News you won't see in controlled mainstream media.

Hey guys. I haven't been on this board for a little while. I'm now trying to catch up and see what is going on. I have been trying to figure out what is wrong with me for a long time now and I think that I am near an answer. I had all my amalgam filling removed about 6 months ago and I think that I will really see results in the long, long term. But I wasn't absolutely sure that was my only problem so I went and had an Elisa test for Lyme Disease just recently (and I know that Elisa test is not the best to use, but that's the protocol through insurance and Doc). Well the test came back equivocal. I was def not neg but not showing positive. I guess they will run a western blot next on the sample. I'm from Utah and Lyme is not suppose to be abundant here, but here I am looking at this possibility.

Hi sittingDuck,

Welcome to the club that no one wants to be a member of.

I'm so sorry to hear about the possibility of Lyme. And, yes, the Elisa test is pretty much a worthless diagnostic tool, you're right. An equivocal finding on an Elisa test would be considered a positive test by Lyme Literate doctors, I believe.

The Western Blot test from Igenex is the test of choice.

Lyme is epidemic in the United States and also in other countries. It has been found in every State in the US.

I can't stress enough how important it is to see a Lyme Literate Medical doctor for diagnosis/treatment. Seeing anyone else can set a Lyme patient up for a lifetime of problems. I'm not exaggerating here.

Do you have an LLMD? Alot of Lyme patients end up having to travel long distances to find help and treatment. LLMD's are in short supply at the moment.

I've posted a bunch of articles/videos/resources in the Lyme Disease Forum of this website. http://herballure.com/ubbthreads/ubbthreads.php?ubb=postlist&Board=67&page=1

I've been diagnosed with Complicated Lyme Disease/Bartonella/Babesia/Erhlichia/Mycoplasmas. Not an uncommon occurrence in people with Lyme diagnoses, actually. Most people are getting infected with more than just the borrelia/Lyme pathogen when they contract Lyme.

I was ill 11 years before I finally had my answer. My symptoms weren't especially incapacitating in the beginning. It wasn't until I became quite ill and incapacitated that I started seriously trying to rule out possibilities.

Like you, I had to use process of elimination. It wasn't until I sought the help of a Lyme Literate Medical Doctor (LLMD) that I was able to get the proper testing and interpretation of said testing to confirm Lyme.

I've been in treatment for 6 months now. Treatment is rough but I'm progressing, albeit slowly.

I don't know if you've been feeling well enough to do a bunch of reading and such. If you've not been able to do so and would like some resources for learning more, just let me know. I can recommend some very good books and some additional online resources that I haven't had a chance to post to the Lyme Disease Forum yet.

I wish you all the best. And good for you for being persistent in finding answers for to your health! And let me know if you need more info.

Hugs,
SomedaySoon

p.s. There are quite a few members here who have discovered that they have Lyme Disease as well. I don't think they're posting much though, if at all.

Good info SomeDaySoon. I will need to delve into this problem further. I just felt like something else was hampering my quest to get "right". I had the initial suspicion of Lyme and so I've been experimenting with salt/c protocol. 2 days after doing my first salt/c MY BACK STARTED KILLING ME. Upper and lower. I recently found a salt called REALSALT made by redman. I'm going to give that a shot and see where it takes me.

I am convinced Lyme disease is very overdiagnosed. Imo many who think they have Lyme disease have candida overgrowth, and/ or parasites.

Hi JK,

Tell that to all the positive Lyme bloodtests I've got. lol And tell that to the Department of Health in my State as well as the federally-controlled CDC, who, in their role of infectious vector borne disease surveillance, have categorized Lyme Disease as both Epidemic and HYPER-endemic in my area.

Lyme Disease has also been categorized as the fastest growing infectious disease in America.

I have to disagree with you, I'm afraid, on your point on overdiagnosis. According to the CDC, Lyme Disease is being undereported and undiagnosed. But, I'm not here really to debate the issue with you.

You do bring up an excellent point in mentioning parasites and candida. The majority of patients with Lyme Disease also have candida and parasites. And I'm not saying that everyone who has parasites and candida have Lyme. I'm only referring to the Lyme patients in this response.

