Warnings about Lyme Disease

frozenrain

New Member
Hello Frozenrain. So sorry to hear you have lyme and that it took so long to catch it. Unfortunately, that is often the case with lyme disease. I was sick for nearly 2 years and saw about 15 Drs before finally being diagnosed. The good news is you now know what was causing all those symptoms. It is scary, as lyme can be a devastating disease, but there are lots of folks on the forums who have lyme and they can be very supportive and provide a lot of useful information. Feel free to send me a PM if there is anything you have questions about. Im not a lyme expert, but my children and I have all tested positive for lyme so we've been through this many times. Also, if you use Facebook, I have a Facebook page for Southern Maryland Lyme information (Southern Maryland Lyme | Facebook). Good luck to you!

Thanks for your reply.Thank you for all the hard work you have been doing!!! I just 'liked 'your Southern maryland page.
I looked at the check list for this disease and I had so many of the symptoms-unbelievable!
I hope you and your family are doing O.K now.I wish I lived nearer so I could go to the support group but I am in Frederick now.
Thank you again!!
 

frozenrain

New Member
What is most scaring me now is reading how many people believe a short course of antibiotics does not work.I think having late stage symptoms in such a way as I do makes me worry that it will not eradicate the bacteria fully. Maybe I need to search for a specialist as my kaiser Md is probably going to believe that a short course kills all the bacteria.
 

Jameo

What?!
What is most scaring me now is reading how many people believe a short course of antibiotics does not work.I think having late stage symptoms in such a way as I do makes me worry that it will not eradicate the bacteria fully. Maybe I need to search for a specialist as my kaiser Md is probably going to believe that a short course kills all the bacteria.

Try to find a doctor that will do an aggressive treatment.

My first doctor just gave me the 2 weeks of antibiotics and I was sent on my way. At the time, I knew nothing about lyme. 2 weeks on the antibiotics and I did feel better (mine was caught early :knockonwood:) but 6 wks later, the symptoms came back. Back to the doc I went. He told me he did not feel it was lyme again and I must have been bitten by another tick to be infected again. :dork: 2 more weeks of antibiotics and I still felt like crap. The doctor didn’t want to do anything else for me. I found a another doctor, and my first visit to him, before he did any blood work, I had an appointment set up to get my PICC line put in. 5 months of IV and oral antibiotics. That was 2 years ago and I’m still symptom free :smile:
 

frozenrain

New Member
Try to find a doctor that will do an aggressive treatment.

My first doctor just gave me the 2 weeks of antibiotics and I was sent on my way. At the time, I knew nothing about lyme. 2 weeks on the antibiotics and I did feel better (mine was caught early :knockonwood:) but 6 wks later, the symptoms came back. Back to the doc I went. He told me he did not feel it was lyme again and I must have been bitten by another tick to be infected again. :dork: 2 more weeks of antibiotics and I still felt like crap. The doctor didn’t want to do anything else for me. I found a another doctor, and my first visit to him, before he did any blood work, I had an appointment set up to get my PICC line put in. 5 months of IV and oral antibiotics. That was 2 years ago and I’m still symptom free :smile:

yes this is what I keep reading over and over again.All I have been given is 3 weeks worth of 500mg 3x a day antibiotics. Seems a bit too good to be true to eradicate a bacteria that has been in me for over 2 and a half years.
I am so glad you found a good doctor.If you do not mind me asking was it costly because I know kaiser are not going to find me one!
I am glad you are symptom free as I type I have those creeepy crawly feelings around my mouth .
Thanks for replying and glad you got well!
 

Gripper

New Member
yes this is what I keep reading over and over again.All I have been given is 3 weeks worth of 500mg 3x a day antibiotics. Seems a bit too good to be true to eradicate a bacteria that has been in me for over 2 and a half years.
I am so glad you found a good doctor.If you do not mind me asking was it costly because I know kaiser are not going to find me one!
I am glad you are symptom free as I type I have those creeepy crawly feelings around my mouth .
Thanks for replying and glad you got well!

What type of antibiotic did your Dr give you? If you have had it for 2 years, 3 weeks is not going to do it. Some say that once you have chronic lyme, you will never truly get rid of it. You said your were in Frederick? I have a list of lyme literate Drs - Ill look and see if I can find someone near you. Many do not take insurance, but a rare few do. You can prob get quite a few recommendations from folks on the forum, as many just lost their local lyme dr and have been searching for a new one. As for the picc line, which I also had, that varies by insurance. I have Blue Cross Blue Shield and while they covered a portion of it, it still cost me thousands of dollars to do 6 months of IV. :-( But I have been relatively symptom free for almost 2 years. I had facial paralysis too (Bells Palsy) and my face is completely normal now. Except for a slightly crooked smile, which I hope adds character. :)
 

frozenrain

New Member
What type of antibiotic did your Dr give you? If you have had it for 2 years, 3 weeks is not going to do it. Some say that once you have chronic lyme, you will never truly get rid of it. You said your were in Frederick? I have a list of lyme literate Drs - Ill look and see if I can find someone near you. Many do not take insurance, but a rare few do. You can prob get quite a few recommendations from folks on the forum, as many just lost their local lyme dr and have been searching for a new one. As for the picc line, which I also had, that varies by insurance. I have Blue Cross Blue Shield and while they covered a portion of it, it still cost me thousands of dollars to do 6 months of IV. :-( But I have been relatively symptom free for almost 2 years. I had facial paralysis too (Bells Palsy) and my face is completely normal now. Except for a slightly crooked smile, which I hope adds character. :)
It is frightening all these stories.One lady ended up in a wheel chair and even after treating her with antibiotics they found Lyme bacteria swimming in her spinal fluid. I just do not know what to believe. I am glad you got your insurance to pay a little but sorry you had to pay thousands for treatment.It is disgusting how many people say that they were still ill after antibiotics and yet nothing is done about the guidelines.I read that 48% of doctors were undecided if chronic lyme disease existed.So nearly half all regular doctors are saying that a short treatment may not help!!!!! THEY DO NOT KNOW!! In the mean time there are many people out there suffering who may not be able to afford to see a specialist.
I am not being funny but I did notice many people in wheel chairs when I lived in Southern Maryland-it does make you wonder being in an endemic area that many people are not being diagnosed.If it had not been the urgent care doctor my internal medicine doctor would have done auto-immune tests and that would have been it and dismissed it to allergies,stress hormones etc.
I would appreciate it if you could see if there was a doctor near Frederick Md.
I am glad that you are mostly feeling better now and I am sure your mouth does add character :)
Thank you for helping!! Oh I am on amoxicillin.
 
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