Questions for Pirouette Re Pure Nystatin Powder-Thanks!

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Lymie Girl
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Date Joined Jan 2015
Total Posts : 1332
   Posted 6/25/2015 12:03 PM (GMT -6)   
Hi P~
First, I want to thank you for sharing your wealth of knowledge regarding fungal / yeast issues. I recently started taking large amounts of tinctures (3 x a day) for Babesia. I really believe I'm having yeast issues. It seems to be too much for me.

I would really like to get the Pure Nystatin Powder. I called a few compounding pharmacies this morning. Mostly, the people seem confused about what I'm requesting. The last guy said he knows what I want. But, he quoted 2 billion units and told me that it would cost about $75. He said it is pure-no sugar or other fillers. He said most insurance companies do not cover it.

This seems kind of pricy to me. I'm not sure if it is a fair price. I sent you an email. I hope that is all right. Would you mind sharing your pharmacist with me? I would appreciate any guidance you can offer. I want to make sure I get the right script.

Thank you! I hope you're doing well. I have not seen you post in a few days. It is so generous of you to help all of us with yeast problems!

Dancingbear*
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Date Joined Oct 2014
Total Posts : 556
   Posted 6/25/2015 3:11 PM (GMT -6)   
I am sure Pirouette will get back to you, but I just wanted to send some of the knowledge she gave me when I was in your boat 2 short weeks ago.

Do you have a doctor that will write you a script? Also, have you seen this dosing chart? It is very helpful.
http://www.drmyhill.co.uk/wiki/Nystatin_-_how_to_take_it

You can show this to your doctor and see if he will write a script that corresponds with this dosing. Go slow in the beginning. I thought I was fine and then on day 3 holy herx!

I was going to contact a compounding pharmacy but thought I'd give my local small town pharmacy a try. The Nystatin comes in a 50,000,000 bottle. I told them what I needed and they ordered it for me. I had to explain myself and it took about a 1/2 an hour but they got it. then, I could not believe this, but my insurance covered it. So don't listen to that guy.

If you cannot get insurance to cover it, I remember P saying that 1 bottle is about $50.00.

Good luck. I am not expert, but I have learned a lot from P so if you have any other questions before she signs in, let me know.

DB
diagnosed October 2014. I am pretty confident that I have been infected since the summer of 2006. I also have hashimoto's/hypothyroid and SIBO.
IgM 18+ 23-25 IND 28+ 30- 31++++ 34IND 39++ 41+++ 45- 58++ 66- 83-93++
IgG 41 IND

Lymie Girl
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Date Joined Jan 2015
Total Posts : 1332
   Posted 6/25/2015 4:28 PM (GMT -6)   
Thanks DancingBear! My doctor is going to mail me a script.

After I get it, I will ask a few places what they will charge and see if my insurance will cover it. So far, most of them don't seem to understand what I want. I will have to make sure that they order the right powder. One lady told me what they sell comes with talc powder. I told her that I don't want any fillers or sugar. She said that they could order it. I still don't know whether she knows what I want.

I also did not know how much it costs. So, that is good to know. Based on what you told me, $75 seems a little high.

Thanks! :)

Lymie Girl
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Date Joined Jan 2015
Total Posts : 1332
   Posted 6/25/2015 8:19 PM (GMT -6)   
Yay Mister Mike! I hope you get it filled.

I'm really hoping the powder will allow me to take my tinctures. I'm trying really hard to kick some bug butt!!!

Dancingbear*
Veteran Member


Date Joined Oct 2014
Total Posts : 556
   Posted 6/26/2015 7:55 AM (GMT -6)   
Mike, hope you get it filled with no trouble.

Lymie Girl, I talked to my pharmacist and she said that the Nystatin pure powder is what doctors use to prescribe all the time and only recently (maybe the last 10 years) that they have gotten away from that. Interesting. If you need me to, I can take a picture of my bottle and send it to you via e-mail. Just let me know. Also, are you going to follow the dosing chart? If so, when you get to the top amount you will need a new bottle about every 10 days. I just talked to my doctor yesterday and he re-wrote his script to that effect. Hopefully my insurance will cover it when I get to that amount.

Also, what symptoms do you have left and how long have you been treating? I have a thread on here about my experience with the Nystatin up until a few days ago. I got pretty sick. I also started making my own Nystatin pills which really is helping. When you mix the powder with water and drink it , it is the nastiest thing I've had to drink up until now. And I have drunk some really nasty crap ;)

Please keep us posted on your progress, I would like to know if you respond like I have. The one thing that I am very interested in is how you feel right after you take it. Right after I take it I feel a little nausea, a little dizzy and yucky. It usually passes after about 1/2 an hour. Also, I am not sure if it matters if I take it with food or with out. If I take it without, I feel worse.

