Help Wanted: Lyme – AIDS 2.0

The Beginning and the End

Remember when you were a kid, and you had your favorite “sick food?” Mine was toast with butter and honey, but the butter had to be completely melted so the honey could fully penetrate the toasty crevices. Do you have someone to make honey toast for you when you get sick now, as a grown-up?

If you got sick, would someone be there to watch TV with you and tell you, “Nah, you don’t stink at all”? If you stayed sick, would someone be there to take you to doctors’ appointments, pick up your meds from the pharmacy, tidy up your house? If you got really sick, would someone be there to make sure you’re eating, offer to take care of your kids and pets?

What if you were so sick you could no longer work or take care of yourself? Would someone be there to provide support—emotional, financial, or otherwise?

It is said that most deaths from Lyme disease occur as a result of suicide. Of course, we have no real statistics, because, if you can’t get diagnosed in the first place, how can your suicide be attributed to Lyme?

Did you know that the CDC now acknowledges that there are about 300,000 new cases of Lyme disease every year in the United States? Did you know this figure is six times higher than HIV/AIDS, yet only about 10% of the Lyme cases are allowed diagnosis and treatment?

The other 90%? They’re written off as crazy or lazy and abandoned by their family and friends—those who should be first in line to show them compassion and love.

Why? I’m at a loss. Trying to make sense of what motivates people to be abandon others in their time of greatest need—when their health has completely failed them—is like trying to understand how 2+2 can equal 5. Yet, this is reality for many with whom I come into contact every day. It’s a reality that has devastating consequences.

No Diagnosis, No Dice

meme_cryme4People who can’t get a diagnosis (and I mean ANY diagnosis, LET ALONE Lyme) and who live in excruciating pain and sickness every day, are treated like frauds by most doctors. Where does that leave a person? You can’t get pain meds—they’ve pretty much outlawed them at this point. (They’d love to give you psych meds, though.) Family, friends, employers, complete strangers…nobody seems to understand that yes, it is possible to be impossibly sick, and no, we would not choose to be sick if the option existed.

The truth is that most Lymies are walking around with an AIDS-like disease, pretending with all their heart to be functional, while fully knowing that on the inside, everything is disintegrating into a puddle of useless sludge. They are barely hanging on, working to support a family, pay the mortgage, cover medical bills that are denied by insurance, put on a show of everything’s-rainbows-and-unicorns, all while harboring this AIDS-like disease that is killing them from the top down, from the inside out.

And at some point—maybe when the bills become too much to take, maybe when a sentence can no longer be strung together, maybe when the agony of getting out of bed and facing another stressful day of working while disabled—people crack. Suicide does become the only option. AIDS patients, in the beginning, had the luxury of death. Lyme victims are subjected to an inhumane and never-ending torture of body, mind and spirit.

Those are the ones who are still standing. Countless others are homebound, bed bound, and quite frankly don’t have the strength or means to commit the unthinkable. Still, they find a way.

We Need Compassion, and Other Stuff

Where is the compassion? We are too sick and poor to organize and protest. Besides, who would we protest? This criminal conduct which rules Lyme policy runs the gamut from academia to medical associations to government. Are we supposed to say, “Please, criminals, stop torturing us?” We are not a protected class; this disease affects all races, religions, genders and ages. We are shunned and blackballed by doctors who determine us to be “difficult” or “non-compliant.” Then, adding insult to injury, we’re abandoned by family and friends—why? This, I do not understand. WHY? Why would a human being dump another human being like the scraps off their dinner plate, into the disposal?

We cannot get disability unless we are “lucky” enough to get a diagnosis of one of the serious outcomes of chronic Lyme: MS, ALS, Alzheimer’s, Cancer. Even then, we’re told, “See? It wasn’t Lyme after all.” The media will only cover the “fluff” of personal stories, and not the real reason we are in this unfathomable situation. “We need more research! We need more antibiotics! We need bills to protect doctors,” go the chants. NO. That is not what we need.

