springshowers
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posted
I have broken through and no longer am I that person who could not treat this disease.
I used to not be able to handle treatments of abx without herxing severely. I used to not be able to take even supplements or do treatment protocols that were meant for this disease.
I was not able to do detox modalities without feeling sicker too.
I was bedridden a lot and for years and years I was STUCK>
Is this you?
I want to talk about this and say to everyone that this CAN Change. Your body can change. The situation CAN Change!!!
I have changed. I am now able to treat. My organs are strong and working. My load is down of neurotoxins and lastly bugs.
I am now finally able to treat myself or be treated and feel a positive response.
I think there are many like me out there that are not even able to treat this disease because we are stuck in that Mode I described.
I think it is key that we find what works for us that does 3 things. 1. Brings down Nuerotoxin Load 2. Builds up organs and gets them moving, healthy and working. 3. Bring down load of bugs (last on the list of priorities esp if number one and 2 are not happening)
Those are the 3 things that were key for me.
I actually finally reached out for professional help and was able to do all three at once. But I was given a lot of attention and support.
After 6 Months of this I am a new person
If you are one of those people I described this is a HUGE Deal. And getting there is a huge step and a big challenge.
I read through the threads and always can figure out who is in this group and it makes me frustrated because I can hear the frustration in peoples posts asking how others can tolerate this or that treatment.
Well This Thread is Made for all of those in that same position and maybe through dialog we can help one another get out of that stuck place.
IF others can post what Worked for them if they are OUT Of that stuck place that would be helpful.
[ 02-27-2013, 08:34 PM: Message edited by: springshowers ]
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springshowers
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posted
For me like I said I went to a clinic and got a ton of supportive IV treatments as well as supplements and detox modalities that were on site. I am now enrolled in a new clinic doing more of the same and also continuing to Treat.
I had lost patience doing it at home alone was not making much progress. I needed help and I reached out to get professional help. By the time the big light bulb went on ( I knew I had to detox but I did not know or admit how bad off I really was in that area ) I had so many years of being stuck and working so hard and was beaten down and tired. I just wanted help and support and did not have energy to figure out what to do or how to do it on my own at that point.
For me that was how I did it. I had all that help. Many do not and will not. But if I had not had that help I would have done it a home but it would have taken longer most likely.
I want to start a list of things that helped me and some are done at home and some are not. It took for me doing more than just a home because I was very bad off and getting worse.
So things that I think help a lot
At Home 1. Detox Baths - as many as you can a day gently 2. Detox Enemas 3. Detox Rife Frequencies 4. Internal items such as clay 5. Prescribed things like welchol or cholestrymine 6. Bounding on rebounder 7. Dry brushing of skin 8. Enough Water (1 oz per 1/2 of your body weight) 9. Walk or do something active if possible 10.Organ support supplements
At Doctors Clinic 1. Laser Lymph Drainage Detox 2. Ozone Sauna 3. Ionic Foot Baths 4. IV Glutithione 5. IV Ozone Blood Treatments 6. Myers Cocktails 7. Vitamin C IV 8. Reiki 9. Energy Healing 10. LED / Photon 11. Accupuncture
You have to experiment and find what works best for you. If you herx a lot then you will have to take breaks inbetween and consider the detox as your treatment. It is a treatment. Once things start moving you will feel it. Your body comes alive and many symptoms improve. The herxes will be less and shorter etc. You will have a more normal GI system and you might even be able to feel those organs moving.. I feel them tingling and feel their energy coming alive..
What I would say is that if you would switch your mind off of the "killing" of the bug. And put it on Detox and Getting Rid of toxins and loads and MOVING of those things out of the body using your organs and body parts that should do this.. then you are making a big change.....
This is just a short start of ideas and Please if others would add in ideas that they have and what helped you.
I want to help others get unstuck and or at least identify that this may be you.
We are so anxious to treat and kill the bugs that we may not be seeing that we may be adding to our loads of toxins and if our systems are shut down we are just adding to the problem instead of helping it.
This is all just my opinion and I am not telling anyone what to do. IT also has been my experience so I wanted to share it. In now way am I telling you to do this or that it is what needs to be done for sure.
For some maybe this is not your situation either.
But either way we all know detox is helpful and for some of us very necessary.
For me it was 100 percent necessary and I still made it a priority every single day just to keep up my progress I made. I do not have to do as much or work as hard as before but I have to do something every day and pay attention to it as the top of my list of things to do ..
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posted
Thank you so much for starting this thread Spring. I am right where you were several years ago. I have been on abx for about 8 months and suffered terribly while on them. I have now been off of them for five weeks and just detoxing.
I am feeling better but can now see that many of the times I thought I was herxing, I was simply filled with neurotoxins and reacting to that.
I am also waiting for my KPU test to come back.
My body still feels toxic, but I am using Welchol daily, the ginger bath from Dr. J., Infared Sauna, clean diet and am about to try the foot bath from Dr. J.
I have an appt with my naturapath who is an LLND on Friday to determine what to do next. I am leaning towards detoxing for six months and using Dr. J.'s protocol
At lease off abx, I can function and I have been able to work some AND my attitude and brain is so much more positive.
I am of the persuasion that we shouldn't have to herx to get well--that has never made sense to me--it goes against my belief working with the universe in a gentle way to get well. Call me naive or what you will--I know I will get naysayers out there--I know the science--I've read everything too--but for me--I need to work with my body, not throw it under the train.
And as long as I will be called blasphemous--not from you, but others, I don't believe abx is the end all be all to getting well. It can be done differently. And I applaud all those who have done that--Gary who went to the Hansa Center and the AI thread people, and you with IPT. Thank you for being the trailblazers.
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sparkle7
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posted
I think herxing may be an indication that you are hitting something. The tests are so inaccurate - we need something to know if we are doing the right treatment. I don't think it should be a continuous thing, though.
In my case, LEDs were making me worse. They don't always help everyone. I think they can be harmful with babesia or parasites.
My favorite detox formula is Dr. Schulze's #2 Intestinal Formula.
IV hydrogen peroxide did not help me. I also tried some vitamin IVs & Immunoglobulin shots & they didn't do much.
Thanks for posting!
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I have said for a long time that I feel nutritional support is just about as important as killing agents whether they are antibiotics or herbs or whatever.
For hubby -- As I have also mentioned many times -- whenever he stops his supplements he almost always crashes very quickly. For many years I had no idea why -- then he did the genetic detox profile from Great Smokies -- now Genova Diagnostics.
He has a methylation defect -- he is missing 1 of 2 genes needed for proper methylation -- so obviously it could be worse than it is. The supplements hubby needs to take to correct this are SAM-e and B12 and B6 and B complex and folic or folinic acid. He also takes betaine hydrochloride to help with absorption from food. It took a lot of experiementation over the years to get the right doses of these supplements.
Next is glutathione -- hubby took IV glutathione for probably 4 years I think at over $100 - $200 per month after insurance paid their part. His current LLMD who is a nutritionist suggested the Xymogen brand of alpha lipoic acid (ALA Max). It costs $49 per month from the doc, but it works. He also takes selenium which is another glutathione precursor -- very cheap -- 200 mg per day. I remember one doc who is into kinesiology jokingly told hubby he might as well drink glutathione he was so deficient in it.
