So confused and anxious and mad.

My PCP told me I have Lyme disease and then just emailed me this:

So one of our "go to" doctors for Lyme reviewed your chart and labs and she does not have a concern for Lyme disease and you can stop the Doxycycline. They are not concerned for this. Let me know if any questions. I know this is frustrating but great news they aren't concerned for Lyme disease -Dr. Raglan

These were my results:
IGG P66 AB.Present 
IGG P41 AB.Present 
PIGM P41 AB.Present
IGM P23 AB.Present   
Lyme IgM InterpPositive   
Western blot was positive

Symptoms for 4 years. So frustrating...so, do I really not have Lyme now??

I have an appointment with LLMD July 21st. I haven't starred doxy. In the last 2 weeks I had cellulitis, a yeast infection, a cold sore...so once I'm off the 6 pills a day antibiotics for this junk, I was going to start it. I was on doxy for my skin every other month for about 8 months and quit that a few months ago, but I am going to start it again. I don't understand why they would say I don't have it... are those not considered positive results? Or do I have something else Maybe?

lpaiges23, they are constantly getting pressured to try to lessen the loads of people who are infected by dismissing our test results. Positive test results are hard enough to get without this going on.

Even CDC still says SYMPTOMS should be considered .....foremost? That I couldn't swear to right now. The more people that are coming up infected, the more the CDC tries to sweep the cases under the rug. Hide us.


Read some of the links Traveler has posted about the CDC. That's just a start.
Watch the movie "Under our Skin". This will explain why they are leaving us in the dust.

lpaiges23,
It is just unbelievable how incompetent those doctors are. They should be ashamed of themselves.

I certainly understand your frustrations and I hope you have a better outcome when you have your llmd appt in July.

I truly wish you the best of healing and just keep moving forward with getting the proper treatment that you know you deserve.

Take care, Jo

I will. I just don't get it.

I wonder how you are going to sue these guys if lyme has not positive result proof, I mean, not any blood exam that is 100% surely a proof that you got lyme, that is accepted by all...

anyway, one thing I learned after looking for help in 3 countries in Europe, where I live, and getting NO HELP at all, was the following:

Even if I arrive to convince them that I had lyme, what help could they give me? A couple of weeks of antibiotics and told cured?

People who can barely diagnose you for lyme, even open minded doctors, are in TOTAL loss when it comes to treatment of lyme. Treatment of lyme can be extremely complex, and practitioners need many years of experience to come with good results.

So, just give up on THEM, I mean, on these duck doctors. You may try to sue them, but meanwhile, look for competent help. People here surely can try to help you find help. Insisting on treament, begging for treatment brings almost nothing in case of lyme disease, because you'll need months of treatment and someone that is very knowledgeable.

don't put your hope on duck doctors. It's loss of time and money. Give up on THEM. They don't deserve your money, nor your attention.

Post Edited (Jinna) : 6/19/2017 12:28:30 AM (GMT-6)

i saw 33 docs had two positive tests and no one would treat . a rhuemy gave me sent me to a a id doc who would not treat lyme said it was a false positive

your test show you have a immune response to borrelia ! you have lyme ...regular docs are useless,even some llmds

and borrellia never travels alone usually gram negative and protozoa also come with it ..here they only give 30 days of treatment ..better off going for skin stiff to a derm and they will give abx for eva...i found bvt , rife and herbs to be most helpful with iv antibiotics ...forgive them they know not what they do

Unfortunately, your story is not uncommon in the Lyme world. That's usually what happens when one of us sees a doctor that is trying to still rely on IDSA standards for treating these infections.

Find a LLMD that follows ILADS treatment guidelines that can treat you. We can likely help you with this if needed.

You can also take this questionnaire and present the doctor with the information: www.tiredoflyme.com/horowitz-lyme-msids-questionnaire.html

I was passed around for 40 years until I finally made my own appt with a LLMD and was able to confirm I had these infections, even though I couldn't test positive and get into treatment.