Hi Folks,

For those of you that are interested, I wanted to let you know that the feature-length documentary on Lyme Disease, "Under Our Skin," was released at the Tribeca Film Festival in New York City this past weekend.

Linked below is a 5 minutes movie trailer on this film.

http://www.youtube.com/watch?v=sxWgS0XLVqw

Here is a summary of the film from the film website:

An infectious film about microbes, money and medicine.

One of the most controversial illnesses in the history of medicine, Lyme disease may be the fastest growing infectious disease in the United States. Yet each year thousands are misdiagnosed - many of them told that their symptoms are "all in their head." This upcoming documentary investigates the shocking human, medical, and political dimensions of Lyme disease, an emerging epidemic destroying countless numbers of lives. A case study of the dangers of the confluence of money and medicine, the film brings into focus a haunting picture of our healthcare system and its inability to cope with a biological terror under our skin.

Film website: www.UnderOurSkin.com


Sharon

too bad mercury poisononing doesn't get as much attention as lyme recently. (got tested for it btw today).

Hi Jinx,

I know what you mean about the mercury poisoning needing to get more attention. Although, I'm finding that many of the Lyme Literate Doctors are, indeed, incorporating heavy metal detoxification treatment with their Lyme patients.

I found this link about Lyme and Poland. Thought I'd pass it along to you. I'm afraid I can't read Polish, so I haven't a clue whether it's any good!

http://forum.gazeta.pl/forum/71,1.html?f=26140

I was having problems getting the link to paste as a live link. So, if it doesn't work for you, try this link at the CanLyme org. site. Click on "World-Wide Support Finder" icon on the left. Then the link to Poland will be on the right hand side under "World Support and Information." Just scroll down about 1/2 way and you see it there.

http://www.canlyme.com/

I hope it helps!

Sharon

hey sharon

so nice of you to go to trouble to paste me that link, thank you - and yeah i know this forum, been visiting it just asking no questions there cause my brain is in a near schziophrenic state. As I said, i was tested for lyme yesterday, my blood was taken, the method is PCR so we'll see.

I'm mighty grateful for your continuing efforts in bringin this disease to our attention, Sharon.
There's somethin about this epidemic makes me powerful suspicious.
For a start, it's named after Lyme, a town in southern Connecticut which is a deer's swim away from Plumb Island, a government disease " research" center., amongst other thangs. I ain't the only one holdin this somewhat contentious opinion, neither.
Oh yesiree, but then again, I AM a conspiracy nut.
Proud of it, too.

PS, Hope y'all find some answers there Jinx
Will watch that film and more power to your healin, Sharon.

I have booked a telephone consultation in two weeks time with one of the very few Lyme literate doctors in the UK ie Dr Andrew Wright in Bolton Lancashire. He will also do a blood microscopy examination if the clinical evaluation points to Lyme I am not sure how reliable this test is but i know that normal blood tests are highly unreliable and the NHS ones pretty useless so if you have had a NHS test jinx it has a high chance of being false negative.

Finding out about this disease is scary stuff. It manages to hide in the body to avoid detection from the immune system and even with long term anti-biotic treatment and I am talking about years - it can still remain to appear again later. I can't take abx so will have to use other means to try to get it into remission.

As things stand for me due to the possible heavy load and the definite mercury damage, my prognosis is not good from what i can gather. The outcome if it is not put into remission is wheelchair due to the knee problems which I already have and which have worsened a great deal this past few months and heart attack. I have pains in my heart area. For this I take Q10 and magnesium and for the liver problems I take milk thistle. There are some people who chose not to take abx and who are using different protocols including using machines to zap the bacteria. The herx from the death of the bacteria releases mercury into the system making recovery more complicated.

At present I am concentrating on my diet which is really excellent and I have been adding more raw foods like alfalfa powder mixed in with freshly squeezed veggie juice - at present carrot celery and dandelion leaves. I have maca powder and mesquite powder too, and goji berries. trying to fit it all in a day is a headache.:( I don't know whether to go vegan or not. I am on ACE and it feels better than the other glandular. Most of my time is spent in research and it is such a maze as there are so many conflicting views. I want to do some cleansing and hope to find one which will not be too taxing at present. Since I gave up gluten a few weeks ago, I have had the most amazing dream recall. i can only assume that my villi are healing so I am absorbing more B vitamins. Gluten is bad for everyone.

