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Posted 6/2/2015 2:35 PM (GMT 0)
I had a follow up with my doctor this morning to talk about next steps and Lyme Disease ( I hadn't talked to her since I got my positive lyme test, the receptionist just called to say it was positive and we have a prescription here for you). I was really looking forward to talking to her today. Im on day 11 of my doxy, done this three week course next Thursday. I had questions for her and just talk about Lyme Disease and treatment in general.

Right from the START when she walked in she was distant, rude and could care less how I was feeling. She wasn't welcoming at all... she told me "So I got a letter and apparently we need to do your Lyme test over because the IgG not being reactive. I explained these tests are dumb and you don't always have reactive IgG with Lyme Disease. She could care less. "SO what do you want from me?" What? Seriously she said that.

She went on to tell me ( I didn't even mention long term antibiotic treatment) I have one patient that goes to the states and does all these medications blah blah blah I don't agree with and I am in no way able to do that" Me : Okayyy, that nice. Anyways, Im not asking for that? I feel like your yelling at me (I said that) I just came in to talk to you about this and this is unbelievable , I feel like im going to walk out of her and be like "Wow, my doctor didn't listen to me at all and was yelling at me". So then she sits back and stares at me so I can "talk". I cannot believe how I was treated. Well kind of I can, she has ALWAYS been a cold hearted person. Never liked her. My husband never has either. She always blows my kids problems off and pretends to say they are "cute" as she fake smiles and walks out the door. I want another doctor badly, not just for Lyme Disease just a new doctor in general. I always like it when I cant get in to see her and I have to see another doctor at the office for me or my kids.

I feel so alone. I totally cant go to her for anything again. Even strep throat. I don't want to.

Anyways... I need to re do my Lyme Disease test on June 18 (4-6 weeks after my first one was done).

Post Edited (JessicaMommy) : 6/4/2015 6:22:20 PM (GMT-6)

Posted 6/2/2015 2:48 PM (GMT 0)
JessicaMommy, I am so sorry for your experience with your doctor. In the first year of infection I "fired" three doctors because like you, they were cold, inconsiderate, did nothing to try to treat me, and denied that I had Lyme. So yup, I understand completely how you feel.

I encourage you to look for another doctor that you trust and that has an open mind or is knowledgeable about Lyme.

And about the IgG and western blot, I too could not be treated by my PCP because I only had two bands out of five that tested positive for Lyme.
Posted 6/2/2015 2:56 PM (GMT 0)
It's so frustrating. She doesn't care how I feel one bit. She even questioned me if I checked off to be checked from Hep A and B on the paper for my blood work without her permission or something , because they checked me for that and she didn't request it do be done. I said no, why would I care about that? She said its strange to her because she didn't ask for that to be checked so they shouldn't off. I asked her maybe they got my blood work mixed up with someone else's then and that Lyme test is not even my results? She said maybe.
Posted 6/2/2015 3:00 PM (GMT 0)
would it still show EIA positive and IgM positive like my last one...or do I risk it not even being picked up this time? Do you think there is a better chance of the IgG becoming positive now that I'm doing a round of antibiotics? Without that happening then I will be dismissed from infectious disease and my stupid doctor.

Post Edited (JessicaMommy) : 6/4/2015 7:53:51 PM (GMT-6)

Posted 6/2/2015 3:16 PM (GMT 0)
Let's hope my Lyme Disease test was a false positive because I'm screwed if its not. I have a horrible doctor and no money for treatment in the states. I have four children (2,5,9,10) and would not even have the time let alone money to travel.

Hopefully this statement is true :

In late Lyme disease, the predominant antibody response is usually IgG. It is highly unusual that a patient with active Lyme disease has only an IgM response to Borrelia burgdorferi after one month of infection. A positive IgM result alone is not recommended for use in determining active disease in persons with illness of longer than one month duration, because the likelihood of a false-positive tests result is high for these individuals.

I know many people don't respond to the IgG test part, but MOST do in late infection...that's all the hope I have to hold on to right now. Life is feeling pretty unbearable to me right now.
Posted 6/2/2015 3:21 PM (GMT 0)
Jessica, sorry to say there is no such thing as a false positive Lyme test. I have late Lyme and it is positive IGM.
Posted 6/2/2015 3:29 PM (GMT 0)
.

Post Edited (JessicaMommy) : 6/4/2015 7:55:11 PM (GMT-6)

Posted 6/2/2015 4:42 PM (GMT 0)
Jessica
You need to remember Dr.s are people too. They can be rude, have a bad day etc, and most of the time ,just like you and me, they really don't know what is going on with certainty. That's is the hard fact of being a health care professional. The human body is just to complex with limited symptoms to figure out whats wrong with it. I read a report one time about the Mayo clinic giving the proper diagnosis only 30% of the time and they are one of the best!
That being said I would listen to what your body is telling you. How have you felt on the antibiotics? Have they made the symptoms better, worse or no change? To me that is worth far more than any Dr.s "opinion" or any test. Tests can be a false positive or negative, with Lyme it is more often then not a false negative. Get it re-tested but make sure it is with a lab that that specializes in Lyme like Igenex. When it comes down to it most Dr.s depend on their experience and training to make a diagnosis. I would at the least find a LLMD and go one time to test the water. See what it is like to be treated be someone who is experienced and comfortable with treating Lyme. I guarantee they wont be rude about it.
Posted 6/2/2015 5:24 PM (GMT 0)
Greg,

It feels like my dizziness got worse on day 7 of the antibiotics and then on day 11 I starting getting back to my usual dizziness. I'm on day 12 now of my 21 day course. Its always been my only symptom along with tired and tingling in my spine. I've never had any other symptoms over the years. It started with dizziness out of nowhere 5 1/2 years ago, and has continued ever since.

Post Edited (JessicaMommy) : 6/4/2015 7:51:10 PM (GMT-6)

Posted 6/2/2015 5:32 PM (GMT 0)
Weird timing - I just got a call from the neurologist for an Appointment for next month. My doctor told me it will be a long wait to get in and she only referred me 3 weeks ago. Good I guess to finally be checked out by a neurologist.
Posted 6/2/2015 7:09 PM (GMT 0)
Jessica - I can't remember which Province you live in - is it Manitoba?
Have you checked if there are any LLND's who could assist you in doing an herbal treatment.
There are enough people in this community who can also help with that if you choose it.
Posted 6/2/2015 7:09 PM (GMT 0)
Where did you get that info where you pasted that from? CDC?
Posted 6/2/2015 7:14 PM (GMT 0)
I just googled that criteria you posted about "false positives." That's from the CDC. The CDC doesn't know.
Posted 6/2/2015 9:49 PM (GMT 0)
Girlie - Thanks for your reply. I am in Ontario, and I've found a LLND that is about 2 1/2 hours away that does herbal treatment. However, 2 1/2 hours away with four kiddos and on a limited budget it is still not easy to do. However, I'm happy there is a LLND a couple hours away so if I need her there is that option to try and treat it the herbal way. Do a lot of people have success treating Lyme Disease the herbal way? I'm going to finish my 21 days of doxy and I'll be done with that in another week.

Post Edited (JessicaMommy) : 6/4/2015 5:59:10 PM (GMT-6)

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