I received a clinical dianosis in April 2010 due to the EM and pneumonia, joint paint and swelling. In the end it took 13 weeks of antibiotics to feel better. I barely got out of bed.
I was and am currently being treated by my PCP due to an inflammation of the original rash site, headaches, joint pain, and the worst freaking hot flashes ever. I am currently on Ceftin(coated) again.
I have never been tested for coinfections and since the SE doesnt seem to treat Lyme I am fortunate to have a doctor who has treated it before, however I am concerned.Although I am not nearly as bad as last year I want to "help him" treat me effectively as possible.
As I have read the co infection tests are inaccurate what is one to do? I have read so much material on Lyme and to be honest I am at a loss as to what to even say to him when I go back.
Can anyone help me simplify what to say when I go back in and give me an idea of what they should probably prescribe?
I am still not feeling that great and I feel that I still need treatment.
Also, what supplements do you feel are a must for those with Lyme?
Posted by Lymetoo (Member # 743) on :
I'm so sorry you are in Georgia where it is hard to find an LLMD. But you REALLY REALLY need one if you want to get well.
It would be good to get tested for babesia, since the "hot flashes" could be from that. If you do not get the proper treatment, you will remain ill.
Many LLMD's will TREAT for babesia or bartonella even if the test comes back negative. If you have the symptoms, they will treat. If you have no reaction to the meds, then you probably don't have the said disease.
I agree with Lymetoo that you really do need an LLMD. Until you get rid of any possible co-infections, you will never fully get the Lyme under control.
And yes, the hot flashes point towards Babesia.
A good LLMD will treat clinically even with a negative blood test on co's which is why it's so important to find a doctor that specialises in all the tick born diseases.
Good luck and keep us posted.
Cathy
Posted by nefferdun (Member # 20157) on :
I agree you need to be with a knowledgeable doctor that you needn't fear will stop treatment too early or deny you the right combo of drugs that you need for the infections you have.
It is really hard to train a doctor how to treat you. I have done it but I believe I could have been well a lot sooner had I not been in training myself.
The first thing you need to accept is that it takes long term abx to get you into remission. What was the point of one week of Levaquin? Levaquin is used to treat bartonella and one week would not make any difference.
Hot flashes are usually babesia but they can also be bartonella. There are other symptoms that help you determine which infections is which.
With babesia you are extremely tired; exerting yourself to climb a flight of stairs will leave you breathless. You may feel like you are not getting enough oxygen and need a deep breath. You are likely depressed and unmotivated. You can have bad headaches and the large muscles of your thighs and buttocks can hurt or cramp.
With bartonella your nerves are raw, on edge. You are easily irritated - with outbursts of rage at times. Your feet can hurt especially in the AM - or your shins. You can have all kinds of skin "things" like spider veins, crusty moles, brown spots etc. You may have tender to the touch nodules under your skin along the sides of your thighs or underneath your upper arms. You can have muscle twitching.
Both infections cause hot flashes. With babesia microti there is often profuse sweating. With babesia duncani the sweating is not as profuse. With bartonella the sweating is sticky in nature. Bartonella causes insomnia but babesia can make you sleep more.
As you treat one infection, another one will emerge and take over. Your symptoms will change. It is hard to figure out what is happening because borellia migrates and cycles. You wonder if you are herxing, relapsing, in a flare or just missing a new infection that needs a different antibiotic.
That is why expert help will get you well a lot faster. But sometimes we just can't find anyone. Best of luck and keep coming back to get the help you need.