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.
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.
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 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.
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 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.
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.
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.
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.
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.