We need healthy human beings to open their eyes, understand the facts and grasp the truth. Please. It is not beneath us to beg. We are already at rock bottom.

The Testing: An Introduction

According to the Centers for Disease Control (CDC), an estimated 300,000 people per year contract Lyme disease in the U.S. (1).  That makes Lyme six times more prevalent than HIV/AIDS (2), yet HIV funding eclipses that of Lyme disease by nearly 135 times (3).

Family, friends, employers, doctors, everyone…we need you to understand WHY Lyme cases are vastly underreported. The only diagnostic test endorsed by the CDC is known as the “two-tier” protocol, or the “Dearborn standard” depending on who you ask. Basically, if you go to a doctor with a known tick bite or a bulls-eye rash, you might be lucky enough to be identified as a potential Lyme case.

On the off-chance that actually happens, the doctor would likely take one of these actions:

  • In extremely rare cases, he might prescribe two or three weeks of doxycycline, the standard antibiotic treatment for suspected early cases of Lyme.
  • In some cases, he might prescribe a single “prophylactic” dose, which is woefully inadequate for eradicating the infection even if it is caught early.
  • In most cases, the doctor will either deny that Lyme is a possibility or opt for a “wait and see” approach. This is a self-fulfilling prophecy, as you will see by reading on. Actual cases go undiagnosed, leading to the false belief that Lyme disease is rare, and in some places thought to be non-existent.

Now, let’s take a closer look at the possibility that the doctor might actually decide to run some tests. That’s where the “two-tier” test comes into play.

Tier one is called an Enzyme Linked Immunosorbent Assay (ELISA). The ELISA looks for non-specific antibodies in the blood. It’s supposed to be a “screening” test, and if the patient produces enough antibodies, he or she wins the jackpot and gets the opportunity to have a Western blot done—the second tier of testing.

Tier two, the Western blot, is designed to identify specific anti-borrelial antibodies in the blood. The CDC’s surveillance criteria, which they state are NOT supposed to be used for diagnosis, require two out of three specific IgM (acute infection) antibodies or five out of 10 specific IgG (past infection) antibodies. But doctors use the surveillance criteria for diagnosis, anyway, and end up thinking that actual Lyme cases are very rare. Need I state that with an AIDS-like disease, “immune deficiency” means that a person lacks antibodies?

Am I making myself clear? This disease is like AIDS, but the only tests used to diagnose it do not work, and doctors are trained to look away—nothing to see here. That leads to accusations of fakery, hypochondria, and ultimately, abandonment by family and friends. And the most horrific pain, anguish, loneliness and despair that you can imagine. Depression. Suicide. Would someone be there for you? Would you be there for someone? I’m sure my dear readers would make the right choice. Right? Make the honey toast. Then go a step further.

Consider the Part About the Fraud

The two-tier test protocol is a fraud.

The ELISA was designed to detect only HLA-linked (genetically predisposed) arthritis, or hypersensitivity, cases, which account for about 15% of all cases. Where does that leave the other 85% who don’t have arthritis? You guessed it: they are the ones with an AIDS-like disease. How do we know this?

When certain CDC officers saw the potential market size for drugs and diagnostics (look, ma—300,000 per year!), they decided to do some product development. That involved coming up with a vaccine, even though, at that time, it was well known that Lyme disease is actually a “relapsing fever,” making a vaccine impossible. The nature of relapse is such that the borrelia organism—a spirochete, which is not a bacteria, but its own phylum—undergoes antigenic variation, or the ability to change the expression of its outer surface proteins and “bleb” or shed them to evade the host’s immune response.

If the organism is constantly changing and shedding its outer surface proteins, it is a moving target for the immune system. This is why a vaccine is not possible. This cabal who decided it would be a great idea to make a Lyme vaccine also thought it would be brilliant to select just one of those outer surface proteins, Outer Surface Protein A (“OspA”) to use as the antigen in the LYMErix vaccine.

