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A thread to discuss lyme disease*  This thread currently has 143,143 views. Print Print Thread
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ABJoe
Sunday, November 27, 2011, 2:20am Report to Moderator Report to Moderator

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Sun Beh Nim
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Ribbit,
I understand the huge bill for supplements.  For a number of years, I took several hundreds $ worth of supplements each month - and continued to get worse, but without the supps, I'd have gone downhill much faster.

Fortunately, once I started eating per BTD, the whole body worked better a little at a time and now I mostly take homeopathic remedies and a few supps to support the major detox organs and gut flora as needed.  I'm still detoxing a bunch of chemicals, etc. and healing the cranium and nerves, so deal with much pain and other fuzzies...

Sorry to hear about your financial setbacks as well, JJR.  We are fortunate to have been able to maintain our house, etc. through all of my/our health problems - Deo Gratias.


RH-, ISTJ
Wonderful Wife = A+ Teacher; Darling Daughter = A- SWAMI Explorer
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ruthiegirl
Sunday, November 27, 2011, 2:24am Report to Moderator Report to Moderator

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Leanne, I didn't work enough years to qualify for SSDI either. What I get is SSI, which doesn't have any "prior work" requirements but does have income limits. If I earn too much money, or if I had too much money in the bank, or if I marry somebody who's rich, I'll lose my benefits.  You may not qualify for this program at all, since you're married to somebody who's working. As a single mother, child support payments from my ex (when he's able to pay them) don't count as "my income" but rather "my kids' income." But if we were still together, his income would be "household income" and might interfere with SSI.

I also didn't qualify for SSI the first time I applied.  I was rejected at first, and had to appeal. I'm just thankful I only had to appeal once.


Ruth, Single Mother to 19yo   O- Leah (in Israel for the school year), 17yo O- Hannah, and  12yo B+ Jack


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JJR
Sunday, November 27, 2011, 4:18am Report to Moderator Report to Moderator

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Thank you Joe.  We still have a lot to be thankful for.  And moving closer to my Mom is a good idea anyways.  It seems like this is where God is leading us and it's all going to work out for the better anyways.


The poster formerly known as "ABNOWAY"

"Finally brothers, whatever is true, whatever is honorable, whatever is just, whatever is pure, whatever is lovely, whatever is commendable, if there is any excellence, if there is anything worthy of praise, think about these things." - Phillipians 4:8
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Ribbit
Sunday, November 27, 2011, 4:52am Report to Moderator Report to Moderator

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Ruth, I don't even know the differences.   I don't know who to ask.  I'll probably have to talk with another lawyer.  The first one I spoke with said there was no way I could ever pull it off.  Other people say it has nothing to do with *his* income and they haven't had trouble at all.  It makes me wonder if it's by state or what-not.  Or is it federal?  I'm so confused.  I never in my life thought it would come to this.  R is already working two jobs, one part-time and one full-time.  There aren't any more hours left in the day for him to work.  If it weren't for the GTD, he'd be in hot water himself.  I've been wracking my brains trying to figure out something to do here at home that would at least cover the cost of my vitamins.  There's probably stuff I could do and just haven't thought of it yet.  Like gift wrapping for people.  There are a couple of really nice neighborhoods around, and I could offer to wrap gifts for a certain amount per gift.  I'm artistic.  I can make bows.  I could do custom paper too.  Dark blue sparkly snowflake stamps on brown paper.  I'm likin' it already.

JJ, I'm sorry you're selling your house.     But maybe it'll be a good thing.


ISTJ, BTD since 5/05.  Battling chronic Lyme disease since ~1985.

"Everything is permissible for me, but not everything is beneficial..."  I Corinthians 6:12

Family: 3 As, 1 B, 1 AB, 1 O
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ruthiegirl
Sunday, November 27, 2011, 1:35pm Report to Moderator Report to Moderator

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Basically, there are two separate programs, one for "people who have worked and paid into the system" and if you qualify for that program, it doesn't matter how much money you have in the bank or how much your spouse makes or if you win the lottery while receiving benefits.

The other program is for "the poor who are too sick to work." People can qualify for this program if they haven't worked enough hours during their "working lives" but then there are strict rules about how much income you're allowed to have. If you make too much or have too much in the bank, you stop qualifying for this program, just as people would stop qualifying for Food Stamps or Medicaid if they begin to make too much money.

Both are Federal programs, but your local Department of Social Security handles it. So if you get a judge who's never heard of Fibromyalgia or Lyme Disease, he or she may not approve your application, even if a judge in another area of the country might have approved it.

