Lyme Disease & Weight Gain

While many with Lyme disease lose significant amounts of weight, many others with Lyme disease gain weight.  The jury is still out in the medical world why precisely this happens, although I have read a number of hypothesizes that others have written to try to explain the weight gain.  Herein, I will throw out a few other hypothesizes…if for no other reason than that they haven’t been mentioned (yet)…and I think they bear consideration.

 

On first glance, the thyroid and RT3 connection seem to make sense.  However, I have had my thyroid removed and do have an RT3 issue, but even when this is corrected there is still a slow steady weight gain.  This is true even when I have too much thyroid hormone (hyperthyroid), so much so that I am not convinced that it is not purely a thyroid issue. 

 

That said, YES, the thyroid can become involved in the pathology of Lyme disease.  However, the pathway in which it does I call into question.  There is a lot of who-ha out there on the internet about the thyroid/adrenal connection…there is no biological connection between the function of the two (save for the one way they never tell you and probably never even consider).  In other words, if your adrenals are failing that will not, by itself, cause your thyroid to fail…or if your thyroid is failing it will not cause your adrenals to go bad.  They are not dependent on each other and operating independently of each other.  That said, they ARE connected through that which controls both of them…the hypothalamus and pituitary.  Therefore, IF you have a true (evidenced by lab results) problem with both…it is likely that you actually have a pituitary/hypothalamic issue than an issue with either gland.

 

Which brings me to hypothesis number 1…that Lyme affects the hypothalamus.  Oh wait, we already know it does.  The hypothalamus is that which determines the set point of many operations within your body.  For example, it decides if you should be warmer or colder.  Many with Lyme disease are notoriously cold all the time…and THIS is the hypothalamus at work.  The already existing hypothesis is that Lyme spirochetes, in their effort to turn down your immune response, target your hypothalamus to keep your body temperature on the cool side…why?  Well, because in order to thrive, your white blood cells (immune response) need it warm…which is why, when you are sick, you get a fever (also thanks to your dear ol’ hypothalamus).

 

Hypothesis number 2…the creation of fat cells has long been hypothesized to be a way to bind up toxins.  However, I have yet to see it proven (via lab results) that fat cells contain anything other than the three molecules that make up fat.  It is possible, that given the amount of toxins that seem to plague some Lyme sufferers (and their constantly always wanting to focus on detoxing), that this is a worthy contender in the arena of why Lyme sufferers gain weight. 

 

I do know that many with Lyme, in particular those who seem to get worse on treatment and struggle with it for years, likely have a genetic component that comes into play when they start treating their Lyme.  This seems to be the case whether they treat with antibiotics or alternative remedies.  In my own quest to understand just how and why this is I have come to find that there is some debate whether the genetic defects were there since birth, or whether in the course of being sick and in the replication of one’s genetic code, mistakes were made.  By way of reference, each time cells replicate, they are less perfect than the original.  What they do seem to agree on is that once you are sick, the defects start to play a more prominent role.  Meaning, that while a defect may not have posed an issue before, being sick it is now and issue. 

 

The problem with this is that if, for example, you have a genetic defect in detoxing toxins…then no amount of “detox” methodology will work because your body is not processing things to a point where the body could detox them.  No one knows (yet) how to get around this and the likely hypothesis is that there is no need to, but rather instead simply focus on overcoming the other (not detox related) defects and as your body’s synthesis cycles begin working again you will detox as per the body should.

 

That said, a build up of things that the body needs to rid itself of…or an inability to use the things it has…could perhaps cause the creation of fat to get it out of our circulation and lock it away.

 

I also agree with the hypothesis that slower or delayed digestion causing food to sit longer in the intestines could cause an increase in absorption.  However, that will have to contend with the conflicting issue that fat does not have pieces of broccoli at the center, but are rather just three molecules.  Indeed, the toxin binding hypothesis will have to contend with that conflict as well before we could ever hope to know for sure.

 

Another possibility is all those probiotics people with Lyme are taking.  Probiotics (good bacteria) are what break down the food we eat into basic molecules so we can absorb it.  The more food that is broken down, the more one absorbs…or so the hypothesis goes.  Again, show me that fat ever has anything other than its three molecules.

 

Lastly, something I have said for years, fat isn’t from eating…or exercise…fat is a symptom that something has gone wrong in your body.  There is a lot of evidence out there to support this…such as 100% of hospital diet and exercise programs ultimately fail 100% of the time.  Closer to home, people with Lyme…clearly sick, things in their body clearly becoming unbalanced, and gaining weight despite, as often is the case, eating less.  Furthermore, healthy/trim people can eat a lot of unhealthy food (like pizza) and never gain a pound.  Their body simply excretes it as it should.  However, someone dealing with a weight issue has only to smell some pizza and they have gained 3lbs (no joke).  The body synthesizes fat…meaning it makes it from the three molecular building blocks.  As much as I think that the answer to why people gain weight and, more importantly, how to help them lose it will be found to be pretty simply and straight forward…they haven’t seemed to have figured it out (yet).

 

In the end, the most logical place to attribute weight gain in Lyme disease is, in my opinion, the hypothalamus. 

Dr. Kharrazian's Immune System Primer

From the book, Why Do I Still Have Thyroid Symptoms When My Lab Tests Are Normal?

By Dr. Datis Kharrazia

http://www.amazon.com/Still-Thyroid-Symptoms-Tests-Normal/dp/0985690402

 

Although the book is written with emphasis on thyroid auto-immune issues, this book is a most excellent introduction to the immune system and auto-immunity.  Nothing that I quote here, however, can do the complex systems involved justice because these are just bits and pieces of bigger picture that really needs to be understood in its entirety in order to to understand how these bits and pieces fit into it.  I highly advise anyone with thyroid issues, with immune system issues or needs, or who is facing auto-immune issues get and read this book.  It is in our library system, however, it is one of those books that you may find yourself really wanting to underline and highlight because there is just so much in this book.  Anyways, enough said...

