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Post by Jason on Jun 5, 2018 13:18:34 GMT
Hi Traveler, I sometimes post on healingwell and was sent here with a question. I am thinking of starting Isatis powder as a final additive to my normal Bartonella treatment (I'm 95-97%) to try and get over the last hump. Do you have any idea what a starting/max dose for the powder would be? Buhner only mentions tincture combinations.
For Bart, I'm currently taking Houttuyania powder 3G/day (1G 3x daily), Jap Knotweed 3G/day (1G 3x daily), Sida Acuta powder 1G/day (333mg 3x daily) and Morina/Noni powder 3G/day (1G 3x daily).
I also take: Chrysanthemum and Coptis both at 1G/day (333mg 3x daily).
Thanks, if you can help!
Jason
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Post by Admin/ Traveler on Jun 5, 2018 14:33:25 GMT
Well, I just refreshed my memory on what Buhner has to say about this herb. He suggests the tincture because that's what all the studies have been done on, and it's best to get both the root and leaves used in the tincture. So, I'm not sure if you still wish to use the herb powder? If so, I found an interview that Buhner did with Scott Forsgren ( Stephen Buhner, Lyme Treatment Update where he states "For Mycoplasma, Isatis tinctoria from Thorne Research at three 350mg capsules three times daily may be useful." So that would be right at 1,050 mgs daily. Here is some more information on this herb to help you avoid issues - also from Buhner's Bart book: "Root or leaf tincture, or combination thereof (tastes terrible) . . . As preventive: 30 drops up to 6x daily. For acute conditions: 1 teaspoon up to 10 times daily. In chronic, recalcitrant mycoplasma: ½ teaspoon 3x daily for 3 weeks, take a break of a week, resume, and so forth. Leaf: Occasionally nausea, rarely vomiting. Root: Rarely allergic reactions, urticaria, cyanosis of the face, dyspnea—but these were from intramuscular injections, there is no evidence of this from oral ingestion. However caution should be exercised in long-term use. Normally, you would not take isatis for longer than three weeks. This should be sufficient to deal with anything you have, especially if you have combined the herb with any of the others in this book. You can, if you wish, take a break, then begin again after a week or ten days off. You should avoid using the herb as a single medicinal if you are presenting with a subjective feeling of cold without fever. The herb can induce a deep chill with overuse (longer than three weeks). It should not be used by people on dialysis or those experiencing renal failure—high doses or long-term use may negatively affect the kidneys. You can use it for mycoplasma infections that are affecting the kidneys—just not if the kidneys are beginning to fail. Synergist with antibiotics and viral vaccines, increasing the activity of both. The herb may interfere with tests for measuring total bilirubin content." (I broke that up a bit for easier reading) I hope this helps!
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Post by Jason on Jun 5, 2018 16:43:30 GMT
Thanks that was helpful. I hope you are doing ok!
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Post by Admin/ Traveler on Jun 5, 2018 18:40:06 GMT
Oh good!!! I'm glad it was helpful! I wasn't so sure! LOL! Do let us know how you get along on this if you do choose to incorporate it into your routines! And, of course, you are more than welcome to poke around on this forum a bit and post more!
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Post by Jason on Jun 6, 2018 10:45:52 GMT
Will do, thanks again.
It’s funny after a little over a month of almost no symptoms I got a pretty bad sinus infection that required amoxicillin and then Bartonella symptoms started coming back. I was contemplating reducing my herbs not adding them.
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Post by Admin/ Traveler on Jun 6, 2018 15:46:43 GMT
Unfortunately, any kind of stress - like a sinus infection, or even happy stress like a wedding - can lower the immune system just enough to allow those buggers to be active again! So, do watch your stress levels, and if you aren't I would encourage you to support your immune system as well.
Best of luck with this! I do hope that you get those symptoms back under control quickly!!
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Post by Jason on Jun 6, 2018 17:06:11 GMT
Good advice. I'll probably hop back cat's claw and ABART, too for the immune support until things get back to homeostasis. Some day this will get back to remission for good. I am pleased that I was 99% there for 5 weeks though. The good to optimal stretches (where you don't event think about Lyme and Co) seemed to be increasing in length every month from 2 weeks to 3 to 5 since January, so I think (hope) progress is being made.
I guess that's why we (or at least I) keep logs.
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Post by Jason on Jun 6, 2018 17:26:20 GMT
* hop back on, that is
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Post by Admin/ Traveler on Jun 8, 2018 14:46:28 GMT
VERY GOOD!!! Congratulations on having reached that point and I hope that you get back to it quickly!!
Do let us know how you are doing!
