CFS was really Lyme for 7 years

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Regular Member

Date Joined Jul 2007
Total Posts : 296
   Posted 1/25/2009 8:19 AM (GMT -6)   
My daughter has been sick with all kinds of things for years. Most likely CFS we heard again and again. Turns out she had Lyme all along. Here is a link to the symptoms of Lyme. It is important to note that tests for Lyme are not accurate. Many test negative when the person is actually positive. It is important to find an LLMD in your area for an accurate dianosis. You can get recommendations on the Lyme forum. Here is a link to the symptoms:

Also, if you have ever been on antibiotics and felt worse, that is typical of Lyme also. It is caused by a die off of the Lyme bacteria and is called a Herx reaction.

Regular Member

Date Joined Jun 2007
Total Posts : 417
   Posted 2/2/2009 12:27 AM (GMT -6)   

Me too!  Except I was told 'connective tissue disorder', perhaps fibromyalgia.  A lot of folks on the lyme forum have these stories..

Even after my spinal tap was positive for lyme, still many docs didn't recognize it.  It wasn't until I got to some lime literate docs that I got some help.

Veteran Member

Date Joined Oct 2006
Total Posts : 851
   Posted 2/2/2009 4:44 PM (GMT -6)   
I, too, was diagnosed with FMS in 2000. Over time, my health worsened, with chronic low-grade fevers, severe muscle weakness and other symptoms atypical of FMS. My GP said something else was going on, but he didn't know what. He thought maybe Lupus.

In Jan/08, I was dx'd with late-stage Lyme disease, and a co-infection, babesiosis. I started treatment in Jan/08, and I am very slowly getting better. In my case, the treatment will be long, and the recovery is very slow, since I went undiagnosed for 8 years.

If your gut level hunch tells you something else is going on with your health, don't stop searching for answers. And don't let anyone tell you it's all in your head. It actually could be -- literally. Lyme disease can cause many psychological problems, as well, including depression, anxiety, and other problems such as insomnia, cognitive and memory problems.

Most importantly, there is NO accurate blood test that rules out Lyme -- the diagnosis is a CLINICAL one (i.e.- based on symptoms, patient history, symptom duration/intensity).
*Abx combo tx since Jan/08*
Lyme disease - clinical dx ’08; Babesiosis (Positive IgM/IgG) '08;
GERD '04; Essential Tremor ’03; Fibromyalgia ’01; Osteoarthritis; Depression; IBS; Interstitial Cystitis

New Member

Date Joined Feb 2009
Total Posts : 14
   Posted 2/16/2009 2:09 AM (GMT -6)   
I was also diagnosed as having Chronic Fatigue and Fibromyalgia in 2006. In 2007, I was diagnosed with Lymes based on symptoms by a preventive MD. My actual Lymes test was negative but I have since learned that the testing is unreliable. So, i was put on 3 courses of 3 weeks of antibiotics and they made me so sick that I sought a different route. Dr. Jenefer Huntoon treated me with therapeutic potency plant and pancreatic enzymes along with various herbal remedies to strengthen my immune system. This caused me to feel better immediately with no herxing. I am still recovering but I am able to work part-time whereas when I first got sick I couldn't work at all.
I have had Lymes, Fibromyalgia and Chronic Fatigue since 2006. I became intolerant of antibiotics so I started using all sorts of herbal remedies and they helped some. Concentrated plant enzymes prescribed by Dr. Jenefer Huntoon in Seattle helped me more than anything. Dr. Huntoon might be able to consult with you by phone or possibly she could provide her protocol to your local doctor.

Regular Member

Date Joined Jul 2008
Total Posts : 78
   Posted 3/11/2009 9:35 PM (GMT -6)   
I am so happy you all posted your stories. I think as time goes on and more research is done we will find that most CFS cases are in fact lyme disease. Please let me know if you need the name of a lyme doctor in your area.
good luck. I know you will feel better soon.
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