Will come back to this thread as there are several other things I want to add.
Bea Seibert
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springshowers
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posted
Hi there. Thanks for posting.
You have seemed to find your post Imaginit. Sounds great and let us know how it all goes.
Sparkle. When we use the word herx we use it loosely. And I think that a real herx is rare in Lyme Disease. Even though you may think it is from hitting or killing a bug it still is a response of that killing and the neurotoxins it is creating.
So if you already have a build up you will add to it and feel it more so.
I think that those how do not have build up of toxins treat and feel no herx and just feel better and better. Not only are they able to detox well but they do not have build up because of that. Therefore no feeling worse.
I think that is is wrong to think herxes are good. IF you use them for an indicator and they are something like a twinge of pain in a joint or a tired afternoon then that is ok and not harmful and a good tool.
If you end up in bed for a week after trying a new supplement that is not good. WE got to keep it perspective and also think about what is going on inside of us. I know there is not exact science but I have heard from many doctors whom I respond out there in the lyme world who say it is all nuerotoxins that are giving us those feelings and affects. IF so then what I am saying makes sense.
So I think it is very well a good expectation to treat and to KNOW You are using the Right thing because You are FEELING BETTER and not from a HERX>
See the complete 180 There??
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sparkle7
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posted
Bea - Do you recall how much the DetoxiGenomic Profile was?
Do you think it was accurate? Do you think these things can be corrected?
posted
Whoa......spring - gotta watch this advice. You are sounding a lot like me.......
And I have apparently been a bad boy for recommending detoxing + improving specific organ health. BEFORE the kill kill kill obsession.
And I love this quote from Imaginit: "I need to work with my body, not throw it under the train."
Here in the US so many expect quick results, as repetitive BigPharma has sold - oooops I mean told - us.
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springshowers
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posted
Well Massman
I think it is good advice and not only good advice I do not see how you can make progress if you keep adding to your load and when the load that is already there is not even dumping out.
SO looks like the unload button is broken. GOt to fix that button first. Then hit it and let whats inside the truck dump out into the trash dump.
Then clean out the truck and get it ready for more now that it is working you can go around and gather up more trash and you can also even go around and sweep the trash up into pills so that it is off the street and put it into your truck.
And make sure to keep dumping the truck at the trash dump before it gets too full and overflows.
Button = Organs and Immune system Truck = Movement Trash = Toxins Dump = Waste - out of body gone Overflow = Pain and Sickness
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Hubby did the Great Smokies genetic detox test back in 2002 when the company first introduced it and it was a special price -- only $200 I think -- pretty sure the cost is about double that now.
There are several different companies which do these type of tests. But the old Great Smokies lab (now called Genova Diagnostics) is the only one hubby has used. Pretty sure others on LymeNet have used other labs.
What we liked about the Genova test is that they only test for things which can be corrected by nutritional supplementation or diet or avoiding certain meds etc. In other words things you can actually do something about.
I remember checking prices for the Amy Yasko genetic tests once -- think I have that name right. Very expensive.
Also -- since this is a genetic test insurance will not pay anything on it as far as I know.
Bea Seibert
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
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Another useful test from Genova that hardly anyone talks about anymore is the functional Detox Profile -- this is not a genetic test but a test of how well the body is detoxing. It measures Phase I and Phase II liver function and several of the different pathways.
Also includes info on lipid peroxides (fats being destroyed by free radicals -- an indirect measure of brain inflammation) and glutathione production I think.
This test used to cost around $200 I think -- hubby has had this one done 3 or 4 times over the years. And insurance will pay some on this one. As Spring has mentioned you could simply have one of the detox pathways that is not functioning properly -- usually caused by nutritional deficiencies.
Bea Seibert
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posted
This is a great thread, spring! Thanks for starting this. I love what you're bringing round here.
So, for the past couple months, I started with supplements, a great diet, and exercise and lifting weights 3x a week. Well, to be fair, I never let Lyme stop me from doing that stuff, even though I had to PUSH myself into the Gym -- the place I love to be.
I started my ABX regimen roughly 4 weeks ago, and things are starting to ramp up as I add more to the protocol.
I'm still really concerned about detoxing and making sure this goes as smooth as possible. I have been eating whole lemons, drinking 6-10 bottles of water daily, taking milk thistle supplements, fish oil, glucosamine, and all the vitamins I need.
I need to take it to the next step.
I hear Epsom salt baths are great for detoxing. Problem is I tried one a few years back, and after 15 minutes I had a headache and was sick for days!
I want to try it again. Do you have a recommendation for a starter bath? Maybe using 1/2 cup of Epsom salt in the tub? Only staying for a few minutes? How should I approach this.
And if you were in my position, what other detoxing method what you try next?
canefan17
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posted
Killing bugs HELPS support organs as well.
Pretty tough to support an infiltrated organ.
All 3 are important in no particular order.
Typically when you see an LLMD all 3 are addressed at the same time! And it only makes sense.
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springshowers
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posted
HI Wolfed.. Thanks for adding to the thread and your compliment. Nice to hear!!
Ok I read through your thread and right off the bat this is something my doctor told me and it was to Never Use Epsom Salt.
I know many do and this has not been told to everyone by their doctors but mine did. Also No Magnesium Supplements. He believes that it feeds the bugs and you feel worse.
Since you felt worse I would first skip that Epsom Salts all together. If your starting baths I would first start with just plain water and soak for a nice long time in hot but not too hot water. I would also dry brush your whole body starting from the outside working your way in prior to the bath. Important to do it dry.
Then see how you react just that. If you do ok then I would add just sea salt. Hymalayian or some sort of natural sea salt. IT will have natural minerals but not enough to be an issues like epsom obviously.
Then other things you can add are various things and recently some posted about adding fresh ginger in some sort of seep bag.
You can also add things like peroxide or vinegar etc. Some things are more likely to absorb and actually kill off some of the bugs and give you a herx and some are more gentle and more used to pull out toxins in the body and give relief.
I would go for the detox methods first... and be as gentle as you can and then later if you like do some more aggressive ones. IF you do a search on baths or detox baths there are many kinds posted her and online overall.
I really enjoy and have to have at least one of baths each day. If you can stay in 30 to 45 minutes and also close the doors and heat up the room too..
I happen to not have a sauna but looking for one. If you have one at your gym I would recommend that too. I have done some at gyms and at clinics I got to by do not have one at home..
The other thing that is really good is a rebounder or tramp. If you just bounce up and down gently it will move the toxins so they get out....I only do that one time a week right now but it can actually be quite affective.
Since your in the gym maybe there is something there too that will give you that affect or an actually rebounder or tramp?
If you do just the baths or saunas or both.. Soaking is different than a sauna and I would do both. And the gentle bouncing those are great additions.
Your got a good amount of water. And rule Of thumb I use is to drink at least 1/2 body weight in oz of water..
Do you have a rife machine? If so there are ways to use that for detox support too..
I really have those ideas even though I think I am forgetting something.
Oh I wanted to add.. Caster Oil Packs. I just started to try them and they are supposed to work really well. I am putting one on my liver and gut area at night when I sleep. Be careful cuz it stains so make sure you really set it up so there are no leaks and wrap it around yourself with like an ace bandage. That can really pull out toxins and the gut just is an area that is where I like to target and the low back.
