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Author Topic: Alternative Lyme Treatment
Carmen
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Hello,

I am new to the forum and have just been diagnosed with lyme disease. I came here to see how other people are coping with it and to document my alternative treatment as well. I turned against conventional medicine a long time ago and I will not be using regular antibiotics... but still I can see that there is much good information here on this site.

I was bitten by a tick this past spring. About one month ago I developed symptoms similar to RA in many of my joints. Since I have had problems with RA in the past I started my RA protocols that always worked pretty quick for me.. But after 4 weeks things were getting worse so I went to my naturopathic doctor... I will call him Dr. W. I went with the intent of finding out about Low Dose Naltrexone as I thought it might help the RA. While sitting in the waiting room to be seen a nagginging little voice inside said, "Remember! you were bitten by a tick this spring!"

Im still not convinced that I might have some RA going on also. Can Lyme casue such signficant joint swelling and pain that comes and goes and migrates?

The doc decided he needed to examine my blood to see if Lyme was present. To do this they use a dark field live blood analyis exam. They look at your living blood under a microscope and you can see it on a TV screen. You also look as samples of your blood on the screen that have been dried.

In the live blood sample things didn't look to good. My red blood cells were clumped together, you could see candida yeast, a few parasites (which they said everyone has) and you could see the Lyme cysts which appear like spheres a little larger than the red blood cells.. they appear hollow and have specks of white in them that I was advised were spirochetes. The cysts are similar to eggs that one spirochete will form. When the cyst breaks open many spirochetes break out. I was told that it is theorized that the use of conventional antiboitics push the spirochete to form cysts. This may be similar or the same as a biofilm but Im not sure.

I was told that the clumped RBCs might make me feel fatigued for I was not utilizing oxygen properly, but still I was told that my blood looked better than most people who came into the clinic. ???? Oh MY God!

In each view of my blood there were several cysts, anywhere from two or three up to six. The person doing the exam had a hard time seeing lone spirochetes. She said she saw one but did not manage to get a photo of it as it moved under red blood cells and then she couldn't find it. She told me that they had been able to film a cysts as it was breaking open once and they saw the spirochtes spilling out into the blood.

There was also noted candida in my blood and they said a signficant amount that needed to be treated.

In the dried samples it was noted that I was vitamin C deficient and that there was heavy metal toxicity also. The metals are mostly in the liver but the blood will pick some up as it moves through the liver.

Another test they did was called the Asyra which is I guess kind of a biofeedback test that monitors your meridians. It noted many things including parathyroid hormonal issues indicating stressed immunity, eye stress, and weakened lung resonance which also indictes weakend immunity resistance. there were a few other things of lessor importance.

I had really been feeling the eye stress perceived as a nebulous decline of vision that I couldn't quite put my finger on, and as far as the lungs, I had just been getting over a mild case of bronchitis that I was successfully treating with raw garlic... I also have mild asthma from chemical sensitivity.

So I was given a treatment protocol and plan on returning in 6 weeks. The two main medicines used are to kill the spirochetes and to dissovle the lyme cysts. They really wanted me to come in for IV therapies of vitamin c and some other stuff but quite frankly I could not afford it so it was agreed that I would take vitamin c to bowel tolerance at home along with a lipsomal c product. It was explained to me that Lipsomal c was excellent an penetrating the cell and that it is primarily metabolized within the cell. Regular vitamin c stays pretty much in the blood and they feel that both are essential to recovery. In thier vitamin c therapies they have patients do both.

I think they offer other IV therapies for this based on individual needs but Im not sure what. In general I am not terribly sick. I still am out working on the ranch, doing the garden and harvest chores, but I do get very fatigued and have to stop periodically through the day to rest. I dont have insomnia or extreme weakness as no many report. I do have somekind of neuro twitch that is not visible on the outside. It feels like my spirit being is jolted inside my skin every once in a while... I dont know any other way to discribe it. This only happens once every couple of weeks so its still relatively minor compared to what others have.

So they gave me this product called LDM - 100 to kill the pathogens and boost my immune system. I found a fair amount of info about it on the net. It appears that LDM -100 is a specific product for an herbal tincture of the plant called Lomatium Dissectum. There appears to be several manufacturers of this stuff but if you google just LDM you wont find it. Search LDM 100. I dont know why that is. or you can just search Lomatium Dissectum.

They also gave me an enzyme product called Marcozyme. They said that these enzymes will dissolve the cyst. Its got to be taken away from meals so it goes into the blood stream. they are basically digestive enzymes. When the cysts are dissolved then the herbal preparation can kill the spirochetes that fall out of them.

They could not tell me how long treatment would take but it seems that 6 weeks is minimum. Another dark field blood test will help to determine that later.

They also gave me some Standard Process products for the candida and one to help with general detoxification. Im suppose to take D3 10,000 IU a day as well as continue on my regular vitamins of B complex, ALA, folate, biotin, Acetyl L carnatine, co Q10 etc. I added Dandilion root for the first two weeks based on readings about LDM to help with the detox that it might bring about.

I make my own lipsomal c and Im using that right now but it is not a proven remedy and it is unclear just how much c becomes lipsomal when I make it so I will be ordering some lipsomal c from Livon Labs soon because I want to be sure. I'll also take about 8 to 10 grams of regular c a day or until I hit bowel tolerance with it.

This consutlation and the price of the medicines cost me $550. Im hoping it works because if the IVs become necessary it will jump up into the thousands of dollars. I still have to find a way to detox heavy metals.

So for anyone interested in an alternative treatment here it is. These docs I went to have been treating Lyme successfully for a while according to reports. The woman who does the dark field microscope, she told me that they saved her daughter's life with their remedies for Lyme and that she is fully well now. Apparently the child was on her death bed after much misdiagnosis from regular medicine. It inspired her to learn the dark field microscope work.

I will report back when I get some idea of how I am progressing, or not.

Carmen

[ 10-06-2013, 11:00 AM: Message edited by: Carmen ]

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steve1906
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Hi Carmen, Welcome to Lyenet, you're right in saying>

(I turned against conventional medicine a long time ago and I will not be using regular antibiotics... but still I can see that there is much good information here on this site.

Joint, muscle pains & joint swelling are on the top of the list for Lyme & co's.

How long have you had "chemical sensitivity"? I never had this till I got lyme disease, it's another one of the symptoms.

This is always a good place to start, read this>

http://www.lymenet.org/BurrGuide200810.pdf

--------------------
Everything I say is just my opinion!

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Carmen
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I've had chemical sensitivity ever since I worked in a facilty that used carpet cleaners on a regular bases. That was maybe 8 years or more ago. I dont think its related to my lyme but the reduced immunity it causes might help the Lyme get hold. Perhaps for you the Lyme reduced your immunity and detox pathways to the extent that you cannot process the chemicals you are exposed to.
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Carmen
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oh and thanks for the link Steve. I found that first here on the forum and have mostly read it already.
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Keebler
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LDM-100 (Lomatium Dissectum) is excellent. And enzymes with that, also a good idea.

I've done both but it was certainly not enough. Combinations, rotations, etc. are usually best. Not sure how that will evolve for you.

You may be in good hands. It's hard to tell without knowing more about the clinic. Just be absolutely certain that the practitioners at clinic you go to are ILADS-educated, so they know all about lyme and other TBD (tick-borne disease).

I've been to many otherwise excellent NDs (or similar) who knew a little about lyme but not enough - and carried me too long without adequate skill & knowledge. Just be sure, in your case, they they know all that is possible.

When considering herbal / nutritional / adjunct methods:

if at all possible - because each person & each case is different - it's best to consult with an ILADS-educated LL ND (lyme literate naturopathic doctor) (or similar) who has completed four years of post-graduate medical education in the field of herbal and nutritional medicine -

- and someone who is current with ILADS' research & presentations, past and present, and has completed the ILADS Physician Training Program (see: www.ilads.org )

Many LL NDs incorporate antibiotics (depending upon the licensing laws in their state). Some LLMDs and LL NDs have good working relationships.

When possible, it's great to have both a LLMD and LL ND and even better when they have a long-standing professional relationship.

