Re: Dr. Rind and Lymes

August 29, 2010

Hi Steph,

Lyme tests are notoriously inaccurate. The only lab that actually uses the

strains of Lyme that are found in the various parts of the U.S. is Igenex (

http://igenex.com ) - the other labs typically use European strains. Also, the

other labs in general don't report the values for all the specific bands. Some

of the bands are Lyme specific (others can be due to other infections) - the CDC

excludes the Lyme specific bands because there used to be a vaccination for

Lyme, which is real idiocy since reasonable people would know whether or not the

positive result was possibly due to being vaccinated.

Also, Lyme changes forms over time and the tests just CANNOT pick it up - the

cystic form can be the most dangerous as that form gets into cartilage and Lyme

is very difficult to eradicate then. Lyme bacteria have a 4+ week lifespan, so

typically any antibiotic needs to be given for at least 30 days.

A friend had very little tolerance for the antibiotics early on because she was

so toxic - the toxin load increases while on antibiotics since the antibiotics

are killing the bugs so she got all the toxic debris. After being on the

Shoemaker protocol for 9 months, her tolerance for antibiotics increased

dramatically and then she was able to handle the 30 days without becoming almost

totally debilitated.

Some patients just don't test positive – Dr. Shoemaker says that the bar for

positive is fairly high to avoid false positives, so a sub-set of folks that are

negative do have issues. He actually looks at six key factors in making his

diagnosis - if 3 of 6 are positive, then he has a high level of certainty that

toxins (from mold or Lyme or other bioxin producing organisms) are the cause.

The 6 factors he considers (with 3 out of these 6 being hormonal) are:

1) Gene test

2) Hormones in the brain (MSH) - this controls all your hormones

3) Inflammatory marker (MMP9)

4) Disruption of pituitary hormones: TSH, ACTH, adrenal

5) Management of salt & Water (ADH/vasopression, osmolality) - ADH is the

hormone that tells your kidneys to excrete fluids. If it's low, you pee all the

time. If it's high, you often have high BP and bloating.

6) VCS test results (Visual Contrast Sensitivity (VCS) test)

This is really why most docs will not catch this because they would never

consider that folks could have these hormonal disruptions without total failure

of the glands/organs. All the codes and recommended labs for those tests are on

his website: www.biotoxin.info/Lab_Tests

The thing about mold and Lyme is that since they both produce toxins, which

trigger inflammation, exposure to one will often trigger the other. You can

never totally eradicate the Lyme (our bodies actually have more cells that are

non-human than we have human cells). So, if you have had Lyme and then get

exposed to mold, a cascade of inflammatory reactions is triggered, which impacts

the immune system and thus the Lyme will often surface again. Or, if you've had

mold exposure and then get Lyme, your immune system is already in a state where

it is incapable of handling the Lyme infection. And, this all has to do with

genetic predisposition - 25% of the population has the genes that predispose

being made ill due to the inability to recognize the mold toxins.

The good news is that these things can be treated with both conventional and

alternative therapies. My friend had 30+ abnormalities out of the 40+ tests

that Dr. Shoemaker runs.

As far as Lyme doctors, my friendly highly recommends used Dr. Shoemaker's

research and protocol and sees him once a year, he's in MD. Dr. Shoemaker helped

her when NO one else could, his research s NOT to be ignored. She also

recommends Dr. Amy Derksen for heavy metals and food intolerances - she's in

Bellevue WA. She does phone consults and very much cheaper than Dr.

Klinghardt. Dr. Derksen did her internship under Dr. Dietrich Klinghardt,

Comprehensive Medical Center in Kirkland, WA. Some of his stuff is way out

there but another way out there doc got rid of my parasites fourteen years ago

when conventional medicine dismissed parasites altogether. FWIW, I believe Dr.

Klinghardt is the top alternative Lyme doctor in the USA.

Sorry for another long post, but I do hope the information helps. Keep up

searching for the cause of your issues!!!

To wellness,

~Bj

>

> Dear Friends,

>

> I've just received a response (3 months waiting!) from Dr. Rind. He had

> asked to see my thyroid labs, cortisol tests, and a list of prevailing

> symptoms.

> Right up front he told me that from the way my labs read it looks like I

> have Lyme's. (How in the world? Can you really tell that from thyroid labs?)