Each person seems to carry the toxins in various places and can usually tell by increased pain and stiffness or such.
I really am not a expert at any of this and just apply what I have learned from doctors and clinics and from reading and sharing here.
If you want to take the lemons to another level you can blend a whole lemon with a couple table spoons of olive oil and a little bit of water or juice such as cranberry. Then strain it and drink it direct. It packs a nice punch and very good for during herxing or detoxing. It gets the juices from the whole lemon and adding in the oil helps a lot. I got that off Dr. Nicholsons page online.
Well anyway..Good Luck and let me know how it goes. Esp with those baths. I can bet that taking away the epsom will help you and make sure it does not feel too too hot and work your way up in temp and time as you go.
Blessing...
You sound like you have a great plan and your working hard at the things that important..
What meds are you on? and is this the first time you have been treated.? Just starting 4 weeks ago?
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springshowers
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posted
Canefan
Yes this is true and good point.
But there are some people who actually Cant and then order does at that time make sense and is important.
I have been there and I know what it feels like> For others who have not felt what that is like can only speculate and its hard to visualize but it happens to many of us.
So treating "killing" has to be put on the back burner until space is cleared up for it and or the organs are stronger...
THere are many times when doing all 3 are not possible and or do not make sense..
I think those people who know how it feels know who I am talking to..
For others it does not makes sense because if your not in that position and are able to detox and such and able to make progress and not end up suffering tremendously and just have normal herxes etc.. Then by all means. Do all three
I am at the point I can do all three.
But I was not this way until this last year...
Anyway I started this thread a bit more for those who cant because I think they are not talked about and left to try to figure this out and try to do what others to and it just does not work.
I want to talk to them and tell them they are not alone!..
Your not alone!!
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Thanks very much for the detailed reply! I will certainly research all the suggestions you posted and test out what is best for me.
What really intrigues me is the vinegar suggestion. See, I found out foods were causing problems for me, and solved the issue as being a mold intolerance. I had an allergy test done that came back positive for Penicillium and Alternaria Tenius molds allergies. So, I had to go on a mold elimination diet; which includes foods or drinks that are fermented and have potential to grow molds (i.e. alcohol, cheese, mushrooms, tomato sauce, vinegar and vinegar products like ketchup, barbecue sauce, etc...).
One night about 2 months ago, I decided to take a shot of vinegar to alleviate an indigestion problem I was having on the advice of one of my friends. When I woke up the next day, I felt like I was completely out of this world and had some intense peripheral problems.
Now, I'm wondering if I had some kind of herx reaction to the vinegar. In other words, did Lyme disease create some kind of positive allergy that would come up through testing in order to protect itself, or guard against me using it as a treatment.
If that isn't clear, if Cat's Claw is extremely effective at killing Lyme, would having an allergy test to Cat's Claw be positive if you suffered from Lyme Disease?
Just some thoughts I want to share. Would love to hear thoughts from anyone.
map1131
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posted
What a great idea. A continual thread on just detox support. I'm happy happy happy. Thanks Spring!!!!!!!!!!!
Many of us post about the importance of detoxing and not just throwing abx at this illness. But to be able to go to one thread and read read read.
Priceless!!!!
Pam
-------------------- "Never, never, never, never, never give up" Winston Churchill Posts: 6478 | From Louisville, Ky | Registered: Jan 2002
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Keebler
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posted
- "if Cat's Claw is extremely effective at killing Lyme . . ."
It is not. It is support. -
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ping
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posted
quote:Originally posted by springshowers: I know many do and this has not been told to everyone by their doctors but mine did. Also No Magnesium Supplements. He believes that it feeds the bugs and you feel worse.
I completely disagree with this!!! And so do most of the LLMDs who've put their protocols out there. By all means, let's starve the human being of a needed nutrient, in order to kill a bug! STUPID!
posted
Just wanted to say "Thanks so much" for starting this thread. I have been so sick and unable to tolerate abx or most any other treatment and I think it is because I am so toxic. I am looking for ways to detox and this thread has given me so many ideas. Thanks again.
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djf2005
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posted
The body needs mag for over 300 processes.
You simply cannot allow the body to remain depleted.
-------------------- "Experience is not what happens to you; it is what you do with what happens to you."
posted
Ping -- I agree. For all those newbies out there the doc Springshowers sees is just about the only LLMD who says not to take magnesium. The vast majority of LLMD's say most people are deficient in this mineral to begin with and the infections increase the deficiency.
I know when hubby started taking epsom salts baths they would aggravate his tremors and seizure-like episodes. But as he continued with the baths these symptoms went away. Now he no longer needs the baths on a regular basis since he takes oral magnesium supplements. As with any supplement start slow and gradually increase as tolerated -- applies to epsom salts baths as well.
Epsom salts is magnesium sulfate. Magnesium is needed for at least a couple of hundred functions in the body. Sulphur is used in one of the detox pathways.
Obviously if one is deficient in either magnesium or sulphur and starts taking those supplements then there can be a reaction. But as the deficiency decreases the body clears the toxins and resumes normal functioning.
A red blood cell mineral test for magnesium is the best way to measure this mineral level. Probably any lab can do this test.
Bea Seibert
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springshowers
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posted
By all means talk to your doctors and do your own research on the magnesium. Yes I follow my doctors advice and it has worked out for me.
I am not depleted in magnesium actually either. I am normal with my test for it but I also do not supplement or add extra for it.
So each person should evaluate this for yourselves. I am by not means trying to tell anyone what to do for sure.. Just sharing what i am told and what I do and have experienced.
But ultimately maybe for now or in the Epsom Salt Baths he should hold off on that and be more gentle to tolerate them to start with.
So thanks everyone for your inputs.
Does anyone have any other ideas on Detoxing Methods that have worked for you and details on how you did it or do it and or take it etc?
I wanted to say I have really done well on bentonite clay too. Even in short bouts if I am feeling really toxic and I take about 1 tablespoon two times a day for a week here and there. I can very much tell the differnce. With this stuff too much is not good either and long durations I think would be no good either..Just again from my own experiences.
But if I am herxing or having a bad week etc. It has really really been helpful and I always have a bottle of it. The thing is you can really feel the affects quickly too and its obvious..
Worth having around for sure.
Thanks
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springshowers
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You can skroll down and find a 18 page document by Dr K on how to eliminate toxins from the body.
It is long but in short he divides it up by 1. What to intake for foods Protiens,Minerals,fatty acids and fluid 2. Cilantro 3. Chlorella 4. Garlic and Wild Garlic 5. Fish Oil He gives dosing and exact methods and this first part is inclusive of heavy metals and chemicals and overall toxins we accumulate in life.
Then he has section on just Lyme nuerotoxins 1. Quinolinic acid 2. Gossypol: 3. Life Changes 4. Upregulation of virulence factors And much more and hard to list here as he writes in paragraphs etc.
He then talks about mold toxins and how to handle those and goes onto mycotoxins. He then includes great tips that compare symptoms of lyme toxins to mold toxins or mycotoxins and that is very helpful as well other tips.
This is very details but you can get a great overview and eduction just by reading it through.
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springshowers
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posted
This is also a great page to read. It is not exactly Detox but in some ways it is.
