Since I have started treating parasites with pharmaceuticals I am having days in a row with no symptoms and feeling 100%
I wish I would have done this a long time ago! I have been treating aggressively for 2 1/2 years. Couldn't get any better than 85%
I am very close to posting my story in the "success story" thread. I will do it when I go off abx
Words of wisdom... mold is a huge player, and treat parasites!
Posted by Tammy N. (Member # 26835) on :
Wow RC1 so happy to hear this!! This is GREAT news!
What are you taking?
I am back on Rxs for parasites also.
Friendly reminder - don't forget to stay on top of your binders to capture the toxins that get released from the dying parasites. I don't think I covered this base well enough. Also, herbally, I would suggest staying on top of any bacterial/viral infections that can crop up from the dying worms.
Wishing you my best for continued success!
Posted by RC1 (Member # 31923) on :
I did Biltricide, Ivermectin, Pyrantel Pamoate, I am at the end of 14 days of Albenza and will be doing Alinia next.
I am taking Welchol for a binder.
There is something else I should add. I also have been taking VIP from Shoemaker protocol. I got a little better from that also. It is a peptide that helps to regulate all of the hormones in your body. You can read more about it at survivingmold.com.
You can get it from Hopkinton Drug in Mass. It is a compounded perscription.
Posted by Tammy N. (Member # 26835) on :
Ahhh....the Dr. K protocol. I did it twice last year (back to back), then switched to herbals for about 6 months. Now I'm back to it....on Biltricide now.
I've never taken Welchol. Heard good things though.
I've also heard good things about VIP. If I recall correctly, mine was low. I think I'll ask my doc about it next time I go. Dr. S raves about it as if it is almost miraculous. Glad to hear it has been a help to you.
So glad you have found your winning combo. Stick with it:)
Posted by nonna05 (Member # 33557) on :
PLease what is VIP?
Posted by lax mom (Member # 38743) on :
Great news!!!
Posted by gigimac (Member # 33353) on :
Awesome news RC1, I am very happy for you!! Your success gives me hope and encouragement.
Posted by annxyzz (Member # 20404) on :
Can anyone explain more about VIP from Dr S ?
[ 03-07-2013, 08:57 PM: Message edited by: Lymetoo ]
Posted by RC1 (Member # 31923) on :
[ 03-07-2013, 08:58 PM: Message edited by: Lymetoo ]
Posted by DaveNJ (Member # 17362) on :
congrats....that is awesome.
Posted by Jane2904 (Member # 15917) on :
Wonderful, so glad to hear. Posted by lymetwister (Member # 19590) on :
RC1, can you list the symptoms that you have that are 85% improved ? Maybe you could do it like this:
Bone pain was 8/10, now 1/10 Overstimulated was 6/10 now gone etc.
So hard to know what is what with these infections.
I have Ivermectin here. **Edited out per Lymenet rules on horse meds not allowed for humans.**
Thanks,
LT
[ 04-18-2013, 09:58 PM: Message edited by: faithful777 ]
Posted by RC1 (Member # 31923) on :
Omg, I wouldn't know where to begin. I had every symptom on the list except for testicular pain...because I'm a girl.
I tested positive for Lyme, Bart and Babs. I have taken up to 5 different abx at a time...most of the time I was on 5.
CSM really lifted my brain fog, it took a couple of months though. I'm still doing 1 dose of Welchol a day.
I exercise every other day, no sugar, gluten free diet. Remediated my house of mold, that was huge.
I herxed constantly for months on end, I think if I had been on CSM then it wouldn't have been as bad.
I also treated Marcons (nasal staph) with the Beg Spray from Hopkinton drug, also am doing VIP from there too. This stuff is from the Dr S protocol.
I am taking Folapro for Methylation problems, I also have some of the bad genes for detoxing Lyme and Mold.
Basically this is what I've done Dr. B's abx and diet Dr. K's parasite protocol Dr S's mold and Lyme protocol
I started treatment 2 1/2 years ago, I was infected for about 16 months at the time. I was living in a moldy house for 12 years. I had symptoms from the mold for a long time but just thought I was getting old. Even though I'm not very old.
[ 03-07-2013, 08:59 PM: Message edited by: Lymetoo ]
Posted by lax mom (Member # 38743) on :
RC1 who prescribed the Dr S mold protocol? Would you PM me? I keep thinking we have the same practitioner, I may be wrong though.
I can't detox mold/lyme.
[ 03-07-2013, 08:59 PM: Message edited by: Lymetoo ]
Posted by lymetwister (Member # 19590) on :
Are you saying that Antiparasitics is what is getting you better ?
I see you did alot, but it seems like this post of yours is giving most if not all of the credit to the Antiparasitics.
i.e. did the Mold symptoms clear with the Antiparasitics ?
Or, are you saying the 2 1/2 years of total treatment is getting you well ?
Posted by jlf2012 (Member # 36002) on :
What is CSM?
Posted by lax mom (Member # 38743) on :
jlf2012: Cholestyramine
Posted by RC1 (Member # 31923) on :
Lymetwister- It took all of those things to get me well. The last 15% I give credit to the antiparasitics, and probably the VIP.
If I get a mold hit I can be sick for a couple of days, so there is nothing I can do about the mold symptoms except avoid it, the Welchol will speed up the process of getting back to my baseline.
Posted by Tammy N. (Member # 26835) on :
Which doc is overseeing you? I'd love to know. Sounds like he/she is well-rounded in their approach and covers all the bases. Could you please PM me?
So glad for you:)
Posted by RC1 (Member # 31923) on :
Tammy your mailbox is full
Posted by Catgirl (Member # 31149) on :
Right on RC1!
Posted by Tammy N. (Member # 26835) on :
Deleted a few. Thanks.
