After 7 months of seeing my PCP and specialists I finnaly went to Dr. S and got a clinical diagnosis for bartonella and lymes. I will be starting treatment tomorrow, and I hope he is correct that I will feel better by Mid April.
Were any of you worried even after a clinical diagnosis, that Lyme / Bart may not be right? I truly believe I have Lyme/Bart, but I feel uneasy that the test are so unrealiable that they come back negative......
Posted by Beverly (Member # 1271) on :
I know what you mean, I wish we had better tests. I think the positive test I had for Babesia made ME feel better, probably because I didn't have some of the more classic symptoms for Babs.
And although I did have a couple of positive bands on my IGeneX tests for Lyme, they would be considered negative.
I am glad I went to a LLMD and had a SPECT scan done, but I think the most reliable indication for me that I did have Lyme and Babesia was how much better I felt after treatment.
I hope you start feeling better soon, hang in there and keep us posted.
Posted by BJK (Member # 13251) on :
Initially starting treatment mach 07' I felt better in just a few weeks.
If you look at my story link below you'll see the ups and downs since then.
I continue to improve, looking very long term, its been almost a year. Even if your docs prediction is correct, full recovery could take a while. Im not trying to be negative but just want you to be prepared for the possibility.
Based on my docs experience and my condition he estimated 1.5-2 years of treatment, if I repsonded well. So far he was on track.
More rcently I have a certain group of symptoms that are not getting better. This prompted allot of tests for co-infections (all came back negative). Now, based on symptoms alone, Im starting treatment for Babesia as well as Lyme.
After looking at the Bartonella and Babesia I do wonder what I really have, It may be both, time will tell as I see how I respond to the trial treatments.
Im glad you have been diagnosed. Thinking positive can be difficult at times but it definetely helps your body get well. Dont be discouraged if this takes longer than expected (easy to say-I wasnt good at this), these are tough bugs to kill.
PS- As mentioned before I too had a SPECT scan, this has been helpful both for confirming diagnosis and to have "objective" evidence for disability. Because of my neurological involvement and cognitive problems I also had a neuro-psychological exam as well. These tests all showed significant "objective" impairments.
Posted by EyeBob (Member # 12572) on :
I'll chime in.
I think that you touch upon something that several sufferers are concerned about. The fact that Lyme is mostly a clinical diagnosis has many of us who rely on "positive" tests to qualify it to question the diagnosis.
I too went through this. I still do to a degree. My initial blood work was negative twice on the ELISA, but I had several of the symptoms listed by Burrascano. I also had other subtle findings in my blood work (low Mg, low Vit D, elevated ANA) that confirmed the Dx for my LLMD. The fact that I only was positive for Band 41 IgG, of course didn't help settle much in my mind.
What I've come to find through my treatment is that I've slowly gotten better. That and the fact that since beginning treatment I've had many more of the listed symptoms (though none to suggest anything other than Bb). So, I've had to see the results for myself to be convinced that Lyme is what I really have. I've never had a SPECT, but my MRI/MRA was clean.
Bottom line.... if you're anything like me you'll continually question the diagnosis, which isn't necessarily a bad thing. If you're more vigilant you'll be a better historian for your LLMD. If you improve, you know you're on the right track.
Posted by LindaInRhodeIsland (Member # 14727) on :
EyeBob, just wanted to respond because I thought it was interesting you had elevated ANA too! Mine was elevated which let the Rheumatologist on a number of wild goose chases trying to find what was causing it. 2 years later I got to a LLMD. Why is the medical community in general not putting these things together?
I know I am preaching to the choir here! Glad to have found this group.
Posted by Tincup (Member # 5829) on :
You said... "Were any of you worried even after a clinical diagnosis, that Lyme / Bart may not be right?"
I wasn't. I knew. And LLMD's know.
It is kinda like a dentist might know you have a tiny cavity in one of your teeth.. but the guy who put the shingles on your roof might not.
Will more infections pop up later once you kick down those two?
Possibly. But at least you have a good start with the LLMD.
Posted by disturbedme (Member # 12346) on :
I was worried, definitely. At first, I was just so glad to have someone (LLMD) finally agree with me and listen and tell me that there was something wrong with me.
But initially, all I had was ONE band positive on the Western Blot -- which was not lyme specific either. Which really worried me and kept me wondering if it was really lyme or not or if I had something even worse, etc. But meds started helping, slowly, but they helped.