Unfortunately, OspA is the very antigen that is responsible for the AIDS-like illness in 85% of its victims. But, no worries: there was a plan to fix that little marketing problem.

How it All Went Down

During the late 1980s to early 1990s, the bar for getting a diagnosis was much lower, and was based (correctly) on Lyme being a relapsing fever organism. The CDC’s own diagnostic standard of performing repeat Western blots to look for new IgM bands was due to the knowledge that not all spirochetes would be killed by antibiotics, and new bands would appear as a result of new antigens being produced by the spirochetes. This came out of CDC officer Allen Steere’s own, 1986, published observations of the serology over time.

In 1992 Steere went to Germany to falsify this case definition such as to say, “No longer do you need repeat Western blots to look for new IgM bands; you instead need to have several late Lyme arthritis bands (HLA-linked hypersensitivity or allergy)”—excluding all of the neurologic cases, which he knew to be the most serious outcomes of Lyme.

Out of his Europe trip, he published two articles, neither of which is available free, full-text online:

  1. “Western blotting in the serodiagnosis of Lyme disease”  (included in the CDC’s Dearborn booklet)
  2. “Antibody responses to the three genomic groups of Borrelia burgdorferi in European Lyme borreliosis” (not included in the CDC’s Dearborn booklet)

The first one was included in the booklet from the CDC’s 1994 conference in Dearborn, Michigan, which has come to be known simply as “Dearborn.” The second report was not included. I’ll get into that after a brief explanation of Dearborn.

meme_Dearborn1The Dearborn conference was presented as a meeting to standardize the method of diagnosing Lyme, but what it became was a farce in which those involved in the LYMErix scam—CDC officers—pushed through a new method of interpreting the testing. By doing so, they effectively changed the definition of Lyme disease from relapsing fever neurologic disease to a disease of an arthritic knee. It is no surprise that the labs that participated did not agree with the “consensus” recommendation, nor is it a coincidence that they had an average accuracy rate of 15% with the new method.

Back to the reports: Why is only the first Steere report included in the Dearborn booklet? Because the second one, “…European Lyme borreliosis,” reveals how Steere committed research fraud to falsify the current case definition, leaving OspA and B out of the antibody testing. (OspA and B are encoded on the same short section of free floating DNA called “plasmids,” so you can’t leave out one without the other).
He did this by using high-passage strains, which drop plasmids, and by using recombinant OspA and B proteins without the tri-palmitoyl group (the 3 fatty acid groups), which are necessary to produce antibodies. The result was that OspA and B were fraudulently missing from the Dearborn diagnostic panel.

meme_Steere1Additionally, Steere proposed adding the first-tier ELISA, while he knew that neurologic Lyme was mostly antibody-negative since he had published about it in 1990. He used the Volkman-Dattwyler “seronegative Lyme assay” (which looks for cellular rather than humoral immunity), and arbitrarily raised the cut-off for the ELISA to exclude all neurologic cases.

Welcome to Starship Lyme Enterprise: Motive

To summarize Steere’s European shenanigans, he falsified the case definition for Lyme, leaving out OspA and OspB, known to be “primary immunodominant antigens,” and artificially raised the cutoff on the ELISA (ruling out neurologic cases), and did so because:

  1. You never test for a disease with the same antigens as the vaccine. If 85% of cases could no longer be detected, the vaccine would be declared “safe” in trials.
  2. If it was known that borreliosis and other fungal-antigen-laden tick-borne infections were mostly antibody-negative, everyone would know that the vaccines and test kits were useless, and
  3. What was to happen after an OspA vaccine was on the market—a monopoly on all vector-borne diseases testing, blood and DNA opportunities in the blood, such as HLAs (“ethnic bioweapons”), and new test kits and vaccines for all the new diseases to come along (such as babesia, new borrelia, viruses, fungi, etc.).

All of this—getting a fake vaccine out there—was for the intended LATER monopoly on American and Canadian blood testing for all vector borne diseases. It was a whole new genre of vaccines profiteering. All of it was to be owned by the RICO enterprise originally headquartered at New York Medical College, called the American Lyme Disease Foundation (ALDF.com).

