fflutterby
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Member # 28081
posted
Having a really bad week. Heart palps, severed air hunger, seizure like episode in grocery store. I had a stretch of pretty good days. Yesterday I stopped the mepron and Crypto and woke up with that heart pounding again. Trying to figure out if I ramped up on the crytpo too quickly. Not sure what to do today.
Should I continue the mepron and Plaquenil for a few days and start very slowly with the crypto. Or should I stop Mepron for a few days also?? I must be hitting Babs hard. So hard to figure out. Period should be coming too any day now as well.
-------------------- Psalm 46 1 God is our refuge and strength Posts: 1367 | From North Jersey | Registered: Sep 2010
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fflutterby
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posted
Well I took it all, more afraid not to take anything. Went down to 1/4 tsp of crypto though...My air hunger and shakiness is through the roof. I feel so strange. Maybe I am really killing alot with this combo? I hope I get a good recovery from this herxing, cause boy I could never work like this. Thank God I am off for three days. I could use some encouraging words right now, I am pretty scared.
-------------------- Psalm 46 1 God is our refuge and strength Posts: 1367 | From North Jersey | Registered: Sep 2010
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posted
Hang in there. I just started Crypto and upped my dose to a full teaspoon ....2x a day. I was up last night with heart palpitations, and an overall racy feeling. Im also in so much knee pain and muscle pain/weakness....I also increased my mino dose and decreased my zith a few weeks ago so im not sure what it's from..maybe a combo of everything. I also notice an increase in air hunger lately.
I might have to back off on something if the pain doesnt get better soon, it's unbearable. I think in my eagerness I upped my crypto dose too quickly. Maybe we should stay a few weeks at each level and increase very gradually? I think you did the right thing by dropping your dose back to 1/4 tsp.
Praying for you and hang in there, this too shall pass. I keep telling myself that Im going to come out of this feeling so much better than before.
-------------------- Psalm 119:50 My comfort in my suffering is this: Your promise preserves my life. Posts: 292 | From Heaven | Registered: Jan 2011
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fflutterby
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posted
I did the same !!!! Yeah I was also over eager, I went full dose Plaquenil one week, Full tsp Mepron and went full dose on Crypto the next. I was on the ledge last night, totally understanding why some people commit suicide.
I will keep my plaquenil at full dose and do 1/4 tsp crypto and 1/2 tsp of mepron and see what happens. I am sure we are killing this sucker ! Lets stay in touch and and go steady increasing one thing at a time.
I have to take care of my kids and I must work so slow and steady has got to win the race for me, no bones about it!
I love your sig, God is the only thing getting me through this. He is my strength and song.
-------------------- Psalm 46 1 God is our refuge and strength Posts: 1367 | From North Jersey | Registered: Sep 2010
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17hens
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posted
I'm not on anything nearly as strong as you ladies so I feel rather sheepish here, but I wanted to say I am praying for you both.
I started cryptolepis on Sunday evening at 1/2 tsp. No problem so on Monday I did 1/2 tsp 3xday and all my babesia symptoms were gone - fabulous!
Tuesday I went to full dose, 1 tsp 3xday and still felt great. Wed. I felt a little sumtin-sumptin.
Thursday was like a woosh! That day took AM dose on empty stomach. What was I thinkin? Brain fog turned my brain to fudge, couldn't uncross my eyes, trying to catch my breath with the airhunger, and fatigue like a train hit me. Arms and legs and neck just wanted to lay down and not move.
Yesterday and today I'm still fatigued and fuzzy headed although not nearly as badly. I learned quickly to take it with food.
I am not on meds and have been drinking tonic water for the quinine. I've found that the tonic actually helps alleviate symptoms the crypto brings on. And coffee enemas are the bomb. They give me relief for a few hours after my morning dose of crypto.
I realize I'm not nearly as bad off as you two are so it's easy for me to say maybe, but I'd take this 6 times a day if I thought it would be more likely to get rid of this beast. I'll do whatever it takes. (But I don't have to work - see it is easier for me to say this.)
