Hi Christine,

We all on this list sympathize intensely with you. You are not alone.

I believe I have lyme & babesia, though like you, I have tested negative for nearly everything (lyme western blot, spinal tap, mri, emg, etc.). I tested low for Vit D3, (which Im told most adults over 35 are low) & thats about it. One test that I highly recommend is the CD-57. Ive heard different ranges, my doc says anything below 250 signifies lyme disease, mine was 48. Mainstream medicine says anything below 60 is significant but really they ignore the CD-57. Basically CD-57 is a small piece of our immune system. If its low, it signifies that portion of our immune system is tired out from fighting an unknown infection.  If you test positive, at least you know you are fighting an infection & have been for sometime.

Regarding your diet, very good, my recommendation is to cut out the potatoes & rice. :(

Good luck & God Bless, stay tuned with us & keep us posted.

On Aug 13, 2016, at 1:02 PM, Christine <East-Bay-L-E-A-P-S-list@meetup.com> wrote:

Hello Everyone, 

Sorry for the long email, I'm really struggling right now and looking to see if anyone has had similar experiences and if you were able to find a solution.  

I've been trying to get a diagnosis for 4 years now and have come up negative on EVERYTHING. I've been told by several doctors that they suspect I have Lyme or MS but all tests come back perfect. I've had tons of blood work, multiple MRI, spinal tap and EMG. I've kept my symptoms in check with a healthy diet, light exercise and herbal medicine, but lately I've been getting worse and my doctors have told me there is nothing they can do. They just give me prescription strength Ibuprofen and tell me to keep working as long as possible and do more physical therapy (I can probably teach physical therapy myself at this point).

All the symptoms are on my right side; pain, weakness, tight muscles, my foot gets cold and blue, brain zaps, touching becomes painful, fatigue, etc. I'm sure you get the picture. In addition I have extremely quick reflexes according to my doctors. Exercise is difficult for me as it triggers pain attacks 90% of the time so I have to be VERY careful with what I do. I use to dance, hike camp and go horseback riding so this has been the most difficult thing for me to adjust to. I'm also in the 2% of the population that has a 'paradoxical' reaction to medications meaning I can't tolerate a majority of medicines which makes it hard to treat me with western medicine.

I don't remember ever being bit by a tick or seeing any sign of being bit by a tick. I have been bit by lots of mosquitoes as they seem to think I am delicious. I swell up very badly from mosquito bites so I know when one has bit me.

I do 15-30 min physical therapy a day as tolerated, take a daily hour walk as tolerated, meditate, qui gong, and I'm still working (an accomplishment in itself). I even went vegan for several months but it didn't seem to make a difference for me so I went back to eating small amounts of meat (<4 oz per day). I basically eat paleo + rice and potatoes. I get worse if I eat sugar, gluten or processed foods so I avoid them like the plague. I take ibuprofen, voltaren gel, effexor and amitriptyline for pain and muscle tension. I use essential oils and herbs to help me sleep, reduce pain and reduce stress. 

Has anyone had an experience like this? Did you ever get a diagnosis? What, if anything, helped you? I'm also looking for recommendations for doctors that may be helpful or tests that I should look into. I've tried everything I can think of and am out of options at this point. Any advice is appreciated.

Thank you, 

Christine

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