balancing act

I got my booster shot yesterday. I’d forgotten how much each vaccine stirs up my immune system. It’s not major, not in the context of Lyme, but it is just one more insult to my body. Sometimes I get sick of always monitoring my health. Not in the “I take vitamins, exercise, eat right, and get a good night’s sleep” way, but a daily assessment of what is going on with my body. There are the decisions on which supplements to take to keep me on an even keel.  More decisions on which herbs to have for the co-infections to keep them in check. I often have to figure out what else is going on, too. Is my digestive system crap today or am I good? How is that stupid chronic cough that is directly tied to my gut going? Is my liver going to protest from endotoxin overload today? It’s exhausting, especially when compounded by the threat COVID and  reactions to vaccines.

I am not against vaccines. On the contrary, with my immune system, I require them. I just wish they weren’t one more thing to upset the delicate balancing act of staying well and stable. This is the norm for most chronic Lyme patients, always putting out fires just to have new ones pop up. I’m trying to think of another disease that matches the sheer scope of systemic problems. I had to look up the systems of the body and there are ten: skeletal, muscular, nervous, endocrine, cardiovascular, lymphatic, respiratory, digestive, urinary, and the reproductive system. On any given day, I can have problems with four or more of these systems. Not huge, life-threatening problems ( I don’t think!), these are erratic, maddening shocks that mentally and physically wear me down.

But getting COVID could be very serious for me, so I take the vaccines and try and figure out how they affect my body and then I try to regain my balance.

That brings me to another balancing act: the CDC’s handling of COVID. They have managed to infuriate nearly everyone with their ever-changing guidelines and recommendations.

I’ve been mad at the CDC for over six years now. The CDC has let me down at nearly every level during my illness. They have suppressed research that could help me and thousands of other Lyme sufferers. They deny the existence of chronic Lyme and actively go after physicians who will treat chronic Lyme. They have knowingly undercounted cases of Lyme disease. In the past several years, they have grudgingly admitted that they undercounted and are slowwwwwly starting to recognize and collect data on chronic Lyme cases.

This puts me in a quandary when it comes to COVID. It is difficult to put total trust into an institution that has so clearly failed me. I have to remind myself that COVID is different. There are many, many scientists and pharmaceutical companies working with the CDC to figure out vaccines, tests, and public policy. But there are just as many who aren’t, and there are politicians using COVID for political points, not for the public good.

I have to remind myself that the CDC is a big, sprawling entity with around 15,000 employees whose main goal is public health and safety.  Lyme disease is one tiny part. Yet there are troubling signs that indicate the CDC has become more and more compromised by politics, pharmaceutical companies, insurance companies, and rifts in the medical community itself.

In the age of COVID, this influence is particularly noticeable. During TFG’s tenure, the CDC had to tailor their statements and recommendations to align with the administration’s views. Now we have a less hamstrung agency that nonetheless continues to get the tone wrong. We all get it: this is a new disease with very little data to go on. We don’t know who is vulnerable or how to successfully test and vaccine everyone. Protocols and recommendations change with both new strains and new data that informs new guidelines.

All of that leaves most of us exhausted, grumpy, and unsure what to do. They are trying to balance public policy to keep businesses and schools open while protecting us. But who is their real master? Their recommendations are being subverted at state and local levels, often kowtowing to political pressure rather than public good.

Lyme disease faces similar challenges. Physicians in some states have been criminally charged for treating chronic Lyme patients. There is a constantly changing narrative on what it is and how to treat it. I know I get extremely angry at the lack of a consensus about diagnosis, treatment, and outcome. At the same time, I am denied insurance, disability, and treatments because they have been deemed by the CDC as not real.

This leaves Lyme patients distrustful of their advice and ripe for scams and unproven, sometimes dangerous “cures.” I realize this dilemma aligns with certain arguments posited about COVID, and therein lies the danger of the insidious pattern of science denial. If we had research funds going into Lyme for the past thirty years and the CDC kept us updated with their best recommendations, maybe I wouldn’t have this distrust. If powers behind the CDC allowed the agency to operate on the basis of protecting public health above profits, egos, and politics perhaps we’d be in a better place with COVID.

In many ways, I feel their balancing act is much more difficult than mine, because ultimately, I have placed myself outside the system and I am the one in charge of my health decisions. I try to base those decisions on facts and scientific evidence, but often times there are none, not because Lyme is a new disease, but because there is a willful, systematic denial of the existence of the disease. Huh. Perhaps our efforts are more alike than I thought.

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