So, I don't know how any of that helps you two, except that I'm feeling for you.
I've also had pain deep in my pelvis today. I remember having that years and years ago, like 20+? Something tells me this beast has been living in me for a very long time and maybe now I'm waking him up.
Isaiah 43 Israel�s Only Savior 1 But now, this is what the LORD says� he who created you, Jacob, he who formed you, Israel: �Do not fear, for I have redeemed you; I have summoned you by name; you are mine. 2 When you pass through the waters, I will be with you; and when you pass through the rivers, they will not sweep over you. When you walk through the fire, you will not be burned; the flames will not set you ablaze. 3 For I am the LORD your God, the Holy One of Israel, your Savior; I give Egypt for your ransom, Cush[a] and Seba in your stead. 4 Since you are precious and honored in my sight, and because I love you...
-------------------- "My flesh and my heart may fail, but God is the strength of my heart and my portion forever." Psalms 73:26
bit 4/09, diagnosed 1/10 Posts: 3043 | From PA | Registered: Dec 2009
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fflutterby
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posted
Hens, I guess we are the crypro club. I was near tears when I read your post. Thank you so much. I know He loves us. I know this is going to be okay. I think I am doing too much.
Ended up, the meds went through me. Flushed down the toilet. What a waste. I just got done with a coffee enema. But couldn't hold it longer than 5 minutes. I have no idea what to do now, I was being brave and then it went right through me. Yes, I did take it with my oatmeal and 2 tbsp of coconut oil.
-------------------- Psalm 46 1 God is our refuge and strength Posts: 1367 | From North Jersey | Registered: Sep 2010
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17hens
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posted
What went thru you? The mepron?
I never fight an enema. I've been doing them for months now and somedays I can hold them, somedays not. I figure God has a plan and a reason even for coffee enemas, so I don't sweat it.
I do find them easier to hold when they're just below hot (not enough to burn of course). When they get too cool, I can't hold them for the life of me.
Don't worry of the meds were flushed. Really, in the scheme of things, you won't remember those meds in a week or in a year. And I'm sure the Lord had a reason for that too - taking care of you when you didn't even know it.
-------------------- "My flesh and my heart may fail, but God is the strength of my heart and my portion forever." Psalms 73:26
bit 4/09, diagnosed 1/10 Posts: 3043 | From PA | Registered: Dec 2009
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beths
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posted
I just started the crypto too!
I'm a chicken-just up to 10 drops!
Posts: 1276 | From maryland | Registered: Jan 2009
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17hens
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posted
No, no, you're not a chicken. We each should only do what is OK for our bodies and most on this board need to go slow.
I'm not that sick at all anymore and I hate to say it but even when I was quite ill, I could handle everything well (famous last words, right?). It's normal for me to go up this quickly on something. I just took my 2nd tsp of the day and feel fine, so the symptom flare is not constant for me.
Please do not compare yourself to me and whatever you do, don't think yourself a chicken! If you are listening to your body, then you're wise for going slow.
-------------------- "My flesh and my heart may fail, but God is the strength of my heart and my portion forever." Psalms 73:26
bit 4/09, diagnosed 1/10 Posts: 3043 | From PA | Registered: Dec 2009
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fflutterby
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posted
Hens, God bless your heart. You are an angel, thanks for reminding me about Gods plan.
I think it was the zith though causing it, My days on the zith are the days everything goes through me. Not all the time but sometimes. I went to every other day for that reason. I am thinking of asking to switch to Biaxin next.
beths, welcome to the club !!! Hold on tight. Stay at 10 drops for a week, make sure you can handle it before ramping up.
Lets all kick some Babs butt !!
-------------------- Psalm 46 1 God is our refuge and strength Posts: 1367 | From North Jersey | Registered: Sep 2010
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fflutterby
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posted
How are we doing ? I have to say that yesterday after my coffee enema and epsom salt bath, I had a pretty good night !
Happy New Year !!