Good luck!
diagnosed October 2014. I am pretty confident that I have been infected since the summer of 2006. I also have hashimoto's/hypothyroid and SIBO.
IgM 18+ 23-25 IND 28+ 30- 31++++ 34IND 39++ 41+++ 45- 58++ 66- 83-93++
IgG 41 IND

marigold33
Regular Member


Date Joined Aug 2012
Total Posts : 399
   Posted 6/26/2015 11:59 AM (GMT -6)   
Mike, so dr. M prescribed you the nystatin that you prefer to take? And it's different from the mycostatin that he prescribed for me a couple weeks ago? And... Do you have to get it at a compounding pharmacy? Wondering if I should pursue this or just take the mycostatin that I have in hand. I'm finishing up the 2 weeks of diflucan he wanted me to do (didn't notice anything.. Maybe that means I don't have yeast?) and am supposed to start my mycostatin next week.

Lymie Girl
Veteran Member


Date Joined Jan 2015
Total Posts : 1332
   Posted 6/26/2015 1:42 PM (GMT -6)   
Thanks for your help Dancingbear! I really appreciate you stepping in to help me. It would be fantastic if you could email me a picture of the bottle. Thanks!!!

I did not realize that the dosing gets that high. I have not had a chance to look at the chart in detail yet, but I will. Does everyone take a dose that high? Or is that only if you have a significant yeast problem? I'm trying to learn what I need to do. I hope your insurance covers the higher doses.

I still have a lot of symptoms. I'm treating Lyme, Babs and Bart. I am having a lot of Babesia symptoms right now. I also wonder if I have mold issues. I'm working on Babesia right now. I will talk to my doctor about my mold concerns soon. I'm starting to remember and learn things that make me wonder about mold. Mold can also make other fungal issues much worse. Since the symptoms overlap so much, it is really hard to know with certainty what is what. I'm going to test for Babesia. I hope that the yeast issue does not throw off my results.

When I started taking large doses of tinctures, I really noticed the yeast kick in. I started getting itchy. I have had itching before, but it improved with Lyme treatment. This is different and I believe it is yeast related. I also recently started getting a sore throat, which could be yeast. With so much going on, I cannot say for sure what is what.

I want to do what I need to do to get the yeast in check and take my medications so I can heal. I always have problems with tinctures due to the alcohol. I don't tolerate it-it causes nausea. The large tincture doses are messing me up.

Thank you for stepping up here to help me out! I greatly appreciate it. =)

Dancingbear*
Veteran Member


Date Joined Oct 2014
Total Posts : 556
   Posted 6/26/2015 2:22 PM (GMT -6)   
Lyme Girl, I love it when I can help someone. I would not be where I am today with out people from this forum helping me. This place is so awesome.

P gave me that dosing chart and she said you have to hit yeast hard and fast. I plan on adhering to the dosing chart.

Also, if you have yeast/Candida you will want to change your diet drastically which really sucks! Sense determining that I have Candida I have cut out all sugar including fruit and all grains and starches. There are a lot of diets for Candida on the net. Some are different so you have to really look into it. I actually bought approved food list from

http://wholeintentions.com/recipes/candida-diet/. It was only $1.99 and it seems worth it.

My diet now is about 60% fat. I am getting use to it.

I think I had some die off from just removing sugar. Diet is huge with Candida.

You will know if you have a yeast problem when you start taking the Nystatin. You will either herx or feel better. I didn't herx till day 3 or 4 and it sucked.

Sense I have been on the Nystatin all my symptoms have changed. Mostly in a good way. I can tell it is working. Maybe some of your symptoms that you don't think have anything to do with yeast will clear up.

let us know. Hopefully P will chime in. She has been referred to as "Yeast Master." I hope she doesn't mind that.

If you end up figuring you have Candida, the next step would be to get your doctor to prescribe a systemic anti-fungal. Keep that in your back pocket for now.

Keep me posted as I just started on this yeast path very recently and maybe we can compare notes. I will take a picture of the bottle tonight and e-mail you.

Pirouette
Veteran Member


Date Joined Mar 2014
Total Posts : 6201
   Posted 6/26/2015 4:18 PM (GMT -6)   
Lymie Girl

DancingBear* already gave you some great responses but I responded to your email. I hope it helps.