The borrelia bacteria is the most complex pathogen identified to date. It causes multi-systemic damage and it reduces immunity to an alarming level. With reduced immunity, pathogens that a non-lyme infected person might otherwise be capable of keeping in check will grow out of control (i.e., candida and parasites and worse!).

Lyme patients also have difficulty in eliminating heavy metals. Once the Lyme and Co-Infections are being treated and the bacterial load is reduced, previously metal toxic patients can usually see some degree of success in detoxing said metals.

SomedaySoon

P.S. By the way, I've got positive tests for Lyme and Lyme Co-Infections, Heavy Metal Toxicity, and Candida. Clear on parasites so far according to extensive bowel testing so far.

I've been treating Candida for a decade. Treating heavy metal toxicity for three years. In treatment for Lyme for the past 5 months.

whatever it is that is bothering me is sure hard to shake. I wouldn't wish it on my worst enemy.....

JK, i think you mean underdiagnosed. It is a worldwide epidemic, over 200,000 new cases in the US alone every year. Even the most knowledgeable heavy metal physicians are saying that the Borrelia spirochete (Lyme) now outweighs the impact of mercury etc.
And it's not just Lyme, it's all the co-infections with it.
I've been detoxing metals, doing candida diets for years with no improvement at all, and this year found out from a physician who has expertise in all these problems that i have major neuroborreliosis and co-infections, so no wonder metal detox hasn't helped.

Infections of this kind and others are devastating to the immune system and brain. The one I picked up, has been even worse than the mercury, as it has not enabled/allowed me to detox/heal as I did in the past (even if it was agonising to do it).

It has not been diagnosed, not known what it is, so as for now, I just have the candida diet and it does make "some" difference. Not it's not a cure, but it's a stabiliser for me and because of this diet, I have now been able to go out of the house, go on a course and start working.

I still suffer yes, but at least it's "something" and without treating candida with the infection I have on top of it, I was close to suicide. I also was not eating properly, lost my appetite from being so ill and was often bedridden. The candida diet pulled me out of a more serious situation. So yes it is very important, because it not only helps reduce yeast/fungus (which increases in any infection/immune suppression), but it also reduces that extra toxicity, which takes a load off the immunity which is already challenged enough. It is not just for candida, but the entire body.

metal detox "can" help too, but probably won't get far with infections like this. The body doesn't tend to respond too well to much unfortunately, but efforts with diet/detox "may" help and it's worth a try.

I'm sorry dental holocaust that the metal detox and candida diet has proved useless for you! I also don't get far either since I got this infection, but again, the diet at least keeps a "few" things at bay and has at least given me a bit more health than I had before (not much, but a bit compared to what I was is pretty significant).

When I just had mercury poisoning, I was able to detox and the candida diet made at times, dramatic improvements for me and health was something I gained along the way. That's not the same for me these days. Infections are a terrible thing!

Bex what kind of infection do you have man? It sounds horrible! Things just come at you in waves in life it seems and throw obstacles in your way. I feel very sorry that you were feeling better and then got another infection. You said this one made you look older as well when before you looked very young for your age right? I am thirty now and look 19, hope I don't lose my youthful look soon as that would suck. Can your infection be cured? Is it some kind of bacteria? I am going to try to help you somewhat if I can.


BTW what kind of life it is on a yeast diet? I would basically be miserable but I know it would help alot I love things in life that we can't eat or drink because of our condition, dagonit why did we have to get those teeth . I just wish we could do what we wanted and be so called normal without all of this Some days I just sit back and think what if and then get a little down Bex. We are survivors though, I hope we get a special spot in heaven one day and live our real lives when this one ends.

I have often wondered if Lyme could be part of my problem. I have had two tick bites on the back of my neck. The first one while I was a child and the second when a teenager. The second tick was removed the wrong way and when it came out it felt like someone hitting me hard. I had swelling and red mark for a while after.
Now my neck is very stiff and sore. It's the centre of my panic attack symptoms.
I did read Currently in Australia there are no reported cases of locally acquired Lyme disease so hopefully lymes is not my problem and it's just mercury. Just mercurey, HA!