Posted by Lymetoo (Member # 743) on :
Please refrain from using this doctor's name on the board. We have traditionally protected his name along with other LLMDs.
Thanks.
Posted by RC1 (Member # 31923) on :
I'm getting a lot of PM's about my doctor. I just wanted to tell you guys that its all stuff I learn about on here and tell him what I want to try. You don't have to have the top Lyme doc to get the protocol that you want. Just bring documentation and ask for it. And be prepared to sell it.
Posted by carolann2013 (Member # 39964) on :
RCI You said that you were treating parasites with pharmaceuticals. What kind are you taking?
Posted by RC1 (Member # 31923) on :
Carolann- my protocol is an earlier post on this thread.
Posted by RC1 (Member # 31923) on :
Wow, I am getting a lot of PM's. I just want to share a few thoughts with you guys...
Our Docs do not have the time to research the way we do, they are swamped. There are too many of us and too few of them.
I believe it is our responsibility to share with them what we are learning from each other, and on our own.
Encourage your Docs to learn about the Dr S protocol, encourage them to learn about what Dr. K is doing with parasites, and what Dr. H is doing with abx protocols.
This is what I do, these are the protocols I want to do, and I ask. We can make our Docs better.
I believe each of us has a responsibility to try to make things better for the ones that come after us. The only way to do that is to share our knowledge.
The information is here, it's up to us to share it.
I don't think changing Docs is the answer, I think the answer is to share what we learned with them, so they can help us better.
**do not use the dr's name on the board .. per rules**
[ 03-08-2013, 12:10 PM: Message edited by: Lymetoo ]
Posted by Catgirl (Member # 31149) on :
Well said RC1. We can make our docs better. They are all searching for answers too. The more people ask, the more they will see they need to either adapt or get left behind.
I've approached my lyme guy with different protocol ideas. For the most part, he's receptive, especially when I walk in with the info. I do stuff on my own too. I believe this is what we have to do. No one knows your body better than you do.
I am truly thankful for Lymenet, and everyone who is kind enough to share info. It helps us all.
I agree with RC1. These poor lyme docs are absolutely swamped. Mine said that it just never lets up (busy). I also agree that changing docs is not the answer, except, of course, if your doc is getting you no where, then it may be time for a new perspective.
Posted by desertwind (Member # 25256) on :
RC1; I read your posting wtih great interest and hope.
I have gotten to 85% but can never stay there.
I pushed my LLMD/LLNP to test and treat for parasites - ask and you shall revcieve!
I am about to start the same Parasite protocol as you mentioned and really believe that is a HUGE player in my remaining symptoms, along with detox and mold.
I am doing herbs and B.W. for parasite, yeast and detox but am curious to see how my body responds to pharma's for the parasites.
Posted by Haley (Member # 22008) on :
Some docs are very hesitant to use these types of meds unless there is solid proof of parasites. So, in some cases you may have to go to a different doc.
This is great news, so glad it's working. I also feel that this is the turning point for many. Yay!
Posted by RC1 (Member # 31923) on :
Right on desertwind! Posted by sparkle7 (Member # 10397) on :
RC1- I'm glad that you have found what you need to do to get better. I disagree that we should be educating our doctors, though. I paid alot of money to doctors. Maybe not as much as some but it was all I had... I thought they are supposed to be on top of things. That's why we pay them.
If they just dispense what we ask for - what do we need them for? I had a similar experience with my last doctor but I still had to pay him big bucks. What's the point?
I'm not trying to be disrespectful to any one but it makes me mad. They are supposed to be specialists in this. They charge enough. No one is giving experimental medical help away for free - but this is what it boils down to... Experimental.
Posted by Haley (Member # 22008) on :
Sparkle - I understand what you are saying. Unfortunately, this illness is so complicated, it's as if each one of us has a different illness.
If the doctor does not have a a postive test to go on, he/she must, to some degree, rely on the patients intuition.
I have a very bright doctor, but we have developed a relationship where I can suggest things and he gives it a thumbs up or thumbs down. As smart as he is, he still realizes that some of this stuff is a mystery.
He is not a top LLMD but he is a top MD. Part of the reason I am almost well is due to this type of relationship that we have arranged. There is not always a straight forward answer with Lyme or as I prefer to call it MCIDS.
Posted by RC1 (Member # 31923) on :
Sparkle, I hear you. There isn't much about this disease that doesn't make me mad. Nothing about it is fair in any way.
Here's my take on it, it seems that all of the people I know that got Lyme, got over it pretty quickly and painlessly, but me or (us, here on LymeNet).
We are the exception not the rule. So I think in a lot of the cases these Docs are quite effective. I think we are the hard cases. I think Haley is spot on by saying that we have to work as a team with them.
Posted by Kudzuslipper (Member # 31915) on :
This is a really nice thread. Thanks for sharing you experience RC1. And good for you!
Posted by sparkle7 (Member # 10397) on :
Yes, we are a team but they don't always behave like we are the one's paying their salary. If they are just guessing - we should get a reduced rate.
I've read about some doctors who say really inappropriate things to people. Some just flat out don't know. They still charge pretty exorbitant fees.
Maybe it's the system but it doesn't seem right. I guess capitalism & healing people are 2 diverse paths.
Posted by nonna05 (Member # 33557) on :
I'm so sorry ,,,but what IS VIP?
I know about the spray for nose/staph but, not ingredients,
Yes I looked at link. Still can't see/say/find what VIP is... Posted by RC1 (Member # 31923) on :
VIP is a peptide, it helps to bring MSH up, C4a down etc. It's meant to use at the end of treatment. It won't work if you still have active infection or are exposed to mold.
The ERMI scores (test for mold) must be under 2 to use it, of course it only applies if you have the genes that you can't detox mold.
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