Finally on full treatment

Discussion in 'Lyme Disease Archives' started by maps1, Oct 8, 2009.

  1. maps1

    maps1 Member

    Had my neuro appointment Monday although he is going to run an Evoked Potential test he told me that there was only one lesion that looked vaguely like an MS scar and the tests like touching my nose etc were all normal.

    I had an appointment this morning with my lime doctor who is a specialist in internal medicine and infectious disease.

    He told me that he ran all the tests and sent me to the neuro doc because their is not one reliable test for lyme disease and so he had to rule out every other possibile disease.

    Now that everything else is rulled out I am now in serious treatment, last month I was on 1000mg of biaxin and am herxing very badly with fevers, pain etc., Now he has put me on 500 mg of azithromycin and 400mg of hydroxyquin. He is a funny man, he said he used to prescribe this but got to feel real lonely as no one else was doing it, then he watched the presentation made at the IDSA meeting so has gone back to this treatment.

    He also said he recieved a bullitine from health canada or something like that stating that four people in Toronto with no travel and very little outside activities have tested positive via elisa.

    My son is on the "name the names" list four years ago started to have the same cfs symptoms as me we were beginning to think CFS maybe infectious. three months ago he had reached the point of only being able to work two days a week, he had extreme fatigue and brain fog. He tested positive through Igenex

    He has been going up to NY for treatment for the last three months and has been tracking his progress. Last month he had only three bad days.

    Sorry spelling and grammer not so good right now.

  2. Nanie46

    Nanie46 Moderator

    Hi maps,

    I am sorry that you are herxing so bad right now.

    I am glad though that you are getting full treatment now.

    Perhaps you will feel a little better now that you are off biaxin and on the other meds.

    Keep us posted. You are in my prayers.

    I am happy to hear that your son is improving! That is fantastic!

    I was reading an article the other day written by a Dr who has chronic lyme.

    He said it seems to take 1-3 years of treatment for many people to "turn the corner".

    Of course that depends on how long a person has been infected, how much damage has been done, coinfections, etc.

    I hope you are feeling encouraged even though the road is long and hard.

    You are not alone.

    take care,


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