I came across this support group on lyme and decided to join for help and support from others dealing with this disease.

I was diagnosed last fall with lyme disease by my rheumatologist after complaining of fatigue, sore muscles, spasms, tingling, numbness, etc. After feeling better once treated he told me I should be fine.( I also suffer from severe spinal stenosis, which causes alot of pain and stiffness in back and legs.)A couple of months ago I started feeling very fatigued, sore, foggy, tingling and numbness again. I went through a series of test with my primary and asked specifically tobe tested again for lyme and it came back a high count and was diagnosed with late stage lyme.My primary put me on amoxy 500mg. which I had a reaction to and I landed in the hospital...I was extremely dizzy, vomiting, etc. They treated me and put me back on doxy 100 mg. 2x a day. Almost done with medicine and my concern is should I be tested for co-infections and how do I know if this treatment is enough? Any advice would be greatly appreciated, thanks...Mary

You sound like you have classic symptoms all the way and so far you've done what you can. You've already done some testing, but DEFINITELY get tested for co-infections! It's good that you're also already on some meds but I suggest you find a Lyme Literate Doctor(LLMD), unless your primary happens to be one? If you are late stage, one course of meds will not likely do the trick...an LLMD would know that.

The most important thing you can do in my opinion is research, educate others WHILE fighting to get your life back! I'm sorry to hear the meds are making you so sick, everyone reacts differently to them. I was on Doxy for a long time but they upset my stomach so bad they finally put me on a picc line to see how that did and now I'm really having a hard time with fatigue and terrible cognitive problems. Today seems to be a good day so lots less typo's! (you'll see when I'm struggling...)

There are a lot of people on here who have been fighting for a very long time, some have gotten better but stick around to inspire the rest of us, and some are not quite there (YET!), but we all do our best to help eachother out and answer whatever questions there are so ask away!

Hope you're feeling better soon~

Also, are you seeing an LLMD (lyme literate doctor)??Most doctors are living in ignorant bliss about how to diagnose lyme and coinfections AND how to treat it. You can pm Jaime to find one near you (she has a list). I took the alternative route and saw a doctor in the South that helped me fully recover. So, we can get better, we really can.

And welcome to our group! There are a lot of knowledgable people on this site who can help to answer your questions, so ask away.

I hope you feel good soon

peace,

connie

~ Sav

That's what we're fighting is...ignorance. I can't believe there would be ignorance in your area. Unbelievable.. Well, ask away and find an LLMD so you can begin to heal.

Peace,

connie

How do I get a hold of Jaime, I went to Savys'I home page but didn't see her name. I tried to find a doctor but nothing came up in my area, thanks..Mary

hope you're feeling well today!

Savvy

It is important to test for co-infections as they sometimes give you different abx to treat these. An easy way to test for co-infections is to go to the Igenex website, look under "what tests to order" and they have a co-infection panel specific to your area. This is a specialized lab and it may take some convincing to get your Dr. to order it if he/she is not lyme literate. That is why the forum members have suggested that you see a LLMD. BTW from what I,ve read 100 mg of doxy twice a day is probably not going to get rid of your chronic lyme. Keep researching and asking questions. Unfortunately with this disease you can't rely on regular Dr.s to know what they are doing, even infectious disease specialists.

Good luck and take care, Denise