 

Notes From The Book On Supporting/Building One’s Immune System:

 

Dr. Kharrazian likens the function of the immune system to the metaphor of a burglar breaking into your house.

 

1.  The first aspect of one’s immune system are the barriers (walls of the house): namely your skin and the lining of your intestines, lungs, and brain…and he mentions holes in the barriers.

 

2.  When these have holes in them, what gets in (the burglar) are “antigens” and “haptens."

 

3.  The first responders on the scene (security guards with no guns) are the “macrophages,” Greek for “big eater,” are stationed in body tissue always on the lookout for intruders.  The macrophages envelope the invader creating an “Antigen Presenting Cell” or “APC” that acts like a burglar alarm.

 

4.  The first responders to the call for help are “T-Helper Cells” who organize the attack.  The T-helper cells send messengers to bring the elite police force the “Natural Killer Cells” and “Cytotoxic T-Cells” to swarm the intruder and destroy it.

 

5.  Back at the police station (sergeants), “T-Regulatory Cells” monitor the scene to ensure there are enough T-helper cells and “T-Suppressor Cells” which stop the immune reaction once the intruder is disarmed.

 

6.  Since the immune system wants to take no chances of a second attack, it assumes that every burglar is a member of organized crime.  T-helper cells also fetch the detectives, “B-Cell Antibodies,” which attach to the intruder and put all its information in a memory bank which will allow the natural killer cells and cytotoxic T-cells to become increasingly efficient at destroying the burglar if it ever comes around again.

 

A breakdown can happen in any of these areas, or combination areas, of the immune system.  Since each aspect of our immune system requires different support, it is therefore vital to first figure out where the breakdown is occurring.

 

Some of the possible scenarios are:

 

1.  Some people do not make enough T-suppressor cells so the immune system’s attack goes on and on and innocent bystanders can often be mistaken for the enemy.

 

2.  Some people make too much “Interleukin 2” or “IL-2,” which is a chemical messenger that deploys the natural killer cells and cytotoxic T-cells.  When these are in over abundance, like in the first scenario, innocent tissue is at risk.

 

3.  Some people make too much “Interleukin 4” or “IL-4,” a chemical messenger that deploys B-cells.  An overabundance of B-cells just looking for intruders may mistakenly tag innocent bystanders.

 

Then there are other causes of immune system breakdowns, such as:

 

1.  People eating high carbohydrate diets which affects blood sugar, causing insulin surges that stimulate overproduction of B-cells.

 

2.  A parasitic infection and/or multiple food intolerances drive up IL-4, causing an overproduction of B-cells.

 

3.  A chronic viral infection drives up IL-2 causing an overproduction of natural killer cells and cytotoxic T-cells.

 

So it could be systemic, or idiopathic, meaning for some unknown reason the body is doing this, or it could be driven by something we ourselves are doing…or, not-doing, as the case may be.  So, to ask the question, is it an actual auto-immune disease or is it something that we are doing causing something that looks like an auto-immune disease?

 

Auto-immune is “not based on the tissue being attacked, but on how the immune system is behaving.”

 

“It is not always possible to pinpoint what exactly triggers a person’s genes to turn on an auto-immune disease.”  And…“Once the gene for auto-immune disease has been turned on, it cannot be turned off.”

 

“The trick,” he says, “is to discover which side of your immune system is more active – the side that deploys natural killer cells and cytotoxic T-cells, or the side that deploys B-cell antibodies.”  If you are “producing too many natural killer cells and cytotoxic T-cells […] then you are TH-1 dominant.”  If you are “producing too many B-cells […] you are TH-2 dominant.”

 

TH = T-Helper Cells

Cytokines are like hormones – they are chemical messengers that make things happen.

 

You “determine whether someone is TH-1 or TH-2 dominant by measuring cytokines.”

 

“Also, it is important to note that not all auto-immune diseases can be traced to a TH-1 or TH-2 dominance; other possible causes include immune defects and deficiencies.  In other words, no cookbook recipes exist for managing an auto-immune disease.  Instead, a basic understanding of immunology is key.”

 

The TH-1 Cytokines include:

- IL-2

- IL-12

- TNFa (tumor necrosis factor alpha)

- Interferon

 

The TH-2 Cytokines include:

- IL-4

- IL-13

- IL-10

 

“When addressing auto-immune disease, the goal is to restore balance to the immune system.”

 

Beyond all the various things he addresses in his patients, he states:

 

STEP ONE:  SUPPORT THE T-REGULATORY CELLS

 

- Emulsified Vitamin D (cholecalciferol).  Emulsification is important so that someone with poor digestion can absorb the nutrient.  It also prevents toxicity at higher doses.  He does not recommend Cod Liver Oil, stating:  “Cod liver oil, although high in vitamin D and possessing necessary cofactors for its absorption, does not provide enough of the vitamin to modulate an auto-immune disease.”  He also states, “The EPA and DHA in fish oil also supports the T-regulatory cells.  (Taken in large amounts, cod liver oil delivers too much EPA and DHA, which has blood thinning properties).”  He goes on to state, “Vitamin D supplementation is important for another reason:  Studies have shown that more than 90 percent of people with autoimmune thyroid disease have a genetic defect affecting their ability to process vitamin D.  Therefore, they need higher amounts of vitamin D to maintain health.  This can be the case even if a blood test shows sufficient vitamin D: The defect is at the cellular receptor site, so not enough vitamin D can gain entry into the cells.”

 

- Glutathione Cream.  “Glutathione works best when delivered intravenously or absorbed through the skin.”

 

STEP TWO:  BALANCE THE TH-1 AND TH-2

 

“I do this by stimulating the side of the immune system that is not dominant.”