-----------------------

http://flash.lymenet.org/ubb/ultimatebb.php/topic/2/13964

How to find an ILADS-educated LL:

N.D. (Naturopathic Doctor);

L.Ac. (Acupuncturist);

D.Ay. (Doctor of Ayurvedic Medicine);

D.O.M. (Doctor of Oriental Medicine);

D.O. (Doctor of Osteopathy);

D.C. (Doctor of Chiropractic);

Integrative / Holistic M.D., etc.

Be aware that integrative doctors can have various levels of formal herbal &/or nutritional education, perhaps even just a short course. Do ask first. Some have learned on their own from experts in the field. There are many ways to acquire knowledge and most are eager to share basic details about their training. You want someone with a deep knowledge.

Some of the specialities above may not actually treat lyme yet, for things such as physical adjustments, it is just good that they are also LL, at least to some degree (to know never to suddenly twist the neck or spine).

Links to many articles and books by holistic-minded LL doctors of various degrees who all have this basic approach in common:

Understanding of the importance of addressing the infection(s) fully head-on with specific measures from all corners of medicine;

knowing which supplements have direct impact, which are only support and which are both.

You can compare and contrast many approaches.

BASIC HERBAL EDUCATIONAL & SAFETY links,

BODY WORK links with safety tailored to lyme patients,

LOW HEAT INFRARED SAUNA detail,

BIOPHOTON - BIONIC 880 (& PE-1) links, and

RIFE links.


http://flash.lymenet.org/scripts/ultimatebb.cgi?ubb=get_topic;f=2;t=013239;p=0

What ILADS is

& WHY you need an ILADS-educated, Lyme Literate Doctor (whether LLMD or LL ND, or both)
-

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Keebler
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You say "I was told that the clumped RBCs might make me feel fatigued for I was not utilizing oxygen properly. . ." (end quote)

That's only a part of the reason for both the clumped RBCs, or for fatigue.

This statement implies they are not really as LL as they should be (but they may not have told you everything they know). Every LL doctor knows that this is very common with lyme (& possibly other TBD,too). Every LL knows all about Rouleaux and the effects on elevated Fibrinogen.

A good ILADS educated LL ND would also know that fatigue involves far more and should put you on adrenal support & mitochondria support. Now, they may be planning this later. Be certain they have this knowledge.

When I say they MUST BE ILADS "educated" that does not they must use the full antibiotic protocol but they MUST be ILADS educated so they know the science of all the TBD and that it will take a complex combination plan beyond LMD-100 as the main anti-infective.

All they gave you for support will help the liver but nothing is specific enough for adrenal support (Vitamin C will help but it's not enough).

The enzymes should help but may not be enough. They were not for me. Still, it's is a good start and they may plan more for later. Just be sure they don't stop. A herb called PRICKLY ASH BARK is excellent, too. It's common for LL NDs to suggest that, too, along with enzymes & combination "targets" for infection that are the underlying cause.

BABESIA is highly suspect with Rouleaux, too, so be sure that is assessed. Ask about how they assess / treat other TBD so you have an idea of their scope in advance. Good luck.


http://en.wikipedia.org/wiki/Rouleaux

Rouleaux (stacking RBC)
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Keebler
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http://oneearthherbs.squarespace.com/important-herbs/prickly-ash-bark-zanthoxylum-species.html

PRICKLY ASH BARK


https://www.herb-pharm.com/store/product_info.php/products_id/155?usercpath=59

HERB PHARM - Prickly Ash Extract, Tincture form (this can be found at many health markets, www.iherb.com and www.vitacost.com )
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Carmen
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Did you know that in most states ND physicians have access to almost the total drug formulary and that they can write prescriptions?

I dont see why an MD is required, especially if you are not interested in taking antibiotics for Lyme.

I dont know if Dr W. is ILADS or not. He is 4 year post grad licensed naturopathic medical doctor, NMD, as our state titles them and requires by law.

From all of my reading the use of antibiotics depletes the system, pushes the microbe to mutate, decreases immunity, damages organs, crates bowel dysfunction, causes vitamin deficiency, and predisposes one to superbug infection. Some people with lyme end up fighting superbugs as well, like MRSA or c-dif.

The NMD in my state can order any medical test he wants. Because in my state NMDs cannot write a drug prescription an MD is available in Dr W's office, too. In my state an NMD cannot even do IV infusion, but a chiropractor can and this is true in Oklahoma, New Mexico and Idaho, so in these states you will find that many NDs or NMDs are also chiropractors so that they can provide comprehensive assistence.

Dr W has many cured lyme cases one of which I know personally. He must be doing something right. People fly in from all over the nation to see him. I have a hard time accepting that Lyme cannot be cured in everyone with the correct antimicrobial and the correct supportive therapies to rebuild a damaged system. The main limiting factor for many is cost, accessibility, correct diagnosis and right thinking... that is an understanding of the disease process and the benefits and pitfalls of the different treatments available.

I know of someone who cured his wife's Lyme with Rife. It took a long time and finally he found the correct frequencies. He used a GB4000 with amp machine.

I've been reading that low dose naltrexone has been helpful to lyme sufferers and thats what I was after when I went to the clinic for what I thought was RA... It works by facilitating endorphin receptor sites and stimulating the body to make more. Seems endorphins have a direct link to immunity. I've read testimonials of lyme people who use LDN with good response but they still have lyme! not an acceptible outcome for me.

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Keebler
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To clarify, I was not saying a MD is required but that it is required that any ND (or similar) would be ILADS educated (or have equal knowledge of the way the infections work as do ILADS MD and NDs).

That's what I meant. All NDs are not LL. Some may think they are and say they are but they are not. I found that out the hard way, after dumping thousands of dollars and wasting years.

And I'm not at all pushing antibiotics. Being ILADS educated does not have to equal reliance on antibiotics. It's that science of the how the infections work that the ILADS "education" is also so important.

I'm not saying the who you are working with is not adequately LL - they sound promising. I just wanted to caution you to be certain they have the breadth and scope required, however it has been attained.

With the additional information in your follow up post, with the successes you note, it seems that this place is very promising and it may well be excellent care, and as LL as needed. It just takes quiet a bit of research to figure out if the doctors know all we need them to know.

Hope this place works out well for you. Best of luck.
-

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Carmen
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Actually the stacking of RBCs is common in many diseases. My adrenals did not test out badly. Im sure they didnt tell me everything they know. I spent two hours, (3 if I counted all the hurry up and wait,) with them but I bet I could have spent a couple of days going through all the information.

and remember, I'm as of yet, not a terribly sick person. In general they said most things looked well. So Im an early case I guess.

Haven't read the page on pricky ash entirely yet, but Gogi Berries are also known to assist the RBCs in the same way, about one handful a day. I've ordered some of them.

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Carmen
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regarding the enzymes.... it has been told to me that the enzymes have to be taken in a very specific manner.. one hour before eating so that they get into the bloodstream and dont stay stuck in the stomach working on food. The antimicrobial should be given exaclty one hour after taking the enzymes, this is when the cyst is most likly to have been torn open.
Before this clinic used LDM they used a combination of samento and colloidal silver as the antibacterial medicine. They told me that they changed to LMD becasue it not only attacks microbes but that it boosts the immunity in better ways than what they were doing before.

[ 10-09-2013, 01:37 PM: Message edited by: Carmen ]

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Carmen
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Keebler,what enzyme product did you take?

Im a little nervous about the LDM 100, being quite new to me. Im thinking of adding colloidal silver to the protocol once or twice a day. I use www.nutrasilver.com , well I have it anyway. Never had a need for it before.

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Keebler
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I took Wobenzyme, then another due to cost.

I would not add anything at this moment. Get started, get stable on that and then you can consider other things. But it is best to NOT add anything without consulting first with treating doctor. It can mess it all up. And if you have to think beyond their scope, it's not the right doctor.

C. Silver did keep me out of a wheelchair, though. But, again, professional guidance for an overall plan is best. And I simply cannot stress enough the importance of an ILADS-educated doctor, whatever their area.

That distinction could make a huge difference to your life.
-

[ 10-06-2013, 02:49 PM: Message edited by: Keebler ]

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Keebler
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To give you an idea of the range of issues and topics, next week is ILADS annual conference. See the speaker line-up for the full conference.

