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katharine122 11-02-2014 01:21 PM

Chronic Lyme without the initial symptoms?
I have been experiencing joint and muscle pain for the past four years. It began in my hands and I saw a rheumatologist, who ran tests. All of my blood work came back normal but she prescribed me naproxen for my pain. The naproxen did not seem to help and I went back to another rheumatologist the following year when my symptoms got progressively worse. The pain moved into my hips and knees. At the second rheumatologist, she ran tests and everything came back normal again. She seemed to think my pain was connected to my celiac disease and I was then sent to GI, where everything was normal. From there I have been back and forth to my PCP and sent to Ortho and PT. Ortho prescribed me 1000 mg of Naproxen, which could not take the pain away. While in PT, the physical therapist noticed that I had weakness and balance issues. The balance issues are definitely becoming more noticeable. Physical therapy was not helping the problem. Now my PCP thinks I may have chronic lyme disease. My symptoms come and go, but when I have a flare up, they are extremely debilitating. My hips have a deep and achy pain that radiates to my knees. My legs feel extremely heavy and even moving the slightest bit takes a lot of effort (i.e It takes a tremendous amount of effort to even move my toes). It feels as if I have a pile of bricks laying on top of my lower body and it makes daily functions extremely difficult. I have recently started to notice a feeling of heat on my thighs and after walking just a little bit my leg muscles will twitch uncontrollably. Heat seems to help for a little bit, but once it is removed, the pain comes back. I have difficulty sleeping because the pain is so bad and I cannot get comfortable.

I should also add that I live in Connecticut and I hike occasionally.

I was tested for lyme over the summer (2014), but it came back negative. My PCP wants me to see a lyme specialist. Is it possible to have chronic lyme disease and not recall having any of the initial symptoms?. The joint and muscle pain has been my primary complaint for almost four years.

Thank you so much in advance for any input!

68GTX 11-02-2014 02:05 PM

Re: Chronic Lyme without the initial symptoms?
Also from CT here. My wife has been dealing with Lyme symptoms for several years. She takes natural supplements when a flare up occurs. The symptoms aren't that severe and they go away. She has always tested negative via the PCP. I don't think she ever had any initial minor symptoms before she first got hit hard with it. Not everyone gets the circular rash. Most primary care doctors don't properly deal with this. A referral to a Lyme specialist is the next step. Best of luck in battling this little understood disease.

My wife uses the Coping With Lyme Disease book for recommended supplements, etc. Very good information on this site in the locked threads.

Jack84 11-17-2014 06:34 PM

Re: Chronic Lyme without the initial symptoms?
Yes, it is possible to have NO or only a few unsuspecting symptoms with Lyme & this can go on for YEARS & decades at times.

Here is my history:
-Bit in 1995
-Headaches started in 2001, but very gradually
-Progressive headaches & just always tired since 2005. There is no way I could tell it was an infection...impossible!!
-2005-2006 headaches felt like brain burns & then it extended to my neck.
-2007 stomach pain started.
-2010 shortness of breath & heart palp once
-2010 heart palp, shortness of breath & all hell broke loose.

So it took some 16 years to really have the idea of Lyme. I never had any one of the other symptoms of Lyme. Some 3 years after this now, I have many of the symptoms, including joint pain and this is despite taking many different antibiotics.

My niece & daughter are similar. No symptoms for a few years & then headaches & stomach pains. Occasional migrating pains all over, but it goes away. Their immune system is keeping it very well in check.

RobNOrl 11-18-2014 09:07 AM

Re: Chronic Lyme without the initial symptoms?
If you ever had the flu and didn't notice a tick bite, and the rash didn't show up, that could have been when it started and you would never have recognized it.

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