 

Compounds That Stimulate TH-1

(NOTE: “These dampen a TH-2 dominance and will worsen the auto-immune condition of a TH-1 dominant person.”):

- Astragalus

- Echinacea

- Beta-Glucan Mushroom

- Glycyrrhiza (from licorice)

- Melissa Officinalis (Lemon Balm)

 

Compounds That Stimulate TH-2

(NOTE: “These dampen a TH-1 dominance and will worsen the auto-immune condition of a TH-2 dominant person.”):

- Caffine

- Green Tea Extract

- Grape Seed Extract

- Pine Bark Extract

- White Willow Bark

- Lycopene

- Resveratrol

- Pycnogenol

 

Compounds That Modulate BOTH TH-1 and TH-2

- Probiotics

- Vitamin A

- Vitamin E

- Colostrum

 

Compounds That Dampen IL-1 Activating BOTH TH-1 and TH-2

- Boswellia

- Pancreatic Enzymes

- Tumeric (Curcumin)

 

 

“I always use immunological lab tests to determine whether a person is TH-1 or TH-2 dominant so that I know how to properly tame and support her overactive and poorly regulated immune system.”

 

^ I think this is important, and am a bit irritated that a number of things on his lists are regular parts of Lyme protocols (hence, why I cannot express deeply enough the importance of first understanding the biological pathways you are working with)…and this is also, no doubt, a big part of the answer why some protocols work for some and not others.  It also suggests a good argument for antibiotic-only treatments because in cases of auto-immune issues it is not tripping any of the triggers (or not in the same way).

 

He goes on to say, “How do I know if the protocol for immune modulation is working?  Monitoring symptoms is important of course, but I also use blood tests to monitor cytokines and T and B cell populations along the way, too.  They should begin to reach normal levels and antibody test should become negative.  That doesn’t mean that the condition is cured, but it is dormant.”

 

“NOTE: A challenge test should only be done under the supervision of a licensed health care professional.  Also, some people develop auto-immune reactions to brain and nerve tissue […]. It is important to NOT use this protocol when destruction of nerve or brain tissue is at risk.”

 

“Quite often I will find that a specific antigen – a food, mold, bacteria, chronic virus, or parasite – is provoking the autoimmune attack.”

 

“People can also develop an immune response to haptens, which are environmental chemicals or heavy metals that provoke an immune response.  It is important to note that not everyone will develop an autoimmune response to antigens or hapten.  For instance, we all have varying degrees of heavy metal toxicity, but not everyone’s immune system will mount an attack against mercury, lead, cadmium, or other metals.”

 

Antigen = organic compoundsHapten = inorganic compounds

^ He tends to use “antigen” to refer to both.

 

“When an antigen is to blame for stimulating an autoimmune attack, an immune panel of tests may show both the TH-1 and TH-2 cytokine are high and T-suppressor cells are low.  This indicates that the body is currently in a heated battle against something the immune system recognizes as an enemy.”

 

“Another essential immune panel measures the ratio of T-helper cells to T-suppressor cells.  This is the CD4/CD8 test (CD4 measures T-helper cells and CD8 measures T-suppressor cells).”

 

“Another clue that a hapten may be responsible for driving an autoimmune disease is when a person’s response to both TH-1 and TH-2 stimulators makes them feel worse.”

 

Restoring the Immune Barriers

 

"Sometimes the active antigen infection can be due to a heavy metal such as mercury.  Although most people have some degree of mercury in their bodies, not everyone’s immune system will respond as if it is an infectious agent.  If mercury or other environmental compounds are creating an autoimmune response, this can be verified by antibody tests against that particular compound. If the test comes back positive, removing the compound is one way to address Hashimoto’s.  A recent study, for instance, looked at the impact of dental amalgams on Hashimoto’s disease in people having an immune response to mercury.  The researchers concluded that the removal of mercury-containing dental amalgams contributed to the successful management of those with the thyroid disorder.”

 

^ I think it is important to note, that there is a simple test to see if your mercury fillings are affecting you.  If they are, then that would be your answer on removing them…and if not, it is unlikely that they are having anything to do with why you are not improving.  It is important, I think, to note the pathway of things like mercury.  When the body has too much it stores it safely away in the body so that it can no longer hurt you.  Some people feel that they need to go to great lengths to try to get the stored toxins out of the body, but doing so can do more harm than good.  Anyways, he goes on to state:

 

“In other cases, however, liberating stored mercury with methods like chelation can exacerbate an autoimmune response.  A good example involves autism.  Many doctors peg autism on heavy metal toxicity and prescribe chelation.  I, on the other hand, think that an immune response to mercury can trigger an autoimmune attack on nerve or brain tissue, causing autism.  Chelation releases stored mercury into the system and can exacerbate an autoimmune autistic condition, causing more tissue death and a worsening of symptoms.”  Later on he says, “It is better to live in peace with mercury than permanently destroy brain tissue in an attempt to eliminate it.”

Lyme & Low Body Temp...the Hypothalamus

Many people who have Lyme Disease, or other bacterial or parasitic infection, also often have lower than normal body temperatures.  Usually it is only one degree lower than normal, but can also sometimes be two degrees lower.
 
Much is said on the internet about the causes and reasons for low body temperatures.  For many years it was purported to be attributed to adrenal insufficiency.  Then, as the adrenal glands came to mistakenly become linked to thyroid insufficiency, the low body temperatures were also then mistakenly attributed to low thyroid.  While it is true, that often times people with adrenal or thyroid issues will also have low body temperatures, low body temperatures do not indicate any failing on the part of the adrenal or thyroid glands. Indeed, the only connection between the adrenal glands and the thyroid gland is through the pituitary gland and then through the hypothalamus.  If someone has issues with both their thyroid and adrenals, then it is likely that their true issue lays with either the pituitary or the hypothalamus.

 

That said, chronically lower than normal body temperatures indicate an issue with the hypothalamus.