There are over known 700 cases in the UK every year and mark the known. I should imagine that the true figure is very much higher. There should be public warnings about going into wooded or shaded areas without some level of protection in wearing tucked in trousers and shoes instead of sandles. The bite is painless and the tick will often climb up into hairy areas before it embeds itself so detection can be nearly impossible.

I must say that here does seem to be something not quite right about the information available, the refusal of the NHS to acknowledge or treat it, and the huge long term cost of treating undiagnosed people with it, with plenty of profit to the pharma companies that it makes you wonder Elvis.

mati are u talking about PCR tests being unreliable or elisa tests? cause if the latter i understand, because it tests for antibodies which require an immune response, but if the former than it supposedly needs some bacterial dna in the blood to find it. so I know the importance of taking stuff like grapefruitg seed extarct to help the immune system recognise the bastard bacteria, but am wondering if it's necessary to do it with pcr as well. (i didnt do it:/)

I am so sorry for you folks with this illness, at times , I think I got a dose maself, an prolly do albeit mild enough to still function.
Thing is, I don't bandy this info out lightly, and don't want to get folks all paranoid, but ya know, the govt ( prolly in the US, but it is international) created AIDS, and they DO have a cure. It's even got a patent number,#5676977.Yep, wouldn't wanna invent that lil abomination without a cure , wouldya?
Have a look
http://video.google.com/videoplay?d...s+cure&ei=5WAYSOvbOoP42gL8yPHWBg

Y'all can see the blueprint for AIDS, and I mean that literally, folks.
Anaways, why I keep bangin on about all this is, I'm purty dang sure if they made this particular Lyme nastiness, they got a cure, so we gotta get the pressure up. An it IS rising, more power to it. I try not to let it get me down, knowledge IS empowerin, specially when the numbers go up.

Heard from one natural practitioner that a 10 day round of HCL with a potassium activator is one way to go, also cats claw ( without sumpin or other, TAO?, dunno) Gotta keep the ph up and portect the kidneys on this here regime.
I know someone from here is gettin treated by the illustrious Klinghardt., that oughta be a good bet. Hope it's goin real good soon for him.

Anaways, I smell a very big rat here,an so does ma dog.
Sides, I ain't a conspiracy theorist, I'm a conspiracy realist. An when it gets real to all a y'all, we won't have to take this tyranny.
Keep up the good fight. Mighty impressive diet, there Mati. I'm blushin.

Hey jinx

I know the elisa test is unreliable, but that's not the one the NHS do? Don't know anything about the PCR.

I was reading today some info on Lyme from NJ and it says that it is found in the tissues and not the blood which makes me wonder about the test Dr W gives.

Elvis drat i cannot hear on my speakers. So you think they infected the ticks? But it's been around for a good while.

The only reliable way of testing for lyme disease is testing through igenex. other wise there a waist of time,

only tests worth using are PCR and western blot, and they need to be done through igenex, Using over labs has been known to produce false positives and false negatives.

Even though you may get a negative through igenex, you could still have it, but atleast with igenex you cant get a false positive..

Heres someone who found lyme disease from using a microscope.

http://www.lyme-diagnosis.org.uk/

Elvis,

How nice to hear from you! I miss seeing your posts. And thank you for all the support. The fact that you "smell a rat" in the entire Lyme scenario is gratifying to me. Something really weird has (and is going on). All diseases and illnesses are terrible. But this one is a doozy because doctors are ignoring it and refusing care. Some of the parallels in this story to the mercury issue as well as other issues that we've all discussed here are really disturbing.


Hi Jinx and Mati,

Ok, on the testing issues. I'll try and give some info here through my fuzzed-out lyme brain. lol

The biggest problem is that there is NO medical test which will definitively rule out Lyme Disease and the Co-Infections that are usually seen with Lyme Disease.

The Centers for Disease Control in the USA ("CDC"), the Food and Drug Administration ("FDA"), the U.S. Federal Clearinghouse for Guidelines (this is the Government organization which publishes recommended diagnostic and treatment guidelines for the medical establishment), all have formally announced that the diagnosis of Lyme Disease MUST be a clinical diagnosis based on patient history, signs & symptoms and then testing. Laboratory tests should NOT be used to exclude an individual from treatment. Tests should be used to support rather than supersede the physician's judgment.