It tells you why you have and how to fix these 1. Lack of Good Appetite
2. Lack of Good Digestion
3. Toxic colon - ``unhealthy'' stools and urine
4. Low body temperature (below 98.6� F)
5. Lack of deep restful sleep
The relationships is that it talks about toxic colon and toxins and how it affects some of the above and how to detox or change things to improve all the above.
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17hens
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posted
spring, where do you get the bentonite clay and how do you take it? thx.
-------------------- "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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posted
Spring, I want to thank you for posting this. I truly hope that you don't get attacked for sharing this information. I couldn't agree with you more on nearly everything you've said.
I'm in the position you described in your initial post: Antibiotics send me straight to the ER, supplements have even incapacitated me, I have not been able to leave my house in over 7 months, and I spend 80% of my day on my bed. You give people like me hope. So thank you...thank you so much.
I wanted to also add, that people in our situations might want to consider the homeopathic route for detox. When you're so sick, and so sensitive, and so very fragile, they're often the easiest to tolerate. That's all I can tolerate right now, but that's okay with me because I do have hope and feel like I can make some headway on them.
Thank you thank you thank you, for being brave enough to talk about this.
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springshowers
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posted
Hello Little Lymie.
I so can relate. I am sorry you have been through so much and bedridden so much. I can relate big time.
I am getting a lot of emails and support and support here for this thread and your comments too.
I am not brave to post this. I am just being real and I wish someone had identified me and with me years ago and along the way.
We do not all "fit" into the same pod and that is obvious. But specifically this defined group who are stuck and not able to move through any treatments sticks out to me.
I think we are too overloaded. Not to just say your toxic and have to detox. But overload of many things.
Many things including toxins and nuerotoxins including environmental and energetic and emotional all included.
Some is from genetic issues and some is from years of exposures and some we just kept ignoring this issue and kept trying to treat and adding to the bucket of toxins in our bodies with no way out.
This thread if mostly for them but also for anyone who wants to gather ideas for supporting themselves at what ever stage of treatment they are in.
WE all talk about detox a lot. Just it is kinda thrown around as a word that we all know we need to do.
I think ideas and suggestions and things that have worked for others is a great place to start.
There are many categories of detox like those documents I posted.
But to start out with I would make a simple list of the things that people like us HAVE To have in our daily lives to keep things moving and to help support the body to detox.
Things like water and baths seem simple but if you just start with those two while researching for what to add it can make a big difference ..
I had thought I did not need my baths after stopping the aggresive treatment I was on. I was soooo wrong. I am back at it luckily and still can tell the difference every single day every single time I do it. Thats a big deal. How many things can you actually say you feel the difference.
When your very loaded it seems nothing is helping and you can barely feel a treatment and if you do you feel worse and never better..
I want to emphasis even the small things done consistently can be very powerful.
It is hard to be consistent when your so sick. That is why you got to start with small steps and small things and work your way up.
Will be back with some info on that Clay. I got to find a couple things and will post them ..
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posted
I am starting coffee enemas for the first time in my life. Am using organic. I will use 1 a day to start, and have heard they are safe and excellent at detox.
Is there anything I should be careful about?
Posts: 515 | From In His Loving Care | Registered: Apr 2009
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posted
Thank you for starting this thread. I am starting led detox treatments of the 29th, with a burbur tincture I'm supposed to use. I don't do well with tintures because of the alcohol, even If i place it in boiling water. Is is worth going through this treatment?
thanks, diana
Posts: 857 | From northern california | Registered: Dec 2009
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springshowers
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posted
I have used now two kinds of clay but a friend sent me this quote "Bentonite clay from yerba prima is the best safest and cleanest. Vitacost has cheap...32 oz bottle." So I am going to try that brand now.
I first used Sonne's Organic #7 it is called. I ordered that online. Then I found some at my local Sun Flower Market. That brand was called Great Plains. Not sure what the difference is exactly of safest and cleanest.
From my own experience I was able to start at about 1 tsp 2x a day working up to 1 tbs 2x a day and that is as much as I ever did. I also did not do it ongoing or constantly. A week to 10 days in a row at most for me. And or during bad herx times.
Look below and there are ideas in the articles on how to use it and even adding to your detox baths.
Here is an article called "The Proper Way To Use Bentonite Clay"
sparkle7
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posted
I've only used the coffee enemas when I've done a parasite cleanse. I'm not really into enemas but some people do quite well with them. I thought they were helpful after the parasite cleanses to remove debris & jump start the liver.
Maybe some of the people into them can respond...?
Detox is a really big part of any Lyme treatment. It's probably something like... 1/3 killing, 1/3 supporting, & 1/3 detox.
I'm not in the mindset to be too detailed right now - otherwise, I'd probably post more.
Good idea to have a detox thread! It's probably underestimated how important this is... Along with exercise - when people are able to do it.
Posts: 7772 | From Northeast, again... | Registered: Oct 2006
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I'm very stuck. Currently I'm treating myself for digestive issues which works, but I need a professional in detoxification.
Whey Protein + NAC helps me a great deal. It is my staple. Although I can't take too much in one day or I feel worse instead of better. I've been doing these for a while, and while I have had major setbacks, if I look at the big picture there is progress.
I was healthier before trying antibiotics, and now I am in a toxic tailspin. I know it's toxicity since my supplements for detox work better than my beta blocker, a lot of times better than my benzos, etc. In fact, these supplements help my prescription meds work like they should.
Now my CNS is still severely messed up. It's been better the last week or so, but I never know when those bad days will hit.
I don't know where to go. I feel lost. I've been trying everything lately. I think my best solution would be to go to another state. But who do I see.
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Haley
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Thanks for the post spring. I just want to follow you around and learn all I can. I am copying and pasting this in my notes on supplements.
Do you take the Bentonite clay while you are on abx? I bought activated charcoal (I meant to buy the clay). I have not taken it because I am on Mepron and I feel that it would suck up the benefits of the medicine.
Do you do these detox measures while you do abx or do you wait until a break in the abx to do them?
I would like to try IV Glutithione. I am going to hit my doctor up for that next visit. Do you take these types of IVs away from medicine or does it not really matter.
I feel like a neophyte when it comes to detox.
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Here is a link to add to this thread. I have never been to this doc and know nothing about her practice. But it is a very good overview of some of the things discussed here.
I think the G.I. issue sometimes is not emphasized enough. If someone has leaky gut from candida or food allergies or parasites or gastritis from h.pylori or bart then meds will not be absorbed correctly by the body and food etc will contribute greatly to overall body inflammation. There is even a book called Brain Allergies I think it is that discusses how poor G.I. function can even affect brain function.
The problem of course is to determine if the G.I. symptoms are actually caused by lyme or bart in which case the appropriate antibotics will actually improve G.I. function. But there are times when healing the G.I. must be one of the top priorities. Especially with weight loss which generally means nutrients are not being properly absorbed which will slow down detox and start a downward spiral.
Bea Seibert
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springshowers
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Thanks for adding that site. Its a good one and if someone is in CA you can add it to your list of who you might want to see.
I have been getting a lot of emails asking to find doctors who do this supportive type therapy for Detox on a professional level and also treat lyme or maybe not.