> I'm really trying not to freak out here!!! I've got enough on my " health

> plate " as it is, so I'm stuffing down the panic right now...

>

> Can anyone tell me if they have Lyme's, what the symptoms are, and how to go

> about getting diagosed? And is there a treatment?

> I'm in totally unfamiliar territory here. I don't get the

> chills/fever/parital facial paralysis/rashes or anything, and I thought

> these were tell-tale indicators of Lyme's. Guess I'm wrong.

>

> On the brink,

>

> Steph

>

August 30, 2010

I have Hashimotos, MCS, osteoprosis, Cancer 2008 and my DR Ardis Fisch in MA. (we work by phone) keeps saying that she thinks I have LYME also.I just took this test last week. It is supposed to be the newest and best on the market. I hope so as it was very expensive. Neuroscience My Lyme Immune- kit.So, we shall see.I understand about can we just stop coming up with more. I believe I have had Hashis all my life and that all my other disorders are related in one way or the other.I am 51 and some times feel 80. I am self employed and raised my son (25) on my own so sick or not I must go on.We are on this journey together.Pamiwww.pami.us

August 30, 2010

Hi Pami, if you don't mind me asking, how much was the Neuroscience test? I'm trying to get all the information together for my doc so he can hopefully send a waiver to my health insurance company.

Hello Bj. As always, you've been enormously helpful! You never have to apologize to me for the " novels " you write in response! Dr. Rind emailed me and actually recommended the MyLymeID test by Neuroscience over the Igenex test. To avoid a false negative on the Igenex test, it's imperative that the immune system is adequately supported. Reason being that the more chronic the illness is, the less antibody response it tends to have. That's just his recommendation though.

I'll definitely be researching Dr. Shoemaker's Lyme's testing protocol before doing anything about the testing. I want to be sure I get an accurate testing.

Thanks!

Hi Steph,

Lyme tests are notoriously inaccurate. The only lab that actually uses the strains of Lyme that are found in the various parts of the U.S. is Igenex ( http://igenex.com ) - the other labs typically use European strains. Also, the other labs in general don't report the values for all the specific bands. Some of the bands are Lyme specific (others can be due to other infections) - the CDC excludes the Lyme specific bands because there used to be a vaccination for Lyme, which is real idiocy since reasonable people would know whether or not the positive result was possibly due to being vaccinated.

Also, Lyme changes forms over time and the tests just CANNOT pick it up - the cystic form can be the most dangerous as that form gets into cartilage and Lyme is very difficult to eradicate then. Lyme bacteria have a 4+ week lifespan, so typically any antibiotic needs to be given for at least 30 days.

A friend had very little tolerance for the antibiotics early on because she was so toxic - the toxin load increases while on antibiotics since the antibiotics are killing the bugs so she got all the toxic debris. After being on the Shoemaker protocol for 9 months, her tolerance for antibiotics increased dramatically and then she was able to handle the 30 days without becoming almost totally debilitated.

Some patients just don't test positive – Dr. Shoemaker says that the bar for positive is fairly high to avoid false positives, so a sub-set of folks that are negative do have issues. He actually looks at six key factors in making his diagnosis - if 3 of 6 are positive, then he has a high level of certainty that toxins (from mold or Lyme or other bioxin producing organisms) are the cause. The 6 factors he considers (with 3 out of these 6 being hormonal) are:

1) Gene test

2) Hormones in the brain (MSH) - this controls all your hormones

3) Inflammatory marker (MMP9)

4) Disruption of pituitary hormones: TSH, ACTH, adrenal

5) Management of salt & Water (ADH/vasopression, osmolality) - ADH is the hormone that tells your kidneys to excrete fluids. If it's low, you pee all the time. If it's high, you often have high BP and bloating.

6) VCS test results (Visual Contrast Sensitivity (VCS) test)

This is really why most docs will not catch this because they would never consider that folks could have these hormonal disruptions without total failure of the glands/organs. All the codes and recommended labs for those tests are on his website: www.biotoxin.info/Lab_Tests

The thing about mold and Lyme is that since they both produce toxins, which trigger inflammation, exposure to one will often trigger the other. You can never totally eradicate the Lyme (our bodies actually have more cells that are non-human than we have human cells). So, if you have had Lyme and then get exposed to mold, a cascade of inflammatory reactions is triggered, which impacts the immune system and thus the Lyme will often surface again. Or, if you've had mold exposure and then get Lyme, your immune system is already in a state where it is incapable of handling the Lyme infection. And, this all has to do with genetic predisposition - 25% of the population has the genes that predispose being made ill due to the inability to recognize the mold toxins.