They even called themselves an “enterprise” (Arthur Weinstein) and said that tick-borne disease $$$ opportunitie$ were “a rich vein of gold from which to mine virulence determinants” (CDC officer Alan Barbour).

Consensus or not, we were force-fed this change at Dearborn, and LYMErix was full steam ahead. The vaccine trials were declared a success—85% effective!—and LYMErix hit the market in 1998.

It didn’t take long before adverse event reports started rolling in with horrifying stories of disablement. There were government hearings; a whistleblower presented evidence of OspA being a toxin; and the FDA issued an ultimatum: either pull the vaccine from the market or we will. The manufacturer did, and LYMErix went down in history as having been discontinued due to low sales. Thanks a lot, FDA.

And to this day, kids, we are left with a bogus disease definition, a government-endorsed diagnostic protocol that misses 85% of cases, and a medical system that is rotten to the core for its abuse of victims of AIDS 2.0. The end.

But it Doesn’t Have To Be The End.

Doctors can start treating people with dignity and respect, instead of accusations and belittlement. Family members can start offering help without questioning motives. Friends can employ a “willing suspension of disbelief” just long enough to see the suffering that is going on beneath the spit-shined exterior. Open your mind and your heart to someone who has reached rock bottom, and offer a hand up. We bottom-dwellers are prone to forgetting sometimes that “up” still exists.

Make the Honey Toast.


Helping Lyme sufferers on a personal level will go a long way toward making life worth living, but we also need two things to happen at the federal level.

We need this fraud prosecuted by the United States Department of Justice. A complaint was filed in 2003 with all the pertinent information—everything necessary to prove the crime and its outcome. But here we are, 12 years later, with nothing. No response, no movement, no people getting any better. Three hundred thousand new cases per year. Conservatively.

We believe that with prosecution of the fraud, the door will be opened to research into treatments that are appropriate for an illness that is in the AIDS and cancer class.

Along with prosecution of the fraud, we need the FDA to invalidate the existing testing scheme. Remember that without an accurate test, the sickest 85% of Lyme patients are denied diagnosis, care, compassion, proper treatment, insurance coverage, and even disability insurance, even though they are disabled and can’t (or shouldn’t) work. This is an easy thing for the FDA to do. It need only follow its own rules for the validation of an analytical method—using the real disease definition of relapsing fever borreliosis—to see that Steere’s test method is a fraud.

Once these things happen, Yale University’s involvement will be exposed, along with the only truly valid (by FDA standards) test method in existence, which Yale researchers patented. If you’re interested, look up U.S. patent 5,618,533; they’ve been sitting on it, knowing full well how badly it is needed.

Once all the Lyme crimes are prosecuted and the crime scene cleaned up, then we can get to the business of treating people for what the disease truly is. I keep throwing “AIDS-like” around. I don’t do that to be dramatic. The fact is, there are many, many sources of peer-reviewed research that support this description of Lyme disease. I’ve provided some of these links below.

If you are healthy, or have an arthritic knee, consider yourself blessed. Those of us in the trenches of the Lyme wars are getting weary. We are sick, and yet we go on—what else can we do? I can’t bear the thought of the alternative any longer. Let me be clear: It is NOT okay that people feel they have no choice but to end it all.

If you are healthy, won’t you help us? Will you speak for us when we can’t find the words? Will you stand for us when we don’t have the strength? Will you tell our story as if it were your own? Will you join our ranks before you are forced by Lyme disease to join us anyway?

We have learned the utmost compassion through this journey, and we promise to be there for you when we are able. Toast, or whatever.

