Chronic Lyme Disease Isn’t About an Infection

Does ‘Chronic  Lyne Diseease’ exist? Who cares. Is it really CFS? Who cares. Is it some other pathogen? Who cares? Is herbal or antibiotic treatment more effective? Who knows. They both don’t seem very effective

So if treatment is not very effective in many to most to ridding of disease, is there chronic infections involved? Yes. Then why aren’t they going away? Immune dysfunction. So is it like AIDS? Well, no. It’s not usually a death sentence, but a life sentence. Can you get better? I hope so and hope I will. Some people seem to. Can you improve? Yes.

So why is this so hard to crack? I don’t know, but if I would guess, chronic biotoxins have a lot to do with this. So can you get rid of these biotoxins? Sure, at least to a point. What are these biotoxins? Well, probably many things. What about mold. That seems to be in the picture for many. How do you get rid of it? Well, you can try various binders, and while that may improve symptoms, it’s not clear how much it helps sensitivity

Various genetic mutations as well as a dysfunctional methylation cycle can cause various toxins to bioaccumalate.

So, how do we detox then? I think we need a liver support supplement that supports Phase 1 and 2 detox.

Chronic Disease Denialist Syndrome

There is an epidemic of Chronic Disease Denialist Syndrome (CDDS).

No, I’m not talking about Chronic Lyme Disease, I am talking about chronic disease in general.

Throughout recent years there has been many denialists of chronic illnesses. When a cause is not clear, there are many “skeptics” out there that default to a psychiatric explanations. Even when the science isn’t yet clear on potential emerging diseases, they are very quick to accept unfounded psychiatric explanations. I am not sure if these people realize or not (I assume they most are just following the herd), but this is not scientific.

Why do these people deny chronic diseases despite established neurological, immunological, and biological abnormalities? Well, they either truly believe these illnesses are mental for some reason, or they like to see people suffer. I am not going to attack people personally, but unfortunately, I think I have seen a lot of the latter.

I’ve been trying to figure out why these people do what they do. They aren’t trying to help people. In fact,t they are trying to stab them in the back when they aren’t paying close attention.

I honestly don’t understand this personality, but a friend told me these type of people are people with sociopathic tendencies. I didn’t even know what that meant, but when I looked it up, it seemed to fit. I don’t understand why one would have such a mindset, and I don’t think I ever will. And from what I read, it’s not an extremely small amount of the population with socipathic tendencies.

These people deny the existence and suffering of illnesses such as Gulf War Illness, ME/CFS, and Fibromyalgia. I used to think this was group think or some type of herd mentality, but I have noticed recently that some actually enjoy seeing people suffer. For example, I have seen some members on various forums (without a chronic disease) that are pretending to be there to help these people. They are modern day AIDS denialists, and it’s quite ironic that they are the ones trying to call us AIDS denialists. Eh, what?

When you see their blog, for an example, it’s clear that they exhibit multiple personalities. They are more gentle with people on the forums and pretend to be their allies, and then in their blogs, they rip these people apart. This is recreation for these people, and these are the people that are truly mental ill.

Is it just Lyme and chronic infections? New thoughts on the disease process.

In this blog post, I am going to speak from my own perspective.

I received a Lyme Disease diagnosis, and after I wasn’t recovering I received an ME/CFS diagnsosis.

So which diagnosis is right?

From my perspective, I believe both diagnoses are correct in my case. However, I think when you have chronic Lyme, Lyme Disease is actually a small part of the big picture. I think it’s rare that somebody with chronic Lyme disease just has Lyme disease. I believe most have tick-borne co-infections and/or other opportunistic infections. I also believe there are immune dysfunctions, auto-immune mechanisms involved, amongst other things. It’s a complicated puzzle, and I believe the pieces can change based on what infections, what genetic mutations, what toxicities, and what susceptibilites one has.

Since I have a diagnosis of ME, does that mean I may be infected with a retrovirus called XMRV?