-------------------- Psalm 46 1 God is our refuge and strength Posts: 1367 | From North Jersey | Registered: Sep 2010
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fflutterby
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posted
Have to go back to work and I am feeling horrible on only 1/4 tsp. Sweats getting worse, air hunger and head pressure. I am angry and praying that God will give me a little relief so I can work in the AM.
-------------------- Psalm 46 1 God is our refuge and strength Posts: 1367 | From North Jersey | Registered: Sep 2010
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canefan17
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posted
I think some of these herbs stir up the coinfections.
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beths
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Member # 18864
posted
50 drops= 1 tsp.
Is that correct (5 ml = 1 tsp)?
Posts: 1276 | From maryland | Registered: Jan 2009
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17hens
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posted
I think it's 120 drops. that's what measured out for me as 1 tsp.
-------------------- "My flesh and my heart may fail, but God is the strength of my heart and my portion forever." Psalms 73:26
bit 4/09, diagnosed 1/10 Posts: 3043 | From PA | Registered: Dec 2009
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150 drops = 1 teaspoon. 1 dropper = 30 drops and 5 droppers full = 1 teaspoon.
5ml = 1 teaspoon so a 1 ounce bottle (30 ml) only has 6 teaspoons in it.
There is some slight variation in how many drops there are in a dropper of herbs depending on the thickness of the liquid but when dealing in teaspoon doses a little bit more or less is not really that big of an issue.
Hubby eventually took 15 droppers or 1 tablespoon (1/2 ounce) 3 times daily back when he used this herb the first time in 2009. It really helped his babs and bart, but at that time the herb became unavailable for several months and when we tried to repeat the experiement it only seemed to aggravate hubby at higher doses -- caused burning head pain so he could never get back to a therapeutic dose.
I think the herb does work on both babs and bart, but only at higher doses and not sure how long you would need to take it to really erradicate an infection -- think it could take several months and still not sure it would really work without other meds or herbs.
Based on hubby's experiences both babs and bart require multiple high dose meds for extended periods of time.
Hubby always took this on an empty stomach in a little hot water to evaporate the alcohol. To really be absorbed effectively I do not think it should be taken with food. Hubby does take all herbal capsules and powders with food -- but not tinctures.
Bea Seibert
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
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posted
I don't know exactly what to say but hang in there and keep at it. If you have babesia it takes a long time to get rid of. Also, don't go up too quickly on the medications. Ramp up slowly. The air hunger, chest pressure, fatigue and dizziness was all babesia for me.
It took me a long time to get it under control. Still treating intermittently. Once you get the bug load down you won't have such strong herxes.
I started 3 and a half years ago treating babesia and it was really hard at first! The anxiety was terrible as well. I started with Mepron and ended up taking 5tsp daily. I rotated in Bactrim during that time as well as artemesia. Then I switched to 5tabs of Malarone and Biaxin. Every couple months I did coartem. Then recently I have done the cryptolepsis 50 drops 3 times a day.
Good luck to all of you. Keep at it. I does get better. I always had to go at this stuff slow otherwise I couldn't handle it. Its a marathon! I will say that after all of that I still treat intermittently but most of my days are 80-100% normal. I can also tolerate high doses now something I was never able to tolerate the first year or two of my treatment.
beths
Frequent Contributor (1K+ posts)
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posted
I'm up to 25 drops and actually feeling better-does anyone take it with out malarone/mepron?
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Amanda
Frequent Contributor (1K+ posts)
Member # 14107
posted
Where is everyone getting their cryptolepsis? I can not find it for sale anywhere.
Thanks
-------------------- "few things are harder to put up with than the annoyance of a good example" - Mark Twain Posts: 1008 | From US | Registered: Dec 2007
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fflutterby
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posted
I had to stop it, I have been feeling horrible ever since I started it/ I am trying to increase my mepron dosage and cannot handle that either. Feeling very awful.
posted
I'm taking cryptolepsis 3x a day full tsp for about two months and I haven't been this functional in a long time.