Regarding the dosing, most MDs won't prescribe more than 3/16 to 1/2 teaspoon per day for some reason… likely due to a lack of knowledge and experience w/ yeast/fungus. You do need to hit the yeast hard and fast, which is why Dr Hill's dosing chart titrates quicklime and coincides w/ most other info I've read online. But I think the starting dose on that chart is too high, particularly for those of us w/ detoxing issues. So I'd start with 1/16 teaspoon per day and slowly increase doses AND detox and you'll have some die off and herxing but increase as much as you can handle.

Also, going by that chart means you're going to run out of the powder! So, I explained to my MD that I wanted to go by the chart and as long as I was gaining traction and making an impact, she was willing to increase the doses on my Rx… hope you can convince your MD the same. After a couple of months if you're at the high dose and not experiencing anymore y/f sx, then I think it;s OK to step the doses back down. But you will need to continue the sugar/simple carb free diet for quite awhile… years even.

DB*
Great posts, I think your thread sharing your experience is really helpful to others. Hope you're doing a little better w/ the die off. Filling the capsules is a great idea because the powder tastes like clay and dirt, and sometimes I can get overwhelmed w/ nausea before even being able to swallow. My their on that is that the fungus is all connected, like a biofilm or a piece of fabric that is connected and it all communicates w/ each other. there is a great scientific descriptor for this but I'm going blank on that.

Anyway, once the fungus on your tongue gets hit w/ the powder, it is immediately killed, which causes immediate die off and the communication along the "fabric" of the fungus reaches your stomach and causes the nausea… Or maybe that's crazy! ;)

Just wanted to add that if you're still having any sx in your mouth/ throat you might still need to swish some powder around in your mouth. Eventually, if you are killing the root cause of the y/f in your stomach you'll kill everything in your mouth off as well but sometimes this takes the direct kill in the mouth too. Maybe you're past that stage.

MM
Huge progress! Fingers crossed that you have some success w/ the powder.

p
Chronic late-stage lyme—likely infected in 2000; Clinically dx 3/2014 w/ Babesia, tested positive for Bartonella, CDC-positive for Borellia. Multiple viruses and GI/immune treated first; started AL-Complex in May; started A-Bart and A-Bab in July; have IV port installed and started on Rosephin.
Detox: Pinella, Burbur, Parsley, Milk thistle seed, Burdock root tinctures; japanese knotwee

Lymie Girl
Veteran Member


Date Joined Jan 2015
Total Posts : 1332
   Posted 6/26/2015 4:43 PM (GMT -6)   
Thank you Dancingbear* and Pirouette! You both have been so helpful.

I have problems from taking tinctures due to the alcohol. Should I be able to continue taking the tinctures after I start on the powder? I have such an issue with the alcohol in them right now. I need to be able to treat so I can get better.

I'm trying to put this puzzle together so I can get the right treatment and heal.

Also, if anyone has an opinion on whether yeast will impact a blood draw for IGENEX, please feel free to chime in. My doctor does not think so.

Thank you so much!!!! You're both so awesome for helping me out. cool

Pirouette
Veteran Member


Date Joined Mar 2014
Total Posts : 6201
   Posted 6/26/2015 5:06 PM (GMT -6)   
While the alcohol isn't ideal, you should keep taking the tinctures. I put my tinctures in water and let them sit for an hour or so before drinking… not a fix but it does help allow some alcohol to evaporate.

I doubt you'll have any issue w/ IGeneX test.

p
Chronic late-stage lyme—likely infected in 2000; Clinically dx 3/2014 w/ Babesia, tested positive for Bartonella, CDC-positive for Borellia. Multiple viruses and GI/immune treated first; started AL-Complex in May; started A-Bart and A-Bab in July; have IV port installed and started on Rosephin.
Detox: Pinella, Burbur, Parsley, Milk thistle seed, Burdock root tinctures; japanese knotwee

Lymie Girl
Veteran Member


Date Joined Jan 2015
Total Posts : 1332
   Posted 6/26/2015 5:23 PM (GMT -6)   
Thank you P!

I have been working on letting them sit, but it seems like things were going downhill from the amount of tinctures I was taking. I will keep taking them and get tested next week for Babesia.

I'm wondering if I have mold and that is making me more sensitive to fungal issues. I have had reactions to eating mushrooms. I think mold makes a person more sensitive to fungus and candida issues. I will look into mold soon. It's so interesting that you say that the fungus communicates through some kind of neural net.