  1. http://www.cdc.gov/media/releases/2013/p0819-lyme-disease.html
  2. http://www.cdc.gov/hiv/statistics/basics/ataglance.html
  3. http://report.nih.gov/categorical_spending.aspx

For a downloadable pdf of the complete Lyme Cryme charge sheets, click Charge Sheets


Links to studies from scientists who know what they are talking about regarding Lyme/OspA immunosuppression:

“Endotoxin tolerance is thought to limit the excessive cytokine storm and prevent tissue damage during sepsis but renders the host immunocompromised and susceptible to secondary infections.”

http://www.ncbi.nlm.nih.gov/pubmed/23695305

http://www.ncbi.nlm.nih.gov/pubmed/?term=Redmond+HP+and+tlr2

http://www.ncbi.nlm.nih.gov/pubmed/?term=Baumgarth+and+borrelia

http://www.ncbi.nlm.nih.gov/pubmed/?term=Barthold+and+borrelia

http://www.ncbi.nlm.nih.gov/pubmed/?term=Martin+and+Marques+and+tlr2 (

http://www.ncbi.nlm.nih.gov/pubmed/?term=Harding+CV+and+tlr2

http://www.ncbi.nlm.nih.gov/pubmed/?term=Medvedev+AE+and+tlr2

http://www.ncbi.nlm.nih.gov/pubmed/?term=Hotchkiss+RS%5BAuthor%5D

http://www.ncbi.nlm.nih.gov/pubmed/?term=Duray+and+borrelia

http://www.ncbi.nlm.nih.gov/pubmed/?term=Dattwyler+and+borrelia+and+nk+cells

Benach: Borrelia wreck your brain:

http://www.ncbi.nlm.nih.gov/pubmed/?term=Benach+and+borrelia

Cadavid: Borrelia wreck your brain:

http://www.ncbi.nlm.nih.gov/pubmed/?term=Cadavid+and+borrelia+and+brain

Gary Wormser on how the OspA vaccines in dogs didn’t work and caused immunosuppression:

http://www.ncbi.nlm.nih.gov/pubmed/10865170

Latov on how OspA vaccination caused the same disease as chronic Lyme:

http://www.ncbi.nlm.nih.gov/pubmed/15363064

Marks on how LYMErix caused the same disease as chronic Lyme:

http://www.ncbi.nlm.nih.gov/pubmed/21673416

Mario Philipp on how Lyme and OspA causes immunosuppression with brain inflammation:

http://www.ncbi.nlm.nih.gov/pubmed/?term=Philipp+M+and++tlr2



Categories: Activism, Beaux's Favorites, Lyme Disease

Tags: , , , , , , , , , ,

44 replies

  1. I totally agree with this article 100% I have suffered with Lyme disease but there is another component that was not addressed. I am in a relationship with someone who also has suffered with tick born illness and severe brain infection. He had a pretty good recovery then he got re-infected. The brain infection even worse. His anger is so out of control, his flat effort, his rejection and constantly pushing me away saying he wants to be left alone is devastating. I try to talk to him about it and he gets angry, says he doesn’t know why he is this way and doesn’t care why. I don’t want to abandon him, I have been hanging on but this behavior is so painfully heart braking. I have not heard anyone discussing this issue. Is there any hope?

    Like

    • I’m sorry–that must be very upsetting for you. Yes, the viral CNS infections and associated encephalitis can cause problems like this. You’d have to find a doctor who’s interested in detecting the infections in spinal fluid.

      Like

    • My afflicted daughter reacts like this. She won’t talk about it and I don’t fully understand it. To watch a loved one deteriorate from the wonderful child/woman she once was and not be able to do anything about it is devastating. However, no matter what, I will never abandon her.

      Like

  2. I have never in my life been so isolated, felt so left behind by the world.
    I am living a hell on earth that could not be imagined by someone not experiencing this.
    And the problem is…
    They don’t even try.

    I have never in my life thought so much about ending it.

    Unbearable is my every moment.

    WHY ARE THEY KILLING US?

    WHY DO WE LIVE IN TORTURE?

    WHY DO THEY FORGET ABOUT US as if we never existed?

    Why do they laugh at us, call us nut jobs, sweep us under the carpet?

    WHY DON’T THEY HEAR MY SCREAMS FOR HELP?