There has been a debate going on about whether patients with ME are infected with a retrovirus called XMRV. A retrovirus makes a lot of sense, and I really think there may be a retrovirus involved, but I don’t think it’s XMRV. However, my opinion will obiously change if there are positive results from the BWG/Lipkin studies. Strangely, for whatever reason, the FDA is suddenly taking the investigation more seriously. I’m not too sure what to think of this. Coincidentally (or not), I became ill in 2008 while living where the Lake Tahoe epidemic took place.

So what do I think is going on?

In my case, a number of organisms have taken over my cells as seen in lab results, darkfield microscopy, and wright-giemsa staining.

I have an ignored disorder of the heme synthesis called kryptopyrroluria (known as HPU or KPU). Today, this is seen as an alt-med diagnosis, but when you look at history, this disorder has appeared in many medical journals and even some of the most prestigious medical journals from roughly the 1960’s to 1970’s. After this, the disorder has been basically ignored, and even forgotten in mainstream medicine.

I also think many patients may also have a generally “mild” (for a lack of a better word) secondary porphyria caused by a combination of toxins and infections. However, patients (including myself) have still been to the E.R. with very severe and distressing symptoms that resemble a porphyria. Perhaps the patient may misinterpret these attacks as an extremely severe herxheimer response. Like HPU, this is a disorder of the heme synthesis. A secondary porphyria could explain both the dysfunction of the Cytochrome P450 system and the somewhat relapsing/remitting nature that some experience. It could also explain the drug, food, and chemical intolerances many experience. While I do not notice many drug or food intolerances, the couple drugs that landed me in the E.R. were an anti-psychotic called Geodon, and the drug Rifampin. I was not able to handle quinolones or Rifampin, but I was able to treat the bartonella with an herb called Houttuynia (which caused low-grade fevers and major herxing). Both Geodon and Rifampin felt like they were going to kill me and landed me in the hospital. These drugs can be great offenders of porphyria.

I feel that the disorders of the heme synthesis may contribute to the methylation problems I experience and my need for mega doses of vitamins such as B12 and Folate.

So why do I think I may have secondary porphyria. Well, I did an at home test where you take a urine sample and stick it in the sun. Throughout the course of the day, the urine changed to a very dark copper-brown color. I am receiving a kit from The Porphyria Foundation to see if I really have the condition.

Some may look up porphyria and think it’s a very rare disease, because well, they call it very rare. I think it may be a lot more common than we think. We have to look at history and remember that in 1889 there was a near epidemic of porphyria in Europe induced by the drug sulphonal.

A porphyria and MCS connection has been made in the past, but this of course sparked a lot of controversy – enough to make Stephen Barrett from Quackwatch try to “debunk” the connection. Many researchers that were trying to debunk an MCS Porphyria connection were also trying to debunk MCS as an organic syndrome at the same time. With the conflicting medical journals and obvious biases researchers have portrayed, I will keep a neutral position until there is better science and controlled studies when it comes to MCS, possibly related syndromes, and porphyria. In the mean time, I am on a quest of my own.

These are my most recent views on my illness. I don’t claim to be right, and I don’t claim to have ‘the answer’. I’m just sharing random thoughts and opinions.

I Can’t Stand Doctors Anymore

I am writing this post out of frustration. Frustration with doctors. Frustration with the way they are taught. Frustration with they way the judge. I don’t know who trains the typical M.D. how to make clinical judgement, but they are very poor at it in my opinion. Somebody needs to change the system. Perhaps it works for acute care, but people that have chronic diseases are probably judged as just being crazy. It’s sad.

I try to refrain from negativity, but I had such a terrible weekend.

I went to an urgent care. I have some major bowel issues right now. I also had a herx of my CNS, and my autonomic nervous system took a big hit. Heart rate is over 140 standing. Standing makes me feel terrible. I have dysautonomia, but I don’t get drops in blood pressure. In fact, it can be quite the opposite and dramatic. The nurse did take my blood pressure sitting and standing. Only she wrote down the wrong heart rate. She wrote down 121 when it was 141, and when I told the doctor that, it was in one ear and out the other.