I added to my thread in finding a doctor and If you do some of the search suggestions and make calls you will find someone. I Have found many lists of a few people already to call. There are many m ore people around doing this sort of thing than we think. When I started to really look my list just got bigger and bigger
springshowers
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posted
Haley..
Well I have always fit in detox because I have had to during taking any treatments. Sometimes it is harder than others. But you can do it.
THings like Clay and Welchol or Cholestrymine have to be taken away from other things.
If you take your meds at least one to two hours prior and or two to four hours after you should be ok. I wrote the range because I have read both and I just figured I would put it that way.
I have a sluggish GI track and therefore I do mine where I take the meds at least 2 hours prior and then I wait at least 4 hours after.
IF you use that guideline you should be ok.
Kday I know the feeling of when you detox the other meds start working like they should. I was amazed as my pain meds started to work better and I could feel them working and even maybe too much!! And my sleep meds or even supplements I might take I was much more aware of them and they felt like they should be (or so I Think).
Typcially while overloaded I would feel NOTHING. I would take this and that and this and that and i never knew if it was doing anything> I thought to myself that it must be but I am too feeling ill to notice. THat might be part of it too.
Also the GI comment is very true and there are many issues and considerations and the GI is a huge place for the immune function as well as absorbing as well as detox. Its very important.
I had ordered some books that give you step by step and day by day workbook on how to restore your gut. It was one of those PBS special speakers and I can not remember the name of the lady doctor. I did it once way back when and I really need to pull those book out and go through it again.
SO much to do. SO little time.
Its exhausting just being sick let along self treating all the time.
I have been trying to find that balance myself.
Blessing to all and thanks for the support on this thread. Not sure why there wouldnt be or why there have been comments that indicate controversy but I do not worry about that stuff.
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TerryK
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There are literally thousands of posts at lymenet about detox issues. You can find many of them by using the search facility button towards the top of the page directly under the "post a poll" button.
There are many different types of detox problems that a person can have. Every person is different in what their specific problems are. One person may have many of these issues like me, some very lucky people (well, as lucky as one can be with lyme disease that is) may have only the normal problems that lyme causes (biotoxins, excess heavy metals when borrelia dies, extra intracellular debri and overly burdened detox organs) and some people will be somewhere in the middle.
Each problem will require a different treatment. This means that if you have a problem getting rid of biotoxins, you must use the appropriate type of detox (binders), no other type will work. This is similar for many of these issues.
I'll just add things as I have time. You should be able to find posts here at lymenet on all of these issues.
Genetic issues
porphyria (there are several kinds)
KPU (a type of poryphyria)
this thread has a lot of links for both KPU and other porphyria's
Methylation cycle depending on your specific mutations you can have impaired glutathione making detox very hard, excess ammonia and sulfites, impaired folate metabolism, inability to effeciently get rid of heavy metals, more robust parasitic infections, difficulty deactivating viruses and many other problems.
Biotoxins Anyone who has lyme will have to deal with biotoxins because they are created when borrelia dies (naturally or we kill it). Borrelia toxins are very toxic and this is a big part of why we feel so sick when we are killing borrelia.
Some of us do not make enough antibodies to efficiently get rid of borrelia toxins. Some can have added problems with other biotoxins like toxins from mold. Borrelia toxins can make us very sick and those of us with this problem may never get well unless we take a binder to help our body bind to and excrete these toxins.
Another of Dr. S's sites - you may want to review the whole site Use of pioglitazone to prevent intensification of persistent symptoms following cholestyramine treatment of patients with Post-Lyme Syndrome. http://tinyurl.com/ydmllys
http://www.personalconsult.com/articles/aggressivelymetxfailure.html "You can easily determine your unique genetic ability to remove Lyme's specific biotoxins by ordering a special 5-part HLA inherited gene marker test from LabCorp (test 012542), which is one of the largest labs in the United States."
TerryK
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Intracellular toxins
A number of TBI's (Tick Borne Infections) are intracellular. The pathogens can live and die inside the cell. Our cell walls can be damaged by borrelia. This may make it harder for us to get the toxins out of our cells.
There is a test called a c3d immune complex. I was told that many lyme patients are abnormal. Mine was extremely high which means that my cells were full of debri. The only thing I could find that seemed to relate to my situation was a slide presentation that didn't go into detail but looked like this might be related to a herx. http://www.lymediseaseaction.org.uk/conf2006/meer/img26.html
Drainage remedies are generally given to help drain the debri from the cells.
The most powerful drainage remedies that I've used to date are made from plant buds/embryonic materials and they are a class of drainage remedies called gemmotherapy. I've heard them referred to as plant stem cell therapy. There is a German brand called gemmo that I found extremely helpful. I'd still be using it if I could get it here. You can get it from certain practioners here in the U.S., I just don't happen to be seeing anyone that has them at the moment.
There are other brands of gemmotherapy. Apparently Dolisos has started making them and another brand that I've used is called Unda. Looks like many more are coming on the market recently.
Terry
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TerryK
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I am the poster child for genetic detox problems. I am positive that I would not be able to tolerate the antibiotic and herbal treatments that have helped me so much if it weren't for my LLMD figuring out that I have many of the issues that I listed above.
I have significant methylation issues, the dreaded genotype for biotoxins and my c3d test results were the higest my LLMD had seen.
The fact that I had all these issues explains why for so many years I couldn't tolerate antibiotics at all. I avoided them at all costs because they made me so sick and sometimes I'd be sick for months afterwards.
For most of my life, I thought I was allergic to most antibiotics and so did many of my doctors. Turns out I wasn't allergic but I had untreated lyme disease since age 5 and many problems getting rid of the toxins that are created with borrelia die-off. For many years, the only antibiotic that I could tolerate was keflex which I later learned is one that doesn't treat lyme disease.
Because of my genetic problems with borrelia, mold and spider bite toxins, I'll be on a binder for the rest of my life.
For the biotoxins we use actos to downregulate cytokines and allow me to be able to use cholestyramine. According to Dr. S., actos can be a gene therapy of sorts but more importantly it can allow lyme patients to tolerate cholestyramine, the drug that is used to bind biotoxins and remove them from the body.
There are over the counter binders that one can use if you can't get cholestyramine or can't tolerate it. I've tried most of them but usually go back to cholestyramine.
beta sitosterol cholestepure modified apple pectin Activated Charcoal (supposedly 62% as effective as Cholestyramine) micronized chitosan Sarsparilla (per Dr. K) Butyrate "The oral use of butyrate, a short 4-carbon chain fatty acid, is of striking benefit (Fusunyan et al 1998, Segain et al 1983, Yin et al 2001) in mobilizing renegade fats, lowering TNFalpha, sequestering ammonia, and clearing biotoxins."
I'm breaking this up into several posts divided by problem so hopefully it will be easier to read.
ping
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posted
Terry K - Speaking of detox and methylation (I'm still reading your links, so bear with me), what is your opinion of trimethyl glycine (TMG)? Anybody using it?
-------------------- ping "We are more than containers for Lyme" Posts: 1302 | From Back in TX again | Registered: Mar 2005
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ping
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TerryK, can't find a reference of any kind re: TMG in your links... Any info would be helpful. Doing searches for this too. Thanks!
