LymeNet Flash: Worried that I have a serious illness...

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Posted by KLS (Member # 6002) on :

Hi everyone,
I'm writing because I am so concerned that I have some type of terminal illness-I've felt so rotten for so long. I'm on my 8th day of antibiotics and still feel awful if not worse than I started. This is consuming my life-I am so afraid because I feel like my body is being so compromised and that everything is hurting or failing. I've had numerous blood tests supposedly looking for cancer or infection and chest x rays, c spines, I'm headed in for an endoscopy in a couple of weeks but everything comes back normal. I am so scared and I wanted to see if any of you went through the same worries that I'm experiencing. I just need to know that I'm going to be ok because I'm a wreck right now! Thanks for all of your help!

Posted by TheCrimeOfLyme (Member # 4019) on :

You do have a serious illness. YOu were seen by a LLMD and diagnosed with lyme.

Thank goodness, there is treatment for it, and there IS hope.

Posted by Rita on :

Lyme isn't given the credit it deserves for it's ability to make a person's life miserable. Everyone, including most doctors, think it's a nothing disease that's easily diagnosed and cured. They're wrong. If not aggressively treated with the tick bite, Lyme can become a very serious disease.

Most of us go through approximately what you're going through, especially when the tests come up falsely negative. The tests are semiworthless.

Posted by Lymetoo (Member # 743) on :

I agree......You DO have a serious illness...Lyme.

Lyme is strange in that it's VERY common for problems not to show up on conventional tests. I have tachycardia from babs/Lyme and went through all the heart tests.

They found mitral valve prolapse, but virtually nothing else. Yet my heart goes into overdrive without the atenolol I now take. I also get palpitations without the antenolol.

It is very common and expected that you will feel way worse before you feel any better. I don't know how long you've had Lyme, but I've had it forever, and it took one full year before I saw any improvement.

But of course, I WAS improving.....I was killing those keets and herxing my head off!

So, hang in there....it's all uphill from here....it just may not feel like it sometimes!

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Posted by Corestar (Member # 5980) on :

Dear KLS,

I agree with other posters here. If you've been diagnosed with Lyme you do have a serious illness! This is a complicated, insidious disease.

I felt like something was very wrong for a year and a half. Then I ran into a naturapathic doctor with a microscope from the Bowen labs that magnitizes 400 times more. She was 99% sure I had Lyme. Getting this confirmed by my medical doctor of many years became a nightmare. He was sure I did not have it. Finally I waited for six weeks before I could see a LLMD. In the meantime I had blood sent to Bowen lab and they confirmed it was Lyme. My LLMD then also confirmed it was lyme because of the symptoms I had and added more blood work because he further suspects I have the co infection Babs. I'm still waiting for those results. All this to say I've been on Doxy for three weeks now and got much sicker within two days of starting! All your symptoms will intensify when you start the abx and symptoms you didn't know you had will be added.

If you have a good LLMD trust him/her and dig deep for courage and patience. The good Docs know what they are doing and take the time to fully communicate with their patients and their changing experiences!

You'll read many posts here and see much suffering caused by this disease. Use this network to gather strength, support, and knowledge! You deserve it. Best of luck to you!

Ann

Posted by Lishs mom (Member # 2344) on :

We were sure our daughter had cancer...
It took nearly three years of treatment before she was finally a "normal" kid again. She still has pain some, but most of the other issues are under control.
We even retested for cancer a year or so into treatment for lyme because she was still doing on and off. I was sure it was leukemia and a brain tumor...both!

(she did have a brain cyst...which went away after treating the lyme disease).

Our daughter is not part of a rock climbing team, has learned to water ski this summer...AND LOVES IT....and is enjoying showing the horses!

Yes, life does get better after lyme...it may take a while...but it does get better.

Posted by tabbytamer (Member # 3159) on :

KLS,

I, too, went through the worry of having something "terminal"--but only because all the doctors insisted there was no way it was Lyme.

Went through all the tests, too. Same thing, they couldn't find anything. I felt for sure they were missing something. How could someone be so sick and have all tests come back normal.

Actually, they would say, "You're healthier than I am."

My blood would boil everytime I heard that! They were of course implying I was a hypochondriac.

Yes, Lyme makes you feel miserable. It can affect every bodily function. And you can feel just as bad at first (even worse) when starting treatment. But it will get better.

Just keep your LLMD informed of any symptoms that concern you. If he thinks something crops up that is not Lyme related, I'm sure he will let you know.

Posted by KLS (Member # 6002) on :

Thanks everyone for all your help! I guess my biggest concern is that I've only been tested once by my LLMD and the test came back "borderline", so of course I wonder what if that's not it? But like you all mentioned I have a lot of faith in this doctor and he's treating me with a strong belief that it definitely is lyme based on all my symptoms and will retest me in three weeks. It's so good to hear that I'm not the only one with these fears and I really appreciate all your feedback!

Posted by Lymetoo (Member # 743) on :

Hi KLS.....be sure to read the link below concerning interpretation of the Western Blot test. I assume that you had this test. Let's hope.

Also, my test for babesia was "borderline" and I had/have it bigtime. I think it's 90% gone, but still there. UGH. Our immune systems can be so compromised that they cannot register a good response to these tests. In other words, you can show negative when you really have it BAD.

Western Blot explanation: http://flash.lymenet.org/ubb/Forum1/HTML/022767.html

Breakthroughs in Lyme Disease http://flash.lymenet.org/ubb/Forum1/HTML/024093.html

Hopkins misses Lyme diagnosis http://flash.lymenet.org/ubb/Forum1/HTML/024548.html

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Lymetutu

Posted by Mathias (Member # 5298) on :

KLS, which lab performed the tests?

That can really make a big difference.

I assume your ELISA came back borderline? What about your Western Blot?

Posted by Monica (Member # 224) on :

KLS,
You are in my neck of the woods. I am very familiar with Clinton (I work in Three Bridges). Almost everyone in Hunterdon County has a close friend or relative with Lyme Disease. In fact, I ran into a couple on Saturday at the Sidewalk Sales who were trying to get a bug off their toddler. They told me they've pulled two ticks off him. I told them I had Lyme Disease to thank for my walking problems that necessitate use of a cane. If I were 80 years old it would seem more reasonable to feel this way.

Lyme is a serious disease and so often misdiagnosed. You are getting help. Don't give up. I've been fighting this for seven years, after 8 years of not being diagnosed and I know I can't give up.