I haven't really used this site much, but I just started really looking into it and I see what a helpful community it is and was thinking someone might be able to help me with my situation.
I was bitten when I was 15, and I am now 27. When I first got the bite, I only found out because I couldn't turn my neck while watching a basketball game, and the next morning woke up paralyzed.
It took them a while to figure out it was Lyme due to the extremity of my reaction and seeming to be unaware of Lyme's effects, so I am sure I wasn't treated properly even though I was eventually administered antibiotics.
Unfortunately, it wasn't until just this year that I connected all my other problems with Lyme.
I had been diagnosed with Narcolepsy two years ago, mostly due to a really deep and maddening inability to get out of bed on seemingly random mornings and general chronic fatigue.
I fought it really hard- I am a strong willed person and really believe in personal change, in fact my whole life revolves around it, so it was deeply depressing and concerning that I couldn't get out of bed when everyone I asked said the solution was to "just do it".
It may sell shoes, but sometimes you just can't. I had always blamed myself, living a late-night party and drinking lifestyle, but especially after I stopped all that and tried so hard to fix it and couldn't- I've been forced to accept there were some deeper problems.
After I saw a LLMD, I was diagnosed with a Lyme/ Babesia co-infection and prescribed first a round of Coartem, then Mepron with Azithromax, supplemented with about 6 nutriceuticals, including artemisenin, DHEA, etc.
There was one period where I decided to be really, really strict with the sugar free, yeast free diet. During that period, I felt incontrovertible proof of a physical problem that had been holding me back through my adult life.
I suddenly had energy. I could focus. I could follow through on tasks, and start new ones, and felt more mentally alive, and be on time to things. I even felt I could suddenly play chess again, which I could only do extremely poorly since I was a little kid, and attribute either to an ability to do sequential logical processing from Lyme or sudden personal inspiration.
That issue has become a serious dilemma in my life, and is one of the main elements of this post I need help with.
I have no doubt that emotional and psychological issues have blended in with the physical effects of Lyme. If the current diagnosis is true, my entire adult life, the person I identify as myself and my weaknesses and limitations has been in part defined by Lyme.
It's a scary, but, if surpassed, beautiful thought.
It takes willpower even to say I have Lyme without caveat. With no diagnosis, blaming myself for so so long, misdiagnosis, and unclear unprovable diagnosis, I just ca't be sure this really can go away.
I know parts of this are me, and parts are things I have blamed on Lyme. I've tried to wipe the slate clean, take my meds and believe everything can change (Forgetting that totally defeated feeling when you try to to change what can't) and just go forward.
But I've hit another stumbling block.
I was recently in Africa, an incredible, beautiful opportunity and experience. I met someone there, a very intelligent and aware person with a lifetime of experience in various parasitic diseases, who heard my case, and gave me some advice-
He felt the cocktail of drugs I was on for almost four months already (I was also still taking nuvigil (modafinil) for the exhaustion) was only going to suppress a parasite like Lyme, and that it would be better to stop, wait and see if symptoms came back, then test and attack it hard.
Because of the situation I was in, two weeks in a very natural environment, active all day, waking and sleeping with the sun, I knew that if I were to take this advice, it would be the perfect time to attempt a natural recovery.
And something about the idea felt right to me.
So, I went off the medications, and I felt great. returning to New York, I kept working well, but haven't really felt 100% or anything, and there had been intermittent down times, seemingly getting worse as time went by, but unclear.
It's been nice for my mind not being on the modafinil- Turns out I didn't need it, but did need to the time to stay off it to come back to normal.
Then, I just got a sinus infection, and the abnormal amount of weakness and utter exhaustion I felt when I woke from a night not breathing right convinced me something is still deeply wrong in my system.
I understand it takes a while to clear out the disease, and a good three months before red blood cells regenerate, so I don't know if this was a mistake, but I also feel it was a somewhat untargeted approach with something that can hide so easily and the idea of it coming back really scares me.
I connected with another doctor through this friend, a tropical disease specialist, who would like me to get re-tested, and recommends Doxicycline for Lyme and Malarone/Azithromycine for Babesia if that is indeed the case (Though he feels their contemporaneous infection is rare)
Both doctors mentioned the possibility of a thyroid problem. But I don't really know what I should do about that.
I hate being in this uncertain state again, I feel like I've wasted so much of my life ignoring this disease, then fighting it, and now treating it I really, really want to do it right if I'm going to do it.
At least do it in a way I can feel sure of. Everything up to this point has been so uncertain, but it has been through other patients online that I had heard the only stories that actually resonated with my experience, of people sleeping 15 hours and still being tired, waking in a zombie state unable to really get up or do anything, and so many other similarities.
Luckily that main symptom is gone, but it's been revealed that I long ago accepted a general exhaustion and desire to just not do anything (Everything I do I just want to stop as soon as it's done) that is deeply contradictory to my personality and might be able to be cured.
I will list some other non-exhaustion symptoms below for anyone who really wants the full information, but the main issues for me are knowing what the best next step to take is, and knowing if there's anything I'm missing, or anything else I should be doing.