 

Below are some excerpts (not written by me) regarding a possible cause for the chronic low body temps that are often experienced people with Lyme Disease.  

  

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HYPOTHALAMUS

 

I - INTRODUCTION

 

Hypothalamus, part of the brain, important in regulating the internal activities of the body. Although the hypothalamus constitutes less than 1 percent of the total volume of the brain, it has an important influence on many of the body's functions, including sexual behavior, emotions, hormone production, and the autonomic nervous system.

 

II - ANATOMY

 

The human hypothalamus weighs about 4 g (0.14 oz) and is found behind the eyes, directly below the brain's thalamus and above the pituitary gland. The hypothalamus is divided into several distinct nuclei, that is, aggregates of nerve cell bodies. These nerves connect the brain with the hypothalamus and the hypothalamus to virtually all regions of the nervous system. The hypothalamus also receives nerve inputs from the erogenous zones (the genitalia and nipples), the viscera (internal organs), and the limbic system (concerned with motivation and drive).

 

III - FUNCTION

 

The hypothalamus controls a wide range of functions. It directs the “fight or flight” response of the autonomic nervous system. Fear or excitement causes signals to travel to the hypothalamus, which triggers a rapid heartbeat, faster breathing, widening of the pupils, and increased blood flow. The hypothalamus monitors blood glucose levels and the body's water content to regulate appetite for food or drink. It regulates sleep and sexual behavior.

 

The hypothalamus plays an important role in regulating feeding behavior. Experiments performed on rats demonstrate that if the middle of the hypothalamus is damaged, the rat overeats and becomes obese; damage in the lower part causes the rat to refuse to eat and starve. The role of the human hypothalamus is less important than in rodents because conscious decisions play a greater part in human processes such as eating and drinking. For example, it has been shown that custom and habit have a greater influence over the amount eaten than actual hunger.

 

The hypothalamus has an effect on the cardiovascular system and the rest of the autonomic nervous system. This effect is vital for the coordination of mind and body; for example, it is responsible for the physical changes required before exercise.

 

The hypothalamus can be regarded as the thermostat controlling the temperature of the body. It initiates shivering and contraction or expansion of blood vessels. The hypothalamus triggers behaviors such as putting on or removing clothes, turning on the heat, or moving into the shade.

 

IV - ENDOCRINE FUNCTIONS OF THE HYPOTHALAMUS

 

The hypothalamus is responsible for controlling the hormones released from the pituitary gland. Two of these hormones are oxytocin and vasopressin (also called antidiuretic hormone or ADH).

 

Oxytocin plays a role in uterine contractions during childbirth. It also has a role in starting and maintaining the birth process. Breastfeeding also triggers the secretion of oxytocin via a nervous pathway that connects the nipple and the hypothalamus; oxytocin stimulates the flow of milk from the breast to the infant. Oxytocin secretion can also be caused by the sound of a baby crying—an example of the connections the hypothalamus has with the other parts of the brain.

 

The hormone vasopressin acts on the kidneys to increase reabsorption of water from urine, thereby maintaining the water level within the body. When the hypothalamus senses that blood concentration has increased, it stimulates the pituitary gland to produce more vasopressin. Likewise, if blood concentration is too dilute, the hypothalamus instructs the pituitary gland to release less vasopressin.

 

A part of the hypothalamus is involved in the regulation of circadian rhythms in the body. These rhythms are caused by hormone fluctuations in the bloodstream that occur during each 24-hour period, usually correlating with periods of light and darkness. These fluctuations ensure that the appropriate hormones are elevated when most needed in the body. Cortisol hormone levels, for example, routinely rise in the morning just before waking. This increases blood glucose levels to counterbalance the potentially harmful effects of not eating or drinking while asleep overnight.

 

V - HYPOTHALAMUS DISORDERS

 

Damage to the hypothalamus can result from surgery, trauma (such as accident or stroke), degeneration due to old age or disease, or a tumor. The results of damage can be varied and depend on the areas of the hypothalamus involved.

 

Diabetes insipidus can be caused by hypothalamic damage, or by damage to the hypothalamic-pituitary tract. This disease reduces vasopressin production, resulting in large volumes of urine being produced at all times.

 

Other hypothalamic disorders can include sexual abnormalities (such as premature puberty), psychic disturbances, obesity, anorexia, temperature regulation disorders, sleep disorders, and disruption of normal circadian rhythms.

 

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The hypothalamus in the brain has a thermostatic mechanism which controls body temperature. During fever or higher temperatures, a protein called pyrogen is generated. This increases the synthesis of a compound called prostaglandin in the hypothalamus, raising its temperature set point.

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Low Body Temperature Increases Lifespan

It was long theorised that low body temperature may prolong life. On November 2006, a team of scientists from the Scripps Research Institute reported that transgenic mice which had body temperature 0.3-0.5 C lower than normal mice (due to overexpressing the uncoupling protein 2 in hypocretin neurons (Hcrt-UCP2), which elevated hypothalamic temperature, thus forcing the hypothalamus to lower body temperature) indeed lived longer than normal mice. The lifespan was 12% longer for males and 20% longer for females. Mice were allowed to eat as much as they wanted.[33][34][35] The effects of such a genetic change in body temperature on longevity is harder to study in humans. The UCP2 genetic alleles seen in humans so far are associated with obesity[36]

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I wonder, from that last excerpt, whether it is possible that our bodies did this as an effort to help us to survive. 
 
Later on in conversations someone mentioned the possibility that, due to Lyme and other parasites preferring lower temperatures, it is possible that Lyme specifically causes inflammation in the hypothalamus in order to lower our body temp and make our bodies more hospitable for them.

Welcome To Lyme-Land

...Also Known As Dante’s Eighth Layer of Hell

 

What Is All The Controversy About Anyways...?

And, Can't We All Just Get Along?

