First of all, hi everyone, I'm new to the board here. 18 years old from N. California, severely ill since the end of June this year, slowly worsening since then as well. Before my illness I was very active, racing bicycles, riding > 10 hours a week, working full-time during the summer, generally living a normal life. I'm currently on medical leave from university� was supposed to start at University of Washington this September but definitely unable to do so at this point.
I'll try to give a concise medical summary here� I'll also try to make it as coherent as possible but my apologies in advance if that isn't the case. (I'm sure you all know the feeling.) While reading, you can keep in mind that I have Kaiser insurance through my father, who works in the behavioral health dept., but I'm privileged in that my family and I have no problem going outside of Kaiser and paying out of pocket, to a reasonable extent.
Every summer since 2006 - Possible (and likely) tick exposure at summer camp in Mendocino county, CA. No recollection of ever having a rash or tick bite.
August 2009 - Back from summer camp, cold-like virus. Lasts for a couple weeks but I still feel fatigued after cold lifts. I suspect mono so I visit my pediatrician who tests me and declares me healthy. I feel better after a couple weeks so I don't give it any more though.
January 2010 - In Los Angeles visiting family and feeling super fatigued� sleeping during day, waking up in the morning groggy, etc. Worrying, but after a week or two it goes away.
February to June 2010 - Episodes of severe fatigue like before, each one a few days in length. Happening infrequently so I don't pay much attention and just try to stay healthy.
June 2010 - Return from two weeks at summer camp and fall ill with cold-like symptoms and severe fatigue. These symptoms lift after a week or so, but the fatigue stays present. I return to pediatrician who runs tests including B. Burdorferi antibody test, which comes back negative. He tells me he sees nothing wrong and I should be better soon.
June 2010 to Present - Worsening and multiplying symptoms. Severe fatigue, muscle soreness/weakness, muscle twitches, insomnia, orthostatic hypotension (dizzy and blurred vision when standing), headaches, dry eyes and slightly blurred vision, irritability (but who wouldn't be irate?), mild sore throat and stuffiness.
Severe fatigue and muscle weakness is main symptom. I'm pretty much housebound at this point, with the exception of doctors' appointments which I am no longer able to drive myself to.
At first I went down the path of Chronic Fatigue Syndrome. I have "moderately high" HHV-6 IgG titers (1:160) but other than that, no real evidence of viral infection.
Finally I saw a doctor who happened to be educated about Lyme as well as chronic fatigue.
My doctor says he's 90% sure it's lyme, and he had ordered a more specific test on the 31 band to confirm this. I'm also going to send blood for the confection panel after this holiday weekend.
My previous CFS doc is wary of the iGenex results� but as I see it, there is significantly more evidence pointing towards Lyme + Co-infections rather than virus(es).
Anyone care to weigh in? I'm definitely having a hard time dealing with all of this confusion, as well as two divorced, well-meaning parents, who manage to get in the way and complicate things despite their best intentions. My current plan is to wait for the confirmation of the 31 kPa test as well as the co-infection panel, and take my doc's referral to someone who will treat lyme ASAP. (He is very lyme-literate but does not deal with the treatment, as he deals with a broader spectrum of illnesses and says that treating lyme is best left to someone who does it full-time.) I'm trying to do this in a timely matter� as I know that the longer I wait, the harder it will be to treat.
Again, any information or hypotheses you may have are welcomed. Thanks in advance for the help.
[ 12-10-2010, 06:06 PM: Message edited by: 5vforest ]
Posted by Lymetoo (Member # 743) on :
With all of those symptoms and all of those bands, it points to Lyme.
And a positive IFA?? I don't think you can argue with that one.
Were either of the tests IgG or IgM overall positive?? Maybe not since you have so many "IND's"
Click on this link and print it out. Read over the information several times. VERY important information!!!
Also included are symptoms of coinfections, which you may have. Some of your symptoms point to babesia, as well.
Posted by 5vforest (Member # 29365) on :
Thanks a bunch. Neither of the blots were overall positive because of the many INDs.
Thanks for the link too... I also have the pdf of "Advanced topics in Lyme disease" by Dr. B from the ILADS site.
