Wednesday, May 1, 2013

CHRONIC FATIGUE SYNDROME and LYME DISEASE

From 1999 to 2007 doctors told me I had Chronic Fatigue Syndrome, or that I had food allergies, or that I had a psychological problem.

My family doctor ran a test for Lyme disease that came back negative. I didn't know that test was wildly inaccurate. She didn't either. She implied I'd made my illness up, and told me if I exercised a little more every day I would get better. That bad advice haunted me for years.

I'd been a cross country runner and a rugby player. But now every time I tried to walk a few blocks, I ended up in bed for days.
"A sick girl" by Mikhail Nesterov 1928

In 2007, a doctor who was knowledgeable about Lyme testing and Lyme disease diagnosed me with the illness. Once I started antibiotic treatment, everything changed.

8 comments:

sipora said...

what test came back positive for lyme?

Naomi said...

Sipora: this was the Western Blot from Igenex laboratory. Good Luck!

N.

sipora said...

I had some bands come back positive on Igenex....but did antibiotics and got really sick :( I also did an herbal thing which didn't help....I don't think I have lyme....but who knows!

Naomi said...

Dear Sipora:

It's counterintuitive, but most people with Lyme initially feel much worse on antibiotics. Then they start to feel better. The treatment can be rough, but if you have a good doctor (from the ILADS medical association) and you stick out the treatment, you will probably get better.

Not everyone gets 100 percent better. Some do, and others have a much higher quality of life after getting through the worst of their treatment.

I know there are grey areas, and of course I'm not a doctor, but "Chronic Fatigue" is horrible. It's might be worth looking into Lyme with a doctor who knows.

All the best,

N

Anonymous said...

My husband has been suffering from something for years and the last year and a half he has gotten much worse. He started eating wheat free in his twenties, then eliminated sugar the last ten years..he avoids alcohol. We have an appointment with a lyme doctor in a week and a half and the test has been sent off to igenex. His memory has gotten so bad and the fatigue is overwhelming him. Once you were on antibiotics how long was it before you started feeling better. He used to be so active even when he wasn't feeling great and now the poor guy can't do anything or he gets worse.

Noelle Catharine Allen said...

Dear Anonymous:

It took me about four months to feel the first changes on antibiotics, and then I continued antibiotic treatment for several years to get to where I am now, about 90% cured. But keep in mind I went 8 years before a diagnosis and was so sick I couldn't work, could barely stand up even. I hope your husband is not in such bad shape and so will recover more from whatever he has (possibly Lyme)! I think it's very important to avoid wheat and sugar--for everyone and especially if you have health problems. I am sending you and him my best thoughts.

Please keep up your hope for a diagnosis and a cure! If he is diagnosed with Lyme please keep in touch! You can find me on facebook (Noelle Catharine Allen) or post on here on the blog.

Best,

N

Anonymous said...

Thanks so much. He is 56 but started feeling unwell in his early twenties but doctor's could never tell him what was wrong. He saw a naturopath in his late twenties and started eating wheatfree and perservative free. In the last ten years he took sugar out of his diet and rarely drink alcohol. I think this is partly why he has been able to function. He retired last November but really hasn't felt great. He does have some good days but the bad days out number the good. Not exactly the retirement one dreams of. Our sister in law was the one who first mentioned lyme as a possibility but then the test came back negative. Then his oldest brother sent him some articles and said that he was sure that this is what is was. The confusion and memory loss gets to him most. A few years ago though he was still able to exercise and he could out run people half his age and now it's hard to even go for a walk. He has only played hockey a few times this year which makes me sad because he is missing a social outlet. I'm confident that treatment will help. Hopefully...I will keep in touch. I'm so glad to hear you are 90%!!! That's great news!

Noelle Catharine Allen said...

It sounds like your husband is already on the right track and mindset for taking care of himself, which is a good sign. If he is diagnosed with Lyme, the initial treatment will be difficult, but you will also see results if you are patient and hang tough! From my experience and observations of others, antibiotic treatment at the outset is very important to knock back the extremely disruptive and progressive Lyme bacteria. It won't go away with homeopathics, etc, not at the start of treatment! Later on, those things can be valuable. And alternative medical support along the way is also valuable if it's available to you.

As I said, I'm glad he has a holistic approach to taking care of himself and can make those connections. It will be helpful in the long run! I know that fatigue and memory issues can be very discouraging.... I'm hoping for the best for both of you. And thank you for evidently caring so much for him. The people who helped me through the worst years of my illness are the dearest in the world to me.

Best,

N