^^^ HAHHHA yeah, hoping it's just mercury is scary as hell, but hey some of us are just in that deep unfortunately.

Hi Sean, the infection I got in 2003 is a mystery, but how I got it you can read about here: http://herballure.com/ubbthreads/ubbthreads.php?ubb=showflat&Number=27247#Post27247

It is the most bizzare thing I have ever encountered and has never left my system. It's caused a kind of permanent suppression of immunity and symptoms flare far more after exertion (exercise). I have to be very careful all the time. Before this infection, I had suffered from mercury toxicity and then later, the horror of going through mercury detox, which for me was devastating. I started getting sick from mercury around 15 (at least that's when it became obvious). I got amalgams out at age 24 and only began really healing properly at around age 19-30. Then I got the infection at age 31. So my stint of feeling well, did not last and I was knocked from the infection far more than anything else in my life.

I am not really into any new treatments, as I have done alot and paid out alot to no avail and for me, it's a case of controlling the problem as best I can in the way that has any effect at all in helping. Most things do not.

I may find out if I can get my cavitations surgically cleaned out by someone at some point to see if that makes any difference to my overall condition, but even that's a difficult one to diagnose too.

As far as the youthful appearance thing goes? Mine chops and changes. This infection has had a pretty profound effect on my system and I think has aged me, at least internally because of the ongoing strain and inability to heal properly or thrive. Mercury was horrific, but it's healable/detoxable eventually, unless there is permanent damage. Perhaps I was permanently damaged and didn't realise it and that may have been why I got the infection. But certainly after detoxing alot of the mercury I had been feeling FAR healthier (before 2003 infection).

Like yourself, I was very young for my age but when you get hit by one thing after another and then something worse comes along, things can really change a person and this was the final straw I think.

Thanks a lot for your concern and kind words. Nice to know you have a strong faith and thank goodness for the promises of Christ eh? That this life is not "it". Whatever we've lost, if we stick with Christ, we shall gain back ten fold. Many times that has given me hope and strength to go on. Without that? Well I don't know! and I don't want to consider what may have happened.

So you're about 36 now Bex? I'm always kind of curious how old people are... I'm worried cause I keep having (and am now) this really intense pain in my left jaw lately. I use to get shockwaves of it just for split seconds, but this is more lasting. It is throbbing right now. I noticed on an x-ray recently, too, that there seem to be pockets in my jaws... I've never looked into cavitations. Can it be that when you start detoxing you actually release some of these toxins? I've done better the last few weeks as far as avoiding sugar, etc., than for quite a while. I'm dropping weight, too. Almost feeling kind of puny... I just got some DHEA, too. I guess basically that is infection, right????

I always have had a babyface. I rode up on my bike when I was 20 something and some guy asked me why I wasn't in school thinking I was 15 : ) Another lady thought I was 18 when I was 27 pregnant with my first....That's nice as you get older.... My hair is my main give away, but I use henna. I kind of like the white coming in, but just not quite ready for that. It is WHITE, though, not gray. My husband likes it. But the last few years have been rough on me, too. I am going to have to pay the piper for ignoring my health the past while.... I use to cleanse regularly....I think it's what kept me young as long as I have been...

Hi Jeanie, yes near enough to 36 Just a couple of months to go pretty much.

You may well have cavitations, many people do. Though some don't notice problems, as their immunity keeps the bacteria localised. Though if your immune system becomes challenged, the bacteria can then spread and become systemic (or it may happen anyway for any reason). You can get illness from this alone, which according to Hal Huggins can be far worse than mercury poisoning.

Cavitations can even prevent a person recovering/detoxing properly from mercury toxicity. They are a big issue in some people. They are tough to diagnose and see properly and even a small one can still contain potent bacteria and it's just one of those things that is very very difficult to find.