Then we did a Bartonella smear from Fry Lab and that came back positive, so that was a little more helpful in letting me believe that it WAS what my LLMD had pretty much believed all along.
Some days I'm still concerned/worried about everything and still think negatively about if it really could be lyme, etc., etc. But for the most part, it's obvious now. Especially since Lyme and Bart treatment have helped me get better. I'm at about 70% now most days, unless I'm having a particularly bad day.
(I do think I might have Babs though as well since I have a lot of symptoms of it... just haven't gotten a positive for it.)
Posted by feelfit (Member # 12770) on :
I question my Lyme diagnosis even though I had 9 of 12 bands positive on the IgM Western Blot. I had ALL of the species specific bands AND a 31+++. CDC Positive too....not that that means much!
I think it's natural to sometimes question.
Posted by F0rbin (Member # 13792) on :
Thank you for the feedback. Dr. S sent my blood to IGENEX for a WB...but I havent' gotten the results yet. Today is day 6 of my treatment, I'm not feeling better yet, but I guess that shouldn't come as a surprise. I wish i wasn't an impatient person.
Posted by Geneal (Member # 10375) on :
I sure hope you are feeling better by April.
However, this is the disease along with co-infections that
Let you have a good morning or day....then bam!
Back to feeling bad.
It is a hard concept after treating different infections with antibiotics
That you will not feel better within 48 hours of starting antibiotics.
You will probably feel worse.
I am putting the "buckle your seatbelt" light on....
'Cause you may be in for one bumpy ride.
Slow and steady wins the race. Too aggressive can hurt you and put
You in the ER. What is your regimen by the way?
Hang in there. I'm going on month 17 of treatment.
While I am much improved over where I was one year ago, I still
Have issues. Especially with babesia.
Posted by F0rbin (Member # 13792) on :
He placed me on Levaquin 500mg in the morning, and then I take 200mg of Doxy at breakfast, and 200mg of Doxy at dinner.....Today is day 8 and I feel worse than I did before I started treatment....hopefully it's just a bad day.
Posted by onthemend (Member # 13454) on :
The current state of diagnosis and treatment for Lyme and other tick-borne diseases leaves many of us in this very unfortunate 'limbo' position.
I've had three igenex WBs, and gotten more and more 'positive' - up to 4 + bands in one test. I have not tested positive for any co's.
What helps me with all of this is that: I was more looked at, poked, prodded, two spinal taps, 4 neuros, including an eyesight specialist, rheums, ID docs, EVERYTHING and EVERY TEST under the sun. My Lyme doc was at the end of this investigatory line. My first Igenex WB had only 1 + and 2 INDs. My LLMD treated me based on a clinical diagnosis anyway. We started at 200 mgs doxy daily (not enough, I know).
I went from bedridden to 50% back in about 6 weeks (that's after ONE AND A HALF YEARS OF SUFFERING AND NEVER GETTING ANY BETTER AT ALL!!!!). Had a major relapse (probably a herx) & got the doxy dose doubled. Then I really started to regain some quality of life, even though all of my symptoms are still not gone (one year later, and still taking doxy). We are talking from DEAD to ALIVE with treatment. So that's what I keep in mind, when I can't overcome all the doubts and questions that this controversy within the medical community has left us with. I'm not even married to the EXACT, EXACT diagnosis (there are so many variations of TBDs we know of, how many more that we don't????). I just know treatment has given my my life (kinda) back.
I have never taken medication before in my life. I've never been sick. I was a fresh air fiend and a competitive athlete. It's hard to believe, but just try. No one likes taking medicine & tampering with the body's natural systems & defenses, but stick with it - your response to the abx - if you have one - will make you a believer. Also, don't forget it can get some worse (a herx) before it gets better. But my better was really, really quick - especially after so long of being quite ill and getting worse all the time.
Didn't realize I would get so passionate and wordy. Just give it a try.
Posted by daise (Member # 13622) on :
From Tincup about LLMD diagnoses:
quote: It is kinda like a dentist might know you have a tiny cavity in one of your teeth.. but the guy who put the shingles on your roof might not.
Posted by F0rbin (Member # 13792) on :
One question for all of you....have any of you ever had shooting pains in your lungs....mine is actually on my right side...and hurts when taking deep breaths... it doesn't really feel like its the muscles, just a stabbing pain in the middle of my right chest. It's not there everyday, but most days...