The good news is that these things can be treated with both conventional and alternative therapies. My friend had 30+ abnormalities out of the 40+ tests that Dr. Shoemaker runs.

As far as Lyme doctors, my friendly highly recommends used Dr. Shoemaker's research and protocol and sees him once a year, he's in MD. Dr. Shoemaker helped her when NO one else could, his research s NOT to be ignored. She also recommends Dr. Amy Derksen for heavy metals and food intolerances - she's in Bellevue WA. She does phone consults and very much cheaper than Dr. Klinghardt. Dr. Derksen did her internship under Dr. Dietrich Klinghardt, Comprehensive Medical Center in Kirkland, WA. Some of his stuff is way out there but another way out there doc got rid of my parasites fourteen years ago when conventional medicine dismissed parasites altogether. FWIW, I believe Dr. Klinghardt is the top alternative Lyme doctor in the USA.

Sorry for another long post, but I do hope the information helps. Keep up searching for the cause of your issues!!!

To wellness,

~Bj

>

> Dear Friends,

>

> I've just received a response (3 months waiting!) from Dr. Rind. He had

> asked to see my thyroid labs, cortisol tests, and a list of prevailing

> symptoms.

> Right up front he told me that from the way my labs read it looks like I

> have Lyme's. (How in the world? Can you really tell that from thyroid labs?)

> I'm really trying not to freak out here!!! I've got enough on my " health

> plate " as it is, so I'm stuffing down the panic right now...

>

> Can anyone tell me if they have Lyme's, what the symptoms are, and how to go

> about getting diagosed? And is there a treatment?

> I'm in totally unfamiliar territory here. I don't get the

> chills/fever/parital facial paralysis/rashes or anything, and I thought

> these were tell-tale indicators of Lyme's. Guess I'm wrong.

>

> On the brink,

>

> Steph

>

August 31, 2010

Hey Steph,

Dr. Shoemaker's specialty is POST or lingering Lyme disease and mold, other biotoxins and neurotoxins.

If you were recently exposed using the C3a/C4a and CD57 is probably a good idea. If it has been over four months most actual Lyme blood tests will probably NOT be beneficial. The friend that Dr. Shoemaker helped went from doctor to doctor and had testing at Neuroscience and Igenex before seeing Dr. Shoemaker and then doing his testing. She was very ill for over five years.

According to Dr. Shoemaker, both C3a and C4a are markers of early chronic Lyme's and will usually return to normal levels as illness improves. You need the C3a/C4a testing done at LabCorp with specific instructions to do RIA (not an ELISA). http://www.endfatigue.com/health_articles_f-n/Lyme_disease-hope_for_newer_testing.html

CD57 can rule-in or rule-out Lyme. If you have low CD57, counts between 20 and 60 are common for Chronic Lymes, 60-360 is normal. Testing below 60 indicates you are dealing with Lyme. Nothing else is known to suppress the CD57 NK subset. Here's another good summary of the CD57 test and its importance. Make sure to do the HNK1 (CD57) Panel at LabCorp. Note: if this test is normal you are likely dealing with co-infections. not Lymes. http://www.newchronicfatigue.info/wp-content/uploads/2007/07/cd57.pdf

Dr. Shoemaker uses the LabCorp test: HLA DR by PCR. This is a gene test. Dr. Shoemaker has done extensive research on HLA genotypes. You can have a hampered ability to create antibodies to biotoxins and this test will show that. It is likely one big reason many people are stuck bad health and multiple Dxs.