 

Never have I seen more passionate, embroiled, confused and confusing, people than you find in Lyme-Land. When you first get slapped with your Lyme diagnosis, unlike being slapped with any other diagnosis, you are not afforded even a mili-second to wrap your head around what your doctor is saying, what it will mean to you, your life, and your loved ones...instead you are whisked off, hurry scurry, pell mell, tumble-bumble, into the whiz-bang world of the most bizarre controversy that will leave your head spinning...and just when you start to get that the lunatics really are running the asylum, you begin to realize that no one in this quagmire even makes sense anymore. And as you stand there stunned by the utter weirdness of it all, you wonder if you have just arrived in Dante’s Eight Layer of Hell...and a voice calls out from behind the din, “Welcome to Lyme Disease.” Immediately followed by nonsensical, “the white zone is for loading and unloading only,” “clean up in isle two,” and a lot of other words that fade back into the overwhelming din.

 

And so just what are all these passionate people fighting over? Wonderful new treatments? How long to test before taking them to market? What to tell the public? Sadly, no, no...and, no. As if you were not gob-stopped already, grab your jaw so it doesn’t hit the ground, they are fighting over what to call it...because, apparently, for whatever reason “Lyme Disease” wasn’t working for them. For myself, however, I am happy just calling it Lyme Disease...it makes sense, it’s simple, and it stretches to cover all the various symptoms, treatments, and issues that make up the disease. But, who am I to say, after all I just arrived here in this crazy mad Lyme-world?!

 

The first order of business, when you are being diagnosed with Lyme Disease is to determine what stage it is in...sort of like cancer. In the early stage, in the first few days surrounding the tick bite when it is either infecting your skin or in your blood stream, it is easy to treat...4-6 weeks of antibiotics are believed to kill the buggers. However, there will always be someone who stands up and says that they still have symptoms...so, lets just say that most can be treated that way in the early stage and can walk away pretty much unscathed from this layer of hell.

 

When the Lyme bacteria (they are still calling it that, bacteria, but at this point no one really knows even what the f’ it is which is another part of the problem), anyways, when the Lyme bacteria disseminates...in other words, starts to invade other tissues, it is simply called “Disseminated Lyme Disease”...that is pretty simple. This is the second stage. However, there is not a lot of talk about this stage because once it has disseminated...the truth is that it has gone too far and you are in the same boat as the third stagers...sowwy.

 

The notorious third stage, and the last stage that they have identified (so far), is what they say it is when it has traveled deep within organs, joints, your brain and central nervous system...it is simply called “Late Stage Lyme Disease.” Adding to the confusion, when it affects your central nervous system, they call it “Neurological Lyme Disease” and in the joints they call it “Lyme Arthritis” although this tends to piss off Rheumatologists for some odd reason no one has been able to explain (yet)...but my guess is because Lyme Arthritis does not always include noticeable redness or swelling and the “tis” part of words like “arthritis” means swelling. Although that hardly warrants them getting their undies all in a knot the way they do, but who knows maybe they all go to undie knotting seminars that we don't know about.  Anyways, there is way too much hostility over what to call things.

 

So someone pissed them off (the Rheumatologists), and they are not the only ones...doctors of every kind just completely weird out when it comes to a patient with Lyme Disease. And just sitting in their office is enough to totally discombobulate them...and you will have ringside seat to watch the show as they go completely bonkers and become very angry, mean, and downright rude...my only guess is that maybe they have been telling themselves that Lyme Disease does not really exist and then their self-induced delusion is somehow shattered by your existence and in their complete and total break from reality all they seem to be able to do is react to that with a rage that puts road rage to shame...if you had brought your poodle to the office visit who knows what would have happened?! If you happen to be the Lyme patient in the doctors office while they are contorting themselves like that, you are probably going, “WTF?!” And I suppose it is the mere shock of it all that stuns most Lyme patients into quietly “exiting stage left” while expressions of, “is he/she (the doctor) really that crazy?” dance across their faces...and count themselves lucky to have survived such a medical meltdown.

 

Just as you have survived all that, and begin to put the trip to Bizzaro’s Doctor-Land behind you, you are struck with the fear all Lyme patients unfortunately have to face at one point or another, as you wonder, “how in the world will I ever get someone to help me?”

 

And if you are like most Lyme patients, and I know I am, you will probably make what will seem like the second biggest mistake of your life and query the internet for more information...and woowee, if you thought poorly acting doctors were a blast to your sense of the world, when you get to the internet it is with even more confusion. I have been staring at it for months now, and I am utterly convinced that it is designed to keep you perpetually confused and in a mental-zombie-like state...and there are, of course, the feeders lining the perimeter waiting to feed off the mess of Lyme patients (that you are now one of) just trying to get a grip of what the heck is going on. They will sell you this crazy idea, and that 10 bottles of supplements, and after you get this thing over here, they have the next thing already to sell you on. If it came out in a health food magazine, or someone came up with the name of a strange berry, or they shoved some dirt (ok, clay) in a capsule...like good little drugged out asylum patients, people with Lyme diagnosis stand there with their hands out taking what is being fed them...and you would just about think you were the only one awake in Lyme Matrix as you watch this happening but then you realize that every other Lyme patient is going through the same crazy mess.

 

Everything you have taken has made you worse, the marketers tell you that this is what it is suppose to do, that this means it is working. At some point you lose the ability to question that claim and eagerly look forward to trying the next thing so that you can feel even worse than before. All this reminds me of a spiritual bardo (test) in Tibetan Buddhism, where failing it you run the risk of getting lost for tens of thousands of years in the afterlife...only here it is perpetual Lyme-Land.  One might liken it to a sort of Limbo only there is too much "try this, try that" going on for there to be any Limbo. Like standing in the middle of a busy city intersection, you want to put your hands over your ears and just scream, “STOP the madness!” And you try to stop your own self...you try to get organized, you try to take a logical approach...to sort through all the treatments out there and make more thought out decisions, but when you do...you are introduced to a new layer of Lyme-World and realize that you might as well skip the “what do we do about it?” because frankly no one even knows...and I mean no one.