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TerryK
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I can't use TMG because I am COMT ++ for 2 SNP's so I don't know much about it. In a nutshell, what this means is that those like me may have mood swings, panic attacks and bi-polar symptoms with supplements that are methyl donors like TMG.
You should be able to find information at either of the Yasko groups. You will need to join to read and ask questions.
. . . Individual variations in our cytochrome P40 enzymes help to demystify why there are so many variations in how we respond to drugs and herbs. . . .
. . . The important thing to remember is that the liver is a hot (metabolically active) organ, and so tends to get congested and inflamed. . . .
PROTECTION
Turmeric root, wheat sprouts, schisandra berries, amla fruit, beet root and milk thistle seed are among the major sources of protective anti-oxidants for the liver cells, as are fruits that contain flavonoids, especially citrus fruits.
These should be used to prevent development of inflammatory disease, or for damage protection as in the case of persons taking strong chemical drugs or undergoing chemotherapy. . . .
DEFICIENCY
The liver can become weakened and deficient. If this is not corrected, it can lead to liver atrophy and depletion of glycogen stores, even hepatitis. Signs include fatigue, low blood pressure, hypoglycemia, dry eyes, headache, heat symptoms and irritability . . . .
HEAT & INFLAMMATION
To remove excess liver inflammation with heat signs or toxins . . . .
PAIN
If there is liver inflammation with signs of pain and tension, use herbs that calm the liver and move the blood . . . .
ping
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posted
TerryK - Very kind of you to answer my posts, thank you. As for what I need to know, I'm not sure of that answer. Only to say that I'm trying to learn more about methylation cycle and exactly what role in methyl donation TMG plays, dosage info, toxicity info and just general items such as you posted, like inability to take TMG due to methyl donation. Simple stuff, I know, but it's so scattered, I'm having a bear of a time getting it all in one place. Thought you might have had a link (LinkMaster you are!).
Looking through Dr. K.'s info, etc. Would really like to hear from more posters like you who are sensitive to this.
Thanks again, Terry.
-------------------- ping "We are more than containers for Lyme" Posts: 1302 | From Back in TX again | Registered: Mar 2005
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gwb
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quote:Originally posted by MorningSong: I am starting coffee enemas for the first time in my life. Am using organic. I will use 1 a day to start, and have heard they are safe and excellent at detox.
Is there anything I should be careful about?
Yeah, no cream and sugar.
Seriously, I've been thinking about doing it too, but I'm a big sissy. Let us know how it goes. Maybe if you have a good experience with it I'll have the courage to do it. Posts: 1349 | From OK | Registered: May 2005
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I'm so grateful for this thread after feeling that folk here felt that there was something strange about me when I have tried remedies and they have not worked.
I try things and get nowhere. I had some tests done which show that I am chock full of metals and toxins especially arsenic and lead.
I have been trying to get my food intolerances sorted out as I felt this was the first step and got to gluten dairy lectin sugar and anti-thyroid vegetables free diet but now think that I have developed a rice allergy. So now I wonder if I should do the rotation diet. Today I excluded rice and feel lousy. One thing about rice I found is that it is sometimes contaminated with arsenic. I was using rice protein and brown rice milk but that maybe why the allergy - too much of it.
I am finding it hard to keep going but hopefully I will respond to the rice exclusion. It was one of the main parts of my rapidly reducing diet. I will start on the baths though and drink more. I even had a bad reaction to the electrolite drink others use. It is stupid but I feel ashamed because nothing helps. Thanks again.
mati
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TerryK
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ping, as far as the methylation cycle and TMG, I think it is used to bring down homocysteine levels which can be impacted by MTHFR C677T. It also supports the liver. Another name for it is anhydrous betaine so you might try searching for that too.
Terry
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ping
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TerryK - Correct. You've just told me in a nutshell everything I know about TMG. Am searching alot, but don't want to join various other groups right now (maybe later when I get more time). Thanks again!
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sparkle7
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gwb - it's not that hard... just kind of weird at first but it is helpful. This website explains how to do it -
It wasn't a cure all for me but it was good to do after a parasite cleanse. I think someone brought this up (on this thread or another thread) but detoxing after a parasite cleanse is important, too.
TerryK - thanks for all the great info! Maybe you should write a book about it? All of that stuff is so complicated. It would be nice to see something written in layman's terms.
Sometimes it's too much to start researching all of that. I don't know where to begin.
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springshowers
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Hello. Once you get doing the enemas you will feel the benefit and it sounds weird but you will even enjoy them. : ) !! Ha But really. IT is worth doing it. and just follow the directions. You can start out using just warm water and see how you do and then try other things.
This is great and Thank you all for adding to the thread. Yeah we all know we can search and dig for this info but it is great to gather it all into one place and be able to read through it back and forth and get it into one spot. So thank you all and keep it up.
ALso for those who keep posting saying they appreciate even being acknowledged and feeling like they were the odd ones out and things were not working that are working for others.. Your not alone and though there is a way out of it. IT might not feel like it but when you find the right combination and concentrate on finding that way to cleanse and detox and also support your immune system and organs etc.. You will know it and things will start flowing. Its like a light bulb going on. It is hard work no doubt.
I takes commitment and persistence and consistency. I found that when I was so very ill I wanted to just lay there and not move and I skipped the things I should do. I started to MAKE Myself get in that tub. I said to myself if I can lay in bed I can Lay in the tub. Even though that felt like a ton of work in itself I talked myself into it and did it at least two times a dsy. I measured out the water I needed to take in and I have 3 quart size bottles I fill up in the Am and those HAVE TO be gone by the next am. I always use water to take my meds and well that takes up half the water!!
If You take one goal at a time and write it down and then once you are in a rhythm ad another things. Do not try to do too many at once or you will not follow through. There s some psychology that plays into this and that mind set sometimes we have that says if I can not do it all the way or all of it then I just will not do it at all. Sometimes that can be what happens and we give up.
Like when we try a diet we say I will start tomorrow because today I did not do it so I just will not even try today. Do not let that stop you from doing what you can each day. It will add up faster than you think and do much more good than you think.
I am now working in taking walks and my rebounder tramp. I want to take one every day for at least 10 minutes and 5 of the rebounder. And right now I am only doing it about 2x a week. If I am trying I do not get down on myself. Some are old habits coming back where I say I just do not "feel" good. I am so lucky to not be laying in bed like I used to and crawl to the tub crying so I should remind myself of those things too.
Anyway that is my little pep talk and reminder of the games our mind play and as well as being ok with the small steps we can take and taking them! For me this is the order and how I built up to my current protocol.
From HERE DOWN is WHERE I AM AND HOW I Got There!
My Protocol in order and it took me about 6 months to really get serious and work up to this in this order one by one or sometimes two. It looks like a lot but I did it one step at a time and did not add anything until I felt ready to.
Diet - Did a full elimination diet where I ate nothing that came up on my allergy testing and ate nothing white or processed at all. I restested and even more indepth 3 months later and showed NO Allergies at all to foods. I have kept that diet up about 75 percent and have added some things back in that are veggies and fruits etc. Still no whites and no dairy and no grains besides brown rice. Whole real live foods from the ground. If I buy it and I can not see where it came from the earth I do not get it. So nothing processed. This was a huge big step in cleansing when I thought it was about my allergies.