POSSIBLE SYMPTOMS: Memory problems, lack of muscle growth, concentration problems, occasional lightheaded fainting feeling and vision blurs when I stand up, reduced initiative, low appetite, low libido, general lethargy/ energy problems.
I really just need some feeling of knowing if I really can get better, I know I can improve, but does it ever really go away?
Has anyone else here shared being a borderline case, with not extremely debilitating symptoms but a really deep, pervasive exhaustion?
Any help anyone can give is truly appreciated. No one else really connects with me on this, and I'm finally at the point where I realize I need as much help as I can get.
I want to get better!
It's tough for me to even say that. Not sure why.
But I feel there's a life another life I should, and maybe could be living.
Hope you all are well, I wish you the best.
Posts: 15 | From New York, NY | Registered: Feb 2010
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I would say to find the best LLMD you can and be tested again.. though the test is not really necessary. We know you're still having problems.. and those need to be addressed.
Lyme and babesia affect everyone in different ways. I think your overwhelming exhaustion is likely due to babesia.
It is COMMON for patients to have Lyme along with various coinfections. Very few have only Lyme.
If you'd like, you can PM me the name of this dr who is willing to help you and I'll let you know if he is on our list of LLMD's. Then you'll know you are in good hands.
Lyme disease and coinfections symptoms are found here, along with other information.
posted
My daugghter was bitten at age 5. She is now 16 and was just diagnosed with Lyme. Her case is a sad one. Over the past several years she has had less and less energy, has always felt tired. Throughout her childhood she has played sports, done well in school and had lots of friends. She dreams one day of being a surgeon.
Then Wham! She gets Mono, and hasn't been well since. It's been 1 1/2 years. She has been in treatment for Lyme and co for the past 6 months and is still exhausted and not seeing much improvement. YET. She will get there.
You and she have had the disease for the same amount of time. It sounds like it has impacted your lives in similar ways. She 'wants' to be normal and lived her life that way for 11 years. Pushing, pushing, pushing. She would get sick, we would go to the doctor, adn they would tell her she is depressed or constipated, or give me that look like you are too soft on her. Just make her do it.
The way I look at it is this. She is an amazing young woman who has done alot in her life already. She has never known 'health'. Right now her life is pretty bleak, but at least there's hope for wellness.
I think that with treatment, even though it may be a long/hard road that she will get well and will be teh same wonderful person that she is today, but will be running circles around us and full of energy for living.
Without treatment, she just exists. She has more in store for her than 'this'. So do you. I think that finding a good LLMD and determining the best treatment plan will give you the answers you seek, and that when done, life will be your oyster.
Good luck!!
Posts: 333 | From Lyme Here Too | Registered: Mar 2010
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posted
So glad you came on line and shared your story.
Not to discount the tropical disease doc, but the reality is that most long term chronic tickborne patients do have multiple infections. If the doc does not believe this, then personally I think you need to find another doc.
As for the tests -- the real proof is in the response to treatment. You were making progress in getting your life back while on antibiotics and you have declined since stopping them. To me that is reason enough to continue to treat.
If you could get someone to order a bloodslide from Clongen lab (only $100) they would most likely find either a bacteria or parasite in your blood. Unfortunately many of these bartonella like organisms can't be identified by PCR (DNA sequencing) -- the reason many have negative test results.
Lyme tests are totally unreliable -- especially if you also have a bartonella like organism which suppresses your immune system. I would rather you spend your money on a really good LLMD than waste it on additional tests.
You have an advantage over people like my hubby -- he never even knew he was bitten by a tick.
You are obviously an intelligent person -- you figured out your problem on your own. Good for you. Stay strong and keep fighting to recover your health.
Bea Seibert
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Ditto to Bea's suggestion:
"I would rather you spend your money on a really good LLMD than waste it on additional tests." -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Lymemom, your story is indeed incredibly similar, and comforting even its pain. It's terrible to think of what happened to me happening at those ages.
I really relate to the just existing idea- When I saw The Diving Bell And The Butterfly film, after a lot of weeping, I realized it was all about the difference between being alive and living, and didn't understand why everyone else wasn't as moved as I was... That was pre-diagnosis, so I guess I get it now.
One positive thing I can say is that I am convinced that the exhaustion led me to develop certain mental faculties in a different, creative way, especially as a naturally introspective person, that have created my most unique gifts to offer, and your daughter may come out a stronger, and perhaps gifted in other ways from the experience.
Seibertneurolyme and keebler, your advice makes a lot of sense. I don't really believe in the tests and accept I am just desperate for some confirmation. I thought perhaps having the two different ones over this period may give a smart doctor a clearer sense of my situation to treat properly and be a worthwhile investment.
Since I felt best while on treatment and the intensive diet, I may go back on that, I'm just not sure how long I need to expect to do that, as it was quite difficult, though well worth it...
At least I'm finally trying to be proactive about this, hope it all works out.
Posts: 15 | From New York, NY | Registered: Feb 2010
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