These statements are easily gotten on the websites of all of these organizations.

I'll just share again what my experience was. I will start by saying that over half of the people who are sick from Lyme Disease (and Co-Infections) will test seronegative (negative blood test). Some of the reasons for this are already known and have been shared among Lyme Literate Doctors; however, the rest of the medical establishment doesn't want to know. I'll post them again in this thread in a new post after I finish this one.

As Smitho has said, the best tests for Lyme are via PCR and the Western Blot via Igenex.

Anyway, after 11 years of illness with the last 3 years being the most difficult -- and the last year and a half being the most debilitating with new symptoms appearing, I was finally diagnosed with Lyme Disease and some of the Co-Infections that go along with it -- Babesia, Bartonella and we already knew that I had Mycoplasma.

I was CDC negative on my first Lyme blood test. This test was an ELISA blood test.

I was negative on the Igenex Western Blot blood test; HOWEVER, I had many, many Indeterminate bands and one positive band. This test has been interpreted by 3 separate physicians as a positive Lyme Test for me given my history, symptoms, signs, and given the rest of the testing I had done. In order to have been positive, I would have needed at least 2 positive bands on the blood test. I had 1 positive band and many Indeterminate bands -- Indeterminate meaning that they saw some activity of Lyme infection but not enough to make the cut-off for their positive reference ranges. That was like being a little bit pregnant.

I was positive on the CD57 test. This is a blood test that is used as a Lyme marker test. Low numbers indicate ongoing and/or chronic Lyme infection. Doctors like to see patients in the reference ranges of above 200, as that is considered normal. Any number below 60 in this test indicates Lyme infection. And if the test is below 20, it is indicative of severe illness . . . . . . My CD57 number was 1.

My Darkfield Microscopy results were negative. They did not see evidence of the particular pathogens. However, they did see overwhelming evidence of severe bacterial infection in the form of severe inflammation, white blood cell activity, etc.

The ART (Autonomic Response Testing) for Lyme Disease and Co-Infections were glaringly positive.

My Co-Infection tests were positive, even though the Lyme test was negative.


As jinx mentioned, sometimes people find that their immune systems need a challenge in the form of some sort of treatment for Lyme in order for the antibodies to be produced and appear on a Lyme blood test. Back in the Fall when I finally got round to proper testing, I had already had some of those challenges/treatments in the form of short courses of antibiotics, Cat's Claw, etc. -- yet I still tested blood negative for Lyme initially.

My situation is not unusual for a Lyme patient as far as testing results go. And it is also important to try and get evaluated and tested for the Co-Infections that go with Lyme.

I still have the metal toxicity issues that need to be dealt with as well. But I need to try and get the bacterial load down a bit first.

Many patients have to travel far and wide in order to be evaluated for Lyme Disease and Co-Infections. Many have to travel to other countries for evaluation and treatment. The highest concentration of Lyme Literate Doctors appears to be in the U.S. at the moment. But even then, treatment can be very hard to come by due to long distances traveled to said doctors and long waiting lists due to demand.

I guess what I'm trying to say (and I'm not saying it very well!), is that testing for Lyme & Co-Infections can be as difficult as testing for heavy metal toxicity and/or mercury poisoning as far as getting results. There seem to be alot of false negatives on tests.

If you test negative on a Lyme test and are still having symptoms and chronic illness, it's important to be evaluated by a Lyme Literate Doctor so that they can help you rule in or rule out the possibility.

Sorry for all the "wordage" here. I wanted to try to comment on everyone's responses.

Sharon

p.s. As I've said already, mercury poisoning/heavy metal toxicity is often seen along with these illnesses. I guess the metals just interfere with our bodies enough to make it hard for us to fight off these infections.

p.s.s. Two good places to start for finding resources and info on Lyme and Co-Infections are:

http://www.lymenet.org

http://www.canlyme.com/

Here is a copy of one of the posts I've placed in the Lyme Disease Forum here on HerbAllure.

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.


Hope this helps!

