Dear Friends; I have been a silent, anonymous reader for sometime and need to thank everyone who has participated in this message board. Your experiences, advise and compassion have helped me persevere in obtaining LD diagnoses despite all the medical professionals that brushed off my LD concerns. Mine is the same story that has been told over and over in these pages.
Ticker – a special Thank You to you for being a sincere and kind advocate for everyone; some time ago you gave me a LLMD recommendation. I will go my initial consultation asap with IgeneX IgM positive in hand and begin my road to recovery.
My greatest apprehensions right now are that treatment is going to be really awful and cost alot even though I have good insurance. Do you think DR. SH will be able to quell me fears and set me courageously off on the correct course?
I am so glad you are on your way to getting the help you need! This is half the battle. How long have you been sick?
You will be in great hands with Dr. H. I think you will be so relieved to see a doctor who really understnad what you are going through. When is your appointment? Make sure you are tested for the co-infections if you have not been already.
Being your own advocate takes courage and tenacity.
Don't give, keep pushing for treatment for yourself and don't be afraid to ask questions.
Ticker's right - please insist that you get tested for co-infections. I was treated for just Lyme alone for over a year with no improvement. Once I began treating my co-infection (even though I tested negative for it), I progressed a whole lot.
Try not to be nervous and be gentle with yourself.
Good luck to you on your appt. Please let us know how it goes.
One thing I have learned from these boards is to pass the info along. I was helped so much when I first found these boards last year. Now, I try to do whatever I can to help others in the same predictament and also educate people who don't have Lyme's.
I don't know if you've seen your LLMD yet but if you haven't, I found it helps the doctor if you're able to give him/her a list of your symptoms and when each one started. I have horrible brain fog and forget half of what I want to say so writing everything out beforehand makes sure that I don't skip anything important.
LLMD SH gave me an appt for this Thursday! (BTW LLMD RS’s 1st available new patient appt is 2 months out).
My IgM bands were
31 +
34 +
39 IND
41 ++
58 +
83-93 IND
IgG
39 IND
41 ++
58 +
Fortunately I been keeping a symptoms chart for 3 years because like you say the ole’ brain goes blank at the worst times. I think my LD contact was 4 years ago.
Should I go to the hospitals records dept and get copies of my MRI & EKG & positive ANA’s, and blood workups? They didn’t ask for me specifically to bring any records, just a list of meds. I’ll be sure to request testing for co-infections (I’ll bring a list!)
My llmd appt went well. No treatment yet as we need to test for coinfections first. Anyway it's good to have a confirmed diagnosis and time to prepare my body, mind, work and family for what's in store for me.
Does having one + on your bands mean your not as infected as if you had 3 +'s? Or do the +'s flexuate over time and treatment?
Even though I've probably been had it for 5 years what finallt made me sick enought to get the Igenex test done was a 10 dy prescription for augmentin for a sinus infection, that mini treatment was enough to start herx reaction. That sure as heck wasn't in my #$%@ head!
Get this; I found out I had the positive IgeneX test not from my GP but from the County Health Dept who got the report because Lyme is a reportable disease. They called me to ask the usual questions (I assume to decide if they were going to "track" this case) & I had them fax me the results.
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