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Dr. Bob is Robert Hsiung, MD,
bob@dr-bob.orgShown: posts 1 to 11 of 11. This is the beginning of the thread.
Posted by bleauberry on January 28, 2012, at 10:30:47
So last year I decided I was exhausted from fighting Lyme or whatever and decided to just take an indefinite break and focus purely on symptom improvement regardless of underlying issues. That led me, after a few duds along the way, to Rhodiola Rosea. After a few weeks on it, I was telling people, "Well, it's not a cure or anything like that, but wow I do feel notable improvement and honestly if this is as good as it ever gets I'm ok with that because it's a lot better than I was."
Then something happened. It seemed to suddenly poop out without any warning. Worse than that, it was now making me really depressed. I tried different brands and all kinds of different dosing experiments, but they all told me the same thing....I feel better without it! What happened?
I've heard Stephan Buhner is adding to his original book Healing Lyme and in his updates he has added new things, one of them being Rhodiola. While this herb is typically used for depression, energy, fatigue, and anxiety, the purpose here is that it is specific for Bartonella....one of the Lyme bacteria very difficult to deal with.
So I'm wondering, did it actually do stuff to help my immune system fight Lyme, and did it actually begin to make a dent in Bartonella? Because if it did, then Herxheimer reaction explains it and makes sense.
Here's the weird catch....when it pooped out, it was only a day later I got a bad stomach/body flu that lasted over a week. Still haven't completely recovered and that was 2 weeks ago. But when I was over the hump and much improved and back to work, Rhodiola no longer worked. Made me worse actually. So something in the whole flu thing really messed something up.
Most people do not understand how the immune system can be tied to mood, and I honestly I don't know exactly how either, just that it is. For example during a flu it is not the actual bug making us feel bad....it is the body''s immune response that feels bad.
Anyway, I improved on rhodiola for a few months and now improved again without it! Go figure. Confusing stuff.
Posted by morgan miller on February 3, 2012, at 1:12:47
In reply to I Wonder What Happened, posted by bleauberry on January 28, 2012, at 10:30:47
Very confusing...
I would imagine the main thing that makes us feel bad when the immune system is finding itself or sprinting through mine field with a machine gun unloading on the enemy across the lines, would be the inflammation that attacks our bodies from head to toe.
Posted by bleauberry on February 7, 2012, at 16:57:50
In reply to Re: I Wonder What Happened, posted by morgan miller on February 3, 2012, at 1:12:47
> Very confusing...
>
> I would imagine the main thing that makes us feel bad when the immune system is finding itself or sprinting through mine field with a machine gun unloading on the enemy across the lines, would be the inflammation that attacks our bodies from head to toe.Well said. I think that is exactly what goes on. The problem is, does the battlefield ever get completely cleaned up afterwards? Maybe in a young healthy person it does, but not so sure about those with chronic ilnesses, pscyhiatric illnesses, or age.
I've lost most of the gains I had, and it was a flu a month ago that stole them.
Posted by morgan miller on February 8, 2012, at 16:58:37
In reply to Re: I Wonder What Happened » morgan miller, posted by bleauberry on February 7, 2012, at 16:57:50
I was thinking, since LDN didn't work out for you, I wonder if Luteolin would. What do you think?
I'm doing pretty good on LDN by the way. I'm at 3 mg, been there for a week. I think I might stay here for a while. Only time will tell if this is going to really help me.
Can you share how you dosed your LDN trial? What was the highest dose you were at? Did you try staying at a super low dose for a while?
Morgan
Posted by morgan miller on February 8, 2012, at 17:00:10
In reply to Re: I Wonder What Happened » morgan miller, posted by bleauberry on February 7, 2012, at 16:57:50
Damage is cumulative, but I do believe, with today's knowledge, we can find ways to recover well enough to go back to enjoying life at almost any age.
Have you thought about trying more antibiotics?
Posted by morgan miller on February 8, 2012, at 17:00:38
In reply to Re: I Wonder What Happened, posted by morgan miller on February 8, 2012, at 17:00:10
How about Astragalus? Any experiences with that?
Posted by bleauberry on February 12, 2012, at 11:43:40
In reply to Re: I Wonder What Happened, posted by morgan miller on February 8, 2012, at 16:58:37
> I was thinking, since LDN didn't work out for you, I wonder if Luteolin would. What do you think?