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Post by Jason on Jun 12, 2018 12:53:21 GMT
The ABART challenge with the addition of isatis has certainly cause mood and symptom flares I haven't had in many, many months. So I'm kind of down now. I think of just tired of fighting this for years (I know I am talking to someone who has had it longer than I) with periods of feeling fine, then periods of not. When I'm feeling ok it takes many months to feel like maybe this is over and lose the constant fear of it returning. When I'm in a worse period, I fear it won't go away.
My wife, who is always supportive, told me recently she's lost hope I'll ever fully beat this.
I did recently contact an LLND (mentioned on Buhner's website - or not really "his" website) who is not far from me in CT to help manage my Buhner protocol. The LLMD I currently see, though a top ILADS doc has increased prices (doubled them) so I can't see him as much and the ND takes insurance. I also am not sure he is that familiar with Buhner/herbs beyond the mainstream conference retailers (Beyond Balanace, Byron White, etc). I won't see her until December and maybe this will be in remission by then, but it's something and maybe another opinion (though she did train with my LLMD).
Have you been doing better? I seem to remember you were symptoms free for awhile in 2013 or 2014 then something happened?
Sorry to vent, just so frustrated. I really thought a few weeks ago this was mostly over.
Jason
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Post by Admin/ Traveler on Jun 12, 2018 20:09:22 GMT
I've always assumed that the BW formulas like Abart, were quite potent from what I had seen that others had posted when they were trying it. I know for me, each time I have Bart flaring and am trying to get it back under control, I have a lot of brain inflammation (I have a lot of gut inflammation too, but that happens with anything that upsets the balance for me). I find upping my anti-inflammatories helps stabilize my mood again. You may be interested in at least talking to your docs about this.
Well, I can certainly sympathize with your thoughts! I think a lot of chronic Lyme patients can. Most of us that have chronic Lyme will continue to have to - at minimum - always be super careful to keep everything we can balanced and low stress, and live with the 'threat' that it can rear it's ugly head any time we don't get it quite right. I know for me, since no one has ever done any studies on those with these infections 40 - 50 years later, that there's no telling if I can beat this yet again or not - but that's not going to stop me from doing all I can to improve just as much as I can.
That's not to mention the hard times we go through when we are physically struggling. Seriously, when symptoms such as ours keep rearing their ugly head, why wouldn't it get us a bit down? I'm so sorry that your wife put voice to those thoughts, and yet I understand why. We can't stop though, we have to keep trying.
I always encourage people to get a second opinion (when possible) when they don't seem to be making improvements. A new set of eyes on a problem can often mean it's seen differently and different approaches can be helpful.
I was symptom free for about 2 years!! And it was glorious!! But, I had a ton of family stress come into my life (remember what I was saying above about stress??) - my FIL with late-stage dementia symptoms needed to move in with us, then after he passed (like in the DAY after), my Mom arrived and moved in with us. My relationship with my Mom is better than it has been, but it's still strained, so it was a lot of stress, even after I found her an apartment nearby. Within a few months of this, my adrenals started struggling, but I didn't know the signs, so I continued on.
A year after that, they were bottomed out and had taken my thyroid function down the tubes as well - then, while in town (pavement and stores!) I had another tick attach.....20 minutes after I removed it, symptoms started back up. The goofy part was I went into denial at that point, so I didn't treat for 3 months, while I wrestled with the thought of being reinfected and what that would mean to my life.
I believe I have Lyme and Bart now, along with mycoplasma. Maybe others, but the testing is so poor, and there are no LLMD's anywhere close to me that I can drive to on my own - so I don't see any sense in even spending the money on testing either. I know, I get super cynical about things at times, but......
And - this is a great place for venting!! I think it's safe to say that everyone here fully understands!!! And, we are all sorry that you were that close and had some symptoms return. I also believe I'm still speaking for all of us when I say that we hope that this turns around quickly and you will soon be symptom free. That's our wish for everyone.
Hang in there and please do let us know how you are doing!
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Post by Jason on Jul 9, 2018 13:28:00 GMT
Hi all,
Here is an update. I had 3 weeks of feeling basically fine, then I (think) got another minor cold and that started up some symptoms again. I had also stopped isatis after that 3 weeks (I had read to not use it for more than 3 weeks without a break).
These stretches of 2-3 weeks feeling fine (say 98-99%), then getting a cold or something and getting set back for a week or two (say 85-90%) are getting frustrating. So I'm hoping that is positive and they will slowly continue to get longer (the good) and shorter (the bad). I don't remember every having a pattern like this in the past.
My data shows basically I went from mostly bad and symptomy to mostly good with an occasional bad day or two. These stretches are different but maybe different means something is happening.
