posted
So I've made my way to this forum... I've been presented with the possiblity of lyme, but I have some serious reservations about it. I'm thinking I may just be in "lyme denial" but I'm not sure. Here's my brief history...I've been "sick" for almost 2 yrs. Did get the diagnosis of POTS last year. Had WB shortly after which was neg (of course). Had Igenix WB recently and here are my results: IgM 31++, 66+, 83-93+, 23-25 34 41 IND. IgG 41 IND, all others neg. My IFA Burg was equivocal. My PCP has strongly suggested seeing a LLMD. Part of my hesitation is that I've seen my progress in the past year. Of course, I also know that I've adapted to my limitations. However, I have always been under the impression that with untreated Lyme to progressively get worse. I've been working with my ND and definately seeing positive changes. Of course, I'm far from where I was before I got "sick" but I can function now (at least most of the time - I still have my couch days/weeks, but they are becoming less). By functioning I mean that I can get the kids to school and feed us and keep the laundry done and some days even a little more than that. I still can't work. Am I settling? I don't know. I also know that (stupidly so) money is a concern...but I know my health is more important...blah blah...same stuff you've heard/thought a thousand times. Insights and opinions please. Do I have a good reason to see a LLMD? Do they just say everyone has lyme since it's their "specialty?" Does the fact that I've made good progress over the past year make it less likely that it's lyme? Thanks in advance!!
Posts: 18 | From Marlborough, MA | Registered: Aug 2011
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jackie51
Frequent Contributor (1K+ posts)
Member # 14233
posted
If you don't have lyme, a llmd won't lead you down the lyme path. That's just plain silly. While all doctors can make a mistake, these doctors spend a lot of time going over symptoms, treatment, etc.
Do not settle for anything less than 100% functioning, though I have no idea how old you are. Once you are getting better, it is easier to surmise what is lyme and what is actually just getting older.
Good luck.
Posts: 1374 | From Crazy Town | Registered: Dec 2007
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bcb1200
Frequent Contributor (1K+ posts)
Member # 25745
posted
You were positive on bands 83 / 93 which is the DNA of lyme. Why are you doubting lyme when its DNA showed up on your western blot?
-------------------- Bite date ? 2/10 symptoms began 5/10 dx'd, after 3 months numerous test and doctors
IgM Igenex +/CDC + + 23/25, 30, 31, 34, 41, 83/93
Currently on:
Currently at around 95% +/- most days. Posts: 3134 | From Massachusetts | Registered: May 2010
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quote:Originally posted by bcb1200: You were positive on bands 83 / 93 which is the DNA of lyme. Why are you doubting lyme when its DNA showed up on your western blot?
- You took the words right out of my mouth! And then there are the other specific bands.
Lyme can go dormant .. but it is still devastating your body, piece by piece.
--
Band 83: This is the DNA or genetic material of Borrelia burgdorferi. It is the same thing as the 93, based upon the medical literature. But laboratories vary in assigning significance to the 83 versus the 93.
Band 93: The DNA or genetic material of Borrelia burgdorferi.
I was like you in the beginning. Even though I received a positive western blot test from Igenix for lyme - I had my doubts.
I did seek out a LLMD, but for an entire year after I got the positive western blot I continued to go see other specialists to see if there might be another answer.
I never found another answer. I had so many tests done, seen so many specialists, and the only thing that ever came back positive was lyme, babesia, hemobartonella, mycoplasma, EBV and HHV. It took a while, but I have no doubts that I am fighting lyme and co-infections.
My advice to you - if you have insurance go ahead and check into other things, but go to a LLMD while you are checking. Also, if you start to get better after antibiotics then you will know it's tick borne infections.
After just 5 months of antibiotic therapy I was getting a lot of my functioning back after being laid out on the couch most days. I am working part time, going to grad school (two quarters left to graduate) and here for my family too.
Go for the 100% functioning - you won't regret, but you will wonder why you settled for anything less
posted
Starting ABX now could save you a world of misery. This is a lot to take in at first. But really, will it hurt to see a Lyme doc? And see a good one. Most good LLMD's have more patients than they can handle, it would be unlikely they would risk their license, reputation, and in some cases, their families and lives just to fleece you out of some cash. That isn't to say there aren't some Charlatans out there, but if you stick with this board, I think there are some very helpful folks who can point you in the right direction.
A shadow of doubt is enough to seek treatment, or even reassurance from a LLMD. Please do so. This disease can really mess you up in a big way.
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posted
Thanks for all your replies! I just needed some insights to help me in my decision making...I'm calling for an appt this morning. Thank you.
Posts: 18 | From Marlborough, MA | Registered: Aug 2011
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posted
You sound JUST like me! (In your thought processes especially)
The only test I had done was 2 years ago and of course it was CDC negative. (ELISA c6 peptide=.46) It was done by a rheumatologist. Since then, I've been to every doctor imaginable. I've been diagnosed as having everything from fibromyalgia, possible lupus, RA to just plain old anxiety and stress.
I'm sick of feeling bad. I'm seeing a LLMD next month and I cannot wait! I am still researching and reading everything. I had your same thoughts about LLMD's---do they diagnose everyone the see as having LD? I can't help but wonder that. I have seen a rheumatologist who is notorious for diagnosing EVERYONE with Undifferentiated Spondylarthropy....and that's what he said I had.
That said....the people on this board seem to be very intelligent and I am trusting my instincts and looking forward to my little excursion out of state to see the LLMD.
Keep us posted. I'm right there with you so I will be keeping my eye on your progress.
-------------------- Beth Undiagnosed since 7/2009
Healing is a matter of time, but it is sometimes also a matter of opportunity. ~Hippocrates Posts: 31 | From North Texas | Registered: Jul 2011
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MichaelTampa
Frequent Contributor (1K+ posts)
Member # 24868
posted
It is very easy to make progress with health issues when you have lyme and are not treating specifically for lyme. That is because lyme affects so many body systems in so many ways. If you come from a place of not treating any of those problems it creates, it is easy to do some things that will not be treating the root cause, and they will help some and you will feel better some. But in the end until you really treat the root cause, there will be limits to how far you can go with that, and can ultimately start going backwards as the root lyme gets worse.
Posts: 1927 | From se usa | Registered: Mar 2010
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