I don't know what that is. Thank you for naming it though because I will look into it.
>
> I'm doing pretty good on LDN by the way. I'm at 3 mg, been there for a week. I think I might stay here for a while. Only time will tell if this is going to really help me.Off to a good start, that is a good prognosis.
>
> Can you share how you dosed your LDN trial? What was the highest dose you were at? Did you try staying at a super low dose for a while?
>
> MorganYeah I've tried all sorts of doses from ultra low (1/10th mg) to as high as 4.5mg, and as long as a month. None good.
My best guess is, well, I think my opioid receptors are probably already partially blocked by toxins, so blocking them even more with LDN would predictably not feel good. Matter of fact, LDN to me feels similar to what I feel when I have a herxheimer. Maybe I'm just too toxic, LDN does good stuff, the end result is I am more toxic because LDN did work but my genes for whatever reason cannot handle the toxicity byproduct of enhanced immune system.
Vicodin can save me in emergencies though. Decent for energy and mood, sort of like an as needed life preserver if I find myself drowning. So opioid agonism, versus opioid antagonism, does something good for me. I've read in several places that the toxins of the world, and specifically the toxins of lyme and infections, have a strong affinity for opioid receptors. If LDN has stronger affinity than them, then LDN will displace them, but yet the receptors are still partially blocked by the LDN, and then reblocked as soon as the LDN is gone. Vicodin on the other hand displaces the toxins and acts as a substitute to my own natural opioids, thus explaining why it helps me feel better.
But who knows. Complicated stuff. Basically I think we all just have to listen to our bodies because they will tell us what is good and what isn't. Your body is saying LDN is looking decent, mine says it needs to be avoided.
Posted by bleauberry on February 12, 2012, at 11:47:05
In reply to Re: I Wonder What Happened, posted by morgan miller on February 8, 2012, at 17:00:10
> Damage is cumulative, but I do believe, with today's knowledge, we can find ways to recover well enough to go back to enjoying life at almost any age.
I totally agree.
>
> Have you thought about trying more antibiotics?Yes I have. I think I'm just more comfortable with the herbal approach. I've run into some problems with antibiotics and have gained a little bit of fear of them. Probably unjustified fear, but fear nonetheless. The hard part is....which antibiotic? it depends on which doc we ask or which patient we ask....they're all different. So that makes it hard too.
Along that same thought pattern though I am definitely looking to take on a new batch of herbs, specific for occult infections and toxins, that I have not yet tried.
Posted by bleauberry on February 12, 2012, at 11:53:44
In reply to Re: I Wonder What Happened, posted by morgan miller on February 8, 2012, at 17:00:38
> How about Astragalus? Any experiences with that?
Well, that is a good herb but is contraindicated in chronic lyme.
Hard to explain, but in early lyme astragalus is very helpful. However, in later chronic lyme, it is hurtful. That's because astragalus impacts the immune system in ways that increases the impact of autoimmune reactions. So if autoimmune situations exist, astragalus makes them worse.
That said, no human on earth knows the details of meds or herbs...what we do know only scratches the surface. So while books and authors say no to astragalus in people like me, I am at least open minded enough to know that it does indeed deserve a self trial to see what it does with me specifically....not some general population or some sample or Joe down the street....me. Who knows, anything is possible, it could be a miracle and be totally the opposite of the warnings. I would have to do self experimentation to find out the answer to that. That's ok with me. It's part of the journey of battling evil and disease.
Posted by morgan miller on February 15, 2012, at 4:37:31
In reply to Re: I Wonder What Happened, posted by bleauberry on February 12, 2012, at 11:53:44
Thanks for the thorough responses.
Did you get a chance to read about Luteolin? Just curious.
I've found that there are a few guys over at mindandmuscle.net that have Lyme and have done quite a bit of research, and, experimenting with treatment-herbal and medical.
Posted by Karrot on January 30, 2013, at 23:00:09
In reply to Re: I Wonder What Happened, posted by morgan miller on February 15, 2012, at 4:37:31
Dear Morgan and Berry, I'm hoping you might be willing to look at my post on LDN. ??? Thanks! K
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