Baths 30 min- Daily 1 to 2 times
Water - 1 oz per 1/2 body weight in lbs
Lemon Water and lemon oil drinks 1 whole lemon each - 1 to 2 times a day
Coffee 1 cupe - 1 x a day organic and with something like Miralax. I had to do this daily to keep my bowels moving. I have balsy of the gut and it was very important and still is to keep things Moving. For me fiber did not do it and no stimulants work because of how slow it is and I would cramp up up above or at my stomach. SO this is the combo that worked for me. Find what works for you if you have this issue and as gently as possible. It is very important to detox as if you do not the things in your gut will and can absorb back into your system again..
Body Scrubs 5 min- Before each bath
Bentonite Clay 2 tbls worked up to - 2x a day pulsing about 1 week a month now
Enemas - Rotate coffee with gentle salt water - 2x a week and I do not think more that that is good for me
Welchol/Cholestrymine - 1 to 2 times a day away from all other supplements pulsing at another week away from clay week. 6 tablets of Welchol or 1 scoop of Cholestrymine. I have both so want to use them up. Not planning on getting another after these are done though and feel I can do without these two if I use clay as time goes on.
Rife - Detox frequencies at the least 3x a week working up to every other day.
Ionic Foot Baths 30 to 45 min - 1x to 2x a week. Working on going up to every other day and plan on that for 3 months before reducing back again. Buying my own bath and got it in yesterday
Walks 10min - 2x a week working up to daily
Rebounder Tramp 5 min - 1 x a week and working my way up and trying to do this along with walks since I am in that mode.
Thats it for me right now.
I do add in B complex vitamins and such after reading about the blockages that some have and what they are taking for it but have not been tested or read up enough about it to be able to talk about it. Thanks for all the info here though.
I want to add in some of the things on Dr K's document that are things like cilantro and chorella and those sorts of things (maybe) I am doing pretty good now and do not want to add too much.. Also gut cleanses and doing parasite cleansing as I do those only maybe 2 x a year actually. I use herbals supplements and a good few weeks of Salt C too. I am sure I am forgetting something and though now that I typed that it seems like a lot. I am proud of myself now that I look back and see myself so stuck and see what I have been doing now and those are all on my own. Many are doctors orders or recommendations during my last years IV and current IV treatments I also do that have also helped me Very Very Much. That is what I mentioned before that I got professional help. THe clinics I have been going to have added in modalities that I could not and did not have at home. Those really helped me get out of the stuck stage. IT was painful and horrible at the time. Esp the things like lymph drainage using things like laser treatments were very strong and got my lymphs to let go and move. I hated them at the time.
After a few months I could do them and feel better instead of worse!! That is where you want to be!
That is the indicator that you have MADE it across the line and to the other side and out of Stuck Mode!! It can be done.! It takes something and different for everyone so I am not saying do what I did or am doing. It i just to give you ideas and see how I progressed to it and maybe that idea will help you get there too. I really want to emphasis that because there is nothing that works across the board for everyone and you have to find those things for yourself with trial and error. I will say though that most all that I tried I kept on board in some way but found the right dosing and frequency and some more than others or even some just a oouple times a year.
In the following months to come I may change it down to reduce some and increase others. I hope to increase exercise and may reduce some of the others as I do so. Its all just feeling it out as you go. I am just pretty excited to be feeling so much clearer and like my body is working. I am not cured or done with lyme disease but when I treat for it I feel like my body is able to handle that treatment. For me that is huge in itself and why I started this conversation.
I am here to cheer you all on and support you in any way I can.! Blessings and I care about all of you!!
Sorry this got so long!
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gwb
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posted
sparkle, thanks for the link. Looks real helpful.
I agree with you about all this stuff being so complicated. People talking about "pathways" or to quote Terry K, " as far as the methylation cycle and TMG, I think it is used to bring down homocysteine levels which can be impacted by MTHFR C677T"
What does that mean? I'd need to call Marnie here to interpret this--no wait a minute, she'd make it even more difficult to understand.
Too many people here speak in tongues. I'm not blaming them. That's why I keep coming here so I can keep learning and figuring out how to beat this disease
Keebler
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posted
- When someone posts terms that need more definition, often, by just searching that term at Google, you can find more detail when they are not around to answer. It would be impossible to provide all the detail here.
However, a Google search for MTHFR C677T - brings up many links.
TMG is trimethylglycine. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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posted
For you folks who eat 1-2 lemons or their juice per day:
How do you avoid tooth enamal erosion? Whenever I have any lemon juice, even in a glass of water, I can feel the juice go right to the rough spots on my teeth where there is little enamal.
Is this just my problem?
-------------------- When we are no longer able to change a situation---we are challenged to change ourselves. (Viktor Frankl- Holocaust survivor) Posts: 460 | From Maine | Registered: Apr 2009
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posted
For you folks who eat 1-2 lemons or their juice per day:
How do you avoid tooth enamal erosion? Whenever I have any lemon juice, even in a glass of water, I can feel the juice go right to the rough spots on my teeth where there is little enamal.
Is this just my problem?
-------------------- When we are no longer able to change a situation---we are challenged to change ourselves. (Viktor Frankl- Holocaust survivor) Posts: 460 | From Maine | Registered: Apr 2009
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springshowers
Frequent Contributor (1K+ posts)
Member # 19863
posted
I brush my teeth right afterward.. 100 percent for sure and I forgot to mention that..
Make sure you do not drink it before bed and forget to brush those teeth..
Posts: 2747 | From Unites States Of America | Registered: Apr 2009
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posted
I just bought a whole body cleanse (internal cleansing system by Enzymatic) last night. I'm not sure how to go about starting this.
I'm taking a lot of supplements and ABX right now, and don't want to lower the efficacy of my treatment. How should I go about starting this cleansing?
Kit includes:
Week 1: Laxative Formula - 3 tablets at night Super Milk Thistle - 1 UltraCap at night Fiber Fusion - 4 UltraCaps in the morning and 4 at night
Week 2: Laxative Formula - 2 tablets at night Super Milk Thistle - 1 UltraCap in the morning and 2 at night Fiber Fusion - 4 UltraCaps in the morning and 4 at night
Well, now that I look at it the instructions are pretty clear. Do I need to be worried about any treatment disruption...I guess that's what I'm looking for.
TerryK
Frequent Contributor (5K+ posts)
Member # 8552
posted
Thanks Keebler for answering. I had to go out yesterday and wasn't around much the rest of the day.
gwb - sorry if I posted terms that were not defined. MTHFR C667T is part of the methylation testing that is done by Dr. Yasko and other doctors. More explanation follows:
Here is the definition of MTHFR which I found by doing a search on google.
"Methylenetetrahydrofolate reductase (MTHFR) is an enzyme that in humans is encoded by the MTHFR gene."
I found this file which explains a lot of what Dr. Yasko methylation testing covers. http://tinyurl.com/376hvn
Here is the explanation for MTHFR C667T "MTHFr C667T helps to convert homocysteine to methionine in the methylation pathway. This enzyme pathway has global effects for immune function, muscle metabolism, neurochemical production and regulation, and detoxification."