Well, this doctor was trying to say that an increase in blood pressure on standing is normal (mine used to shoot up into hypertensive crisis range), and that perhaps it was just anxiety. Oh yes, I was anxious. I was on double dose of anxiety medication that day so I didn’t end up in the hospital. I rarely ever do that, nor do I wish that I need anxiety medication. Unfortunately, a side effect of Cipro is what got me on the anxiety medication, and when I told him that I got a very strange look. Like it was unheard of. He said an allergic reaction would be a rash. I told him my reaction was much more severe and longstanding than a rash, and it was an allergic reaction. He was aggravating me. Extremely severe and anxiety that relates to nothing is an effect of my illness that was exacerbated by Cipro. I told him I am sensitive to many medications. Another strange look.

I was there for other reasons. I suspected that there may be some blood in my stool based on color along with my other bowel problems. He asked if I take anything that could turn it black. I made the mistake that I take activated charcoal every now and then, and that I took it that day to see if it would help. He asked me why. I said for toxins.

He continued to say that activated charcoal only absorbs toxins you ingest, and to never take it again. Thanks a lot doctor. I will make sure not to take things that make me feel better. Oh, and thanks for asking if it helps me by the way (sarcasm). Though he did give me a strange look when I told him I take it for toxins. I guess toxins don’t exist in his world since he doesn’t have CFIDS and Lyme.

He then told me I didn’t have any infections since my WBC count was within normal range. It was actually towards the top of normal range, so I was proud that my WBCs were probably responding a little bit and weren’t low or border-line low like usual.

I felt really sick, was in pain, and my CNS and autonomic nervous system were going bonkers. It was enough to get even more irritated than I already was.

I figured he already judged me anyway, so I started telling him how he was so wrong about everything. No, I wasn’t exactly nice to him, and at that point, I didn’t really care.

They did a quick lab test, and according to him, everything was normal. When I asked for a copy, there was a few things out of range. This is not normal. Perhaps it’s not life threatening, but why don’t doctors read the lab results to their patients and explain their interpretation. I am not an idiot.

He then offered me something for pain called Tordol. I can’t take it. It makes me vomit. I don’t think he believed me. He wouldn’t give me anything else. My pain was and still is pretty bad.

Then he asked if I wanted an injection of something for colon spasms. I told him I didn’t, because I didn’t know anything about the med he wanted to inject. He told me it would make me feel better. I responded that I heard that many times. I got a prescription for oral instead.

I picked up the medication. Apparently, it’s not advised to take the medication with autonomic neuropathy or dysautonomia. Mine has been severe the last few days.

Glad I never took it. What a waste of time going to the urgent care. I can’t deal with these so-called doctors anymore. My unlicensed naturopath knows more about the human body than they do. Much more. His 32 years of practicing (which he bragged about) has done him no good. I guess you can say he is just another doctor trapped in his box of ignorance.

I think he thought I was just nuts. I have incontrovertible evidence of physical disability, and I am in my mid 20’s. Though I am sure he doesn’t care. That seems typical these days. Not many people care.

Thank you. I needed to vent.

Update:

I ended up in the hospital. They thought I had pericarditis. However, after further evaluation that doesn’t seem to be true. It seems that I  did have a nasty viral gastroenteritis bug based on my symptoms and recovery from it. I had a herx around the same time, and I think both the virus and the herx hit my CNS. I didn’t think it was viral because it felt too severe, and I don’t usually get viruses anymore for some reason.

Did We Save a Life from Tick-Borne disease in the ICU?

First of all my Grandma had a major stroke. She lives with us. However, if she makes it out, she wouldn’t be living here unfortunately. Right now she is on feeding tubes and sleeps the majority of the time. She is not brain dead the moments that she is awake as she is able to somewhat communicate what she wants, and knows who people are. She has a couple secondary infections right now.