The "Basic" course will give you an idea of what you want in a doctor (even aside from any antibiotics but the theory of what needs to be targeted and how to outsmart the infections still remains vital, even if other ways are used).

IMO, ANY doctor treating anyone with lyme should know (or learn) all that is discussed at every ILADS conference. Even if they differ in thought or process, they need to exposure to such material.

There are several NDs who are ILADS members. And the fact that they communicate with each other is also very important.

http://ilads.org/lyme_programs/sandiego/ilads_sandiego-lyme-course.php

ILADS 2013 Lyme Disease Basics Course

ILADS is proud to announce a one day Basic Lyme course in San Diego, Thursday, October 17, 2013.

AMA CME Credits

This course is designed for medical professionals who are new to the treatment of tick-borne diseases, or would like a refresher course on the basics of diagnosis and treatment. It will also serve as a primer for physician assistants and nurse practitioners who are practicing in the offices of Lyme literate physicians.

ILADS encourages participants to continue their learning October 18-20 at the annual ILADS conference in San Diego


http://ilads.org/lyme_programs/sandiego/ilads_sandiego_courseprogram.php

THURSDAY, OCTOBER 17, 2013 – LYME BASICS Program / Speakers

http://ilads.org/lyme_programs/sandiego/ilads_sandiego_friprogram.php

2013 ILADS LYME CONFERENCE - See full line-up of presentations

Friday - Sunday, October 18–20, 2013

San Diego, CA

Note: Speaker for 3:30 Sat. "Utilizing Herbs and Homeopathics in the Management of Tick Borne Disease"

The opening speaker for the "Basics" program is an integrative doctor - as are several of the LLMDs set to speak.

The speaker on EAR issues: "the founder and former chairperson of the Committee on Alternative Medicine for the American Academy of Otolaryngology."

Video previews should be available after the event and full DVDs of each talk can be ordered then. (No live web streaming this year as the past two years, Sigh!)
-

[ 10-06-2013, 02:34 PM: Message edited by: Keebler ]

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Keebler
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Back to your saying that you are a little nervous to start LDM-100.

That is a wonderful product (I get it from Barlow). I have done very well with that for acute matters such as a cold or flu.

Just start with ONE drop in a cup of warm (not hot) water. Once you work up in the dose, you can put in wide mug and "swirl" to help the alcohol dissipate.

You might do okay starting with 5 drops but it's usually best to start with just one and see how that goes. I have never gotten any kind of "herx" from this but have felt a flush for a short time afterward. Not uncomfortable, just noticeable and short. I've had no problems, only felt better with this.

But it was not enough for me, regarding lyme.

I don't know what part of the plant is used for the tincture so just play it safe and NOT use hot water, just warm. Hot water can destroy some of the properties of aerial parts (above ground).

If all parts used are from beneath ground (root, rhizome) then you can use hot water.
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[ 10-06-2013, 03:08 PM: Message edited by: Keebler ]

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Lymetoo
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So you never took antibiotics for the Lyme? Do you know if you have any coinfections like babesia??

It's going to be very difficult to knock this out without antibiotics.

--------------------
 -
oops!
--Lymetutu--
Opinions, not medical advice!

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Keebler
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Good medicine is what works. Remember that ILADS educated LL ND and integrative LLMDs know how to help the body better tolerate targeted treatment.

Some LL NDs can also guide RIFE treatment (yet it will also require a combination approach).


You had some questions about RA symptoms. Detail here:

http://www.thehumansideoflyme.net/viewarticle.php?aid=65&PHPSESSID=c0adeb1d4869cfb5a38f6447d9ed7a96

When to Suspect Lyme – by John D. Bleiweiss, M.D.

This article is essential reading to gain an understanding of what it's like to HAVE lyme, the range of symptoms (and, therefore, the importance of addressing it head-on).


As it seems you've not yet been assessed for coinfections:

http://flash.lymenet.org/scripts/ultimatebb.cgi?ubb=get_topic;f=2;t=015508;p=0

Diagnosing Lyme Disease (&/or whatever else is going on)

Other tick-borne infections and other chronic stealth infections - as well as certain conditions that can hold us back - are discussed here.


http://www.anapsid.org/lyme/lymeseroneg.html

Reasons for False Negative (Seronegative) Test Results in Lyme Disease


http://publichealthalert.org/uploads/2013_6.pdf

Public Health Alert (PHA) is a newspaper committed to researching and investigating Lyme Disease and other chronic illnesses

Laboratory Tests and Diagnosis for Lyme Disease and Co-infections - June 2013

- by Armin Schwarzbach, M.D., Ph.D. - Five Pages
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[ 10-06-2013, 03:45 PM: Message edited by: Keebler ]

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Keebler
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You say: " . . . bitten by a tick this past spring. About one month ago I developed symptoms similar to RA in many of my joints. Since I have had problems with RA in the past I started my RA protocols that always worked pretty quick for me.. But after 4 weeks things were getting worse so I went to my naturopathic doctor. . ." (end quote)

Not sure what that RA protocol was, just be aware that if steroids were involved (as is the often the case with "autoimmune" misdiagnoses) whomever is treating you now should know that.

For reference:


http://flash.lymenet.org/scripts/ultimatebb.cgi/topic/1/100984?#000000

Topic: what do STEROIDS actually do to those with lyme? Risks, long term damage discussed. Links.

Includes link discussing safe, low dose Cortef for adrenal support.
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seibertneurolyme
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If you are so against antibiotics then why not try one of the herbal protocols?

I went to a seminar by Stephen Buhner. the author of Healing Lyme, and even he says that if a lyme infection is caught early he advises the patient to try antibiotics first. The reason is that you might get lucky and a couple of months of doxycycline could prevent a lifetime of more severe symptoms.

I am a little concerned about the experience of the person who did your live blood analysis. That can tell you things nutritionally but I am very doubtful about seeing lyme cysts under a microscope. It would of course depend on magnification and really knowing what you are looking at.

The LDM will either cause a herx or cause no reaction in my opinion. I personally have little faith in homeopathy but LDM is cheap and I don't think it could hurt to try it.

Nutrition is important with tickborne diseases, but without some type of killing agent such as antibiotics or herbal antimicrobials I don't think you can get rid of a lyme infection.

Lyme arthritis is generally easier to treat than neurological lyme so you might get lucky.

One of the biggest mistakes I made in hubby's treatment was staying too long with physicians who were not helping. If no significant progress is made within 6 months or definitely within a year then I would advise moving on to another physician who has a different approach.

I don't know if the physician sells their own brands or supplements or makes you buy ones from their office or not. Many products are marked up way too much in doctors offices and something similar or even identical brands can often be found on the internet much cheaper.

This is not medical advice, just my opinion based on hubby's experiences.

Bea Seibert

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Carmen
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My arthritis symptoms started a long time ago and I had never had any tick exposure at that time, back in 94. I have never taken any pharaceuticals for it at all and took care of it with natural substances.

When I first moved to this location I was bit by a tick 4 years ago and I got sick with symptoms similar to Colorado tick fever. I did take doxycycline for about a month at that time given by an infectious disease specialist who couldn't quite believe that I could have Lyme for Lyme doesn't exist in Utah.... whom it later became clear to me that he didn't know what he was talking about or doing. Anyway, I never had any problem until this past month. I suppose I could have gotten Lyme 4 years ago, not this spring, but I will never know.

Has anyone whith chronic Lyme on this forum ever gotten cured?

As for LDM 100 I started at 5 drops 3x day yesterday. Today Im doing 10 drops... come what may!

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seibertneurolyme
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The Asyra test results is very dependent on the person using the machine in my opinion. Hubby had some similar testing done that really was not very beneficial.

IV vitamin C will help more with viral issues but probably won't do much for lyme itself.

I am sure if you research you can find lots of testimonials for colloidal silver and samento. But there are just as many failures with those that do not get the same publicity.

Not trying to discourage you -- but it takes a very well thought out protocol to really put a person into remission from tickborne diseases. Just taking one of two products will do very little.