Both programs have the same "medical requirements" which can be very hard to prove. I had my fibromyalgia diagnosis a few years before I applied for SSI. I was declined at first. I was very fortunate that I only had to appeal once, and that my lawyer (free assigned lawyer since I couldn't afford one) knew what he was doing.  I also hadn't worked in a number of years and all 3 kids were in school (including the preschooler) and my parents were helping with childcare after school on my "bad days."  I'd also been fired from my last job for calling in sick too many times.

The fact that you're homeschooling 3 kids and caring for a toddler may work against you. Caring for 4 children full-time is a difficult job, and any judge who recognizes that may think "you're healthy enough to raise your kids, so you can't be disabled."


Ruth, Single Mother to 19yo   O- Leah (in Israel for the school year), 17yo O- Hannah, and  12yo B+ Jack


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Goldie
Sunday, November 27, 2011, 1:51pm Report to Moderator Report to Moderator

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Can some of you enlighten me some more.. co-infections, what are some that you had, and what did you do to get rid of them, or does one ever get rid of them?  

I still see everyone taking stuff that works, but no consensus on what when or why.  Its like they trow the kitchen sink at you and hope to accomplish something/ no doubt some helps and some works, but it does seem like a c**p shoot.. If any of you feel that there is one item that works, or one item that made a difference for some specific item to be - interpreted --  as a good sign, going in some/one 'direction'...

Like: what is a parasite, we have many as it is even if 'healthy', what are some numbers or loads that make a difference in diagnosis, and which are treated with what or how? and is one parasite in all who suffer, are there 10 different ones in all who suffer and what exactly does that or those parasites do to on organ, or the brain?

I am sorry to ask, but if no one ever compares notes, how is anyone ever going to get better?

There are hundreds of sups available, I bought hundreds of bottles, (I don't have Lyme but I had pain for decades) I spent thousands and know that for some I trusted others to no avail and some I bought because I wanted to buy in hope -- except for one --- they all where not effective enough to notice a difference.  Maybe they did no harm, but as for doing much I could not say, and I bought them from quality stores and 'professionals'.

I think there has to be a spreadsheet to be made entering whatever data, starting with situations like what Ribbit went through last year, and then showing what she finally did to make it through her day today and what she will be learning about her symptoms and expressions once she learns more about what she is expected to do.

I mean you all are experiencing more or fewer of the symptoms as shown in Under Our Skin, as detailed as that film is, it still skips over all of them, and it certainly does not deal with what works when and for what.  That is the place where I start to ask all my questions.  Don't you also?

DO any think such a spreadsheet would help?  I might create it if it would serve to preserve a record of 'what works, and what did not.  Some things can be killed off, some things can only be put back into balance by changing the environment within..  

DO any think such a spreadsheet would help?  I might create it, if it would serve to preserve a record of 'what works, and what did not.      

  


  

  






Being here is invaluable, but not enough. We need ALL the Doctors. I needed them for a very small cancer spot-I could never feel!!! Please do your mammograms! Doing so saved me from cancer later on. I am grateful! Thanks for learning from my experience! I was lucky! I wish the same for YOU!
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Kim
Sunday, November 27, 2011, 2:02pm Report to Moderator Report to Moderator

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Quoted from Goldie
Can some of you enlighten me some more.. co-infections, what are some that you had, and what did you do to get rid of them, or does one ever get rid of them?  


There are over 800 coinfections and the doctors don't know what a lot of them are.  Some medical experts would have you believe that ticks don't migrate.  Technically they aren't supposed to.  But, coinfections only seen on the West coast are showing up on the east coast.  They say an Japenese lyme bacteria is showing up in the US.

Over time the most I know can get rid of the coinfections.  If you have lyme disease for a long time, you never can get rid of it.  The best you can hope for is remission.  Your immune system has to be strong enough to keep it under control.  

Go to Ilads.org sometime.  Tons of information there about all of this.




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Ribbit
Sunday, November 27, 2011, 2:18pm Report to Moderator Report to Moderator

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Yes, and that is my fear, Ruth.  That if they decide I'm too sick to work, I must be too sick to care for my children.  It won't matter that I cook three fabulous meals a day and regularly declutter so I don't have to clean as much.  I clean on days when I feel good, just like any other person.

