People with Lyme disease often lead a life of extreme isolation. They’re victimized over and over again, each time adding to the pile of trauma. It’s no wonder they frequently end up withdrawing entirely. My friend Lori Dennis, author of Lyme Madness has said,
“Lyme sufferers are victimized in at least FIVE different ways: 1. by the disease itself, 2. by doctors who turn their backs, 3. by loved ones who roll their eyes and walk away, 4. by insurers who refuse to provide coverage, and 5. by the CDC and IDSA who together say that chronic Lyme does not exist.”
All of these are tough to handle, but the one that does the most severe emotional damage is number three: abandonment by family and friends. I am convinced that no Lyme Cryme victim is immune to the emotional assault that is inflicted by the very people who, if they truly loved us, would not be kicking us while we’re down, but instead lifting us up in compassion.
Yes, this is assault. It is a form of emotional abuse that is unjustified no matter the excuse. And there are many excuses.
You aren’t really that sick.
You’re just trying to get all the attention.
You’re just trying to shirk your responsibilities.
You’re avoiding me on purpose.
You always cancel plans.
You don’t return phone calls or messages.
It’s always SOMETHING with you.
You’re too needy.
You just need to see a shrink for your anxiety.
You’re making yourself sick.
You’re too negative to be around.
Chronic Lyme isn’t real.
Your victim mentality is too depressing for others.
If you’d eat healthier, you wouldn’t be sick.
If you’d take better care of yourself, people would want to be around you more.
All you talk about is “Lyme, Lyme, Lyme.”
You’re being selfish.
You must want to be sick.
I read about Lyme disease and I know you can’t still be sick.
If you refuse to go to a “real doctor,” it’s your own fault you’re sick.
The funny (/not funny) thing is, you can think that you’ve found solace in a caring community online, but then, deja vu. The same thing starts happening, except now it’s perpetrated by other Lymish. Make that the #6 victimization.
You’re not trying hard enough.
You need to read so-and-so’s book.
Have you followed this protocol? That protocol?
Are you drinking alkaline water?
Have you cut gluten? Sugar? Dairy? Soy? Meat?
Have you been to this LLMD? That LLMD?
Have you tried rifing? Infrared sauna? Advanced Cell Training? Probiotics? Cannabis? Essential Oils? This supplement? That supplement?
Why not do a GoFundMe?
You’ll never get better with that attitude.
Just eat vegan/paleo/alkaline.
Everyone’s different. You just need to keep trying and find the right combination.
I’m better. Why aren’t you?
Victim blaming, no matter who dishes it out, is still victim blaming. And I would argue that victim-on-victim victim blaming is just as bad as–if not worse than–the assault we get from supposed loved ones, or even the medical field itself. At the point we get involved in the Lyme social media community, many of us have already been victimized five different ways. Now we’re subjected to a caste system among victims where you’re judged on money spent, attempts made, sunny disposition and what you can afford to eat and have the strength to prepare.
I am here to tell you that I will always fight for the sickest, most destitute among us. Why? Because it’s the right thing to do. Yet, there seems to be some confusion out there, about the reality of this disease, and what constitutes a good faith effort to get better. Who is to judge what constitutes a good faith effort? Other Lymish, of course. The ones who think that if you’re too sick to work and too poor to eat organic veggies, you should just go out back and plant a friggin garden. Don’t have space to till and plant and weed and water? No problem. Just go down the road to the nearest farm and “ask to glean the fields, like Ruth in the Bible. ❤️” Yes, that is a direct quote. What? You can’t afford a car to get there? Then walk your sick butt down there! I am not kidding. This is a real conversation that happened.
God forbid the nearest farm only grows GMO corn, or wheat full of Satan’s gluten. It would suck to trudge all the way home with your pockets full of wheat, looking exactly like the Scarecrow with AIDS, stumbling down the road, then grind your wheat into flour with your bare hands so you can make it into a loaf of organic bread, just to find out that he farmer lied about the gluten it isn’t organic after all.
Dangit! Compared to that ordeal, Lyme itself hardly sucks at all. Perspective, people!
What’s worse are the ones who insist that you just haven’t found the right “LLMD.” It is strictly prohibited to make any claim that any “LLMD” was unsuccessful in treating your case. Because your case couldn’t possibly be worse than MY case, and he got ME better, so you must be doing something wrong. And NO, Doctor X is such a good man that he would NEVER dismiss a patient when the patient is at death’s door. That NEVER happens. Even though it does. To the Lymish in the lowest caste.