The enzymes can help thin the blood and thus release pathogens back into the bloodstream and keep them out of hiding. But if the doc said that enzymes will actually kill lyme cysts then I don't think they know what they are talking about. I would ask them to show you any published literature to support that claim. If they can provide that literature then please post it here as we would all love to read it.

Keep reading and take notes to track progress or lack of it.

Good luck.

Bea Seibert

Note -- I am not against alterative medicine. Hubby actually tried all the things you have mentioned including IV vitamin C and even IV colloidal silver -- it cost thousands of dollars which could have been better spent on more effective treatments.

I think it takes a combo of meds, herbs and nutritional supplements all to beat these infections.

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Carmen
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First I would like to clarify that homeoapthy is not herbology and it has absolutly nothing to do with LDM.

The Townsend Newsletter has a very interesting artilce on the dark field microscope and its use in diagnosing Lyme cysts. The enymes do not kill the cyst they break it open. Its more like an egg shell than an actual living entitiy. The spirochetes are within the cyst.

IV vitamin c is not known to kill lyme but it does support the detox processes and it is essential to keep the body strong in the face of numerous types of challenges. Anyway, the exam revealed that I was vitamin c deficient. Anytime you are trying to heal wholistically you want to bring all deficiencies under control and restore balance in as many areas as possible.

This link will take you to the Townsend newsletter and their article on the dark field live blood analyis use for Lyme. The Townsend letter is the Naturopaths equilivent to the Journal of American Medicine. The artilce has many interesting links with photos. What they found in my blood looks exactly what these photos have.

http://www.townsendletter.com/Jan2005/lyme0105.htm

and here is a youtube video of a cyst starting its formation
http://www.youtube.com/watch?v=lVmCa70bAxE

and here is Lyme biofilm that was grown in culture
http://www.youtube.com/watch?v=a4uNDWdChM8

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Carmen
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here is an interesting film to demonstrate what the dark field live blood anaysis does. If you are not monitoring your blood during treatment how will you know if the medicines are effective? how will you know when to stop treatment?

http://www.youtube.com/watch?v=jVFLvvyUavM

I would think that if the dark field shows no pathogenic activity after a a few years and there are no symptoms you might be cured. Of course no one can know for absolutely sure. it only takes one surviving spirochete to set off a whole new cycle.

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Lymetoo
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quote:
Originally posted by Carmen:


Has anyone whith chronic Lyme on this forum ever gotten cured?


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Success Stories:

http://flash.lymenet.org/ubb/ultimatebb.php/topic/3/15820

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oops!
--Lymetutu--
Opinions, not medical advice!

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Lymetoo
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So you don't know what coinfections you have?

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--Lymetutu--
Opinions, not medical advice!

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seibertneurolyme
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Carmen,

I definitely think microscopy has a place in medicine.

The problem comes in interpreting what is seen under the microscope.

There has been much criticism of Fry Lab in the past. Coccobacilli as seen on a bloodslide could be bartonella or any of numerous other infections. Without additional testing there is no way to prove what the bacteria actually are. If the number of bacteria visualized over time changes in response to treatment then the patient knows something is working even if they don't exactly know what they are infected with. And since there are multiple strains of bartonella not all of them have antibody or PCR tests readily available.

Babesia on the other hand is viewable under a microscope but is rarely seen that way. Many people have better luck with other types of testing to prove that infection.

As for lyme spiroketes and cysts -- that topic is very controversial.

Any time something is being identified only by visual means it can be subject to interpretation in multiple ways.

I think microscopy is a good starting point, but if possible the results then need to be verified by other testing methods.

Bea Seibert

[ 10-07-2013, 01:49 PM: Message edited by: seibertneurolyme ]

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Carmen
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With my friend who went through Lyme and never received a conventional antibiotic, all treatment was done with alternative supplements and antiseptic herbs or minerals.

In the blood a spirochete is a spirochete. Most spirochetes cause illness, especially when noted to invade the RBCs. The blebs and sproichetes are fairly easy to see especially if abundant as they are in more advanced cases. So are the cysts. normal blood does not have this phenomena.

Other testing methods are known for inaccuracy. What are you trying to prove and to whom? If the blood is in disarray, and spirochetes are seen something needs to be done.. and as you said Babesia is farily easy to see. None of that was seen in my exam. Candida was the most signficiant co infection noted.

With the high rate of inaccuracy of serum tests how are you ever going to confirm anything? Many people are misdiagnosed due to serum test false negatives.

And then since the serum tests are known for inaccuracy how are you going to know that the medicine you are using is actually working? Some people are on antibiotics for a year or more. To me a visual inspection can hold the most promise to know that you are on the right course of action...of course a decline of symptoms is a huge plus too. But we all know that Lyme sufferes do long courses of antibiotics, get to feeling well, the treatment stops only to have lyme resurface later. If a couple of visual inspections of the blood were done this could have been avoided would be my guess. It seems logical to me and those who work with these tests swear by it. I would not stop treatment until every sign of visual lyme in the blood was gone for at least six weeks maybe longer and I haven't formed a firm opinion on length of time yet. Of course this would require more tests and costs but I rather pay for that than more treatment down the road. My plan, and Ive thougt about this a lot as I have been reading on lyme now for at least 6 years, is that I would have follow up dark field live blood analyis yearly for several years after I thought I was done with it. there are still a lot of unknowns in the disease and too many people relapse after they think they are done with it. Why wait until symptoms pull you down to the ground when it will show in the blood before this happens.

My experience in looking at dark field photos of lyme is that its not all that hard to intrepret and that the signs are fairly consistent. In real patients who have had the tests done they compare to the Bradford research quite well, but of course each patient will have individual issues and things noted in the blood, as I have a lot of candida others may have other types of parasites or deficiencies noted. I've looked at the dark field photos of 5 patients now over the past few years. The best thing to see is the before and after treatment photos side by side. Im not so concerned with diagnosis as with selecting the right treatment.

One other benefit of dark field live blood analyis is that other condtions that are pulling the immune system down may be noted and addressed. Other tests will never give this information and most docs are not aware of these possibiities.

I was stunned to find that the doc I went to prescribed this LDM 100. I was expecting something totally different based on what he had given other patients... so Im going to call the clinic today and try to talk it over. Its hard to do a protocol that you have doubts about.

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Carmen
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quote:
Originally posted by Lymetoo:
quote:
Originally posted by Carmen:


Has anyone whith chronic Lyme on this forum ever gotten cured?


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Success Stories:

http://flash.lymenet.org/ubb/ultimatebb.php/topic/3/15820

I was disappointed to see that all of these stories were of treament with antibiotics. Already I have suffered from overuse of antibiotics in the past and the damages they cause. Of course, also, as a nurse I have seen first hand people die from the superbug infections and I know this happens with Lyme patients like any other, perhaps more since they are on antibiotics longer and at greater potency than most other conditions require. No one is counting, no one keeps record. I do not trust the medical establisment to advise me with documented wisdom for the documents are not kept and interpreted by the CDC or anyone, anywhere.
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GretaM
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I agree with Keebler about not starting/adding in silver until you reach the prescribed doseage of your current supplements from the ND.

And before you add it in, run it by your ND.

This forum is open to all methods.

#1 objective: kill lyme and coinfections

However anyone meets that objective is A-OK with me.

But I feel that I need to say this:

Lymetoo and Keebler are trying to be helpful in you getting better. Both have been battling, winning and supporting others with lyme and co for many years. So please don't think either of them are on an antibiotic bandwagon...they are just trying to help you be aware that sometimes a combo of ND treatments and allopathic medicines are needed.

I was going to ask my ND about IV vitamin C for EBV and CMV, but wasn't aware of the cost.

How much were you quoted for IV Vit C?

Best wishes
Greta

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VV
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"If a couple of visual inspections of the blood were done this could have been avoided would be my guess."

I'm not so sure it works this way. From what I understand (which could be totally wrong, mind you) late-stage Lyme has worked it's way into tissues and the CNS and blood levels may not be very high.

If you have an active CNS infection, I don't see how blood levels are particularly reflective of that.