Depending upon your DRB1 and DRB3, DRB4 and DRB5 results, you could have a genotype that predisposes you to be made very ill due to exposure to any kind of toxin - mold, heavy metals, toxins produced by infections - i.e., bacterial, fungal, viral and parasitic infections all result in additional biotoxins in your body. If you have a DRB1 of 4 then you have that genotype. DRB4 has been isolated in Lymes patients. Essentially, your body does not recognize the toxins, so it doesn't remove them. This website has lots of good information on this. www.biotoxin.info

Since Dr. Shoemaker's research focuses on biotoxin illnesses from Lyme, mold and pfisteria, but he acknowledges that other infections and heavy metals also add to the toxic burden that triggers a chronic inflammatory reaction. Normal lab tests will not pick this up. He runs this panel of tests and uses his own set of ranges to determine whether the labs are normal. http://www.biotoxin.info/Lab_Tests

He has had Lyme himself multiple times and exposed himself on purpose one time so he could test to see how long it takes for the labs to become abnormal. Some of the inflammatory markers go up within hours of biotoxin exposure if you have the genetic predisposition.

There is another website that has an online test to take to see if you might have this issue: www.chronicneurotoxins.com Biotoxins/Neurotoxins are low molecular weight, fat soluble toxins, sequestered in the fat tissues of the body. Rather than being eliminated normally, they are reabsorbed and continue to be accumulated and circulated in the body. They impact the nervous system, the endocrine system and the immune system. For the cost of $15 the VCS (Visual Contrast Sensitivity) test was helpful to my son. I initially thought this was crazy and it took me awhile to decide that there might be something behind this especially after finding some Lyme/mold patients that had taken it. The theory behind the test is that the toxins damage the optic nerve and thus people have problems detecting contrast (i. e. seeing curbs when driving, being able to detect shades of gray, etc.). My son has failed this test several times.

After 2 months on Dr. Shoemaker's protocol he is greatly improving. He was exposed to both Lymes and mold at one of his friend's house (which unfortunately he can never revisit) within a few weeks early last spring and it took five trips to the pediatrician to get him an antibiotic and he then got asthma and pneumonia and was getting sicker by the day. My friend convinced me to bypass traditional treatment and go straight to Dr. Shoemaker. Anyway, my friend and my son are proof that Dr. Shoemaker's protocol works. We did the seven tests that Dr. Shoemaker wanted and the pediatrician (with lots of my research and begging) consulted and followed Dr. Shoemaker's instructions. And we've done additional testing for mold, too. And have had to get rid of the carpeting, drapes, now have little upholestered furniture, hospital grade HEPA air filters, sadly our pets can no longer be indoors, he is on a limited diet among other things for his health.

He stayed on the antibiotics until after the CD57 shot up to 200. He is on a maintenance dose for a few more months of Cholestyramine, which acts like a sponge, and it used to be to pull cholesterol out of people's bodies. The side effects are lowered cholesterol, constipation and occasional acid reflex. I make sure he gets plenty of fiber. Also, we were told that GABA and beta sitosterol help with multiple sensitivities while on this drug eliminating the biotoxins that thrive on fat tissue. Also, there was specific instructions on how much and when to take these drugs. We tried a short cut and my son reacted like Dr. S said he would so we had to start over. Dr. Shoemaker has written a book on this subject titled 'Desperation Medicine'.

I truly believe had we chosen the Neuroscience and Igenex route he would still be a VERY ILL boy.

To finding wellness, ~Bj

> > >> >> > So the Neuroscience test is covered by INS for about $800 (crazy) I am not> > sure what it will actually end up costing me. I have spent so much this year> > trying to feel better. But, not finished my deduct. I pay $450 per month and> > have a deduct of $5 to $10 k depending on provider. OOOOH the system is just> > so broken. I have had cancer so I have not option but to try to keep up with> > my ins payments.> >> > I use labcorp to draw the blood and if you can believe it we are now on a> > first name basis. I told them I use them for blood letting cause I come so> > often. I bring them test they have never seen before. LOL> >> > I came up neg on the cheaper regular lyme test but my dr said that is usual> > and she didn't trust them but we were trying to save money.> >> > any other questions just let me know> >> > PAMI> >> > www.pami.us> > > >>

September 1, 2010

Steph, I have no idea which tests they were as I don't have the results in my

hand from the dr yet.

BJ, oh my I am so confused.

tks

PAMI

September 1, 2010

Hi Pami,

I sympathize with you. This is all very complicated. In certain people biotoxins leave the blood and disrupt the muscles, brain and other organs -anywhere there is fat tissue. I didn't want my son suffering needlessly for years possibly a lifetime after the antibiotics were done. He has the genotype that predisposes him to any type of toxin. He also has slightly elevated TPO, asthma, pneumonia, chemical sensitivities and so on. Mainstream medicine's answer is to give drugs for pain and depression instead of actually finding the reason for the pain. Some of these drugs cause conditions to worsen in susceptible people. For example, for pain immunologists often prescribe Cyclosporin, which is a drug made from fungus and has *hidden dangers* with the potential of mold toxin invasion and can cause extreme symptoms in susceptible people.