 

Add to that, the three main organizational Lyme powerhouses are fighting each other, vehemently I might add, are in truth only fighting (way too passionately) over what to call the later stages of Lyme that do not clear up with the antibiotics. Meanwhile you have been pumped full of antibiotics, put on restrictive diets, taken supplements...tried nearly everything that ever existed in natural food stores...you are sicker than a dog, the toilet is your best friend, you don’t know your *ss from a hole in the ground anymore and you haven’t brushed your hair (or teeth) in weeks, no longer even notice when you are leaving the house in your pajamas, and generally feel like death warmed over...and “they” are fighting about what to call it. Any sane person at this point, upon discovering this, wants to scream, “WTF people, really? REALLY?!” Yes, Virginia, really. Sad, tragic, fact.

 

In Lymie-half-slumber, the mistake is made in thinking that they who are fighting over what the f’ to call it (He Who Walks Behind The Corn), are denying that it exists...and so Lymies freak out, they start creating drama, spamming blogs, protesting, etc over something that was never even the issue. Just as you thought you were done asking, “wtf, really?” you find yourself wondering that about your fellow Lyme-World inmates. And just when you are wondering how it is even possible that everyone involved with Lyme could be so horribly lost, and everything about how Lyme is handled could be messed up that completely...and whether you are the only sane person left it is then that you really start to realize that no one knows anything about Lyme...about what it is (bacteria, protazoa, something else...the only thing they agree on is that it is alive...*doing the best Young Frankenstein impression, "It is A-L-I-V-E!"*), what it does exactly to our bodies, and more importantly what we could about it. That no one knows; that you have been diagnosed with something so poorly understood; and that there is so much controversy that you cannot even have an intelligent discussion about it much less ask a question...you begin to realize the devastating position you are in. Standing in what feels very much like the kid in Dr. Suess’s, Hoober Bloob Highway...and you wish you could turn around and walk back out and pretend you had never gotten your diagnosis (what was it you were thinking anyways when all you wanted was a diagnosis?!).

 

But as soon as you do, as soon as you walk away, you realize that there is no escape from this crazy place because even alone, by yourself, you still have all these debilitating symptoms...the pain that wracks your body, the countless neurological issues, and you’d master those if you were not always so dang fatigued or mentally confused. You lay there in your bed or on your couch trying to hang onto what shred of a memory you have left of what your life used to be like...you pray...you wish...you cry...you beg...every day hoping that the powers that be will pull their heads out of their *sses and figure this out. You grab your cane/walker/wheelchair and manage to go out your front door only to be met again by the onslaught of snake oil dealers and well meaning salesmen that just want to help you feel better. If you make it as far as the grocery store, then there is the long list of what you should or should not have...which nobody really knows either, but they have said...and after all they just wanted you to feel better...if you have managed to make it to the grocery store and managed to figure out something you can eat, you are ahead of most...hopefully now you can also remember what car was yours and the way home.

 

So here is the issue...one side is saying that after 2-6 weeks of antibiotics any true “infection” should be treated and dead...and if not, then it inherently implies that whatever it is, it is not a chronic “bacterial” infection but something else...which, inherently begs the question of, “if not that, then what else could it be?” except for the fact that Lymies never seem to separate the notion that maybe Lyme is not a bacteria with their mistaken idea that these people are saying it doesn’t exist...which they haven’t said at all (but once Lyme patients freak out, they may just say to get rid of you as quickly as possible). To them, *something* exists...they are just not sure what (yet)...and because no one is letting them ask the question, probably because without fail they trip over that they just said what they said and cannot move past it (so their side is fighting to ask the question and open the discussion). The other side, says no...it IS a “bacteria”...and it “persists”...and needs continued antibiotic treatment. Then Lymies, in their stupor, are like, “yeah, what he/she said!” and continue to swallow boat loads of antibiotics. Some will, of course, say that they felt better on them (I do)...and even though studies and tests have shown this not to be the case they cannot let go of the connection. And what happens next is they all begin to sound like a squabbling family all fighting amongst themselves...the patients, “we are sick we need help,” the “it persists” group saying, “it persists...long term antibiotics even though they don’t really work,” to wit the Lymies now divide...some are like, “yeah, yeah, give me all you got!” Others are like, “hmm...maybe this isn’t such a good idea...but what choice do I have?” And still others are like, “no way, I don't need no stinkin' antibiotics.” And divided we stand, meanwhile the first group is saying...“the antibiotics are not working, we need to come up with something else.” And no one, absolutely no one, is listening to each other. Then there is a mysterious third group, who doesn’t say much, but always seems to confound the matter, that claims it is not a “chronic infection” nor is it an “infection that persists after treatment,” but claims what is happening to Lyme patients should rightfully be called “post Lyme Treatment Lyme Disease Syndrome.” Ack!

 

All the while this crazy mess is raging on, tempers flaring, Lymies desperately trying every bizarre idea anyone anywhere can come up with no matter how nonsensical it sounds...after all, they just want out of this crazy mess, and who could blame them (I say blame the vultures making money off them, but what do I know?! I just got here remember?), everyone is shouting at each other...and absolutely no one is listening. Talk about a sticky hot mess!

 

The fact is, that *something* about Lyme is making people very sick...the doctors (whatever side they are siding with) do know this, and they can see this...and each group is very concerned for your wellbeing...they all just have different ideas about what is not-working and why. And this is good, and even necessary, because no one can get busying figuring out what works until we all first identify what isn’t working. And, so far...absolutely nothing truly works. Nothing. Nada. Zip. Nothing. You have Lyme, and although there are many things you can do, none of it works...how lovely.

