TO ALL DIGGERS: THIS IS IMPORTANT HEALTH-WISE –> PLEASE READ!

megghegg

Tenderfoot
Jun 29, 2023
5
5
First let me thank Barker for his part in bringing the topic of Lyme disease up, and I'd also like to thank the mods for making his post a sticky post. Hopefully every member reads it and is more cautious because of it.

My name is Mike. I became infected with Lyme disease in May of 2000 and have been fighting it since then. I still have issues because of Lyme disease, but am doing much better than I was. My purpose for writing this is to help people understand what it is like having Lyme disease.

I wrote a book about my experiences with Lyme disease. Don't worry, I'm not trying to sell anyone the book (it isn't in print anyway). If someone wishes to read that book, please send me a message with your email address and I'll send you the manuscript. It won't cost you a penny. I'm not going to pretend that the book is well written — I wrote it when I was very ill and now wish I had waited until I was more capable of doing a good job. The book is what it is though and it might help people understand what it is like having Lyme disease.

I don't get into all the medical aspects: I can't tell people what will work, or what won't work. I can say what has helped me and what seems to make things worse. Lyme disease does not affect everyone the same way; some people respond to certain treatments far better than others, just as some of those infected with Lyme disease suffer far more than others.

Prevention is the key; never go into areas that are prone to having ticks without protection (repellent, long pants, etc..).

If you are bitten by a tick, always seek medical treatment and insist that they do a test for Lyme disease. I would also demand that I was put on heavy doses of antibiotics for 3 weeks or so — and I'd go to a different doctor if the one I went to refused. Lyme disease tests are noted for being unreliable, but don't let that stop you from being tested. The most reliable test is a bit expensive — something around $100 — but that is money well spent if you can catch Lyme disease in its early stages.

I do not believe Lyme disease can be cured. Some will tell you otherwise, but most of them haven't had Lyme disease. The medical field seems to be split on that specific aspect of Lyme disease, just as it is divided with regards to all the aspects of Lyme disease.

I do believe Lyme disease can be controlled; especially if it is caught in the very early stages (when first infected).

If infected with Lyme disease, do your best to find a Lyme literate doctor. They are difficult to find and typically do not take insurance, but they're worth the cost and the effort.

Most of those infected with Lyme disease do not get the tell-tale bull's eye rash (around the bite area). Those who do get the tell-tale bull's eye rash — definitely have Lyme disease.

My Lyme literate doctor told me that there are 4 known variations of Lyme disease. I do not recall the specific names of those variations, but two are far and away the most common. My doctor claimed that 98% of Lyme infections are one of those two variations: both of which have symptoms that are relatively mild in retrospect but still no picnic.

Those symptoms involve severe flu-like symptoms for multiple days, joint pain (usually involving a major joint — such as a knee) swelling of the joints (usually a knee) horrible headaches and severe fatigue. Those symptoms can last for years — even long after medical experts have declared the patient to be cured of Lyme disease.

The other two, far less common, strains of Lyme disease are far more serious.

I was “lucky” and contracted one of those two (far more serious) variations of Lyme disease. The uncommon strains attack the host's central nervous system — spirochetes burrow their way into the brain, the eyes, all the organs, and they develop an immunity to the antibiotic used to kill them. As the spirochetes are killed, the patient becomes violently ill due to the spirochetes releasing toxins into the host (they burst when dying).

Everything is affected in a negative manner: your ability to think, your ability to see, your ability to walk, your ability to function. Your joints hurt constantly — so much so that it is really difficult to move. Your balance fails — making it seem like you're drunk or otherwise incapacitated. Your speech is slurred and you can't finish sentences because it is impossible to remember what you were talking about.

I've lost entire days — unable to remember a single thing that happened during the day. This isn't just a matter of not recalling something that happened last week — it's a matter of not recalling anything from the prior minute.

I've gotten lost in known areas right around my home. This happened frequently to me. I'd drive into town and get lost — and I've lived in this area for 24 years. I had no idea of where I was, or how to get home. I'd just continue driving, hoping that something would trigger a memory and I'd find my way home. Sometimes it would take minutes, and sometimes it took me hours of wondering around aimlessly.

I'd get stabbing, shooting, lightning strike, pains throughout my body (I still get them on occasion). The pain is incredible and it strikes anywhere at anytime — it could be my foot, my neck, my stomach, or even my — well, let's just say areas you don't want that kind of pain.

In the past I would have this weird sensation of things crawling just under my skin. It would happen all over my body and it was enough to drive one mad. Scratching did nothing to help, but I scratched myself to the point that I'd bleed all over.

I'd get muscle spasms so severe that they'd pull my vertebrae out of joint. I'd lay on a heating pad turned to high — enough so that I still have burn scars on my back — just to relieve some of the pain.

I was always fatigued. Severely so; simple tasks would require hours of rest just so I could function in a depleted state. There were many times when I couldn't walk 50 yards if it meant saving my own life — I just couldn't manage it.

I could go on and on about the results of having Lyme disease. I've barely scratched the surface when it comes to trying to describe what it is like living with Lyme disease — and I'm one of the more fortunate victims of this disease, I am much better than I was. There are many who suffered far more than I did, and many who are still suffering after having the disease for 20 years or more.

I took antibiotics for 16 full years — large doses of varying antibiotics, always changing to combat the ability of the spirochetes to develop immunity — and that too has had negative effects.

Lyme disease has all but ruined me financially. I've paid nearly all of my medical expenses out of my own pocket (insurance tends to not cover things and most Lyme literate doctors do not accept insurance). Still, I'm one of the lucky people who could get treatment; there are many who cannot and do not.

Lyme disease affects every aspect of my life. Be that physical, or mental, or economical, or emotional. And the latter may well be the most difficult.

It is tough enough losing one's physical abilities, but that really is to be expected just with aging alone. To a lesser degree the same can be said about mental abilities and finances, but I wasn't prepared for the emotional difficulties.

I can't do today what I could easily do 20 years ago. I think everyone who has reached my age can honestly say that. But the difference is that I can't do today, what I could've done today if I hadn't been infected with Lyme disease. It just isn't possible. In a sense, Lyme disease has aged me rapidly, and I've lost a good chunk of my life.

But it isn't just the loss of my abilities that I'm talking about. Lyme disease sort of slaps you with a cold, hard reality: you don't matter. That's a tough lesson to learn. At least it was for me. It's amazing how quickly people move on with their lives — leaving you to your own struggles just when you could really use some help.

That is an issue that just about every Lymie struggles with.

For now I am doing much better. It's been a tough battle but I'm doing OK and I'll fight Lyme disease until I draw my last breath. I expect it will win in the end, as lots of people die from this disease, but it won't win because I quit trying.

Hopefully those who read this far too long post will have a better understanding of what it is like living with Lyme disease. With any luck at all, my words will make you far more aware of the threat that Lyme disease presents without making you fear the outdoors.
Not too long, and greatly appreciated. Thanks!
 

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