What does it mean to fight for the sickest among us–those most in need? It means fighting for everyone. EVERYONE. And that means telling the truth that nobody else wants to tell about what the disease is.
It’s simple. Spirochetes disseminate to the lymph nodes, bone marrow, spleen and brain within a week of infection (1). Lymph node germinal centers, where B cells are supposed to mature and be assigned an immune system function, are rendered incompetent (2). Meanwhile, the toxic triacyl lipoproteins that are shed by spirochetes on blebs of their outer surface get to work causing tolerance and cross tolerance (2,3,4), AKA shutting down the immune system (5,6). There is generalized immune suppression at the same time there are brain inflammation and neurologic complications (7,8,9,10). Opportunistic infections take hold and herpesviruses reactivate (11,12). Half the cases don’t recover fully, regardless of treatment (13,14,15). The outcome is cancer-like (16,17). “Lyme disease” is a living hell.
Fighting for everyone also means telling the truth about why the testing doesn’t work. (The CDC, IDSA, Yale and ALDF crooks called those toxic triacyl lipoproteins a vaccine and it gave people the same disease as injection by tick bite. They rigged the testing so the immune deficiency cases would not be diagnosed.)
Fighting for everyone also means telling the truth about why we’re looking to Dr. Facebook for cures, year in and year out, til death do us part. It’s because antibiotics are ineffective in half the cases, and the disease mechanism points to a treatment from oncology. Name one doctor who understands that this is the case, and has the decency to be straightforward about his ability to “cure” it with the currently available methods.
If there was a treatment available that actually worked for most victims, would we all be desperately consulting Dr. Facebook? It is important to understand that at TruthCures we do not suggest that people should not seek treatment. We simply cannot provide treatment advice because we are not licensed medical practitioners. It would be extremely unethical for any unlicensed person to provide medical advice on Facebook. Yet we see it all the time, and we see patients shaming other patients over unsuccessful attempts at self-treatment. “You didn’t try hard enough. Your negativity is holding you back. Grow your own organic vegetables and juice them.”
We need to stop all six forms of victimization. We need to prosecute the criminals who first victimized us with their fraudulent redefinition of the disease to accommodate their patents. We need to do this now, and we need to do this for ALL victims.
1. Lymphoadenopathy during Lyme Borreliosis Is Caused by Spirochete Migration-Induced Specific B Cell Activation Stefan S. Tunev1,2¤, Christine J. Hastey1,4, Emir Hodzic1, Sunlian Feng1, Stephen W. Barthold, Nicole Baumgarth
2. Suppression of Long-Lived Humoral Immunity Following Borrelia burgdorferi Infection Rebecca A. Elsner, Christine J. Hastey, Kimberly J. Olsen, Nicole Baumgarth Published: July 2, 2015http://dx.doi.org/10.1371/journal.ppat.1004976
3. J Infect Dis. 2006 Mar 15;193(6):849-59. Epub 2006 Feb 8. Borrelia burgdorferi lipoprotein-mediated TLR2 stimulation causes the down-regulation of TLR5 in human monocytes. Cabral ES1, Gelderblom H, Hornung RL, Munson PJ, Martin R, Marques AR.
4. Borrelia burgdorferi-Induced Tolerance as a Model of Persistence via Immunosuppression
Isabel Diterich1, Carolin Rauter1, Carsten J. Kirschning2 and Thomas Hartung1,*
5. Lyme Cabal members Gary Wormser and Allen Steere – and even the “CDC officer” Paul Mead – finally admit Late Lyme and LYMErix diseases are immunosuppression outcomes; say “TLR2/1 agonism” (immunosuppression) is probably the “more important” driver of the disease outcome. Nat Rev Dis Primers. 2016 Dec 15;2:16090. doi: 10.1038/nrdp.2016.90. Lyme borreliosis. Steere AC1,2, Strle F3, Wormser GP4, Hu LT5, Branda JA6, Hovius JW7, Li X8, Mead PS9. https://www.ncbi.nlm.nih.gov/pubmed/27976670
6. Seronegative Lyme disease. Dissociation of specific T- and B-lymphocyte responses to Borrelia burgdorferi.
Dattwyler RJ1, Volkman DJ, Luft BJ, Halperin JJ, Thomas J, Golightly MG.