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Carmen
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quote:
If you have an active CNS infection, I don't see how blood levels are particularly reflective of that. [/QB]
Please dont take my directness as condemnation. I have a pretty good sense of what all of you have been through regarding this disease. Ive sat at the bedside of many an ill patient and dying person over the years. Im trying to maintain objectivity less I fall apart for this news is quite a shock. Today, after a torturous night of fears and racing mind I decided that I will probably live long enough to find my way out of this and like so many here I have limited funds to do the work. I have to keep reminding myself that some folks with Lyme do live a very long time with the disease, but the loss of the function of my hands is scary.

I see what you are saying about the CNS but if its in the cns system dont those systems have blood going through the tissues? and Many medicines do make it into the CNS... much of this blood brain barrior thing is carried way over board.

I know of someone who cured her MS (which of course may have been Lyme) with colloidal silver, which if not Lyme, clearly was caused by some kind of pathogen. It took a lot for a long time and she did get some results with oral CS but the big bang for her buck came with IV Colloidal Silver. So CS does get into the CNS. I wish I knew a doc who did that. Of course damage done to the CNS after the pathogen is gone may not be repaired so easily. Thats a whole other issue.

An IV vitamin c treatment can cost from 125 to 175, depending on the doctor or clinic. Evidence indicates that lipsomal c may deliver IV levels at a lessor cost. www.letstalkhealth.com has a reportedly good product as well as livonlabs.com Ive been experimenting with making my own.

Im starting to consider the need for chelation more and more. That type of IV treatment costs even more and I have never been much convinced of oral chelation products.. guess I will have to go reread the work ofDr Hans Napier again. My doc sells IV packages as he feels that it will help people to get motivated to do the amount of treatments he feels is generally necessary. They are cheaper in a package rate.

I think that if you are persistant a combination of lipsomal c and regular ascorbic acid can do the work over time and Im thinking months here. You must work the ascorbic acid up to bowel tolerance according to my doc. The lipsomal c slips easily into the cell. My doc thinks that you need both but there are mixed opinons on this. go to www.vitamincfoundation.org for more info on bowel tolerance. again the dark field live blood analysis can tell you when you are c restored... which actually means your capacity to utilize c is restored and that there is plenty circulating. With active infections c is burnt up daily quite fast. the foundation explains it in detail.

Vitamin c should cure epstein barr virus.. and MMS will also.

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GretaM
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Thanks Carmen for sharing the prices.

Yes IV silver would be interesting also but I don't know where one would get that done.

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Keebler
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The main concern with even a properly sourced silver is how to get it back OUT of the body so it does not accumulate. That part is very tricky, at best.

It does not act like other metals in that regard. And while not bad in the right amount, accumulation is something to weigh.

Still, an ILADS educated LL ND would most likely know about the issues to consider and how to work with, or around, when at all possible because colloidal silver can certainly be one very important tool.
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Catgirl
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Carmen, I think it's great that you are into alternative methods. They seem to be helping me more than I ever dreamed of (and I was chicken to try them).

I see that you are new on the board here. Welcome to Lymenet! Gigi and others have posted some terrific info on Dr. K's methods (alternative). IMO, he's a genius. He starts patients out going after parasites and heavy metals, and uses some fascinating tools/methods to help lyme patients.

You can read about them here and on the Klinghardt academy site. If you do a search here, you will find Gigi's posts (have the most info). Dr. K's methods are outside the realm of western medicine, but they really do help many people, and IMO are quite valuable and worth considering.

Have you gone after parasites yet? They like to go all over the body. IMO, they're a major player with lyme (check out THE PARASITE WARRIOR'S THREAD). Also, my doc uses oral chelation successfully with his patients (also worth considering).

My husband makes our liposmal C (we love it). I feel better whenever I take it. I think both forms benefit the body, but liposmal seems to work faster.

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--Keep an open mind about everything. Also, remember to visit ACTIVISM (we can change things together).

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Brussels
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I agree with CAtgirl. My daughter has been treated with abx from day 1 after a tick bite and NEVER got better, but worse.

I was treated from start for a while with abx, maybe not enough first time, then it took me years to get better. Next bites, I OF COURSE, tried to treat with abx, and NEVER had any positive result that lasted.

Dr. K. says, in the past, it used to work (to treat fast with abx after tick bite). Today, no one is getting better ONLY with abx. It is not curative anymore.

Just read this site. Many people get totally better. Most of them do not use abx for that.

It is not to kill that matters only. It does matter, but killing only just makes next infection shows up, then candida, then it is a never ending ballet. What is important is a functioning immune system. For that, no fast healing for anyone.

Total body support. You seem to be on the right way. If things do not work, do not believe that abx will be the magic bullet. it was never for us home. We abandoned abx for a loong time. We only use that as LAST resort, when nothing else worked.

And usually, abx will not always work either, and we have to go on looking for alternatives.

With lyme, I think the best tip is follow your gut. Whatever you feel is a good way, go after it. For me, it always worked. Everyone keeps saying 'vaccinate your child', 'do root canals', 'use abx', do this and that. the only sensitive thing to do is, in my opinion, to fix your immune system. Whatever is blocking it to function well must be treated.

Toxins? Electrosmog? lack of enzymes? Vitamins? Allergies? Excessive pathogens? Parasites? Bad eating habits? Bad sleeping habits?

Maybe all?

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Lymetoo
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I fully support the use of alternative meds.. but would not myself go without antibiotics if I were bitten again.

I think we need both.

(and believe me, I know about damage to the gut from antibiotics)

So, Carmen.. I guess you'll never know if you have coinfections?

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Opinions, not medical advice!

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Carmen
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I think that I have probably taken antibiotics over 30 times in my life. I dont plan to do it again. I had terrible allergies in the 90s. One sinus infection after another, and antibiotics ruled my life. Finally I got past all that with homeoapthy and although I still get some sinus allergies no infection now over 14 years.

Because of all this antibiotic use I have damaged my gut and have had to manage that over the years. Clearly after the test I has this week candida in my blood is a huge issue.

Im thinking more and more that I will go ahead and start nutrasilver. Im calling the company now to get dosage instructions for lyme.

Im up to 10 drops 3 x day with the LDM. It was unclear as to how high I should go with that so I have a call into the clinic for that too. I do get some mild dizziness about 30 minutes after taking this.. guess thats my herx reaction.

Im wondering if anyone has any information or impressions on using pain medicine. Will pain medicine interfere with the healing process? Im not using narcotics or anything like that. Ibuprofen doesnt work well for me, not for this and not for other types of pain I've had, so I have a script for diclofenac... an NSAID and it works pretty well. Right now Im only needing one pill about every three days although it can be taken twice a day. It really helps but Im wondering if this can slow me down or set me back in any kind of way. Sometimes I cant sleep without it.

I know what you mean, Brussels, about following your gut. And through this my gut is telling me nutrasilver and Im leary of the LDM but will give it a full chance. I feel like I want to put them together.

Over the years and having been through lots of different medical issues with myself and in raising the children the gut is the best guide Ive ever had. It seems to know in some uncanny way what is best.. but still it needs to be educated to options. Sometimes the gut doesnt even know what options are there, it will just tell you to be in the right place in the right time.

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Keebler
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After LIVER SUPPORT,

Magnesium is the next thing to consider for pain relief, perhaps up to 2,000 mg a day (always in divided doses, though, and balanced with other key minerals.)

http://flash.lymenet.org/scripts/ultimatebb.cgi?ubb=get_topic;f=1;t=123746;p=0

Topic: MAGNESIUM LINKS sets


Below, from my file notes. There may be some bits that were for another poster but I can't edit it now. Hope this helps:

Since many prescriptions and over the counter products for pain can be very hard on the liver, kidneys or GI lining . . . I focus mostly on other things

First, liver support has to be number one to help reduce all kinds of pain. Be sure your liver support supplements are top-notch. Other things to consider:

• CORYDALIS

• MAGNESIUM 1,000 to 2,000 mg/day (to bowel tolerance - never all at once, though).

• CALCIUM, and other minerals and electrolytes in balance.

• Fish Oil

• Curcumin

• Gluten-Free Diet

============

CORYDALIS
---------------

http://www.itmonline.org/arts/pain.htm

SIMPLE TRADITIONAL FORMULAS FOR PAIN

Shixiao San, Jin Lingzi San, Liang Fu Wan, and Baishao Gancao Tang

by Subhuti Dharmananda, Ph.D., Director, Institute for Traditional Medicine, Portland, Oregon

excerpt:

. . . Corydalis is added "to increase the pain-relieving effects of this prescription."