Prayers to my grandmother.

Back on topic:

A 23 year old male (nearly my age) was airlifted to the ICU with an 106 degree fever. He was a personal trainer/body builder.

The family didn’t know what was wrong with them, and they were crying as his blood pressure hit 50/20. He was active outside and exercised in wooded areas. My mom told the family to get him tested for tick diseases and shared my story.

Anyway, I told my mom later that it was probably something like sepsis from dirty needles from steroids and I doubted it was a tick disease. I didn’t think a TBD was likely at all.

Well, it turns out that the family had him tested for tick-borne diseases while in the ICU, and guess what? He had Rocky Mountain Spotted Fever (RMSF). We are in the south, and doctors here don’t even THINK about testing for tick diseases.

This person was released from the hospital today. The only reason we knew it was RMSF is because his family and their son told us it was RMSF as we caught them walking out of the hospital. He was discharged today, and looked well. Apparently he took off all his leads and medical equipment in the ICU and started doing push-ups the other day! They removed him from the ICU when he started to do fitness exercises next to his hospital bed (haha).

I am not sure if he is completely recovered (I think that would be unusual at this point), and hope he gets well and doesn’t have co-infections.

Are you getting better, but not getting better? Where CFS may play a role.

Step back for a moment and examine your situation.

Are you getting better from Lyme treatment, but are you never really getting better?

Is Lyme Disease really the cause of your illness? Sure Lyme Disease may be a huge factor, but is it Lyme Disease that is keeping you sick with Lyme Disease?

I don’t believe in the post-Lyme syndrome nonsense and probably never will, but I do believe there could be something perpetuating the disease.

So is it mold? Is it pyroluria? Is it chemical sensitivities? Is it a messed up methylation cycle? Is it your diet? Are you just too toxic? I’m beginning to believe that the cause is none of these factors.

Sure, moving to a mold free environment may help, addressing pyroluria may help, addressing the methylation cycle may help, eating properly may help, and addressing toxicity may help as well. However, you can address all these abnormalities and remain sick. If one clears their terrain and the Lyme infection enough, I do think it’s possible to get rid of chronic Lyme Disease and walk around symptom free. But what caused Lyme to go chronic in the first place?

Is it that Lyme is just a clever organism? Well, yes, I think it’s a clever organism, but is that why your body can’t eradicate the infection?

In my opinion, I think the majority of chronic Lyme cases may have a CFIDS MLV virus underlying it. This isn’t well studied yet, but it is just my opinion.

I guess I have this opinion since I have Lyme Disease and CFIDS. No, I held off on the XMRV test for now, but all other testing done by a respected CFIDS doctor is highly indicative of CFIDS. I can’t turn oxygen into energy like a normal person. My VO2 test (a test where you ride a bike with a mask that reads your oxygen) was not good. In fact, it was bad. I was in the 1 percentile for my fitness level compared to people with the same age/gender. My growth hormone was <0.1 and it didn’t respond to exercise (abnormal). My cortisol doesn’t respond to exercise like the average person either. This can explain why I can’t tolerate exercise. My body doesn’t like it, and much of the time, my body doesn’t let me. My CFIDS doctor declared me disabled, and according to him I shouldn’t have trouble getting disability. It’s not exactly something I want to hear at my young age, but I can’t be afraid to accept reality. Sure, some money would be helpful, but who wants to be labeled as disabled? Not me.

Before any of this mess, I was highly active, and I’m sure I would have been at least 90%+ for my fitness ability. I worked out and mountain biked about every day in the summer, and in the winter, I snowboarded just about every day. I lived in Lake Tahoe.

So my tests indicate moderate-severe impairment. The exercise recommendations seemed realistic (such as walking 1 mile a day and swimming 20 yds/min), or biking at 5 mph.

If your impairment is less severe, you probably will be a lot more exercise tolerant and functional. You can have mild CFIDS/ME.