I'll update again in a while. I try not to post much because I have a weird superstition if I post when feeling well I'll feel bad again (coincidence I'm sure, but it has happened many times).
Jason
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Post by Admin/ Traveler on Jul 9, 2018 21:45:02 GMT
Hi all, Here is an update. I had 3 weeks of feeling basically fine, then I (think) got another minor cold and that started up some symptoms again. I had also stopped isatis after that 3 weeks (I had read to not use it for more than 3 weeks without a break). These stretches of 2-3 weeks feeling fine (say 98-99%), then getting a cold or something and getting set back for a week or two (say 85-90%) are getting frustrating. So I'm hoping that is positive and they will slowly continue to get longer (the good) and shorter (the bad). I don't remember every having a pattern like this in the past. My data shows basically I went from mostly bad and symptomy to mostly good with an occasional bad day or two. These stretches are different but maybe different means something is happening. I'll update again in a while. I try not to post much because I have a weird superstition if I post when feeling well I'll feel bad again (coincidence I'm sure, but it has happened many times). Jason Hi Jason! Thanks for the update! Well, what I can find is that you should use it for 3 weeks, take a week off, then restart it, according to Buhner in his Bartonella/Mycoplasma book (page 127): "In chronic, recalcitrant mycoplasma: ½ teaspoon 3x daily for 3 weeks, take a break of a week, resume, and so forth." And a just below that (same page): "However caution should be exercised in long-term use. Normally, you would not take isatis for longer than three weeks. This should be sufficient to deal with anything you have, especially if you have combined the herb with any of the others in this book. You can, if you wish, take a break, then begin again after a week or ten days off. You should avoid using the herb as a single medicinal if you are presenting with a subjective feeling of cold without fever. The herb can induce a deep chill with overuse (longer than three weeks). It should not be used by people on dialysis or those experiencing renal failure—high doses or long-term use may negatively affect the kidneys. You can use it for mycoplasma infections that are affecting the kidneys—just not if the kidneys are beginning to fail." Interestingly, Buhner also has this: "Note: The root is the most strongly antibacterial, the leaf the most antiviral. In the treatment of viral diseases I would use a tincture made of one-third root, two-thirds leaf" (very bottom of page 124). So, I'd say that you likely are struggling with viral issues - due to your statements. Buhner states that Isatis has these properties, besides being a really good antiviral: "Isatis is a potent antiviral plant. It is directly virucidal as well as inhibiting viral replication, inhibiting virus-cell attachment, and inhibiting viral neuroaminidase similarly to Tamiflu in potency. It potentiates the effectiveness of viral vaccines and is an immune stimulant, anti-inflammatory, antipyretic, antinociceptive, antiallergenic, tyrosinase inhibitor, antioxidant, antifungal, antibacterial, antiparasitic, antileukemic, antitumor, potent urease inhibitor, potent cross-class serine protease inhibitor, butyrylcholinesterase inhibitor, lipoxygenase inhibitor, antiendotoxin, dioxin antagonist (including against TCDD, the most potent)." (Page 124) LOL! I do understand, Jason! Although, please do realize, it really is just coincidence!! But, I too hesitate to post about a lot of things when I'm feeling good - because those same thoughts go through my head when I feel bad shortly after I've posted!! LOL!
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Post by Jason on Jul 10, 2018 10:05:31 GMT
Thanks for the reply. I am once again including the Isatis powder in my powder buhner herbal cocktail (just restarted yesterday after 10 days off). It is just the root so presumably has no effect in my cold.
I have no idea what is just a cold symptom and what is Bartonella anymore. I only have a few minor known Bartonella symptoms (and one new a tingling in my left foot). Sometimes I think I arriviste everything wrong with Bartonella but I’m sure that’s not the case and this is likely just a cold again.
I’ve also started cistus tea just because it feels like I should. It’s never done anything for me before but maybe this time is different. Starting at just one cup a day for now.
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Post by Jason on Jul 10, 2018 13:10:56 GMT
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Post by Admin/ Traveler on Jul 10, 2018 16:27:06 GMT
Are you using a good brand of Cistus incanus? For me, it hits my intestines hard, but that's my weakest point, so it only makes sense. I had come under a lot of stress over one weekend a month before last, and I had to completely stop it. Now, I'm still trying to work my way back up to full doses again, but I've lost some ground this time. It's hard to sort out our symptoms, and that's the best case scenario! Sometimes it's nearly impossible to figure out what's what too. I wouldn't have a clue if I had the flu or a cold either at this point. The only thing I have done that has helped me a bit is to know when there is a flu/cold that is going around in my area, and then I try to avoid going into town at all - and when I do, I keep my distance from people, and use a BUNCH of hand sanitizer every time I go into a store. Not likely the best approach, but so far it's working - as best as I can tell. I know that I haven't brought home any viruses that my husband has gotten, so I look at that as a good sign too. You aren't still fighting with Lyme disease are you? A low symptom day could easily feel like a cold/flu- as would a possible anaplasmosis or ehrlichia infection.