After the herx, my air hunger is better, my energy level better, and brain much clearer.
I think it even helped my vertigo.
I take it with malarone, which I've taken for a long time, so I might be resistant to the malarone.
Stick with the crypto...I really think it's helping.
I just wonder if it actually cures babs, or only works when you're taking it.
-------------------- RI Posts: 440 | From New York | Registered: Sep 2005
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fflutterby
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posted
talktel, how long did your herx last ?
-------------------- Psalm 46 1 God is our refuge and strength Posts: 1367 | From North Jersey | Registered: Sep 2010
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tricia386
Frequent Contributor (1K+ posts)
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posted
I am about a week into Crypto I herxing my a$$ off. Increase air hunger. Its a pretty immediate herx from when I take it.
-------------------- Lyme activated in April 2010 by gardasil vaccine. DX: Lyme,Babs,Myco,Bart 11/10 Treatment Started: 3/28/11 Posts: 1752 | From Albany, NY | Registered: Dec 2010
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17hens
Frequent Contributor (1K+ posts)
Member # 23747
posted
quote:Originally posted by 17hens: I think it's 120 drops. that's what measured out for me as 1 tsp.
You know, I called Woodland Essence to ask a question and was told 1/2 tsp = 30 drops. Go figure. If that's the case, then I took 6 tsp (120 drops 3xday) a day for 30 days. And I felt great.
When I went down to 20 drops a day (1 tsp) a day, symptoms returned. I went up to 30 drops 3 times a day and a few days even 40 drops 3x day and still symptoms.
After 2+ months of crypto daily, am I immune to it now? Do I need to be patient and keep taking it? I wish I knew what all this meant.
What I wouldn't give to feel like I did when I was on full strength.
-------------------- "My flesh and my heart may fail, but God is the strength of my heart and my portion forever." Psalms 73:26
bit 4/09, diagnosed 1/10 Posts: 3043 | From PA | Registered: Dec 2009
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tricia386
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posted
Is crypto toxic
-------------------- Lyme activated in April 2010 by gardasil vaccine. DX: Lyme,Babs,Myco,Bart 11/10 Treatment Started: 3/28/11 Posts: 1752 | From Albany, NY | Registered: Dec 2010
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Tricia, I see you also posted a thread with this same question. My note from other there where you said you have read conflicting reports:
- Cryptolepis sanguinolenta is not toxic to humans (but is cytotoxic to certain protozoal infections) when used correctly as an herbal tincture according to direction from one's LLMD.
It has valuable potential.
I've used it myself and have done very well with no problems at all. As with everything I consume, I've researched this as much as possible.
I've never seen any credible author discuss problems. Still, I'd really like to see what you read.
Can you post the link(s)?
It's important to see where that has been written, by whom and and exactly in what context. There may be a simple explanation.
Clinical efficacy of a tea-bag formulation of cryptolepis sanguinolenta root in the treatment of acute uncomplicated falciparum malaria.
Bugyei KA, Boye GL, Addy ME.
Department of Pharmacology, University of Ghana Medical School, College of Health Sciences, University of Ghana, Accra, Ghana.
Excerpt:
Conclusion:
On the basis of fever clearance and disappearance of parasitaemia by Day 7, the formulation has been shown to be non-toxic and highly effective in the treatment of acute uncomplicated malaria. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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17hens
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posted
I dont' mean to hijack this thread - please tell me if I am.
Today I took only Artimisinin and had no symptoms besides a bit of air hunger. Maybe the crypto is not working for me right now. Maybe it's just because it's the last day of my period and I usually have very minor symptoms about now.
I hope I don't sound like I'm complaining. It's just that going from virtually no symptoms to getting some back, it's frustrating. I've had babesia for a very long time though (15+years) so I suppose it's going to take a while to get rid of it. Patience is a virtue (reminding myself).