Now do I think I was misdiagnosed with Lyme? Absolutely not. It seems to be what triggered this terrible cascade. The stress was enormous upon becoming sick because I had no clue what was wrong with me and doctors were anything but supportive. The herxheimer reactions were initially tremendous and scary, and I had many ER visits because of them.

I do not want Lyme disease. I wish I never had it. I am not misdiagnosed and I am not delusional. However, this disease (in combination with CFIDS) does give me anxiety, and I honestly feel a bit paranoid sometimes about what will happen next. I may look into some weird therapies (such as non FDA approved medical devices) that most others wouldn’t consider. I just want to get better. I believe it’s possible, and I won’t stop trying. No, I won’t give up and resort to just psychotherapy. I’ve actually tried that before when I was at my worst. I may use psychotherapy in addition to addressing the very real pathological diseases, but ignoring them and saying there is nothing I can do about them is not in my DNA. Let me try, and perhaps I will succeed some day. I do think a form of psychotherapy that works for you is important, because, having the right mindset boosts things such as NK cells (and many others). Read about psychoneuroimmunology for more information.

Eliminate Lyme, Co-infections, and CFS with Bob Beck Protcol?

So I saw a CFIDS doctor. I haven’t been tested for XMRV, but I meet many of the parameters that are consisitent with CFIDS. I’m beginning to think that CFIDS and chronic Lyme can be co-morbid. I think the common thought in the medical community is that people with chronic Lyme are misdiagnosed and have something like Fibromyalgia or CFS instead. I think the experts may be right about this, but in cases such as myself, I honestly think it’s a co-morbid condition. It’s so obvious when I take antimicrobials that an infection is present. The herxes were intense, but now they are only monthly thank god.

Anyway, back on subject, Bob beck came out with a protocol for curing AIDS (and virtually any disease) in the 1990s. It worked, but because of information suppression (yes, even with the internet), you may not have heard about this protocol.

There are a couple testimonials of Lyme cures using the Beck Protocol (or similar treatment), but strange enough, other than a few testimonials from years ago, I can’t find many people with CFS that have tried the protocol. It seems that the people diagnosed with Lyme are more likely to use treatments that seem obscure; such as a Rife machine or other electrical or energetic medicine. I think people that are diagnosed with CFS are just as desperate, but become less experimental as most hold a belief that there is no way to get rid of it. They hold a belief that they haven’t got better in 10 years, so there is nothing they can do do get better. I will make sure I don’t adapt that attitude. I also don’t plan on going on prescription anti-retrovirals even if I come back positive for XMRV. From all the literature and books I have read, I just don’t believe in them. I won’t get into why in this post.

Anyway, the beck protocol consists of several things.

• A colloidal silver generator
• A electrical zapper that you wear around your wrist
• A magnetic pulser for killing pathogens/viruses in your tissues, organs, and lymphatic system
• An ozonated water generator

You can buy all of these through a company called Sota Instruments (the company Beck originally used), but remember none of the equipment is intended to diagnose, treat, or prevent any disease. There you go FDA. I put the disclaimer for you. 😉

If you read my other posts, you probably already know how much I love colloidal silver. There is arguments over what types of colloidal silver is better. There are websites and companies claiming that colloidal silver is better than ionic silver (without in vitro or in vivo studies), but I will disagree based on experience. I am not saying I am right. It’s just my opinion.

Bob beck prefers ionic silver, and according to lectures from Bob Beck in the 90’s the Sota generator can generate silver at .001 microns. This is very good. I personally purchase my colloidal silver, and haven’t tried making it myself. The Sota generator is a bit pricey.

You can find “authentic” home made Bob Beck zappers on Ebay that use the original Beck schematics. If you have a bit of an engineering mind, you can also make one yourself for cheaper.

You can find and buy home made magnetic pulsers as well, but I’m not sure how much I would trust them. Many use a camera flash to power them. I think I’d rather go with Sota for the pulser. I guess you can say I am skeptical about the camera flash versions.

