scott
This is the end of the thread.
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