I kept this article http://www.psychiatrictimes.com/display/article/10168/55056 that describes a woman who had Lymes for eight years. I would be interested to see if the antibiotic actually got rid of her Lymes for GOOD. My friend's Lymes always came back after a few months (once it was seven months) until she used Cholestyramine and followed Dr. Shoemaker's protocol. If you have any questions let me know.

I hope this is helpful to you,~Bj

Steph,

Here is a link to Neuroscience's Lyme testinghttps://www.neurorelief.com/index.php?option=com_content & task=view & id=622 & Itemid=48#OspC#OspC

>> Steph, I have no idea which tests they were as I don't have the results in my hand from the dr yet.> > BJ, oh my I am so confused.> > tks> > PAMI>

September 1, 2010

Hey there Bj,

Your poor son! You have really been through a lot too! I am so relieved he is doing better though. And your friend! You've given me much hope! If I can say this without sounding callous, I am glad there is " someone " out there who has already " been there " and can help people like me! The research for multiple conditions often overwhelms me, so I'm so grateful for your thoroughness and research.

I got some more questions for you--I'm hoping you'll bear with me!

Honestly, I have NO IDEA if I've been exposed/bitten recently. But I went to college in Michigan (deer country!) and visit my sister a couple times a year who lives in Michigan on a farm. I do recall getting a tick when I was 18 or so, but it was only attached for minutes--not hours, and I had no symptoms afterwards...but I wonder???

Since I don't know, I'm assuming I'll only need the seven following tests (if I'm understanding you correctly):

..CD57 by Labcorp

..C3A and C4A (to detect if i've been exposed in recent months)

..Labcorp test HLA DR by PCR (I'm assuming this includes the DRB1, 3, 4, and 5?)

Is that all? Or is there anything else I should test?

Dr. Rind mentioned getting the vitamin D hydroxy 25 and dihydroxy 1.25 done as well. Is there any basis to this?

Should I just hold off on the Neuroscience/Igenex tests until I know for certain that the CD57 tells me I have Lyme's??? Or just forgo them altogether???

And there's no chance my gut infestation could cause any of my results to be misinterpreted?

Ah, my poor bank account! I'm out so much $$$ this year from testing/meds/supplements! But I ought not complain--I'll be so grateful to have answers, no matter the outcome! God's in control here!

Thanks ever so much, and I'll be reading more on your posted links this evening.

Blessings,

Steph

P.S. Yeah, I saw the visual test Dr. Shoemaker has on his website. I'm so glad you mentioned it! I'm always sooo skeptical about stuff like that...

Hey Steph,

Dr. Shoemaker's specialty is POST or lingering Lyme disease and mold, other biotoxins and neurotoxins.

If you were recently exposed using the C3a/C4a and CD57 is probably a good idea. If it has been over four months most actual Lyme blood tests will probably NOT be beneficial. The friend that Dr. Shoemaker helped went from doctor to doctor and had testing at Neuroscience and Igenex before seeing Dr. Shoemaker and then doing his testing. She was very ill for over five years.

According to Dr. Shoemaker, both C3a and C4a are markers of early chronic Lyme's and will usually return to normal levels as illness improves. You need the C3a/C4a testing done at LabCorp with specific instructions to do RIA (not an ELISA).

http://www.endfatigue.com/health_articles_f-n/Lyme_disease-hope_for_newer_testing.html

CD57 can rule-in or rule-out Lyme. If you have low CD57, counts between 20 and 60 are common for Chronic Lymes, 60-360 is normal. Testing below 60 indicates you are dealing with Lyme. Nothing else is known to suppress the CD57 NK subset. Here's another good summary of the CD57 test and its importance. Make sure to do the HNK1 (CD57) Panel at LabCorp. Note: if this test is normal you are likely dealing with co-infections. not Lymes.

http://www.newchronicfatigue.info/wp-content/uploads/2007/07/cd57.pdf