    Why am I no longer worthy?

    Liked by 2 people

    • Please don’t lose hope! Knowledge has empowered me. Now that I understand what the disease is, I am trying to empower others the same way. The science is undeniable, and soon there will be tests to detect all of the pathogens. See here: http://www.oxfordjournals.org/our_journals/ofid/caliendo_interview_by_paul_sax_final.pdf It won’t matter if you “have Lyme” when they can diagnose all the other gunk. We are making really good progress. Please join our Facebook group http://www.facebook.com/groups/occupyusdoj Also feel free to share this post. It is meant to be an appeal to family members who should be helping and need to understand why doctors are such a-holes to us.

      Like

    • Marcelle, you are not alone, not forgotten, not unworthy. This world is full of darkness and despair, we were never meant to live like this. I too am isolated and unable to function much, so I relate to your words. I am here to tell you that there is always hope beyond the tortures of sickness and depravity. We are in this together. You are able to help others through your mutual suffering, to be a light for someone who doesn’t have anyone else to relate to or understand how they feel. We need you, you hold value and your light is wanted, always. There is someone right now who needs you, be it the stranger sitting alone on the street, nowhere to go, nowhere to be, nobody to notice if he is here or gone, that person needs you, needs people like you and me. We see and relate to others in ways that most can’t, and that is valuable and so very precious. Never discount a small gesture of true love for another, for even a simple smile can change the whole direction of a person’s life. You are loved and wanted.

      Liked by 1 person

    • We are the second generation of the Tuskegee experiment. We receive no treatment or poor treatment at the beginning and it goes on and on. They have left us to die for what reason? Money!! The government(CDC) finally admits that at least 300,000 people a year come down with Lyme. That is a low estimate. Those in the know figure it is two to three times that amount 600,000-900,00 people a year coming down with Lyme and being given a test that is 15% accurate!

      Like

  3. i have lyme. I was very sick 7 years ago. I want to help do something. Please contact me!

    Liked by 1 person

  4. I live in Louisiana and have Chronic Lymes Disease. I have obtained little to no help for it. It took them over 6 months to diagnose as I detereated. I’m searching help even outside of Louisiana. If anyone can help with this please let me know….

    Thanks,
    Travis Hale

    Liked by 1 person

    • I’m so sorry. You are not alone. It takes most much longer to get a diagnosis. The problem is what to do once you have the diagnosis. Nobody knows how to treat chronic or late-stage Lyme, because the powers-that-be refuse to acknowledge that it is a disease of immunosuppression. According to the research we cite, there may be multiple reactivated herpesviruses along with other opportunistic infections, such as mycoplasma, which adheres to red blood cells, making them unable to transfer oxygen and causing fatigue. I know people who have taken some of these reports to doctors, with mixed success. I’d say if they are already giving you the run-around, it can’t hurt. This UC Davis study partly explains why it’s so hard to score a positive Lyme test–jacked immune system = no antibodies. Best of luck to you. We are fighting this crime every day and won’t stop.

      Like

    • I mean this nicely but it is LYME disease, there is no “s” at the end. There’s a huge online lyme community on facebook, some great people willing to help, share info, be supportive. Hope you can join us ♡

      Like

  5. Hi, again. Sorry about me being a litle messy. I see now the text is the same as in action.lyme. Working over my head with the english-reading. Dont need to post this at your blogg since its probably better to get permission from action. lyme. Sorry again

    Liked by 1 person

    • It’s fine, we work and train together and share data. We are an organization called SASH, Society for the Advancement of Scientific Hermeneutics. We have different styles and thought we should each take the data and frame it in our own way, with our own personal touch. Beaux here seems to have better reach and tells it more interestingly than me, for sure, LOL
      Kathleen (ActionLyme)

      Like

  6. Hi, and thank you so much for the great text. We have this problem in Norway to, and i would really like to get the text translatet into norwegian.To translate the parts with the Tier one -Tier to and the fraud-explanation. I hope to get a company to do it, wil check tomorrow but need to check with you if that is ok. I have been trying to read from crymeDisease and the criminal charges, but it is hard for me to get the whole story. So then your text came more easily to understand and if translatet it will be put in the debate here in Norway. As for now Norway are in a trail with one Doctor Luneng against the state for taking away his Doctor licence because of longterm-treat with antibiotics for longtime-sick Boreliose(?) pasients.