To compare Shixiao San and Jin Lingzi San, it is helpful to examine two of the main ingredients. Yang Yifan (9) compares corydalis to trogopterus (wulingzhi):

Corydalis and trogopterus enter the liver and spleen meridians. Both are able to promote blood circulation and remove congealed blood. They are very effective for relieving pain.

- Full article at link above.

======================

http://oneearthherbs.squarespace.com/diseases/the-nervous-systembrain-nerves-and-mind.html

excerpt:

• Herbs such as opium poppy and corydalis rhizome (Corydalis yanhusuo) reduce pain by binding to opiate receptors (Stansbury, 1999).

. . .

==================

http://www.ncbi.nlm.nih.gov/sites/entrez

PubMed Search:

http://www.ncbi.nlm.nih.gov/sites/entrez

PubMed Search:

Corydalis – 285 abstracts

Corydalis, pain – 8 abstracts

Corydalis, liver – 4 abstracts

Corydalis, inflammation - 3 abstracts (one lead to Curcumin)

Hypomagnesemia, pain – 32 abstracts


Links to mentions of it in seven different chapters of The One Earth Herbal Sourcebook:

http://oneearthherbs.squarespace.com/display/Search?searchQuery=Corydalis&moduleId=1405778


=======================

This is an excellent formula, intended for use before going to bed (follow instructions and caution with driving until you get used to it. Do not mix with sedative or alcohol).

This is also part of a lyme protocol.


http://www.hepapro.com/hepapro_product.htm

See #28 - HerbSom

Ingredients; Corydalis root, jujube seeds and Schisandra fruit.

Jujube is also called zizyphus. Schisandra is also spelled schizandra. Both can be searched at PubMed and at The One Earth Herbal Sourcebook ( http://oneearthherbs.squarespace.com )

=============

http://www.vitacost.com/Honso-USA-Corydalis-and-Angelica

Corydalis & Angelica


A good ILADS LL ND will know all about anything posted here -- and likely have other suggestions.

ACUPUNCTURE, MASSAGE,

CRANIAL-SACRAL therapy with someone trained in UPLEDGER(that is a gentle approach, just never let anyone suddenly twist neck or spine, ever. Very dangerous with lyme).
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Keebler
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Mentioned above as vital to pain reduction:

http://flash.lymenet.org/scripts/ultimatebb.cgi?ubb=get_topic;f=3;t=030792;p=0

LIVER & KIDNEY SUPPORT & and several HERXHEIMER support links, too.


I've also found (by accident) that Berberine is very nice at reducing pain, especially from "trigger joints"

http://flash.lymenet.org/scripts/ultimatebb.cgi?ubb=get_topic;f=1;t=121034;p=0

BERBERINE – LINKS SET
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Keebler
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Certain "excitatory" foods (and additives) can cause pain for those with lyme. Your diet is likely excellent. Still, from these sets, there may be something of note that could make a difference.

Check all supplements and assess diet for any excess or added:

http://flash.lymenet.org/scripts/ultimatebb.cgi/topic/1/113775?#000000

Topic: Amino Acid Information Link

See post: Caution: Aspartate; Glutamine; and Phenylalanine (3 excitatory amino acids that can be wrong for us when added as supplements, beyond a normal dietary level)

Seaweed has its own natural MSG and can be too excitatory for some folks, and intensify the nerve signals regarding pain, too.


http://flash.lymenet.org/scripts/ultimatebb.cgi?ubb=get_topic;f=3;t=029690;p=0

Excitotoxins; MSG; Aspartame; & "Natural" Flavors (that are not likely natural at all);

GMO foods that destroy the GI Tract and other foods that cause pain such as Gluten; Dairy

See: "Hidden Sources of Gluten" as to how it can sneak past the best of us. Most LLMDs and LL ND suggest their patients be gluten-free.
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Carmen
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I dont take in any gmo or neurotoxins... much of my food is organic and I grow it myself.

Magnesium is a good idea for a start. I used magesium malate once for strange pains long ago and it worked like a charm... and I have some, somewhere. This thing with lyme is that I am having a hard time concentrating my thoughts and I forget what I know. It will take me three trips to the garage to find the magnesium because I will get distracted on my way each time. Im also having a hard time remebering to stick to my schedule of medicines... like Im overdue right now! so I will probably forget to look for the magnesium until tomorrow and then maybe after 3 trips to the garage tomorrow I will finally have it!

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Kudzuslipper
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Carmen, to be honest, all of this is a cr*p shoot. In fact most of medicine is. What they think today will be proven wrong tomorrow. Case in point doxycycline used to be the go to for Lyme. Now they know it converts the spirochetes into cysts. Remember when margarine was supposed to be good for you?

If you feel confident about this NP... And you feel up to alternatives... You should go for it. From reading here, IMO, the drawback on alternative only is you really have to do your own research to make sure your covering your bases and to make sure your not spending $$$ for a kiss and a promise. It sounds like you have researched. And sometimes you just have to go with your gut. If you read the Townsend letters you know that samento and banderol are thought to be as good or better than abx in both busting cysts and killing. Are you going to be taking both. Also, I think many feel you should kill done before busting cysts... As doing it all at once could lay you low.

There is something about your posts that make me uneasy. Perhaps that the "new recognition" for Lyme has opened the door to people/drs taking advantage of people's pain and suffering with the Dx du jour.

But if you do have chronic Lyme, just always keep it in the back of your mind for all future diagnosis. Lyme is a great imitator. And a confusing Dx that often makes one second guess everything, including Lyme.

Ps. Do ask about confections.

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Abxnomore
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Kudzuslipper, you summed it up well!
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lpkayak
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1. Bb does not stay in blood long
2. U have learned a lot about lyme in short time but there are holes in your learning
3. Bea has learned a lot over time and is way better explaining than i am
4. The recent tick bite may or may not be your only exposure. If it is you are taking a huge risk with your future to not use the correct dose and combos of abx to zap it now.

If you read more on here about the suffering u may understand

Good luck to u...u came here for info...keep your eyes open

--------------------
Lyme? Its complicated. Educate yourself.

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Carmen
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There are always holes in one's learning, no matter how much you think you have learned.

Clearly the lyme is already in cyst form. This has been visualized.

So what is early lyme? how is that defined? The bite I received this year happened in April or May. I also received a bite 4 years ago for which I received doxycycline. I never seemed to develop any classic lyme symptoms from that back then. From which ever event this occured I have the cysts now.

Most of medicine is a crap shoot but in time refinements do happen. Lyme is realatively new and the brainwashing within the medical establishments must be overcome before any systematic and conprehensive approach will be developed. Frankly I dont see it happening within conventional medicine anytime soon. The learning curve for each individual doctor is huge and they certainly aren't getting the information they need in medical school.

I dont know how one can say that Bb does not stay in the blood long. I know someone who has had Lyme for 20 years when he was first diagnosed. He remembers the rash 20 years ago but didnt get really sick from it for 20 years..at which point he thought he might die he was so sick, on oxygen, could hardly walk. Bb was clearly visualized in his blood at that time of diagnosis. Since treatment is he is much better but he suspects some permanent damage was done to his CNS and possibly inner ear. Anyway his blood visualizes clear now and he has his strength back. Lyme is a systemic disease. Any disease in the blood is a systemic disease. As to whether it will create a foci in one part of the body or another depends on your immune capabilities thoughout the total body, which varies from one location to another and is highly individual. This is why you have some people with lyme who can hardly talk and walk and others who seem resistant to those types of symptoms, why you have some folks who nearly die from it within a short time frame and others who endure for years, like my friend.

I am not familiar with Banderol. Will have to look into that one. One of the pitfalls with this Lyme is maintaining concentration focus. any information that anyone can provide on it is appreciated.

