Hi, I'm new here and hope I can get some guidance. I'm 45 and started to get a droopy eye back in December 2011 and since then I have gone down hill. Bottom of my feet hurt, tingling sensation in my head, chest, fingers, sore neck. My doctor immediately tested me for lyme but I was only positive for band 23 and according to the CDC I do not have lyme. The fact that this came back positive and my symptoms, my doctor put me on doxy, twice aday. I could not sleep last night, tossed and turned felt every ache and pain and tingling sensation...I got up around 1:30 to let my dog out and I stared to have hallucinations - it was the street light that looked to be a firework to me. I don't know if this is a side effect of the medicine or if I am going crazy. Any guidance will help. BTW, I never had the rash or at least I never saw a rash.
Posted by Lymetoo (Member # 743) on :
WELCOME!!! Sorry you found a need to find us, however!!!!
I'm moving this to Medical Questions where you will get more help. Looks like you NEED it!!!
Posted by opus2828 (Member # 15407) on :
I could not take doxy close to bedtime or I would get similar symptoms - see things that aren't there. I would take it early in the morning and again in the middle of the afternoon - 5 pm ish to avoid this problem.
The doxy may make you feel worse at first as it kills off the bacteria. This is called herxing.
You will need to find a good LLMD to help you with this. I don't know what dose of doxy you are taking but usually enough is not prescribed.
Most docs prescribe 100 mg twice a day but you really need 200 mg twice a day.
If you haven't already, post in Seeking a Doctor for a good doc near you.
Posted by jams711 (Member # 35941) on :
Hi, Thank you so much for your feedback. I am on doxy twice a day for 100 mg for three weeks only. My blood test came back positive for band 23 only - I'm not even sure if I have lyme's disease because of the CDC requirements.
Posted by aperture (Member # 34822) on :
Please watch "Under Our Skin". It's free on Hulu. This movie saved my life. It will clear up a lot of confusion.
jams, the regular doctors are getting the CDC REPORTING requirements mixed up with the requirements to diagnose a patient with lyme.
CDC wants only certain cases of lyme disease reported to them. That's what the CDC requirements are for--nothing else. These CDC requirements are called "surveillance criteria." Yet, the non-lyme doctors have taken to using these reporting requirements as the requirements to diagnose lyme, and that is just not so.
Based on your symptoms, the doc IS treating you for lyme, and that tells you that he believes you likely have it. That is good. But, his treatment of 3 weeks is not nearly long enough.
The best thing you can do for yourself now is to read the Burrascano Lyme Treatment Guidelines, found here:
Especially read the parts on diagnosing lyme disease, starting on page 7. There, he tells you that no test is reliable enough to make the diagnosis of lyme. Instead, the doctor makes the diagnosis based on your entire clinical picture.
See this quote near the top of page 11:
"It is important to note that the CDC's published reporting criteria are for surveillance only, not for diagnosis. They should not be misused in an effort to diagnose Lyme or set guidelines for insurance company acceptance of the diagnosis, nor be used to determine eligibility for coverage."
I never saw an attached tick and never saw a rash. Because of this, it was 10 years of illness before any doctor thought of testing me for lyme disease. Good for your doctor for thinking of lyme.
Now, find a doctor who specializes in treating lyme disease and you will have the best chance of getting rid of this disease.
The doc is the key to getting rid of it. Can't emphasize that enough.
You can contact the lyme support groups in your state (see Support Groups on left side of page) for doctors names, and you can post in the Seeking a Dr. portion of this website.
I suggest you ask for a doctor who follows the Burrascano protocol. Burrascano was the most successful lyme doctor in the world before his retirement. They came from all over the planet to be treated by him.
I got well by seeing a doctor who followed his protocol. I had 2 other lyme doctors before this, and they did not follow Burrascano. They were unable to get me well.
Posted by opus2828 (Member # 15407) on :
The CDC requirements are not adequate to determine if you have lyme. Band 23, I believe is specific for lyme.
If you feel worse on the meds, then you are having something die off - so that's another great test there.
You need a LLMD who can test you properly through Igenex.
I only had one band, told negative and didn't question. Waited TEN years as I got worse and worse. Got lucky and tested "positive" or I may still not know what is wrong with me.
And you also need to be tested for co-infections. There are lots of great docs near you who can test you properly and get you the right treatment.
In my non-medical opinion, it does sound like you have lyme.
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Sorry you found a need to find us, however!!!!