Here is a chapter from Dr. Yasko's book "Genetic Bypass" (she has a newer book out now though) http://tinyurl.com/ylzzuu5
gwb - What does "pathway" mean?
In general terms it means a path to get from one place to another. In medical terms it usually means looking at one specific thing (like an MTHFR enzyme) and following all of it's processes from start to finish such that you know what it is doing, what it affects and what the end result of it's actions are). You would consider all the things that are affected along the way to be in the pathway. I'm afraid I've explained it rather clumisly but I hope it helps.
One doesn't need to understand the nitty gritty of the methylation cycle in order to see if the treatment might help. Many people who don't want or can't get the genetic testing try the simplified protocol. It has been posted here at lymenet in a link provided in a previous post above but it is also listed in the files section of the yasko yahoo group. http://health.groups.yahoo.com/group/CFS_Yasko/messages
Yes, some of the information is complicated. It is the nature of the information. I'm not trying to provide a full education on the various protocols/issues - others have already done that via books, articles, videos, discussion groups etc.. My hope is to point out areas that one can look at further in order to help themselves.
Those who want to understand must take one area at a time and go slowly and have patience. You won't understand it from one post on lymenet. Those who don't want/need to fully understand can try the various protocols that have been developed and see if they help. If you have an LLMD or other doctor who is helping you, run it by them and see what they think.
Just a comment - Marnie gets blasted on a regular basis for trying to put her thoughts out to this group because not everyone can understand her posts. I just scroll by some of her posts because it would be very time consuming to look everything up to try to understand them all. Some of her posts have helped me put some things together which I have been able to use to help myself and others. I try to graciously accept what is offered and I ask questions when needed.
I have learned over the years that I must take responsibility for my own recovery which means spending the time and energy to research and try to understand things that might help.
Spring - yes, it's nice to have it all in one thread. We have many threads in the archives that attempt to put the information about one subject together for convenience. Some of those threads are listed in the newbie links and some are not. If no one searches for that information, the wheel will continue to be re-invented. There are lots of valuable posts in the archives that will not be duplicated in this thread because some of the posters are no longer here and others have posted it before many times and don't want to spend their time and energy posting it again.
Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- "Too many people here speak in tongues" ?
If there is a new word or term, and if the poster just has not been able to detail that fully - that is what Google is for - look it up.
To post takes enormous energy and when there is something to look up in a post, that is the least one can do after being given so much great information - all for free.
A lot of answers are posted but don't skip over the maps, too. Take it a step further if you want to know more.
Or just skip over it. Come back later when you have more energy. Those who post here are tired, too. Their hands hurt, too. Sometimes, they can post only a key but you might have to open the door.
Work with them rather than criticize for it not all being spelled out in every little detail.
Google and PubMed are at your fingertips, too. And, where articles are suggested that more fully explain, there's a reason. Not everything can be fully addressed in a post, nor should it be expected.
For instance, it was just so easy it was to take a term new to me "MTHFR C677T" and just hop over to Google. And, Presto - tons of great links. Just follow the breadcrumbs and you'll get back home. -
[ 03-24-2010, 07:29 PM: Message edited by: Keebler ]
Posts: 48021 | From Tree House | Registered: Jul 2007
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springshowers
Frequent Contributor (1K+ posts)
Member # 19863
posted
HI WOlfed
That looks to be a general cleanse of sorts for the guts and liver etc.
I do not see anything in it or any reason to think it would disrupt or affect your treatment in any way that is negative.
If anything you may start to notice your meds effectiveness is improved.
Good Luck with doing that ... it looks pretty gentle too
Posts: 2747 | From Unites States Of America | Registered: Apr 2009
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posted
Wolfed, My doc put my daughter and I on this last November. We used it right along with our other supps and meds.
One note on the fiber fusion tho, I believe it contains some form of oat bran, so beware if you are a celiac!
-------------------- When we are no longer able to change a situation---we are challenged to change ourselves. (Viktor Frankl- Holocaust survivor) Posts: 460 | From Maine | Registered: Apr 2009
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gwb
Frequent Contributor (1K+ posts)
Member # 7273
posted
Hey folks, my comments were mostly made in fun and jest. True, I don't understand a lot of this stuff, but like I said in my post above, "I'm not blaming them (anyone). That's why I keep coming here so I can keep learning and figuring out how to beat this disease".
I can obviously do a google search if I want to learn more about this for sure. But I do think that if someone is going to bring up new things like this, it wouldn't hurt to explain it to the best of their ability and/or provide links to websites that will make topics like this more understandable for those of us who's brains are half the size of a pea (like me).
Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Maybe they ARE doing the best they can. Some key information is sure a lot better than none. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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massman
Unregistered
posted
A simple short explanation is not needed to generate further interest ?
I don't have the time to google everything or check out the 19 million hits from the googie search. Most days.
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springshowers
Frequent Contributor (1K+ posts)
Member # 19863
posted
Hey Back to detox ideas..
Lets not contaminate a great thread and if you do not mind could you start a new thread for this other topic. Makes it hard to follow what the detoxers are trying to ask and follow up on.
Thanks Much appreciated.
Posts: 2747 | From Unites States Of America | Registered: Apr 2009
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springshowers
Frequent Contributor (1K+ posts)
Member # 19863
posted
So today I was able to during my IPT treatment to get what they call and Lymph drainage foot massage.
Wow was it ever nice.!!
The go through and along each of the bones from toes up and massage out any knots and open up those channels. I had an infared dome over me during the whole thing too..
It was relaxing and nice. Has anyone had one of those anywhere.
Every little bit added up helps.!
Posts: 2747 | From Unites States Of America | Registered: Apr 2009
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- massman,
You said you don't have time to stroll over to Google. If you don't have time to further study the material, then just don't.
Posts here are a gift from someone and it's not nice to say you just don't like the color or the way the package was wrapped. You don't buy a book and return it with instructions for the author to change the voice or the tense. Same here.
What is presented is likely the best work - and hard work - of someone who cares enough to try to make a difference.
Accept. Enjoy it, or expand upon what was presented for you so that you can gain a more refined understanding or learn even more from it. Or don't. But it's just rude to be critical of someone's hard work.
You have no idea just how hard they may have worked to pull together some of this stuff in as professional manner as they can - usually also offering you handy links with even more detail.
It's polite to say "Thank You." -
Posts: 48021 | From Tree House | Registered: Jul 2007
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massman
Unregistered
posted
OK Keebs I ask for something short + get nailed to the wall for it. A sentence or two is too much ?
I took my first doses tonight, and I expect some nice...ummm...movements.
I'll update this thread with how I feel about the product and process after I've completed the course.
Posts: 829 | From MD | Registered: Dec 2009
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TerryK
Frequent Contributor (5K+ posts)
Member # 8552
gwb
Frequent Contributor (1K+ posts)
Member # 7273
posted
Seems my comments were offensive to a couple of people. I apologize for that. Meant no harm and was just trying to be a bit humorous. That didn't work out so well. Again, to those who were hurt or offended, my apologies.
posted
Have taken the plunge and just started what i think will be the ultimate detox - a raw vegan diet. The immediate result is very encouraging, mainly through giving up grains I think but my pain levels have shot down. This is the best improvement I have ever seen and in just 2 days.
Posts: 148 | From europe | Registered: Apr 2008
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