Hi -- I recently had the opportunity to see Dr. J in Washington, DC. He diagnosed me with neurological Lyme, and has put me on a path forward for treatment.
Primarily, I have suffered from symptoms of neurological Lyme (and the grab-bag of co infections) for the past three years. In the beginning, I had a ton of brain fog, dizziness, short term memory loss, and panic attacks.
I've been lucky in that I've only missed work for a single week when my symptoms showed themselves. My work is highly technical (software engineering), but over the years, I've been able to manage things like a champ when the symptoms hit.
In fact, during the past month, I have never felt better during the past 3 years. Herein, lies my concern...
Dr. J plans to tackle the disease with a trifecta of antibiotics (minocin, zithromax, flagyl) for the first 3 months of 2013. He plans on starting things relatively slowly to see how I react when the Herxing begins...
But honestly, I'm scared. Scared that this balance I've been able to maintain for the past three years will break. I recognize the irrationality of considering "living" with the disease and the impairments that go along with it. But if I've been able to become better and better at managing, is that not perhaps preferable to having my life turned COMPLETELY unside down by ingesting all of these antibiotics and possibly experiencing herxing that leaves me completely debilitated? Posted by lpkayak (Member # 5230) on :
i've been around here a long time and when i see ppl choose (or not be able to afford) to treat they dont do well...it is a steady down hill
i worked...as a teacher during treatment-sounds similar to yours. i had to take less mg at first and ramp up-had to use many probiotics and antifungals-for me-being in the classroom made the diarhea that can come with abx difficult. but i figured it out
i would encourage you to treat. it is a long slow nasty disease without tx
usually.
it wont be easy-and the things you end up dealing with will probably unexpected. you are with a great doc. you are well enough to be able to handle the tx. some are too sick or have no money by the time they find out what is wrong.
good luck. use us here for support.
Posted by PatriotM (Member # 38493) on :
I think that you have asked a very valid question. Since there is no "cure" for Lyme and the co-infections, even with treatment you may have no choice but to live with the disease. You are feeling good now and treatment could certainly change that for the worse. On the other hand, failing to treat could allow the disease to continue to spread throughout your body and then one day explode with bad symptoms.
I decided to "live with" lyme for about 10 years, because I didn't know that LLMDs existed and I got frustrated with incompetent mainstream MDs. In 2011, that finally caught up with me and I had a ton of serious neuro symptoms. I'm finally getting proper treatment and making good progress.
The other thing that concerns me about choosing not to be treated is the effect on the immune system. Could allowing Lyme to remain untreated destroy your immune system and lead to something like cancer or risk of other disease? I know my CD57 level was only 26, which apparently says that my immune system was badly compromised. Also, what about the permanent damage to joints that may be done because of untreated lyme?
You've asked a good question. Good luck on your decision!
Posted by poppy (Member # 5355) on :
The problem is that you don't have a crystal ball and can't know what the future will bring if you don't treat. It could just keep being manageable or something could change and it would then stomp you flat.
My situation was manageable for the first couple of years, then suddenly the roof fell in on me, for no apparent reason. Some people have had a trigger, like another illness or car wreck or other immune system affecting event.
We don't know and you don't know. Are you a gambling person? Got risk either way.
Posted by fred0 (Member # 37371) on :
I found myself in the same perdicament. I came up with a positive Westerblot test last May. Prior to that I had suffered horrible Neuro symptoms for decades but the Doctors didn't know what to do except give me anti-depressants which didn't work. Based on that one Westernblot I was put on treatment as diagnosed with Neuro Lyme.
Now I've been on treatment for about 3 months and see no difference as far as improvement. I haven't got bad enough where I can't work but sometimes I feel it's on the edge, like now.
Me and my wife have our own business so I could'nt afford to miss. I've had to be put on Lyrica (given for anxiety) to help me take care of my daily duties and get through the winter which always hits me especially hard. Prior I was taking little benzo drops which were better but I was told I can't stay on them forever because of the addiction factor.
Hate to add to the confusing story but my impression so far is that nobody knows , like has been mentioned. I went to a 'llmd' and I think he sincerely tried but I don't think he knows either. Some of the expensive test I've taken from him contradicted each other. One showed no traces of a Lyme infection.? I took the opinion that I'll at least give treatment a try and see if some of the nasty's could be killed off. It's really a big coin toss!!!
Posted by poppy (Member # 5355) on :
People need to understand the limitations of testing with tickborne diseases, and not expect it to be a perfect science. It just isn't for a lot of reasons. This is why lyme, etc can be a clinical diagnosis, based on history and symptoms. Anyone who has a positive western blot has lyme. There have been studies where blood samples have been tested with various kinds of tests and the results did not match. But what is clear from testing is that false negatives are very common, false positives are not.
And the other thing that fred's story reminds us is that it is not a quick fix. Anyone who has been sick a long time will take time to be treated.
Posted by fred0 (Member # 37371) on :
Agree poppy, thanks. Sorry if I caused unecessary confusion. Because of my WB and clinical history it was obvious it was lyme. I guess I just griped a bit because after spending so much money on one test I would've liked more clarity concerning it, even though the results came out strange.
blueblitz back to you. It sounds like who have a reputable Dr.. I hope you get the care and support you need. I know each story is different but if it helps I was also scared I wouldn't be able to work at least a little. I also thought that I wouldn't be able to handle abx because of my 'kaputt' Gut. I've definetly felt worse but I've still been able to keep working at a mild pace. I know this isn't everyone's story. My year-long Gut problems also cleared up on abx. Go figure.
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