As reverend Wright would say , the chickens have come home to roost. Your body does'nt give you a free lunch and if you use antibiotics , antiinflamatory drugs especially steroids , progesterone cream, pain medications ,and many other drugs your immunity will be shot and so will every other system .

Scientists have determined the sequence of the virus . This does'nt mean they created the virus. Just because someone gets apatrnt on a substance they claim cures aids does not mean it does cure aids.

If the government created aids , how does the government keep straight white people from getting it? If black people have a higher rate of aids it is probably because of lifestyle choices. Black women have a much higher incidence of cervical cancer . Is this because the government created hpv or because they have more sexual partners?

oh sarah, you have come to my rescue, please help me, i would like to come of my phsycological dose of hydrocortisone, 20mg. i actually need this to live, i have no thyroid, well only 10% but thats not enough, anyway, what do you suggest? I have tried adrenal cortex but it gave me too much adrenalin, i take all the right supplements for my adrenals, look after my liver very well too, no problem there.
Also the progesterone cream, any ideas how to get off it, my estrogen is sky high, due to doctors ripping out my poor thyroid gland. It is very serious, Being an expert like yourself, you know the consequences of high estrogen, yes, breast cancer,oh yes and in my case murder, i get very bad tempered without the cream . Your professional help is needed, by the way i have no amalgams. P.S i have on 2 occassions had breast lumps.
Dawn.

I did'nt realize you had your thyroid removed . Why did you have it removed ?
Other people on the forum use those pharmaceuticals and their thyroids are intact.

Howdy Jill, missed ya. And honey, there's a patent on the disease not the cure , differnt thang.

i had my thyroid removed cos my thyroid went haywire, my life was in danger, my neck and eyes were bulging, i was put on beta blockers and had adrenal burnout before i was diagnosed, i went to a private clinic, who told me id had a heart attack, i was in my early twenties then. I was put on thyroid tablets for 7 yrs but they didnt work, if id known what i know now, i could have kept my thyroid. Some people here no matter what they do, their thyroid doesnt work, which causes adrenal probs, there is an epidemic of thyroid disease around the world, alot of it undiagnosed.
Docs are useless when it comes to hormones, you have to find a specialist in alternative medicine to get treated properly or treat yourself, the info is out there, testing, etc.

Dawn, I just have to say that I'm sorry you've had to go through that! I am still consistently amazed and disappointed at the lack of knowledge, awareness and even common sense some doctors possess.

I don't know why I find myself surprised when I hear of other people's bad experiences with medical care, but I am.

You're so right though -- we have to try and learn as much as we can on our own. Caveat Emptor (Let the buyer beware) applies to consulting with/or buying medical services just as it applies to other aspects of purchasing things in one's life.

Hugs,
Sharon

Hi Jill, welcome back!
Hi Sharon, yes its frightening, its not as if mainstream docs know anything, well they know how to mend broken bones <img src="/ubbthreads/images/graemlins/hospitalbed.gif" alt="" />and all that but most things they would rather say they dont exist than admit defeat. Thank God for the internet!
Elvis, again you have me in stitches, <img src="/ubbthreads/images/graemlins/grin.gif" alt="" />

Hi folks

Just to let you know that Dr AW told me that my Darkfield test is positive and there is Lyme, and co-infections including Chlamydia Pneumoniae (not the STD one) in fact he says I have the whole shebang. He has a new protocol which is mainly abx. Still a long way from treatment though. I am asking my kinesiologist this weekend if I should take hc. With everything else, i test myself now - with my calf muscle and it works! Wow it is going to save me some money. I have been reading about the Bionic 880 which is photon light therapy and used in Germany for Lyme and other conditions. it is worth reading up on - I think it is the future. It stimulates the cell to heal. Long road ahead still. Feeling a little better since seeing kinesiologist, she is good. She showed me where to massage to relieve pain and fatigue. Adrenals have recovered from whack from B12 lol - will take it easier in future.

Sharon,

Thanks for bring Lyme disease to our attention. I was just tested through Igenix. My IGM had band 23-25 ++, 31 as IND and 41 IND. I have been reading the politics of what is a positive or negative test by different organizations, CDC, ILADS etc. I have an appointment tomorrow with a LL (Lyme Literate Naturopath). I am of the understanding that one positive band indicates a positive test for Lyme. Again, thanks for posting on this issue.