 

When you have been diagnosed with late stage Lyme, you have been given a virtual death sentence because the Doctors’, Winken, Blinken, and Nod here are too busy not getting past what the f’ to call what is happening to you...that there is no way, at least not anytime soon, that they will be able to get to discussing what MIGHT work. So, essentially, you are f*ck’d...really, really, f*ck’d...you, me, and the rest of us unfortante Lymies. And, it is unlikely to change anytime soon.

 

So here are the facts...Lyme spirochetes can live un-symptomatically inside you for years, maybe even your whole life...like the chicken pox/shingles virus which stays dormant for extended periods of time. Although there are a great many theories, like stress, the fact is NO ONE knows why these things can come out of their quiet and peaceful co-existence in you to suddenly wreck havoc in your life. And, like untreated shingles, they can and do go dormant again...and again, NO ONE knows why. And as good as doctors are, and they are...and as good as medical science is, and it is...they still do not know what turns these invaders on...or what eventually shuts them off. My best guess is that, up until now, it has simply been time. But what do I know *shrugs* I just got here?!

 

One of the biggest problems among Lyme patients, and probably also a fair number of providers, is that whatever one is doing at the time that Lyme decides to go quiet...people overwhelmingly cannot seem to help but attribute what they were doing to having caused the Lyme go quiet...even though no causal relation can be found. And while quiet may seem good, it is not even known (yet) IF it is good...because it could simply mean that your immune system has shut down and that is not very good even though to the person experiencing it, it would seem like all their symptoms just went away. Lyme likes to suppress your immune system, one of its handy survival mechanisms. So there is no standard by which to gauge the effectiveness of any treatment (yet), or rather, the standard that exists (feeling better or having less symptoms) does not really measure if something worked or not. Before we can go on to discuss things that might work, we first need to decide on a true standard (true, like a line is true), one that can empirically show that whatever Lyme is...is made dead and the body is free.

 

Then we need to be able to accept what we know about Lyme...and what we know is that absolutely no one (yet), has ever been able to prove that they have killed off late stage Lyme spirochetes. To the contrary, study after study have shown live Lyme spirochetes pulled from bodies even after lengthy treatments. So, we DO know, that the antibiotics do not work. And we DO know that long term antibiotics are hard on the body and can cause many other disastrous problems. And yet, not unlike chemotherapy, and as imperfect as they may be, long term antibiotics are the best treatment we have available. So that is what I take. In that category, Burascano is the leading authority on the various antibiotics used, although currently doctors are branching out to other antibiotics. Currently, Buhner is the leading authority on understanding the nature of Lyme...and even though he is an herbalist and generally opposed to antibiotics, he supports antibiotics in the treatment of Lyme. Buhner offers an herbal protocol that can be taken with the antibiotics, and so I will also being doing that. But still, no way has ever been proven to kill Lyme.

 

Since arriving in this new layer of Dante-like whirlwind of a hell...trying just to stand still quietly in one place and create a plan as every snake oil dealer jumps out of the chaos at you to sell you on their wares...even if it doesn’t involve money, they are always in for the sell. As I watch the three sides all saying virtually the same thing, but all thinking that they are denying each other’s concerns...what rises above the noise is this...

 

“WHAT WE HAVE NOW IS NOT WORKING…WE NEED TO SORT THIS OUT PEOPLE.” 

 

What I hear in each of the three sides, is caring concern...genuine care and concern for those who have had the unfortunate fortune to be diagnosed with late stage Lyme Disease. Although maybe you just want to bang all their heads together at this point and tell them, "for the love of G-d to just “STOP"...at least they do care. Many with Lyme do not think they care, and use this to justify throwing daggers at them along with long strings of criticisms and insults (boy guys, what a way to encourage them to help us...not), but I hear it. I don’t know if it was because I stood still, but I hear it. And in that I know that we all share a common ground...which, thankfully, gives us a place to begin.

 

And, dare I say, it is about half past time to begin...as some of us are sick and suffering here...and, at least, I for one would like some answers. 
 

Welcome to Lyme-Land 

Zen & The Art of Lyme Disease

 

Understanding Vitamin D…Part 1

There are two kinds of Vitamin D that we can take or get from foods, those are known as D2 and D3.  A number of years ago a study was done on how well we absorb D2 and D3 and it was found that we absorb D3 slightly better than we do D2[1].  This led to a wide-spread false belief that D3 is better for us than D2.  Now most people would not have any problem with that assumption, however, if you happened to be a vegetarian then the commonly held belief might cause you to do a double take because D2 comes from plant sources whereas D3 comes from animal sources and we are only talking about a slight absorption difference.  Unfortunately, that false belief from a decade ago has led to an even more false belief that D2 is somehow not-active and D3 is active which is completely (sorry folks) false on its face.  However, in order to understand just how untrue and uninformed this belief is, you’d have to know a thing or two about Vitamin D which we will cover in this article. 

 

Vitamin D is synthesized, or “created,” by animals and some plants in response to the sun’s light and, upon its creation, then goes through a multi-stepped process in order to be used.  Vitamin D2’s true chemical name is Ergocalciferol, and Vitamin D3 is, Cholecalciferol, and I invite you to check the labels on your own Vitamin D bottles (or those at the store) in order to personally verify that your Vitamin D2 is truly “Ergocalciferol,” and your Vitamin D3 is truly “Cholecalciferol.”  You see, this is an important distinction that many well-meaning exerts (including researchers and well-loved doctors) make that perpetuates the false belief that either of these are in “active” form. 
 