My next question is... should I seek out a way to start treatment before receiving the results of my coinfection panel?
Posted by mcg08002 (Member # 24617) on :
Hey dear! Welcome to the lyme club ;-) Its not a club anyone signs up for. But let me tell you, you're not alone. You have come to the right place.
I am 20, and also on a medical leave from Brigham Young University. We have the same symptoms (Except I ended up with Hypertension not Hypo). I too, use to be sooo athletic. I did varsity softball, I clogged, Jazz.... and after 10 months of long term antibiotic treatment, i can start to run again.
I cant recall a tick bite exactly, I do have an idea, but sometimes they are smaller than what the eye can see.
I also, have a positive lyme test like you. Feel Lukcy! We are the lucky ones on this site to have positive tests!!! This will help with getting treatment.
If you have ANY questions, feel free to ask. The people here in this site, are here to help you. If it wasnt for them, i dont think I would be alive right now to be honest.
Keebler here is full of insight. She is amazing.
I recommend you watch "Under Our Skin". This will give you a better understanding of the battle you're now facing.
I noticed we have had lyme for about the same time.
Its a long road but there will be light at the end!
Feel free to message me whenever, its nice knowing others who are our age who have it.
Posted by Lymetoo (Member # 743) on :
Might as well find an LLMD now. He/she can run the coinfection panel.
There are some great LLMD's in northern CA. Go to seeking a Doctor Forum on this site to find one.
I hope your parents are able to come together and work with your best interests at heart for this. I have a son, who probably has congenital Lyme, but definitely has Bipolar Disorder, diagnosed at the end of 4 years of college.
His dad and I are divorced, but his illness has helped us learn to work together for his good, which has helped our relationship overall, and makes it easier to communicate about all three of our kids and our granddaughter.
That is the silver lining of his illness, as well as his finding his calling working with others with the same diagnosis.
Good luck to you!
Posted by 5vforest (Member # 29365) on :
quote:Originally posted by mcg08002: I am 20, and also on a medical leave from Brigham Young University. We have the same symptoms (Except I ended up with Hypertension not Hypo). I too, use to be sooo athletic. I did varsity softball, I clogged, Jazz.... and after 10 months of long term antibiotic treatment, i can start to run again.
Thanks so much for your reply... and yeah, it is great to know that someone my age is going through the same thing, or at least something so similar. I feel like some of the literature and suggestions re: chronic illness can be a be alienating for folks our age. (Had a bit of a laugh while perusing CFS blogs and finding someone with my same symptoms, only to read a few lines later that her symptoms started after her second pregnancy.)
quote:Originally posted by Lymetoo: Might as well find an LLMD now. He/she can run the coinfection panel.
Yep, I've got a line on a couple good docs in SF. Hopefully I'll be able to get something going after the holiday weekend.
quote:Originally posted by lymednva: I hope your parents are able to come together and work with your best interests at heart for this.
Thankfully they get along quite well these days. It's just a bit harder trying to keep both of them in the loop when I only live with my dad.
Posted by 5vforest (Member # 29365) on :
Just wanted to post an update here.
Just got my co-infection panel, CD57, and C4a results back:
From what I've read, the conclusion to be drawn is that due to the normal CD57 count (although the efficacy of using this as marker has been debated), paired with the positive Bart results, my symptoms, and the elevated C4a, is that the Bartonella is what is wreaking havoc on my body and making me (very) ill.
Not to worry, I have an appointment at Dr. H's clinic in a few days and hopefully I'll be able to start treatment.
Just wanted to make sure I haven't overlooked anything in my assumptions... I just think it would be best to have a decent idea of what's going on before my appointment.
Thanks all.
Posted by Lymetoo (Member # 743) on :
Good to know!! Now you can get on with treating!!
Any idea how you got the bart?
Posted by 5vforest (Member # 29365) on :
Well, it looks like Bart can be transmitted via ticks, as well as by fleas and cats. (1)(2)
I've lived with cats my entire life, but we keep them well-groomed and very rarely have problems with fleas. I also was at high risk for tick exposure... but don't remember a bite. Hard to say.