-------------------- "My flesh and my heart may fail, but God is the strength of my heart and my portion forever." Psalms 73:26
bit 4/09, diagnosed 1/10 Posts: 3043 | From PA | Registered: Dec 2009
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fflutterby
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posted
Praying for you Hens ! You can hijack any of my threads anytime. xoxo
-------------------- Psalm 46 1 God is our refuge and strength Posts: 1367 | From North Jersey | Registered: Sep 2010
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nonna05
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posted
still can't find a way to buy it.... anybody?????
Also will HH capsules kinda help same things??/
Posts: 2563 | From Denver,CO | Registered: Aug 2011
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17hens
Frequent Contributor (1K+ posts)
Member # 23747
posted
Nonna, I know. I was getting ready to stay up until midnight to order my next batch as my husband has started it and hoping for my daughter next. Now I see we can't order until March 7. So disappointing.
-------------------- "My flesh and my heart may fail, but God is the strength of my heart and my portion forever." Psalms 73:26
bit 4/09, diagnosed 1/10 Posts: 3043 | From PA | Registered: Dec 2009
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tricia386
Frequent Contributor (1K+ posts)
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posted
Infuserve America is where my doctor got it from.
-------------------- Lyme activated in April 2010 by gardasil vaccine. DX: Lyme,Babs,Myco,Bart 11/10 Treatment Started: 3/28/11 Posts: 1752 | From Albany, NY | Registered: Dec 2010
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tricia386
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posted
I didnt think babesia was suppose to make you herx.
-------------------- Lyme activated in April 2010 by gardasil vaccine. DX: Lyme,Babs,Myco,Bart 11/10 Treatment Started: 3/28/11 Posts: 1752 | From Albany, NY | Registered: Dec 2010
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- I think infections other than those caused by spirochetes can cause herxing but - very often - it's just that any of these infections are rough and so it treatment. It's far from a walk in the park, under the best of circumstances.
Likely, reactions could be signs of the LIVER (or kidneys) being overwhelmed.
You may need different liver/kidney support or methods. You may need to cut back on "detoxing" and focus just on support measures.
Or to cut back on treatment doses if it's too severe for your body at this time. I hope your LLMD's office can offer some guidance. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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17hens
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posted
tricia, just a question out of sheer ignorance - why would Infuserve America have cryptolepis? I looked them up and didn't see anything about herbs.
-------------------- "My flesh and my heart may fail, but God is the strength of my heart and my portion forever." Psalms 73:26
bit 4/09, diagnosed 1/10 Posts: 3043 | From PA | Registered: Dec 2009
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Keebler
Honored Contributor (25K+ posts)
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posted
- 17hens asks: "why would Infuserve America have cryptolepis?" ----------------------------
Yesterday, I had a nice phone conversation with Randy, the compounding pharmacist who makes this there. He's very interested in lyme and his being able to obtain this has helped some LLMDs get this to their patients.
He has attended some of the ILADS conferences - (he noted one in California where he met several LL NDs from my state). He's been in direct communication with Dr. H, who has the most knowledge of this for babesia.
He said he will be glad to email or talk with anyone who has a question.
They have it in stock now.
It MUST be ordered by one's MD or ND (or a doctor with similar medical credentials).
Patients cannot order this themselves
(this differs from the other two suppliers: Woodland Essence and Green Dragon Botanicals - both of which are currently - and often - out of stock due to supply limits.)
A one month supply in a pharmaceutical-grade substantial weight, amber plastic bottle.
One 450-ml bottle is $90.
3-day shipping included - that measures out to the top dose of 1 tsp. 3 x day, a one month supply.
In Stock, as of yesterday and he expects their supply to be okay (paraphrasing here).
They make this a bit differently by adding some ESSENTIAL OIL OF PEPPERMINT to improve the taste. No artificial flavors, though, he assures.
Their tincture may be darker than the other two suppliers' of this as sometimes they make it from a concentrated powdered root, rather than "steeping" the root for themselves (but that is also done there at times).
posted
i wonder if the "prescribed" administration of this herb is what is effecting availability thru companies like woodland essence?
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