N Engl J Med. 1988 Dec 1;319(22):1441-6.
7. Latov, N., Wu, A. T., Chin, R. L., Sander, H. W., Alaedini, A. and Brannagan, T. H. (2004), Neuropathy and cognitive impairment following vaccination with the OspA protein of Borrelia burgdorferi. Journal of the Peripheral Nervous System, 9: 165–167. doi:10.1111/j.1085-9489.2004.09306.x
8. Neurological complications of vaccination with outer surface protein A (OspA). Marks DH1. Int J Risk Saf Med. 2011;23(2):89-96. doi: 10.3233/JRS-2011-0527
9. J Neuropathol Exp Neurol. 2006 Jun;65(6):540-8. Borrelia burgdorferi Induces TLR1 and TLR2 in human microglia and peripheral blood monocytes but differentially regulates HLA-class II expression.
“These results show that signaling through TLR1/2 in response to B. burgdorferi can elicit opposite immunoregulatory effects in blood and in brain immune cells, which could play a role in the different susceptibility of these compartments to infection.”
10. Parthasarathy G, Philipp MT. Receptor tyrosine kinases play a significant role in human oligodendrocyte inflammation and cell death associated with the Lyme disease bacterium Borrelia burgdorferi. Journal of Neuroinflammation. 2017;14:110. doi:10.1186/s12974-017-0883-9.
11. Hutchins NA, Unsinger J, Hotchkiss RS, Ayala A. The new normal: immuno-modulatory agents against sepsis immune suppression. Trends in molecular medicine. 2014;20(4):224-233. doi:10.1016/j.molmed.2014.01.002.
12. Walton AH, Muenzer JT, Rasche D, Boomer JS, Sato B, et al. (2014) Reactivation of Multiple Viruses in Patients with Sepsis. PLoS ONE 9(6): e98819. doi:10. 1371/journal.pone.0098819 http://journals.plos.org/plosone/article?id=10.1371/journal.pone.0098819
13. The Clinical Spectrum and Treatment of Lyme Disease
ALLEN C. STEERE, M.D., STEPHEN E. MALAWISTA, M.D., NICHOLAS H. BARTENHAGEN, M.D., PHYLLIS N. SPIELER, M.D., JAMES H. NEWMAN, M.D., DANIEL W. RAHN, M.D., GORDON J.HUTCHINSON, M.D., JERRY GREEN, M.D., DAVID R. SNYDMAN, M.D., AND ELISE TAYLOR, B.A
THE YALE JOURNAL OF BIOLOGY AND MEDICINE 57(1984),453-461
14. Rev Infect Dis. 1989 Sep-Oct;11 Suppl 6:S1518-25.
A perspective on the treatment of Lyme borreliosis.
Luft BJ1, Gorevic PD, Halperin JJ, Volkman DJ, Dattwyler RJ.
15. Bouquet J, Soloski MJ, Swei A, Cheadle C, Federman S, Billaud J-N, Rebman AW, Kabre B, Halpert R, Boorgula M, Aucott JN, Chiu CY. 2016. Longitudinal transcriptome analysis reveals a sustained differential gene expression signature in patients treated for acute Lyme disease. mBio 7(1):e00100-16. doi:10.1128/mBio.00100-16.
16. Clinical Pathologic Correlations of Lyme Disease by Stage
PAUL H. DURAY
Department of Pathology
Fox Chase Cancer Center Philadelphia, Pennsylvania 191 I I
ALLEN C. STEERE
Department of Internal Medicine Division of Rheumatology Tufts University School of Medicine Boston, Massachusetts 02111
17. The Clinical Spectrum and Treatment of Lyme Disease
ALLEN C. STEERE, M.D., STEPHEN E. MALAWISTA, M.D., NICHOLAS H. BARTENHAGEN, M.D., PHYLLIS N. SPIELER, M.D., JAMES H. NEWMAN, M.D., DANIEL W. RAHN, M.D., GORDON J.HUTCHINSON, M.D., JERRY GREEN, M.D., DAVID R. SNYDMAN, M.D., AND ELISE TAYLOR, B.A. THE YALE JOURNAL OF BIOLOGY AND MEDICINE 57(1984),453-461
Categories: Lyme Disease