I have a situation and could really use a little input from people more knowledgeable than myself.
I had a + WB P23 band after 1.5 years of lyme symptoms and a history of a tick bite (though I didn't remember the bite til I really started thinking about it -- I thought that little thing was a highly persistent piece of soil at the time!). My doc didn't feel that the evidence for lyme was strong enough to diagnose, so I began looking for an LLMD. I am presently on the wait list for Dr. C in PA, and I was told it could be up to 6 months before an initial visit.
In the meantime, life goes on and I found my first job out of nursing school, which I adore and do not want to lose. I just completed my 2 wk orientation and am about to start working on the unit on my own. The cognitive dysfunction makes it a challenge, but I believe that if I do my best and have the willingness to ask for help, I should be OK. And I figured that by the time I got in w/ Dr. C, I'd be past my probationary period and they would know and value me well enough for me to (maybe)be honest about the lyme and any tx, and any absence it might cause.
Now enter my parents. Out of the kindness of their hearts and their belief that I don't know what I'm talking about re: Lyme tx, they went to their family doc and told him how their crazy daughter was going to wait 6 months for the lyme specialist, and the doc told them, "She's not being treated now? Have her come in next wk and I'll give her antibiotics."
Mom and Dad were severely miffed at me that I was not jumping for joy about their "good news". When Mom had asked a Physician's Assistant in the doc's office about their lyme protocol, she was told they do 5 wks of oral abx and then IV *only if it's still warranted*.
I would be willing to do the 5 wks of oral if I didn't have this job wherein I still have 2.5 months of a probationary period...I can't be absent or all screwy from Herxing during that time.
Now I feel quite stuck between a rock and a hard place. Do I go for the 5 wks oral and risk screwing up the job I love and worked so hard for, or do I anger and alienate my folks even more by explaining my concerns and saying, "Thanks but no thanks"? Are my concerns re herxing and an increase in cognitive dysfunction valid? I mean, I had more or less a psychotic episode from the lyme last year (though I didn't know about the lyme yet, and this new knowledge that it's "just the lyme" helps me keep my head straight now), and *really* don't want to go through that again, nevermind having people I want to respect and appreciate me as an employee see me like that.
Can anyone give me a little input here, please? I really feel terribly percariously balanced on a precipice that I never expected.
Posted by canefan17 (Member # 22149) on :
Pick your poison
Posted by lymebytes (Member # 11830) on :
I think it depends heavily how symptomatic you are and how bad you feel.
I have 4 people in my family who do not or have stopped treating Lyme because their symptoms are liveable.
My son and I could not live with the symptoms and they consumed our days so we had to treat. It took him 2 years to get well and I am at 3.5 years of treatment w/little progress.
So, IMO, I don't know what good 5 weeks of orals would do..but I could be wrong.
I think it is a choice you will have to make for yourself like those in my family that feel much more functional not treating and really are not getting worse and pretty much living normal lives.
Posted by jkmom (Member # 14004) on :
I am another one that was functional before I started abx. I was worried about herxing and getting worse from the abx, but I decided to treat because I saw what could happen if I didn't treat.
I think I haven't been treated aggressively enough but I have been on abx for about 18 months and only had maybe 3 herxes that lasted less than 24 hours each.
The abx have lessened my symptoms to where they are mostly unnoticeable most of the time. And I have had periods of time where I felt better than I have in years.
It is a tough decision to make.
Posted by LymeXtu (Member # 24590) on :
This is new to me I had no idea people know they have Lyme and decide NOT to treat it. Lymebytes do your family members know how long they have been infected? and what do the experts say about repercussions from not treating? maybe even years from now?? if you are not symptomatic does that mean the bacteria are not multiplying?
Posted by David Miller (Member # 21583) on :
I'd suggest starting slowly and seeing how it goes. If you're experiencing symptoms now it's because the disease is active and you don't want to give it any more of a head start than necessary.
The 5 week course is likely to be 200-300 mg of doxy per day. Start on a wednesday or thursday and hope that if you get a herx it's (mostly) on the weekend.
Everyone reacts differently. Some herx out of their minds, some just start feeling better. I haven't heard a lot of horror stories of people herxing badly on a typical 5 week initial course. The horror stories I've heard were all on higher doses or more powerful abx - flagyl or cipro or rifampin, for example.
So I'd suggest trying it - you might be much better off for most of the time. Worst case you stop abx and take a sick day or two to get over a herx.
Posted by sammy (Member # 13952) on :
I also think that it would be a good idea to start treating. Take what your doctor offers, see what happens. Hopefully you will be able to halt the disease process. You may even begin to notice improvements. If you don't start treating, you will get sicker.
When your initial RX runs out, try to get your local doc to give you refills. If they are not willing, go to an urgent care or minute clinic. It might be easier to get a few weeks of doxy from them (give a sob story, whatever it takes).
I do also want to wish you the best with your new job. Have fun! I hope that you will be able to manage your symptoms while you learn your new responsibilities. New jobs, as with anything new, even good things, come with additional stress.
Stress can be hard on you. It will wear down your immune system. Fatigue is bad too. Try your best to arrange your schedule to allow plenty of breaks. You might want to look into working every other day, two days on two days off, etc. Find what works for you.
Take your breaks at work, they are there for a reason. Eat well, don't let your blood sugar drop, that makes thinking even harder. Drink lots of water. Do whatever you have to do to take care of yourself.
Good luck BatsNCats! You will get better Posted by Karen Mc (Member # 23354) on :
It's just my opinion but I feel like unless your symptoms are VERY bad it might not be a good idea to take a chance and "rock the boat" while during your prob. period. Congrats on the new job!!!
Its a gamble, to treat or not but if you do start treament and it really "stirs" things up it might not be good for you trying to work. Plus what if you only take 5 weeks and then if you cant get more abx it makes things worse?
There are so many things you could do to help your body while waithng ie: vitamins supplements etc.
Also, I don't know how close you live to Dr's C office but if its not too far you might try calling everyday you have off to see if they might have had a last minute cancellation that you could take thus not having to wait 6 months. (or call the afternoon before the day you have off work).
I know its a tough decision but ultimately you will have to decide... trust your instints, how you're feeling and hopefully pray on it. If you are a spiritual person I believe God will direct your path...I know there has been MANY times He has lead me when I had no idea which way to turn.
![[Smile]](smile.gif)