Well, I never quite got the mistaken for being out of school stuff at age 20 or anything, but I think the healthy diet kept me young for a long time until this darn virus. Sugar is ageing and excluding it can do wonders for some people. I found wheat/gluten not much better than sugar. Pretty much a poison for my system.

Mercury can also cause early greying of the hair. Especially in women apparently. Some people, upon getting well again, have regained the pigment in their hair It can indeed happen. though eventually we're all going to go grey, many of us can get there prematurely through toxcity. Early menopause is another one that can occur from toxicity of this kind. Very sad, but I doubt most get through life unscarred/untarnished and are we really meant to? As a believer, I am well aware of the meaning of the cross.

i did start greying (whiting) early....its just in my temples still mostly. I admire Jamie (?)...the actress who sells Activia if you see that in NZ. She's older than me but let herself gray and it brings her eyes out! At some point I'll let nature let it takes its course. I pretty much am. The henna only highlights so it looks blonde there instead. (I have light brown hair).

Anyway - so do you fight it pretty much like any other infection? I have been very bummed at times since learning about all this...then got so I accepted it but in doing so quit doing much about it. I've just never felt the jaw pain this consistently but also have a sinus headache. Maybe it has to do with the pressure from the hurricane south of us. I do feel weather. Obviously, though, its a weak area and indicates an issue. I am doing a lot better on sugar issues : ) You've become like an angel on my shoulder Bex... (Thanks ) I know I'm not the only one who feels that way.

I agree - we'll get new bodies....it's all worth it. We are only mortal. Life has never been easy for anyone, but I see these country scenes and miss or long for simpler times. I miss Alaska right now. The pristine wilderness..purity. But even there its being affected. Take care Bex. Blessings.

Hi Jeanie,

I haven't gone grey yet, but I know it can happen early in toxic conditions. I have had the odd white hair, which I've yanked out. But I think they're "freak hairs" rather than much else, since it doesn't seem to grow back white again....

Your symptoms could be related to a few things at once. It's scary eh? A person can be suffering from multiple problems - mercury, cavitations, candida, infections etc. I think this is why some people become desperately ill and suicidal. Not because they are "negative" but because their brain chemistry is being screwed around by these toxins. Negative feelings and behaviours is often a reflectin of a toxin mind, NOT a truly "negative person". I think many people struggle and are pretty heroic in my opinion to even get up most days in some conditions.

It takes sometime to get cravings out of the system too once you start the diet. it's a fight and may take a few months even with ongoing battles to subdue the yeast beast and the cravings it gives off. Once you reach that point, you may even be able to be around people consuming all manner of goodies and not be so tempted. you may feel irritated that you can't indulge, but that desperate craving may not be there, but the increase in health is worth it all and you wind up thinking "i'd rather miss out on that stuff, than indulge and miss out on better health".

Yeah, like yourself, I look forward to the ressurrection! in the meantime, we can only do what we can to improve our condition and make efforts, but sometimes suffering is not always avoidable, unless we bring it on ourselves and have the knowledge to change and don't.

Thanks for your kind comments Jeanie! I think the same about people here on this forum. It's a commune of sick people sharing their pain and their help and that keeps one going sometimes. It maybe the only place for some people to get heard and understood.

Cheers!

Cheers to you too! Wow - are there 2 of you on here?

Its really easy to cut sugar cravings if you start eating the proper fats...I'm talking about organic butter, coconut, olive oil, etc...

Butter is the main one though...its been demonized but it is a safe and very nourishing fat that has been used for centuries without any problems. Just don't use that stuff from factory farms as those animals are sick and the butter will be very low quality.

Well I went to my GP and I heard what I expected from a non-LL doctor. He said because of I'm equivocal (not neg or not positive) that I probably don't have lyme. I thinkgs it's my barrs-epstein or hep B acting up. I'm pretty sure it's the other way around. I'll be getting the Western Blot test soon enough.

Hey Bex, I also get a worsening of my symptoms after exercise. My back has been killing me after I started Salt/C.

What do you mean? And no there is only one of me on here!

I read that post right after the other....just forget it, ok? Sorry... I appreciated your response. Just seemed inconsistent at the moment...