I called HSLDA (Home School Legal Defense Association) and they said there are many families who are members of HSLDA who are on disability and that it's not usually any trouble at all because homeschooling is legal in all 50 states and it's not based on whether the mother is sick or not.  They said if I have any trouble, to just give them a call.  Their lawyers are standing by to defend us.  ...........   That's an interesting thought.  I wonder if I could get one of their lawyers to help.  We already pay for the service.


ISTJ, BTD since 5/05.  Battling chronic Lyme disease since ~1985.

"Everything is permissible for me, but not everything is beneficial..."  I Corinthians 6:12

Family: 3 As, 1 B, 1 AB, 1 O
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Goldie
Sunday, November 27, 2011, 2:51pm Report to Moderator Report to Moderator

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Thanks Kim.. will LOOK again, but I had not seen a spreadsheet.. or anything like it .. something simple for self reporting..

Ribbit.. I don't think sickness is based on work history..
You are 'not' looking for Social Security.. you need to ask for SSI not SSD..  you would qualify  differently.     Work history only applies to 'disability'.  House wifes are not compensated for work time so you would not qualify under that.. ask your lawyer about the right terminology.  then see any doctor for that.. you are just as sick by any doctor - see your history and hospital stays.. as you would be under the other doctor..    


Being here is invaluable, but not enough. We need ALL the Doctors. I needed them for a very small cancer spot-I could never feel!!! Please do your mammograms! Doing so saved me from cancer later on. I am grateful! Thanks for learning from my experience! I was lucky! I wish the same for YOU!
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ruthiegirl
Sunday, November 27, 2011, 3:32pm Report to Moderator Report to Moderator

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I'm not worried that you'd get disability and then CPS would swoop in and make you put your kids in school. I'm more worried that the Disibility Judge will look at all you do and determine that "you're not really sick"  because you're caring for 4 young children. In my case, the lawyer talked about how my on again/off again illness would interfere with employment- how could I "maintain employment" if I called in sick twice a month? If you're not looking to be employed, it may be harder for you to get approved.

What you need is a lawyer who's familiar with disability cases in your area, preferably one who's also experienced  with homeschooling families and knows how to present your case so you're more likely to be approved.


Ruth, Single Mother to 19yo   O- Leah (in Israel for the school year), 17yo O- Hannah, and  12yo B+ Jack


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Goldie
Sunday, November 27, 2011, 4:15pm Report to Moderator Report to Moderator

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Ribbit If that where the case then I would ask my doctor to request that he request public health care to COME into the house.  Then after that is going on for a while there would be enough History.. there are home health care workers and home care nursing staffs for that.. this I think is not income based, and yet even then you seem to be short on money any way to at least be eligible.. you have handicapped children or a child that needs help...

Also the children may be eligible for help to study, speech and other things.. looking into that might help as well.. I am not in favor of doing that, but as a means to getting help to help your self, I am suggesting that you look into that.  


Being here is invaluable, but not enough. We need ALL the Doctors. I needed them for a very small cancer spot-I could never feel!!! Please do your mammograms! Doing so saved me from cancer later on. I am grateful! Thanks for learning from my experience! I was lucky! I wish the same for YOU!
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nowishow
Sunday, November 27, 2011, 6:20pm Report to Moderator Report to Moderator

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Ruthiegirl - You might be a good candidate for Teasel. It's fairly inexpensive and I have an unopened bottle that I'd be happy to send you. If you try it, increasing the dose everyday and get a herx response (increase in symptoms) then it may be a good fit for you. Many have been helped tremendously by it. Please PM me and let me know. I tried Teasel and it didn't seem to effect me at all, but I've met many others who have gotten great improvement from it. I believe it's very good if you have lots of "Lyme" bugs (I have mostly Babasia).

Goldie - There is a someone on the Buhner forum that made a spreadsheet. I haven't seen it. But, we are all so different and have such varied bodies and infections that no one treatment works for everyone. The book "The Top 10 Lyme Disease Treatments" explains this much better than I can here (you might be able to pick it up at the library, I did). There's no easy answer or one good cure. Patients all need different kinds of treatment and support because of the different bugs in their systems and how their bodies have been compromised. My heart is greatly affected, but my joints are only slightly affected. But for many people it would be the opposite or something entirely different. It's not just a matter of killing the bugs. You have to get the immune system working again, detox the body, correct the hormones, and heal the damage done. So you can see that one system cannot fit all. Just like this diet, we are all individuals.  


"Anxiety is the gap between now and then"

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JJR
Sunday, November 27, 2011, 7:44pm Report to Moderator Report to Moderator

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I have a bottle of teasel also, that I've not tried yet.  