Patty<img src="/ubbthreads/images/graemlins/byebye.gif" alt="" />

I am glad Marie is going to get much needed medical attention

Mati,

What is calf muslce testing? How do you do it? I've never heard of it, sounds interesting. Thanks. angelbaby26

Hi angelbaby

I lie on my back with one knee bent and use that leg for testing. I hold the thing I am testing and bend a bit and push the calf muscle with the arm on that side, and resist it. If it 'holds' then the thing tested is ok but it it moves, then that is rejected by the body. It does not always work but i tested something then took it to the kinesiologist and she got the same result.

Have been investigating the BIONIC 880 for Lyme disease

http://www.biophoton.de/eng/bionic_880_eng.htm

and fancy trying it. There is a doctor who does it in Berlin and a friend there can give me accomodation so it looks like I will be off to Berlin this summer.

One week into parasite cleanse and on Monday I felt better then i have done for a year. To move things along better i have started on Oxy-powder bowel cleanse. I'm really chuffed at how I am feeling.

<img src="/ubbthreads/images/graemlins/grin.gif" alt="" /><img src="/ubbthreads/images/graemlins/cool.gif" alt="" /><img src="/ubbthreads/images/graemlins/dance.gif" alt="" /><img src="/ubbthreads/images/graemlins/imnotworthy.gif" alt="" /><img src="/ubbthreads/images/graemlins/boogie.gif" alt="" /><img src="/ubbthreads/images/graemlins/kewldance.gif" alt="" />

<img src="/ubbthreads/images/graemlins/byebye.gif" alt="" />

Mati,

I'm glad to hear that you are getting more answers. While I'm sorry to hear that you have been thrust into the Lymelight -- I just want you to know you're not alone. I was interested to hear how the Lyme and Co-Infections were seen on darkfield microscope. I had that done in addition to all the other traditional blood testing. Weirdly, all that was seen on the one darkfield sample was evidence of a severe bacterial infection and candida but they couldn't see particular Lyme pathogens in the sample they took.

I read some of that information on lymnet about the Bionic 880. Please let us know how you do while you're in Berlin. I think the reports coming out about it's success are so intriguing.

Anyway, I wanted to wish you well as you begin treatment. Stay strong!

Sharon

p.s. Glad to hear that your body is handling some of the detox so well with the parasite cleanse. Everyone I know who has successfully tackled this monster illness has also included some sort of detoxing at some point during their treatment.

Patty,

I'll say the same to you that I said to Mati -- while I'm sorry to hear you've been thrust into the Lymelight as well, I'm glad that you're getting answers. And good for you for seeing a Lyme practitioner! I don't know what I'd do without my Lyme doc. I have found that nearly all of the Lyme doctors are schooled in the use of herbs and complementary healing modalities. They've realized that for many patients, this disease requires allopathic treatment and herbal/complementary treatment.

I've posted a number of articles in the Lyme DIsease section of the Forum here. I don't know whether you've seen it or not. But I'll put a link to the Forum in any event. Mostly it's just resources and links that I"ve found to be really quite helpful to me.

http://herballure.com/ubbthreads/postlist.php?Cat=&Board=LymeDisease


I just saw the documentary "Under Our Skin" last week and it is phenomenal. Very well done and informative. The director of the film has made advance "play only" (no chapters or special features in this edition) available for purchase. I think they are planning to release a more inclusive DVD which will include chapters, bonus features, special features, etc. in the future after they get distribution in theatres.

I'm also reading a new book that just came out this week by Pamela Weintraub called "Cure Unknown: Inside the Lyme Epidemic." It's good! Here's a link to the books website. It has some links to certain portions of the book for perusal:

http://www.cureunknown.com/

All the best as you begin treatment, Patty.

Sharon

Thanks for the explanation of the muscle testing Mati, that sounds interesting. I am going to try it.
So glad the parasite cleanse is helping you feel better just in one week. That's great!!!! <img src="/ubbthreads/images/graemlins/cheers.gif" alt="" />
I hope you continue to experience good results throughout the cleanse. <img src="/ubbthreads/images/graemlins/bestwishes.gif" alt="" />