Well I got my Western Blot test back today and the results are Negative. I was tested on these bands:
18
23
28
30
39
41 -------active
45
58
66
93
All but 41 were negative. 41 is for flagella or something. That doesn't sound too good to have it active anyways. SomeDaySoon you seem to be versed in Lyme so do you think this means anything?
I know with a certainty that something is bothering me but I can't figure out exactly what it is.
I got the results from a lab called ARUP in Salt Lake City Utah. I want to use Igenex but I'll have to wait on that.

Hi Sittingduck,

Hmmmm, I'm afraid I am not familiar with the ARUP lab that you used. Sometimes using any lab other than Igenex can make a big difference. I know that the Western Blot testing at Quest and Labcorp is extremely unreliable and gives ALOT of people false negatives. Those labs don't even test for all of the Bands of the Lyme pathogen.

Igenex is the lab of choice in doing Lyme Western Blots, that's according to the ILADS organization and all the Lyme groups I'm familiar with.

It looks like you have something going on. And, after my own experience in trying to get answers over the past 11 years, plus what I've had to learn over the past year or so regarding Lyme, I'd say it really might be worth your while to be evaluated by a Lyme Literate Doctor to see if Lyme is the root of your problem.

You're feeling poorly. You already have an equivocal Elisa test (that could be significant regarding Lyme) -- even taking into account the fact that something like 70% of the people with active Lyme infections will test completely negative (i.e., not even an equivocal response) on an Elisa. And now you have some reactivity on Band 41 on the WB with this lab.

There is some disagreement about the importance and significance of Band 41 in Lyme diagnoses. I tested positive on Band 41 in both IGG and IGM with Igenex. Band 41, as you said, represents flagella. The flagella is the tail of the bacteria and many bacteria have a flagella. This is how Borrelia burgdorferi (the Lyme bacteria) moves around, by moving the flagella. Band 41 is the most common borreliosis (i.e., Lyme Disease) antibody.

I'm not sure entirely why there is disagreement about the importance of this Band. I know that some of it involves politics going all the way to the 1970's when testing was first being established. As far as scientific reasons, I'm not sure why there is disagreement.

I'm going to refer you to a thread on a Lyme support group bulletin board. I'd post the contents of it here for you except it's a little long. It is called "Dr. C's Western Blot Explanation." Dr. C is a Lyme Literate Medical Doctor. There is also other information in this thread that might be useful to you.

http://flash.lymenet.org/ubb/ultimatebb.php?ubb=get_topic;f=1;t=042077

There are many reasons why a person will get a false negative on Lyme blood tests. False negative meaning that they are still infected with Lyme Disease but aren't getting positive results on bloodwork. I've posted some of the reasons that are already known in the Lyme Disease section forum. I got this information from the Lyme Disease Foundation. I'll paste those reasons below as well.

Given how you've been feeling, I would really try to get the Igenex test done whenever you are able. Knowing what I now know, I'd also try to get evaluated by an LLMD. Many, many times a Lyme diagnosis ends up having to be a clinical diagnosis based on signs, symptoms, history and sometimes responses to trial treatments. Testing for Lyme right now is just so problematic.

I also just wanted to mention that Epstein Barr Virus as well as the Hep B you mentioned are known to re-activate when a Lyme infection is present. In fact, Lyme and it's Lyme Co-Infections can reactivate all kinds of previously dormant viruses in the body. The immune system just gets so overwhelmed and altered from the Lyme that the body has difficulty keeping everything at bay.

Most people with Lyme disease that has not been diagnosed early, end up with other infections as well. Some may have been previously dormant in the body, as I said. Others may be new -- they may be infections from pathogens that healthy people would be able to fend off. Some of those infections are things like Mycoplasmas, Chlamydia Pneumonia, viruses like EBV, Herpes viruses, HHV-6 -- to name a few.

The good LLMD's have had to become rather familiar with these other infections. Those doctors are generally better then a non-LLMD in navigating the quagmire and finding appropriate treatments.

Hope this helps!!