Goldie, good questions.  I think there are probably more co infections than they even know.  Like Nowishow said, we're all so different.  I know I had yeast terribly.  But it was after having quite a few antibiotics from a tooth going bad and killing H.Pylori in my stomach.  The ND I used to go to said I had the babesia/maleria co infection.  And I also think I had crypto spirridium.  Which might have been more about the water in our city.  There was an outbreak about 15 years ago that killed some people, because the drinking water from the city wasn't sanitary.  

So, the two I think I've had that are recognized are:

Yeast/ Candidiasis
Babesia / Maleria.  

And then there were two that I had / have probably from having a compromised immune system:

Helicobacter Pylori (stomach thing)
Crypto Spirridium.


Who knows what else.  But I know when I worked at the daycare, I was constantly getting sick.  It was like every 3 days.  Especially in winter.  I think it was just picking up the bugs the kids brought.  Which seemed like a constant struggle.


The poster formerly known as "ABNOWAY"

"Finally brothers, whatever is true, whatever is honorable, whatever is just, whatever is pure, whatever is lovely, whatever is commendable, if there is any excellence, if there is anything worthy of praise, think about these things." - Phillipians 4:8
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Kim
Tuesday, November 29, 2011, 4:31pm Report to Moderator Report to Moderator

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For anyone who is interested, I decided to chronicle my Lyme treatment journey on caringbridge.org.  I also want to make sure that anyone who visits to follow my progress knows about Dr. D's work on epigenetics.   Thank you Dr. D, I know I would be much worse off if not for following my swami.  Many don't think about their immune system until it crashes.  

I just started the website so it does not have that much content yet, but I will add to it during the next week as my health permits. For now, I am bedridden.

Here is the link:

http://www.caringbridge.org/visit/kimbrown777

You usually have to log in to visit anyone's site.  
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nowishow
Tuesday, November 29, 2011, 5:54pm Report to Moderator Report to Moderator

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I have another friend who has used caringbridge since she was diagnosed with brain cancer seven years ago. Yes seven years and she's still here to tell the tale. She has an enormous spirit and drive to get well.

It was great to see a photo of you. Hang in there! It will get better. I'm looking forward to your next entry.  


"Anxiety is the gap between now and then"

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Goldie
Tuesday, November 29, 2011, 6:07pm Report to Moderator Report to Moderator

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I just answered you there.. good idea, more people should do it..

I have decided to do another round for my diet Jan 1 during vacation.. actually looking forward to it.. doing good so far..

I do not like you being bed bound.. care to call me.. You might be able to help your body to correct itself.. ..


Being here is invaluable, but not enough. We need ALL the Doctors. I needed them for a very small cancer spot-I could never feel!!! Please do your mammograms! Doing so saved me from cancer later on. I am grateful! Thanks for learning from my experience! I was lucky! I wish the same for YOU!
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ruthiegirl
Tuesday, November 29, 2011, 9:03pm Report to Moderator Report to Moderator

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I've been using Caringbridge to keep up with family I met online years ago. She had a homebirth for her triplets, then a few months later one of them had a seizure and nearly died. She's now severely brain damaged and has numerous serious health problems.

Kim- I just signed up to get email updates from caringbridge whenever you update your journal.

nowishow- tell me more about this teasel stuff.


Ruth, Single Mother to 19yo   O- Leah (in Israel for the school year), 17yo O- Hannah, and  12yo B+ Jack


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nowishow
Wednesday, November 30, 2011, 7:56pm Report to Moderator Report to Moderator

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Quoted from ruthiegirl

nowishow- tell me more about this teasel stuff.


A lot of Lymies use teasel. Some people claim to have been cured by it. I don't get any response from it at all and I bought two bottles, by mistake. I have it in tincture form. So I'd be happy to send the unopened one to you. Here's a link to a site about it.

http://www.ladybarbara.net/html/using_teasel.html


"Anxiety is the gap between now and then"

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TJ
Wednesday, November 30, 2011, 8:53pm Report to Moderator Report to Moderator

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Quoted from nowishow
A lot of Lymies use teasel. Some people claim to have been cured by it. I don't get any response from it at all and I bought two bottles, by mistake. I have it in tincture form. So I'd be happy to send the unopened one to you. Here's a link to a site about it.

http://www.ladybarbara.net/html/using_teasel.html
Thanks for sharing the link.  I especially liked one point she clarified that I'd felt was true already.