As far as water ozonators go, I am not too familiar with them. I will have to do my research. Again, the Sota ozonator isn’t outrageously expensive, but it isn’t cheap either.

If you buy all the equipment through Sota, the price is about $875. This is definitely not cheap when you are strapped for cash, but if it could produce cures, it would be a bargain.

If more and more people accept and utilize this protocol, I honestly think it’s possible that we will start hearing about cures more. I don’t know the dangers of this type of therapy (or if there are significant dangers). From all the searching I have done, I haven’t heard of anything bad happening from this therapy, but that doesn’t mean that there isn’t potential side effects.

While protocols like this may sound too good to be true, I don’t think Bob Beck is spreading pseudoscience. Will the mainstream believe in it? They like pills and Big Pharma has a stronghold, so probably not. However, that doesn’t mean that Beck’s invention is pseudoscience. In fact, at the time of the video below, he has received hundreds of lab tests demonstrating negative HIV/AIDS tests from people who followed his protocol.

As I do more research, I plan to update this article with more information and links to anectodal evidence of CFS and chronic Lyme cures.

In the mean time, I recommend watching the 50 minute Bob Beck lecture below. Be careful, as the information may blow your mind.

Here is a link to his lecture notes (PDF).

If you don’t like PDFs, here is the Google Quickview version.

Bad Ethics and Lyme: Michael V. Norgard Ph.D.

Michael V. Norgard is a professor and Chair of Microbiology at UT Southwestern Medical School in Dallas, Texas. He researches Lyme Disease, and also publishes medical journals related to Lyme Disease.

Michael Norgard recently appeared on CBS 11 News in the Dallas/Fort Worth area.

The article can be found here: Controversy Of Treating Lyme Disease Arises In TX

Michael Norgard said, “There is no evidence to support the fact that there is such a thing as chronic Lyme disease.”

There is just one problem.

On his professional website, he states:

Syphilis and Lyme disease are chronic, complex infections caused by the spirochetal bacteria Treponema pallidum and Borrelia burgdorferi, respectively. While syphilis and Lyme disease are transmitted differently (i.e., sexually or through the bite of a tick), they share many common features. These include penetration of the organism through skin, dissemination via the bloodstream, and immune evasion leading to chronic infection. Acute and chronic inflammatory responses are associated with both diseases

Well, that’s interesting. So Mr. Norgard, is Lyme chronic or not? I exchanged some personal emails with him to discuss the fact that what he said on CBS 11 news contradicts what he says on his own website.

Here was my first email:

Dear Michael Norgard,

What you said on TV contradicts what you have said on the internet.

“Syphilis and Lyme disease are chronic, complex infections caused by the spirochetal bacteria Treponema pallidum and Borrelia burgdorferi, respectively. While syphilis and Lyme disease are transmitted differently (i.e., sexually or through the bite of a tick), they share many common features. These include penetration of the organism through skin, dissemination via the bloodstream, and immune evasion leading to chronic infection. Acute and chronic inflammatory responses are associated with both diseases.”

http://www.utsouthwestern.edu/utsw/cda/dept131456/files/158983.html

You also published medical journals supporting persisitence.

Here is 82 page list of medical journals supporting the idea of Chronic Lyme:

https://acrobat.com/#d=sbb-EmpQrQTgrPoezLGreg

I am now very confused about your stance on Lyme Disease.

Sincerely,
Kyle XXXXX

I thought I was fair, but his response looked unprofessional and a little bit hostile to me. I would have expected a more professional response from a professional.

Here is how he responded:

Dear Mr. XXXXX: I do not know who you are. Are you health care provider? In any event, Lyme disease is chronic IF NOT TREATED. There is no credible medical evidence that there is chronic persistence of the organism after antimicrobial therapy. Dr. M. Norgard

Of course, I emailed him back.

The 82 pages of abstracts I provided support persistence. All abstracts were pulled from PubMed, and there are probably more than 100 abstracts you can look through.

None of those studies are credible? I find that hard to believe.