Thanks again! yeah

Pirouette
Veteran Member


Date Joined Mar 2014
Total Posts : 6201
   Posted 6/26/2015 5:28 PM (GMT -6)   
You might want to reach out to Mister Mike. If I recall correctly, he had issues w/ the tinctures as well and made some adjustments but can't remember what he did.

p
Chronic late-stage lyme—likely infected in 2000; Clinically dx 3/2014 w/ Babesia, tested positive for Bartonella, CDC-positive for Borellia. Multiple viruses and GI/immune treated first; started AL-Complex in May; started A-Bart and A-Bab in July; have IV port installed and started on Rosephin.
Detox: Pinella, Burbur, Parsley, Milk thistle seed, Burdock root tinctures; japanese knotwee

Lymie Girl
Veteran Member


Date Joined Jan 2015
Total Posts : 1332
   Posted 6/26/2015 5:30 PM (GMT -6)   
Thanks P! I will ask him.

It's so funny that we take our meds and then we have to take other meds to deal with problems from our meds. I feel like we're stuck in a cycle. Haha!

Dancingbear*
Veteran Member


Date Joined Oct 2014
Total Posts : 556
   Posted 6/26/2015 6:05 PM (GMT -6)   
Hey P, i read that you feel like the Nystati powder tastes like dirt and clay, to me it has a very chemical taste. I hope I am taking the right stuff,
diagnosed October 2014. I am pretty confident that I have been infected since the summer of 2006. I also have hashimoto's/hypothyroid and SIBO.
IgM 18+ 23-25 IND 28+ 30- 31++++ 34IND 39++ 41+++ 45- 58++ 66- 83-93++
IgG 41 IND

Lymie Girl
Veteran Member


Date Joined Jan 2015
Total Posts : 1332
   Posted 6/27/2015 11:48 AM (GMT -6)   
Dancingbear*,

I will let you know how it tastes when I get it. It might take a while for me to get it because I'm waiting for the script.

I will let you know how it goes. Thanks!

Pirouette
Veteran Member


Date Joined Mar 2014
Total Posts : 6201
   Posted 6/27/2015 10:32 PM (GMT -6)   
DB*
Well, I'm now realizing that my tastebuds are off…
Is your powder a light yellow? Has the consistency of cornstarch?

p
Chronic late-stage lyme—likely infected in 2000; Clinically dx 3/2014 w/ Babesia, tested positive for Bartonella, CDC-positive for Borellia. Multiple viruses and GI/immune treated first; started AL-Complex in May; started A-Bart and A-Bab in July; have IV port installed and started on Rosephin.
Detox: Pinella, Burbur, Parsley, Milk thistle seed, Burdock root tinctures; japanese knotwee

Lymie Girl
Veteran Member


Date Joined Jan 2015
Total Posts : 1332
   Posted 7/3/2015 2:40 PM (GMT -6)   
Pirouette,

I went to a compounding pharmacy yesterday. I called in advance and was assured that the pharmacy could provide the pure Nystatin powder 1,000,000 units without any fillers or sugar. Once I got there, I found out that they could only get 250,000 units and that it would be mixed with a bunch of fillers. Then, the pharmacist insisted that she could get it up to 500,000 without the fillers. I asked if they could get 1,000,000 units without fillers. She said no. I received very mixed signals from her.

Do all the pharmacies do this? Do they use fillers without disclosing them? I'm confused. Some of the fillers included xanthum gum (unsure of spelling), cellulose, Stevia, apple flavor, sodium citrate, powdered sugar, apple flavor. Medisca was the supplier. The pharmacist said she could chose among the fillers and not include the apple flavoring.

I will have to try the second pharmacy. I just want to make sure they don't use fillers. How do we know? Is this like the Cholestyramine powder you thought was pure? I feel like I can't trust these people.

Thanks for all your help!!! I greatly appreciate it.

Dancingbear*
Veteran Member


Date Joined Oct 2014
Total Posts : 556
   Posted 7/3/2015 6:21 PM (GMT -6)   
Hi P. Yes mine is like yellow corn starch. Lyme girl. I have a picture of what I get. No fillers. Should I send you the picture?
diagnosed October 2014. I am pretty confident that I have been infected since the summer of 2006. I also have hashimoto's/hypothyroid and SIBO.
IgM 18+ 23-25 IND 28+ 30- 31++++ 34IND 39++ 41+++ 45- 58++ 66- 83-93++
IgG 41 IND

Lymie Girl
Veteran Member


Date Joined Jan 2015
Total Posts : 1332
   Posted 7/3/2015 6:43 PM (GMT -6)   
That would be fantastic Dancingbear*! That would help a lot. Thanks!!!
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