Quoted Text
Here I’d like to explain my sense of the difference between a HERX and a flare-up. The classic Herxheimer response happens when SO many spirochetes have been clobbered suddenly that your liver, kidneys and lymph glands just can’t HANDLE it. Lots of folks think this shows that something is working. Fact is, this is BAD for your body and needs to be avoided.
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JJR
Wednesday, November 30, 2011, 10:06pm Report to Moderator Report to Moderator

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Isn't that interesting.  I know I just don't like herxing.  But, it has been a part of my journey.  I don't know if you can avoid it completely though.  It'd be nice if you could find the right balance between killing the junk and not overwhelming your system.  It's a hard thing to balance for sure!!!


The poster formerly known as "ABNOWAY"

"Finally brothers, whatever is true, whatever is honorable, whatever is just, whatever is pure, whatever is lovely, whatever is commendable, if there is any excellence, if there is anything worthy of praise, think about these things." - Phillipians 4:8
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Kim
Wednesday, November 30, 2011, 10:38pm Report to Moderator Report to Moderator

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As far as I know, you can not avoid herxing.  The point is not to overload the immune system so much with die off that you set yourself back.   What ever treatment you choose should be appropriate to where you are with your infection load.

Teasel is a great herb, but everyone responds differently to all the elements of treatment for Lyme disease and coinfections.  
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nowishow
Thursday, December 1, 2011, 12:25am Report to Moderator Report to Moderator

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I believe the GTD started me herxing so I don't think it can be avoided if food is enough to give you a herx. I think it's a good idea to keep herxes to a minimum if possible though.


"Anxiety is the gap between now and then"

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TJ
Thursday, December 1, 2011, 12:54am Report to Moderator Report to Moderator

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Kyosha Nim
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This is the paragraph following the one I quoted above:
Quoted Text
By contrast, depending on where in your body the spirochetes are hiding out, taking Teasel can cause a return of previous symptoms because it’s ‘calling out’ the spirochetes exactly THERE. Again, adjust your dosage to where you can stay comfortable/functional.
I think there is a difference between the pains of healing and a true Herxheimer reaction:
Herxheimer reaction - Wikipedia

I'd expect there to be some minor discomfort, but if the level treatment leaves you incapacitated, you need a less aggressive treatment regimen... unless of course you enjoy suffering, are financially independent, and have people around to handle all your housekeeping business!
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Goldie
Thursday, December 1, 2011, 1:46pm Report to Moderator Report to Moderator

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Quoted Text
By contrast, depending on where in your body the spirochetes are hiding out, taking Teasel can cause a return of previous symptoms because it’s ‘calling out’ the spirochetes exactly THERE. Again, adjust your dosage to where you can stay comfortable/functional.


Quoted Text
I think there is a difference between the pains of healing and a true Herxheimer reaction:


Are some confusing/exchanging homeopathic reactions with Herxheimers as being good versus the one being to strong and thus debilitating?  I am just asking, I seem to be unsure...

In my work with body 'energy' - it is never the intention to kill, but to make uncomfortable, to create on environment where replication might not be as great, where long life might be shortened, or where nutrients goes to / feeds the good guys and leaves the other over populated and starving, thus creating new paradoxes, new synergy, new interactions, healing...

'Killing' as a concept with antibiotics, seems to make the critters only more and more resistant.. I take anti's for when I need them, but when I took them for a full year (mild form) it did not prevent another (herpes) outbreak 4 month later - and even 2 while on anti's in between.  The 'recent' outbreak was less painful, but still there, in the same spot affecting a nerve down the back of my leg..(not Lyme related)    

I think in some way I would be much more interested to 'see' what comes out of LYME patients every day.. just normal fecal matter, or small stringy things or round things or colored things, or changes from one food / meds item to the other... I would think that output is much more then just 'interesting'...  I wonder if science lab / research techs would approach this question differently?  


Being here is invaluable, but not enough. We need ALL the Doctors. I needed them for a very small cancer spot-I could never feel!!! Please do your mammograms! Doing so saved me from cancer later on. I am grateful! Thanks for learning from my experience! I was lucky! I wish the same for YOU!
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ruthiegirl
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SWAMI O+ Gatherer, Healing from Fibromyalgia
Kyosha Nim
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So would a herxing response from Teasel mean that I do in fact have lyme, and "no reaction" would indicate that I don't have it?


Ruth, Single Mother to 19yo   O- Leah (in Israel for the school year), 17yo O- Hannah, and  12yo B+ Jack


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BTD Forums    Diet and Nutrition    The Encyclopedia/ D'Adamo Library  ›  A thread to discuss lyme disease*

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