    Liked by 1 person

    • Part of the problem with this Luneng study is the in that one here will not focus on totally obvious disease mechanisms.

      Mechanisms that was revealed through LYMErix vaccine. So they would OspA and those who got the vaccine came back with symptoms that show they got the same disease. It acted thus not about the bacteria but Outer Surface Protein A in case LYMErix.

      Disease Mechanisms that unites millions of people and that goes as follows. Mechanisms that did that in the old days called this for relapsing FEVER. If one understands the logic so many words relapse with a treatment that does not go to the core of the issue. Rituximab shows what this is about.

      By focusing too much on Borrelia some of the logic dissapear – because this is about contaminated vaccines, molds and other immunosuppressants which can make you one day get a B cell issues that make you eligible for a cancer medicine even in the future. ( to simple explained and put on the tip)

      Is a supporter of research and that doctors who go to war must be defended, but if forgets to pay attention in class about crusial mechanismes, this can quickly become a throwback and more lengthy than a big step forward. I think it lacks focus on the virus that leads to that instance epsteinn Barr, CMV and respectively – 6.

      SASH has presented massive evidence – see including the AIDS issue Luneng embarked recently. It is a result of the revelations Kathleen Dickson made through stopping vaccine and submit evidence of Borrelia vaccine is counterfeiting.

      So if not Luneng pay attention to this and talks more about the viruses and the mechanismes i dont find it helpful in the long run to support him more then the evidence of the disease. But i have a hope that focus more and more will come and for sure it will be apriseated if he starts hammers these proves along with SASH.

      Like

  7. After that long winded comment I forgot the best part. Because I stuck around to love my loviest husband…we are celebrating our 8 year anniversary next week. Those you love are worth giving them your all.

    Liked by 1 person

  8. I just wanted to thank you for writing this and sharing this info for the world to see.
    I am unsick. I don’t have Lyme or anything else wrong with me other than having awful astigmatism. But I have seen what Lyme does to people. My husband was diagnosed three years into our marriage. It presented suddenly (or so we thought) when his knee became the size of a large melon and the pain was such that he couldn’t move. In th time I had known him, he never had a bullseye rash. He never had a fever. He had back pain and knee pain before his knee blew up but he thought it was just from basketball and his genes (his family has knee problems).
    Lots of doctors and tests later he was diagnosed with Lyme. He was given 3 weeks of doxy and was told he would be fine. We didn’t know any better at the time to push back because we both had always heard that Lyme was no big deal.
    After that didn’t work we found a new ID doctor that offered the IV antibiotics. Insurance wouldn’t cover it and we couldn’t afford it. So he ended up taking amoxicillin, orally, 10 500mg capsules a day, for 9 months.
    His knee swelling went down but the pain remained. The brain fog made it impossible for him to work and made it dangerous for him to be left home alone. After he left the oven on the shower running for an entire day, I decided to work something out with my employer to work from home. Thank goodness they agreed!
    During this whole time I had to help him with literally everything. He needed help getting into and out of the shower. He needed help dressing. He needed help getting up and down the stairs. I was also now the sole earner and worked myself ragged to get promotions and raises as frequently as I could. On top of all if that, I tried really hard to keep the house in some semblance of order. All chores involving carrying things, going up and downstairs, bending over, scrubbing on hands and knees…you get it.
    I had an out if I wanted it. My husband actually asked me to leave him because he didn’t want me to waste my life taking care of him. Just as you, the concept of abandoning someone you love because of not wanting to take the time and effort to help them in their time of need is simply BAFFLING.