Right now I am not confident with the doc I saw, remember I choose him because I thought I had RA. At least he found the Lyme.. so I am making a new appointment this week to see the other doc in the office who is the lyme expert. I was not given the treatment that I anticipated and what was given to me I can find no confirmation on for Lyme.. this LDM-100 medicine. Everything else they gave me I feel ok about but Im wanting to add CS to the protocol, and probably TAO free samento too but I dont know about combining that with LDM-100. I've only been into this for four days of treatment whether that makes any difference or not... I doubt it...but it does take time to sort things out.

lpkayak - how do you go about keeping your mitochondria happy?

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ukcarry
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The banderol and samento are 2 antimicrobials that are part of the Cowden Support program (a protocol of homeopathically infused herbs, enzymes, magnesium and zeolite to address Lyme and also chronic illness in general).
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ukcarry
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http://www.townsendletter.com/July2010/sapi0710.html

This is the link to the Townsendletter piece on the tests Dr Sapi did on the comparative effectiveness (in vitro) against borrelia cysts of Banderol with Samento and Doxycycline.

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Lymetoo
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Carmen.. the spirochetes are not always found in the blood. They head straight for the tissues where they are able to move more easily. But yes, they are in the blood too.. just not as prevalent.

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Opinions, not medical advice!

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Carmen
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So I talked with the clinic today and CS has been added to my regimen and that it would not be a problem at this point. They advised that I not try to do too many things at once as the body can get overwhelmed. So I am starting nutrasilver today at 30 drops 3xd.

I used magnesium oil and it was helpful for the mild pain I had last night. Im feeling that my thought processes have declined since I started treatment.. I guess that is detox going on?

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lpkayak
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There are protocols to keep mitochondria happy

Cognitive issues could come from Bb in brain

--------------------
Lyme? Its complicated. Educate yourself.

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Lymetoo
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Any kind of herx can give you brain fog.

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Opinions, not medical advice!

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Judie
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Gosh, your history sounds similar to mine.

You're doc is so correct to start slowly and take one thing at a time.

I got severely poisoned in a building in the '90s that left me permanently disabled.

My gut was also left a mess from antibiotics and I was bed-ridden for 2 years. This is BEFORE Lyme. I saw an ND who straightened out the gut issues.

My immune system just lets anything in. I'm highly reactive to chemicals and most drugs (similar to MCS triggers, but it's a mast cell disorder).

I got infected with Lyme in 2012 and reinfected a month ago.

I was terrified of taking antibiotics again, but even my ND said I needed it last year.

Gosh, I'm taking just about every supplement you mentioned.

Doxycycline really helped along with a lot of herbals last year and I could finally stop taking antibiotics at the end of 2012.

Even though I started doxy at the same time I had the bulls-eye rash, I still needed to treat for 6 months. The doc explained that my immune system just doesn't work as well as a normal person because of the poisoning.

I also took a ton a probiotics and didn't have any gut issues.

I had 11 co-infections including viruses.

Here's Stanford's chronic fatigue requisition sheet. You might want to consider getting a blood test to see what else you may be dealing with:

http://chronicfatigue.stanford.edu/docs/CFS-lab-outside.pdf

With the reinfection, I started with herbals, but they weren't enough, so I'm back on doxy.

Good luck!

There are several ways to get Lyme to stay in remission.

I'm horribly allergic to silver. I hope it can help you.

Also, don't mistake an allergic reaction for a herx.

Since you have the immune system problems, you might react differently to some meds or herbals.

Some herbals might even work better for you that other people have problems with, so don't be scared to try something.

Just monitor yourself carefully. If you have neck/face swelling or hives, it's probably an allergic reaction.

"You should go for it. From reading here, IMO, the drawback on alternative only is you really have to do your own research to make sure your covering your bases and to make sure your not spending $$$ for a kiss and a promise."

Agreed, after seeing several conventional doctors who couldn't help, I seeked out alternative practitioners.

I spent a ton on some of them and worked with one for over a year, just to be worse in the long run because it wasn't helpful for me (this was after the poisoning).

If there's a Lyme support group in your area, try to go to it and find out people's opinions of the clinic and practitioners in your area. Try to talk to people in person if you can. You can also find out about other alternative practitioners in your area.

The clinic I'm going back to offers all kinds of treatments. Some I know I don't want. There are cheaper alternatives to what they offer that give the same results.

[ 10-08-2013, 07:18 PM: Message edited by: Judie ]

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Abxnomore
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Cognitive decline is indicative of spirochetes and inflammation in the brain. Treatments that pass the blood brain barrier are effective in this regard.
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Judie
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About 2-3 months into treatment with antibiotics last year, the cognitive, confusion, brain-fog problems lifted tremendously. It was shocking how much of it was the infection.

"So what is early lyme? how is that defined?"

Dr. B has info here on page 19:

http://www.lymenet.org/BurrGuide200810.pdf

"If it is you are taking a huge risk with your future to not use the correct dose and combos of abx to zap it now"

I have another friend with severe MCS. She is totally a natural, hippie earth-mother. She even worked in a health food store as the herbal expert.

She got a Lyme rash and decided NOT to take antibiotics.

She was way worse off about 8 months later.

Her advice to me when I got infected with Lyme for the first time was to get on antibiotics ASAP. This is coming from someone who is so alternative that even some of the alternative doctors are too conservative for her.

She's been trying to get Lyme into remission for over 5 years now. It's been a nightmare.

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Carmen
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Well, I appreciate all the stories. I think everyones path to healing is different.

Lets clear this up right now. I will not be taking antibiotics. If I see in the future that the alternatives are getting me now where then I will come here and seek information on it.

the clinic that I go to is heavily invested in treating Lyme and with great success. They dont use conventional antibiotics at all.
Unlike many of you I have chosen a system of diagnosis that will permit me to see if I am progressing. I will not be relying on serum tests and the up and down symptoms of the illness that keep everyone confused. I will be able to directly see if I am progressing through live blood analysis.

What I think is goining on is a herx reaction causing my brain fog. Anyone who has spirochetes in the blood will have them in the brain...this is no brainer as your brain is heavily infused with blood. Im not going to dwell on those details at this time for I dont think it will advance me one iota. I wasn't feeling this bad 4 days ago before I started treatment and I think things ar just starting to break down and get discharged. I took my first dose of nutrisilver this afternoon and it whammed me onto the bed for about an hour then two hours later Im feeling much better. I think I will reduce my dose on that for a while from 30 drops 3xd down to 15 and advance up slowly.

Some people feel that the candida that many lyme folks have is a major cause of brain *** or fog or whatever you call it. I had a lot of candida in my , much more than the noted lyme, and what I'm doing is a major hit on candida so Im likely to be feeling it on its way out.

[ 10-09-2013, 10:00 AM: Message edited by: Carmen ]

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Judie
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You might want to look at this guy's website. He got his Lyme in remission on herbals and didn't pay tons to do it:

http://www.tiredoflyme.com/

I'm sorry that you had such a bad experience with antibiotics that you don't want to try any again.

I hope the herbals work for you.

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Carmen
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Someone on this forum has a link for Dr K from Seatle, his protocol for lyme that I looked at yesterday but forgot to put in a file. Can you please repost it or pm it to me? I thought it was on this tread but maybe not.

I watched the movie that was recommended on another tread last night called "Under Our Skin" with my sons and husband. It was a really good intro to what Lyme is all about and It helped me to say to them many of the things I wanted them to know. We had a good discussion afterwards. It was interesting to note that they featured Dr K's but didn't bother to mention his use of herbs, MMS and the other none tradtional forms of treatment but the film went on and on about antibiotics. Are they afraid to reveal the truth about alternative medicine? They certainly are afraid to discuss dark field live blood analyis which I think that Dr K uses to diagnosis Lyme.

They certainly went into the corruption and manipulaton enacted by paid off physicians and insurance companies to keep the truth about Lyme from the public.

If they really wanted to expose the absolute reality of this disease they would have educated about the Dark Field Live Blood Analysis diagnostic method. It is the sword of truth in the diagnostic nightmare and reaveals exacly who has lyme and who does not. When one doctor said that all of his alzheimer and parkinsons disease patients had lyme I dont think he figured this out with the ELISA due to the high rate of false negatives that test presents with... but of course they failed to mention how he came to that conclusion. My ventured guess is that he didnt bother with the ELISA at all.