I think there is at least enough information to keep an open mind and develop a neutral point of view, but in the evidence of science and contradicting medical journals, I think it is premature to conclude persistence is not possible after antimicrobial therapy.

Again, you said, “There is no evidence to support the fact that there is such a thing as chronic Lyme disease.”

In my opinion, that’s quite a bold statement. Do you think you were taken out of context? In your reply you seem to acknowledge there is such thing as chronic Lyme disease, even though you hold the belief that it’s chronic if not treated. Was that part cut from the interview?

I haven’t had the chance to look through all your medical journals, but have you done any research on the pleomorphic nature of Borrelia and others?

If you have the chance to read a book, I suggest picking up Cell Wall Deficient Forms: Stealth Pathogens by Lida H. Mattman. It was published in 2001 I believe, but it’s a great resource to have. I believe the first edition was printed in the 1970’s if my memory serves me correct.

Lida Mattman has a master’s degree in virology from the University of Kansas and a Ph.D. in immunology from Yale University.

http://www.amazon.com/Cell-Wall-Deficient-FormsStealth-Pathogens

I’m not sure if I expect another response from him, because in my opinion, I don’t think he could intelligently respond to my email. His lack of integrity and poor ethics were exposed, and I think he realizes that.

I’m not sure if Mr. Norgard has conflicts of interests, or if he is just afraid of saying the “wrong things” in front of his peers. He reiterated the IDSA stance like a pre-programmed robot in my opinion. But does he believe his own words? I honestly think he is intentionally trying to mislead the public for reasons that I am not sure of. You would think he was two different people if you looked at his website and some of his medical journals.

There shouldn’t be tolerance for people like this. I will be doing to do all I can in attempt to stop people like this, but we need to find an organized way to do it. Science can’t maintain integrity when we have people like Michael V. Norgard (and probably many other unethical individuals) writing medical journals.

Please note: All commentary in this article is of the author’s opinion and should not be misinterpreted as fact.

Is it Chronic Lyme, CFIDS/ME, or Both?

I had an appointment with a CFIDS doctor today. He takes insurance and does a bike test that measures oxygen (also covered by insurance) so I can possibly get disability. I think it is nice that he works hard to get people disability.

I am finally getting a salivary cortisol test through Quest. I was holding back on that test because I didn’t know Quest could do it. Hopefully this will shine a light on how to address cortisol issues. We already seem to think that cortisol is a problem based on other tests and symptoms, but the hormone replacement therapy wasn’t working for me — in fact, I think it made things worse.

Even though he worked with a Lyme-literate doctor, I don’t think he knows what to think about Chronic Lyme anymore. According to him, his wife and son have CFIDS.

He seems to think the XMRV virus (the name may change) can cause a false positive on a Lyme test. This doesn’t make sense to me at all. Why would a virus mimic Lyme to the point that produces Lyme-specific bands and even antibodies? I think it’s more likely that people are already carrying around the Lyme bacteria (likely asymptomatic), and when one acquires XMRV, it makes sense to me that you can develop chronic Lyme in the same kind of way as chronic EBV (or other infections that are know to be chronic). I don’t verbalize well some days (it was hard to get my thoughts out through speech today), but he understood what I was trying to say and seemed to think that made sense.

(Update: My somewhat skeptical CFS doctor now thinks I have chronic Lyme. Surprise?)

He concluded that he doesn’t really know what’s going on, and the whole thing is a mess. Researchers and doctors don’t necessarily agree with eachother, and unfortunately, the patient ends up in the middle of the mess. He doesn’t like all the controversy either.

I have had intense herxes, and have the typical 4 week herx cycle on Rocephin. I also had spirochetemia (spirochetes in blood), but a negative Lyme PCR. I don’t know if I still have spirochetes in my blood, but they can’t be found on a dark field smear anymore, so I think that says something. I understand that the common belief is that Lyme spirochetes can’t be found in the blood. I think if substances such as glutathione is depleted, it’s quite possible the blood and even blood cells may become a safe haven for the spirochetes. Or perhaps I had a strain genetically close enough to Bb to test positive, but the genetics are different enough that they act more like TBRF spirochetes. I don’t know. I’m guessing. All I know is that there were spirochetes in my blood, and they shouldn’t be there.