 



So now that you know that Vitamin D3 is, in fact, Cholecalciferol, the next step is understanding how the body utilizes Cholecalciferol.  However, it is also important to understand that we also make Cholecalciferol.  We do that from Cholesterol (that we also make), or rather a part of it called, “7-dehydrocholesterol.”  The process takes place within the fat under our skin; in response to the UV rays from the sun or lights, we turn 7-dehydrocholesterol into Cholecalciferol.  From there, whether we make the Cholecalciferol in our skin or whether we take it as a pill or get it from foods, the Cholecalciferol enters our blood stream where it is then converted into “Calcidiol” which then finds its way into our kidneys and is converted into “Calcitriol,” the ONLY true physiologically “active” form of Vitamin D.  In other words, whether we make it ourselves from the sun or take it as D3, it still has to go through an additional 2-step process in order for our body to use it.  Or, in still other words, in order for it to become “active.” 

 

It always shocks and disappoints me when the doctors and experts that I love and respect make this critical error in calling D3 active, and it never fails to sadden me when vegetarians are discouraged from taking D2 which, despite not being absorbed as well, is still absorbed well enough to be a viable alternative to D3 which is derived from animal sources or from irradiation.

 

I hope that helps you understand a little more about Vitamin D.  In the next part, we will take a deeper look into Vitamin D testing and the implications it has to all we think we know about Vitamin D.

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[1] Evidence that vitamin D3 increases serum 25-hydroxyvitamin D more efficiently than does vitamin D2. H M Trang, D E Cole, L A Rubin, A Pierratos, S Siu, and R Vieth, American Journal of Clinical Nutrition October 1998 vol. 68  no. 4  854-858

Understanding Vitamin D…Part 1a

Understanding Vitamin D…Part 2 Testing

In the first part, we looked at the how the body makes vitamin D and deals with the vitamin D3 that we take.  In this part, we will take a deeper look at Vitamin D testing and the implications that it has on our current understanding of Vitamin D and its role in our health and wellbeing. 

 

When your doctor or practitioner runs a Vitamin D test for you, it is likely that they ran what is known as the 25,D test.  The 25,D tests for D2 (non-active plant based ergocalciferol) and D3 (non-active animal based cholecalciferol) which it then totals to give you your Vitamin D level.  This is the basis (and often the sole basis) for the assumption that one is low in Vitamin D.  It is also the sole basis in the majority of studies on Vitamin D and its effect on one’s health and illness.  However, as we looked at in part 1, all this shows is the amount of non-active, or storage form, of Vitamin D.  This is sort of like looking in one’s freezer and making an assumption of whether or not they are getting enough to eat.  What it does not do, is look at one’s table and see if there is food on it. 

 

It is often believed, in the medical community, that if there is enough of the storage form of something that 1) the body is properly converting it into the active form; and 2) that it is doing so in sufficient quantities.  For example, in measuring thyroid function, they often only test the pituitary’s request for thyroid hormone (TSH) or, if they are progressive, test only the storage form of the thyroid hormone (T4) assuming that the body is properly converting it and that it is doing so in sufficient quantities.  Only rarely, if ever (and often only by patients pushing for it), do they test the active form of the thyroid hormone (T3). 

 

On one hand, this practice allows for the fact that no one really knows the deeper ways of the body, or its logic for doing what it does, enough to draw any solid conclusions.  However, on the other hand, if one is having a problem then a closer look is warranted and, indeed, would be the only thing that could tell you whether or not you have a problem in this particular area.  For example, with the thyroid, a number of people have perfectly fine levels of TSH and T4, but are not making enough of the active hormone T3.  If you only looked at the TSH and T4 you would never know this and the implication is that the person would continue to suffer low thyroid levels and be, ultimately, denied access to treatment for those low levels and that could profoundly improve the quality of their life. 

 

The same issue as for the thyroid is also true of Vitamin D (yet another endocrine hormone).  When they test one’s Vitamin D levels they use the 25,D test which only looks for the non-active storage form of Vitamin D (like looking in one’s freezer).  The 25,D test does NOT look at the active form of Vitamin D (look at one’s plate).  This has huge implications, not only to our own understanding of the role of Vitamin D, but also in that it potentially invalidates the majority of studies on the subject.  My hope is, of course, that the medical community and researchers begin to realize the inherent issue in the way we are currently doing things.  For example, a large amount of the studies done on Vitamin D are done on people with chronic illness.  However, and even though the medical community suspects that autoimmune conditions likely arose from some underlying infection that potentiated the immune system, and that bacterial infections (even low grade ones) increase the activity of the enzyme CYP27B1 that converts 25,D (D3 - cholecalciferol) to 1,25 D (calcitriol), therefore producing too much 1,25 D (calcitriol) and also creating misleadingly low 25,D (D3 - cholecalciferol) levels.  As well, those with certain genetic mutations (ones that you would probably never know about) likewise, up-regulate the enzyme CYP27B1 which then over-converts D3 (25,D) into calcitriol (1,25 D).  Either one of these factors creates misleadingly low 25,D levels and the assumption that they are low Vitamin D.  However, these factors also create either ideal, or too high, levels of 1,25 D (the active hormone).  In other words, a majority of the Vitamin D studies on those with chronic illness, are likely not-low, but instead too high levels of the active hormone, but they would never know because they do not realize that there is an inherent issue with the 25,D test (nor do most other people know).  And the belief that those with low non-active 25,D levels should (and do) supplement only exacerbates this issue causing an even greater situation if the person has too high levels of active (1,25 D) Vitamin D. 

 

Therefore, for those who are sick or who are told that they have low 25,D levels, should get  dual Vitamin D testing done wherein both 25,D and 1,25 D are tested to ensure that they are, in fact, low in active 1,25 D before taking Pre-Vitamin D3.  If one has low 25,D and ideal (middle of the range) or high (higher than the middle of the range), this is known as the Vitamin D Reversal Pattern and warrants further investigation as to why.  For example, do you have some chronic underlying condition that you didn’t know about? 

 

I hope that helps you understand Vitamin D a bit better.  In the next part, we will take a deeper look at how high levels of the active (1,25 D) hormone can adversely affect your health.