    I couldn’t conceive of it. I will tell you what I told (and still tell) him. “I don’t mind taking care of you, I just wish it wasn’t necessary.”

    He can’t help that he got sick. But he would not have had to go through all he has if the medical professionals an the public was aware of treatment that actually works and an accurate and reliable test. I know countless others go through what he has and worse. I consider us lucky that he has recovered as well as he has though he is still only at 60% compared to before he was diagnosed.
    I raise awareness everywhere I go. My employer has fundraisers every May for Lyme disease awareness month. I wear green glasses to raise awareness. It’s a great conversation starter. 🙂
    This comment was a long winded way of saying: There are unsick people out there who care deeply about helping those with Lyme. We want to see this cluster fixed, justice served to corrupt and greedy people that stall progress, a test that actually works, and most of all…recovery and a life not filled with pain and confusion. A life filled with love and support.

    Liked by 2 people

    • Thank you, thank you, thank you. Your husband is so very fortunate. My husband does a great job of picking up the slack for me, although I do still work, for now. I really don’t know how I would do it without him. He has proven to be devoted, supportive and a believer, most of all. Thank God for people like you and my husband. I have so very many friends and acquaintances who are not so lucky, and my plea is for someone to help them…either directly or indirectly. This can’t continue any longer.

      Like

  9. My brother suffered from AiDS. I’ve also often wondered about Lyme being similar. It hides & protects itself. There are multiple & common opportunistic diseases, including parasites, other viruses, candida to name only a few. Thank you for summarizing such a viscious (can’t spell anymore). It brought tears to my eyes. .. As it’s so accurate!

    Liked by 1 person

  10. Brilliant!! The writing, explanations, descriptions, details, reasons, etc., all rolled into one. As a lymie, it took me awhile to get through it, but I couldn’t stop reading, once I started. I think you hit all the major points, and did so in a way that’s alot easier to understand than most explanations I’ve come across, in the past 17 years. I can’t even imagine the toll it took on you to put this together. I’m exhausted just from reading it. 🙂 A big heart-felt thank you and my last 2 spoons for you! Well done.

    Liked by 2 people

    • Thank you so much! I have the best teacher ever. 🙂 I started this one a month ago–you may have noticed I didn’t post anything for that whole month! (I had lots of other stuff going on, too, and had to take a break.) Yeah, it was tough, but there are two people in particular whom I’d dedicate this post to: one who inspired it in the first place, and one who inspired me to finish. Thank you for pushing through it. I know how much work it takes for us Lymies to read and comprehend such lengthy and technical material. I wish you bonus spoons for the weekend!

      Liked by 1 person

  11. I clicked like and read some of this last night, and finished it this morning. WOW – you tackled a lot of Lyme issues here in this post, but it all goes together… Good job.

    Liked by 2 people

  12. Thank you for the on point and very honest, moving piece. It’s very true all that you say. Sad.

    Olivia .

    Liked by 2 people

  13. What an accurate well written essential piece of information. I have been diagnosed with 23 different autoimmune diseases, including fibromyalgia, CFS, IBS, Hashimotos, lupus,chronic Lyme, babesia and Bartonella. I have been neglected, mistreated, poisoned by doctors for over 38 years….the insanity needs to stop. I was bite in New Jersey but live in Canada where we are subjected to the same inaccuracies spewed out by the IDSA and the CDC…this is a global pandemic and will debilitate mass populations in every country…this is the plague of the 21st century.

    Liked by 2 people

Trackbacks

  1. Help Wanted: Lyme – AIDS 2.0 | Slices Of Lyme Pie
  2. Occam’s Razor: All We Have are Dull Blades | BLAB: The Bad [Lyme] Attitude Blog
  3. BLAB: The Bad [Lyme] Attitude Blog
  4. Rainbows & Bunnies | BLAB: The Bad [Lyme] Attitude Blog
  5. Occam’s Razor, or If It Walks Like a Duck… – crymedisease
  6. Imagine being very sick… | Lyfe

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s

%d bloggers like this: