I suppose this is a pretty loaded question. I figured once again, I would do some research and see if there was anything to bring light to the subject. Well… this is a first. I couldn’t really find a whole lot of anything! But I picked through my bug riddled brain and this is what I came up with using my own knowledge and personal experience.
Some people that I know have been misdiagnosed for twenty years, and even on treatment remain pretty functional, even owning and running a business. I know another woman who does not recall when she contracted Lyme, but her daughter is very, very sick and has been struggling for years, so she decided to get tested. Positive. Decided to never seek treatment. Not symptomatic, going among her daily life.
I know of people that have had a really hard time with misdiagnoses for years, that are still having a hard time, even a few years into treatment. I also know someone that has likely had Lyme for a few years and in a very short period of time, maybe couple months at most, was out playing sports and doing things she loved again and has been symptom free ever since.
I have gotten comments such as “my son had LYME’S (I hate it when people do not even know it is LYME… no apostrophe S… sorry Lyme rage trigger haha) and all he got was a rash and he got 14 days of treatment and is all better!” Or, “You’re case is the worst I have ever seen, I didn’t know Lyme could be that bad!” Or “Maybe you need to try doing this, or this, or that instead and you will get better, and that’s why you’re still sick!” Also, another annoying thing to say, Mr./Ms. , Ididn’tknowyouaremyfuckingdoctor. Pshh.
What makes certain cases worse than others and why is every case different? I don’t quite get it.
I ask myself this every day. Not a “why me”, because that’s not my attitude and considering what I have been and gone through as I think I handle myself pretty darn well. I know I am by no means the worst case of Lyme as there are far worse off than I am. I was cared for and treated pretty aggressively due to my symptoms before I began to see Dr. J and couldn’t understand why I was still so sick and not seeing any signs of improvement.
But WHY, although I had Lyme-like quirks before hand, like passing out and never having reflexes as a kid, did I crash in my early 20’s and then have shit completely hit the fan once I turned 25? It’s not like I was in horrible shape as I was pretty active, and although I have my moments, I generally only eat good and nutritious food. Why did I develop verbal and physical tics? Although not unheard of, it is a pretty unique manifestation of Lyme.
To a certain extent, as I have said how long you have had this disease may or may not have a huge roll in this, at least in the severity of symptoms. I have seen it with my own eyes. It might take a long time to be in a state of remission, but some are lucky and aren’t completely debilitated in the process. Some of the people that have had Lyme for years upon years will have a higher spirochete load to kill, so treatment length and severity of symptoms could come into play, making you more likely to be one of those people with much worse symptoms than others.
Reason being, Lyme has obviously spread throughout your body. Into your deep tissues, joints, into your brain, your organs, your heart…. everything. I think a big factor is how much LB has penetrated the blood -brain barrier. There are so many neurological symptoms that can cause an abundance of symptoms such as cognitive disorder, MS-like symptoms, encephalitis, among many other issues that seem to cause a patient to be far worse off than someone that does not.
We all also have such a wide range of symptoms! It is amazing how many symptoms there can be having Lyme disease. There are people have flu-like symptoms that will just not go away, people with only joint pain or muscle pain and no other symptoms, then you have the people that have seizures, have difficulty walking or cannot walk at all, those that are extremely fatigued, people with behavioral changes, and much more. So many diseases mimic Lyme too. There are so many different symptoms in all of this disease that range from mild, moderate, to severe. Although us Lymie’s are brought together because we are the same in a lot of ways, we are completely different. I have not heard of one person that was the exact same as me.
How we respond to treatment, or HOW we are being treated can come into play as well. There is no set blueprint for remission, and each patient is different and should be treated in such a manor. Some people could be worse because a treatment is too aggressive for them, and are having severe herxes. Some of the people that have had Lyme for years upon years, will have a higher spirochete load to kill, so treatment length and severity of symptoms come into play.
Some people might be sick for much longer, have worse symptoms, and be “stuck” and not getting better because of their treatment protocol. It might not be aggressive enough for what they need, or are not utilizing some sort of a combination therapy to attack Lyme in all its forms.
Other deficiencies and abnormalities! If you haven’t, read my “Common Abnormalities Found with Lyme Disease” (might be called slightly different) entry, as there are so many deficiencies or abnormalities that can cause you to be much worse than someone else. Magnesium levels, genetic mutations, vitamin D, candida issues, heavy metal toxicity, among many other considerations. If your immune system isn’t working, you are going to be much sicker and symptomatic than someone that is fighting Lyme with a strong immune system. A weakened immune system makes a huge difference in your symptoms. Treat your system as a whole, just don’t attack the Lyme and you might see better results and your symptoms might not be quite as bad as they once were.
Stress. It’ll get you. How much stress in your life will play a factor in how you are doing, symptom wise. It can very much make you worse. If someone upsets me or something stresses me out, not only does my IBS kick in full-gear, my legs turn to complete Jell-O and I pretty much can’t do anything. Tremendous stress for me at least, usually sends me into full panic attack mode and I wind up having a seizure of sorts.
Another part of the picture, which could be a BIG part of the picture is if there is co-infections to add in the mix. These co-infections can cause worse and more severe symptoms than Lyme disease can. If you are having more severe symptoms, with key symptoms of these co-infections, Babesia, Bartonella, Mycoplasma, or whatever co-infection hanging out in your body, they could be causing the worse symptoms compared to someone who does not have a co-infection. If you are not showing any signs of improvement and are wondering why, and have not explored the possibility of co-infections, ask! Know that the testing is even more inaccurate than Lyme, and can be clinically diagnosed, but it is a possibility it is the co-infections that are making you far worse off than other Lymies.
I think although some aspects of Lyme might be more than what is controllable, our minds and how we treat situations is a factor in this. Many people have different levels of pain tolerances. Something that might be an “Oh my god, get over it!” thing to you, might be a completely horrible experience for someone else. Some people might get completely depressed or have so much negative energy that mentally, they just can’t get to a level that they need in order to get better, to be able to fight and continue on with the healing process and are stuck where they are at. If you are one of these people, know that there is support and you can get to a level of positivity and that will help you along the way.
I have traveled this journey without wanting an ounce of sympathy, often declining help from others as I fear I will lose more independence, and the last thing I want is people to feel sorry for me. Don’t ever feel sorry for me, LEARN from me. I chose to advocate and bring awareness for this disease. I have always kept a smile on my face. I hope my story brings inspiration to many.
Although I am not better yet, I know I will get better. I think the reason for the severity of my symptoms (Watch my “About Me” video if you have not, and you will get a better idea of me, other than just reading my stories), is a combination of several factors. I have been on treatment for just over a year, but have probably been sick since childhood. I have had a lot of stress throughout my life. A lot. I was definitely overdoing everything at the time of my “crash” as I was not only working constantly with two jobs, I was running around doing activities, exercising, doing everything around the house, helping my grandmother get things done and taking her where she needed to go. I was a busy lady.
I know I was not on the right treatment for me. I have made more progress in the past two months than I did in eight. Doing different IVs, the combination therapy protocol I am on, pulse therapy, and working on Babesia seem to be helping a lot, slowly but surely I am making progress. Like I said before, everyone is different! 😉