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Post by Jason on Jul 10, 2018 16:47:36 GMT
It's interesting you said anaplasmosis. It's something that's never come back positive in 10 years then when I picked up my labs a few weeks ago it said I had that. I'm not sure what exactly it is, but it looked like it was self limiting. Plus I was in a good 3 week stretch so I didn't think much of that. My temperature before Lyme (Bartonella technically) was around 98.3. After that I've been around 97.7. So waking to see I was at 96.4 (in one ear, 97.1 in the other) was concerning.
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Post by Jason on Jul 10, 2018 17:48:39 GMT
I've never had Lyme. It's always been bartonella, neurological (burning and numbness sensations).
To make it weirder, I only get leg burning sensations in pants, in shorts or in bed with a blanket, no problems.
I'd add a photo of my "wellness" chart so you could see the pattern and how it differs from my first relapse but I'm not sure how. Basically last time around "bad" days got less and less with no specific pattern (just a bad day here or there) after about 1.5 years I considered myself in remission.
This relapse started that way but then turned into a pattern after I started Buhner's bartonella protocol (see below starting 1/23/18). The ** are periods of a sinus infection like symptoms. The first was treated with antibitotics and rapidly diminished.
days rating 0-10 (daily ratings 10= symptom free, anything over 9 is basically symptom free but I'm scared to give it a 10). good 10 8.6 bad 30 5.5
good 15 8.4 bad 25 5.2
good 33 8.5 bad 12 6.2**
good 9 8.0 bad 9 5.8**
good 21 9.1 bad 6 6.9** (today)
So it appears the good are outnumbering the bad.
I also should mention from 11/16 to 4/17 I was only treating with BBAR2 drops. I stopped all treatment from 4/17 to 7/17 because a naturopath convinced me this was all stress until I got a new numbness in my jaw and I began to slowly introduce Buhner's herbs on my own and went back to my pricey LLMD. In late December introduced houtyanna and the full Buhner Bart protocol as well as ABART drops.
A total aside, it appears I was complaining about sinus symptoms in December after starting the Bart protocol, then again in March, April, May, and now July. Sorry to brainstorm here, but the reflection and compilation of my journal made me aware of this. That might be meaningful considering I had/have MARCONs?
I'll have to note this and talk to the LLMD.
Thanks for letting me brainstorm, maybe my singular thread will help someone else some day?
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Post by Admin/ Traveler on Jul 10, 2018 22:01:44 GMT
Well, I'd caution you about thinking that Anaplasmosis is always self limiting or not an issue. Serious consequences have happened for some that have gone untreated. I'm not trying to scare you, but don't discount a positive test for any of these infections. Anaplasmosis can be a very serious infection for some, although it may not be for you possibly. Even the CDC recognizes serious issues with this infection: CDC Anaplasmosis Have you been tested for mycoplasma as well? This is another infection that is fairly common to those with these infections as well, and can easily live in the sinuses, causing infections to rise up every time your immune system dips down possibly. It's just another thought you can chase down though. Dr. Rawls, mycoplasma As pointed out in that article, testing for every strain of mycoplasma may be very expensive though, so it may be best to see if you respond to treatment instead of testing? I would encourage you to talk to your LLMD about this possibility, as they should be able to help you determine if it's likely or not. The other option is to concentrate more on healing the immune system and allow it to take care of those infections. This is mainly where I am in my treatments. For me, I can see that just going after the bacteria/viruses and stuff isn't enough, so I'm working on healing/gently boosting my immune function. It may be something missing in your protocols that could make a difference??? Just tossing it out there for consideration is all. And, that's what I hope for too! That each of these threads will help others some day! Unless the obvious happens, and we get these diseases properly recognized and find the right treatment options to really deal with them. Ha! Okay, a girl has to have a dream, right???
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Post by Jason on Jul 11, 2018 10:14:30 GMT
My LLMD said the anaplasma lab came back positive for a past infection not current but he wants to put me on MCBB1 to ensure it and yersini are gone.
Other than that I’m sure we’ll work on my immune system. In the past I was on LDN and it seemed to help as well as some kind of hemp oil. We may do that again.
Overall I feel I am close. The ABART symptoms aren’t that bad but may be exacerbated by these colds (the coughing, congestion, and sore throats never help).
Jason
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