As a retired nurse it was most interesting to view the advanced cases of Lyme and their symptom pictures. I have seen all of that repeatedly, daily year after year in my work in a lock down Alzheimer's faciltiy as well as in my 6 years in hospice and other settings. Watching these people die is difficult, watching what the families go through is so incredibly sad and to think that this goes on due to the arrogance and greed of the human race is the most painful of all.

Will we ever wake up enough to care for and love one another?

Those doctors who stand their ground, both conventional and alternative in the battle for Lyme truth, are heros for humanity.

**edited name of LLMD per LN rules**

[ 10-09-2013, 01:34 PM: Message edited by: Carmen ]

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Lymetoo
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You are right. The ELISA is junk. I'm sure he used the Western Blot.

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Carmen
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quote:
Originally posted by Keebler:
-
I don't know what part of the plant is used for the tincture so just play it safe and NOT use hot water, just warm. Hot water can destroy some of the properties of aerial parts (above ground).

If all parts used are from beneath ground (root, rhizome) then you can use hot water.
-

This product is made from root and is mostly wildcrafted. It has been documented to cure TB. Still I havent found much for it's use in Lyme... but Im feeling more confident in my protocol now that I added CS. Im thinking that probably the best result from LDM is its immunity building qualities so that the system fights the infection itself and probably why its so effective with colds and flu. Those who took it in the 1918 Spanish flu epidemic all lived while the people around them dropped dead like flies. For that reason alone it is probably worth having in the medicine cabinet.
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tick battler
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Carmen - sorry I haven't had time to read this thread but I totally agree with you on going the natural route! ABX did not heal my family after 3 years of trying. Herbs did (at least for lyme/coinfections)! I would research Dr. K's methods and you will be in good shape. His lyme cocktail is VERY effective. There are many ways to heal from lyme. Be sure to look at the parasite angle...that is probably a big part of your symptoms. It is currently being ignored in the medical world but appears to be a huge cause of chronic illness.

tickbattler

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steve1906
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I also agree with Carmen.

My problems/feelings with antibiotics>

Most people taking antibiotics for the long run, years; are also on some alternative meds, good diets etc.

If you do start feeling better, how does one know why? (antibiotics) - (alternatives) - (diets) - (exercise) - (time passed)?

I understand the science and theory behind long-term antibiotics, but after all my research, I myself just don’t believe they help after a certain amount of time.

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Everything I say is just my opinion!

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Lymetoo
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quote:
Originally posted by steve1906:

I myself just don’t believe they help after a certain amount of time.

-
Key words "after a certain amount of time" .. I think it is important to BEGIN with antibiotics and move on from there.

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steve1906
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Lymetoo, That's why I worded it that way.

Especially if in early stages.

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Everything I say is just my opinion!

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Brussels
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Early abx never was the answer for us at home.

My daughter treated from day 1 after bite, we stopped after week 5 as she was sooo much worse.

I don't think everyone is the same, but with so many coinfections, how do you know you will get the right abx combo from day 1?

My rule is the opposite: I try everything else, and if NOTHING WORKS, I try abx.

But then, usually, abx won't work either. So I have to keep on looking.

ABX for me is like chemiotherapy. Sometimes you got to go into it, but it is the LAST resource.

Dr. K. says today, no one is really healing with abx anymore. Either the amount of coinfecitons is too high, or electrosmog too high, or toxins too high, or all of them. Or bugs are getting more agressive.

Abx is not the solution for everyone!

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Carmen
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I met a woman by chance a few weeks ago before I knew I had Lyme. She told me that she and almost everyone in her extended family had had lyme. She was really excited about the herb Teasle, saying that it had been successful for them... there are a couple of youtube videos about it.

I have not been diagosed for co infections. Some of these co infections can be seen in dark field live blood analyis but none were seen. There were a couple of other tiny parasites seen but they could not be identified by name.

Im figuring that I will continue with what Im doing and have another microscopy done after 6 weeks of treatment to see how things look.. and of course noting how I feel at the time too.

Yesterday was a hard day... I feel guilty complaining after watching that video for what Im going through is nothing compared to those folks experience but I was confused and couldn't remember when to take my pills, if I had taken them and when. I actually grated my finger while grating beets for dinner...so family are leary of me and sharp objects now. The whole family is monitoring since I contaminated dinner. Today is better... I think all of that was caused by too high a dose of colloidal silver causing a detox reaction.

I too had been wondering also, Keebler, about heavy metals and CS. The CS product Im taking is VERY strong and at 3,600. The dark field microscopy gives a photo of the level of your heavy metal toxicity which I do already have. I think I will do chelation of some sort before Im done but Im thinking of waiting to see what this CS may or may not be doing. If I am progressing I may hold chelation until later after the CS is complete in 3 to 6 months. Its something I will talk to the doc about next time I see him.

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Judie
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"... but the film went on and on about antibiotics. Are they afraid to reveal the truth about alternative medicine?"

My impression was the film was emphasizing the importance of early treatment so you don't wind up as bad off as a lot of people featured in Under Our Skin.

I'd say the issue is a lot of people do get well with "early" antibiotics treatment if a regular, insurance-covered PCP is willing to prescribe it and does the correct diagnosis. It's cheap and accessible for most people.

Alternative therapies just aren't affordable or accessible to a lot a people unless you're in an area that has them.

My neighbor did a course of amoxicillin the first year that he got infected. This was 3 years ago and he's fine now.

He's a forest ranger and really reminded me of the first guy in Under Our Skin. He was lucky that his PCP diagnosed him correctly.

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Keebler
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-
Chelation won't work with silver as it does with heavy metals.

A ILADS educated LL ND would know more about the details, and all options according to your particular case.
-

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Abxnomore
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The top Lyme doctors who are getting results use both ABX and alternative methods. They are not anti -alternative medicine.
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Carmen
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I met someone once who turned blue from a silver preparation that was given to her as a young woman. She went on to lead a normal life and have several children. When I met her she was 95 or so.

I have a detox protocol for agarya. I dont know if it works or not as I have no experience with it nor anyone I know. Im not worried about getting agaryia from the product Im using but some residue silver may be left behind over time. I'll deal with it later if necessary.

Today was an easy day with hardly any detox symptoms. I don't know if its because I used chlorella or not. I even increased by dosage of LDM today. Tonight I will increase my CS and see how it goes. Seems I should have some detox symptoms, just not too much, right?

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steve1906
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I'm so impressed (95 and still able to have children) tell what vit. She was taken?!!!

--------------------
Everything I say is just my opinion!

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Lymetoo
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quote:
Originally posted by Judie:

"... but the film went on and on about antibiotics. Are they afraid to reveal the truth about alternative medicine?"

My impression was the film was emphasizing the importance of early treatment so you don't wind up as bad off as a lot of people featured in Under Our Skin.



-
exactly

--------------------
 -
oops!
--Lymetutu--
Opinions, not medical advice!

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Lymetoo
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quote:
Originally posted by Abxnomore:

The top Lyme doctors who are getting results use both ABX and alternative methods. They are not anti-alternative medicine.

-
Very true

--------------------
 -
oops!
--Lymetutu--
Opinions, not medical advice!

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Carmen
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I am trying to understand about the arthritis. Does the arthritis continue after the lyme is gone?

[confused]

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patches10025
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I have been on this supplement(Chelex)a few weeks and I definitely think it has made my brain work better. I was told I have lead(in the brain) and some other heavy metals. It is reasonably priced at the Greenandhealthy web site.

http://www.covenanthealthproducts.com/assets/images/products/Xymogen/chelex-nfdrs.pdf

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Carmen
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Thanks patches, I have saved that pdf. Did a doctor recommend this product to you?

I have been confused about chelation products over the years. Doctors say that they dont work but most of those doctors are tring to sell IV chelation.

Did you have a hair analysis done? Are you monitoring your results with some kind of lab work or hair analysis? Heavy metal toxiciy shows up in dark field live blood analysis and I should be able to monitor progress through that test. Everyone should do some kind of chelation periodically in their life time is my opinion... of course I have lots of opinions and rarely follow my own best advice.

and patches, are you taking supplemental minerals as you do this protocol? if so what?

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