My red blood cells and even white blood cells (macrophages) were loaded with unknown bacteria as well. It would be a challenge finding them on a smear now, as most of the critters seem to be gone. However, I remain sick, possibly because of infections sequestered in tissues or even the retrovirus (again, I would rather not have a retrovirus). I am making consistent progress now, so I know whatever I am doing is working, or at least helping.

Herxes and even some medications used to land me in the hospital, but I found it’s because I don’t detox on my own. My methylation pathways have to be pushed. Why exactly? I’m not sure. HIV can cause methylation issues, so maybe XMRV does as well? With my relatively simple protocol, I now dump toxins at a much faster rate than I take them in. It requires me to drink lots of water as I don’t think it’s good for urine to be so concentrated.

Dr. Cheney doesn’t think it’s a good idea to push methylation. If CFIDS is a component of my illness, I think he is dead wrong. It makes me feel so much better, and his beliefs don’t make sense to me. I think he needs to try the protocol and listen to patients (and ask how they feel) rather than focusing too much on things like changes in the heart and oxygen in a very short period.

The doctor I saw today looked through all my tests and thinks it’s likely that I have the retrovirus (and I was living where the first major outbreak was if that really means anything), but he is not testing for it quite yet unless requested. I am holding off for now. I would like to think that I don’t have a retrovirus, but I am open to the idea that it may be a big reason I have been ill for a couple years.

I have a load of new tests to take to Quest. I am trying to look at both sides of the coin so I don’t leave a stone unturned. I think getting different perspectives is helpful, and I think I learn more things as a patient when visiting physicians with varying opinions.

Doctor as teacher. Use their knowledge to draw your own conclusions. They don’t know everything. None of them do.

A somewhat unrelated note: Silver can treat retroviruses. I think the book I mentioned in my previous post found me for a reason. Perhaps it’s the answer. Who knows?

Everything Happens for A Reason – Silverbiotics Revisited

My dad went to lunch the other day with a business friend named Scot. Scot asked how his kids were doing, and my dad mentioned that I have Lyme Disease.

Scot mentioned that his dad had Lyme disease. He mentioned that his dad wrote a large comprehensive book on how to treat Lyme Disease. He proceeded to say many thought his dad was nuts, but he is actually a brilliant man and knows what he is talking about. His father has a B.A., B.S., M.A., M.S., N.D., Ph. D, D.C.. From what I have heard, he is also an extremely talented musician and plays 10 musical instruments.

Well, Scot proceeded to say that this may sound kind of crazy to some people, but he actually used silver to defeat Lyme Disease. My dad responded that I use silver against Lyme disease, and apparently Scot was shocked.

I received this book – The Micro Silver Bullet – from Scot. This is the book his father wrote. It was published in 1995, but he was way ahead of his time. The book, the protocol, the supplements, the detox, the lyme diet, and everything else is written as if it could have been published this year. As of now, I have only skimmed through the book, but there was amazed of the abundance of information he provides.

Here is the note from Scot. I have always believed that everything happens for a reason. It seems almost if these coincidences that we experience throughout our life are set up. My dad came home and surprised me with this book, and this book made my dad and I feel very connected as well. He was excited and proud that he just happened to find this book for me.

Without a doubt, I’m going to modify my protocol based on the information provided in this book. Because of this coincidence (or whatever you want to call it), I strongly feel that I am heading down the right path, and it feels great!

There was one more coincidence that my dad and I thought was strange. My dad works in commercial real estate. There is a picture of a building in the book where Dr. Farber (the author of the book) worked. My dad just approved a loan on that very building today; the same day I received this book.

Aren’t these little things in life neat? I’ve starting to appreciate them more.