SomedaySoon



Here are some of the reasons for testing negative on Lyme bloodtests.

Lyme Disease (as well as other co-infections that are commonly seen a long with a Lyme Infection), can sometimes be very difficult to diagnose via blood testing alone. While blood testing should be included in making a diagnosis of Lyme Disease, frequently other diagnostic criteria need to be utilized clinically.

There are many reasons that a patient would be seronegative (i.e., test negative) on the tests. Listed below are nine reasons:


Nine Reasons for False Negative Lyme Disease Blood Tests


The Lyme Disease Foundation (LDF), in their brochure entitled "LDF Frequently Asked Questions About Lyme Disease" lists the following nine reasons for false negative Lyme disease test results:

(NOTE: The standard tests for Lyme Disease do not look for the bacteria, but rather the immune system's response to the bacteria. The ELISA and Western Blot both test for antibodies which is what the immune system produces when infection is present. Because the tests look for this indirect measure of infection, false negatives are not uncommon.)

A. Antibodies against Bb are present, but the laboratory is unable to detect them. [Borrelia burgdorferi (Bb) is the Lyme disease bacteria.]

B. Antibodies against Bb may not be present in detectable levels in patients with Lyme disease. Reasons are listed below.

1. The patient is currently on, or has recently taken, antibiotics. The antibacterial effect of antibiotics can reduce the body's production of antibodies.

2. The patient is currently on or has previously taken anti-inflammatory steroidal drugs (such as those taken to treat rheumatoid arthritis) or certain anticancer drugs. These can suppress a person's immune system, thus reducing or preventing an antibody response.

3. The patient's antibodies may be bound with the bacteria with not enough free antibodies available for testing. [I think this reason is very important and prevalent. For this reason, some of the worst cases of Lyme disease test negative - too much bacteria for the immune system to handle.]

4. The patient could be immunosuppressed for a number of other reasons and the immune system is not reacting to the bacterium.

5. The bacterium has changed its makeup (antigenic shift) limiting recognition by the patient's immune system.

6. The patient's immune response has not been stimulated to produce antibodies, i.e., the blood test is taken too soon after the tick-bite (2-6 weeks). Please do not interpret this statement as implying that you should wait for a positive test to begin treatment.

7. The laboratory has raised its cutoff so high that a patient's previously positive test is now borderline or negative.

8. The patient is reacting to the Lyme bacterium, but is not producing the "right" bands to be considered positive.


Lyme Disease Foundation
1 Financial Plaza
Hartford, CT 06103
(860)525-2000
fax (860)525-TICK
Lyme Disease National Hotline (800)886-LYME
email: mailto:lymefnd@aol.com

Thanks. That was quite verbose. I am in the process of gathering info on Lyme treatment. What you said helped and I think I really need to keep looking this direction. At some point I will get tested by Igenex lab. I just can't at this time. I truly appreciate your thoughtful response to my question. This is getting interesting as this is an Amalgam forum but I'm starting to see some links between these two issues and all our health.

A lot of you said you experience increased symptoms after exercising and that can be linked to mercury poisoning. When you exercise, mercury will be released into your body. That's why Dr. Cutler says to take it easy. Only do as much exercise that doesn't cause symptoms and doesn't force you to rest afterwards.

You all may be burning out your adrenals in addition to mobilizing mercury. I have to watch this in myself because my adrenals aren't working optimally. I also have to be careful not to dehydrate myself. Exercise is practically impossible for me other than casual walking.

Hi sittingDuck,

Verbose? As in exceedingly wordy? Yes, perhaps it was. But I couldn't figure out anyway to answer your questions without providing some backup. This is the most complex bacterial pathogen discovered to date.

And, yes, you are right! The two issues are linked as I noted in one of my responses to you above. Heavy metal toxicity and Lyme are often seen together. I've posted some info on this issue in the Lyme Disease Forum here on HerbAllure.

Anyway, you're very welcome for the information. I'm happy to help however I can. I know how frustratingly difficult it is to not know what is causing ill health. Not a fun position to be in to say that least!

I wish you good luck in your search,
SomedaySoon