I was just wondering how long it was between getting your diagnosis of Lyme disease and when you started treatment?
Did the LLMD start treatment 1 month later, 2 months later, 2 years later?
Oh, if you were treated for co-infections first, how long between the diagnosis of the co-infections and then how long between the co-infections and starting Lyme treatment?
Kayda
Posts: 582 | From midwest | Registered: Nov 2006
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sparkle7
Frequent Contributor (5K+ posts)
Member # 10397
posted
Once I got the diagnosis, I was given a prescription for antibiotics (Doxycycline pills) right away. I didn't know I had Lyme & was walking around thinking I had Fibromyalgia for 10 years when it was actually Lyme. I really don't know if the antibiotics are going to help me at this point... I've had this stuff in my body for soooo long. My doctor told me to start out taking 100mg, then 200mg & so forth up to 400 mg a day. He didn't want me to be herxing too badly. It took me about 3 months to get up to 400mg. I'm going to see him in a couple of days & I'll see if I should continue or change to some other antibiotic, etc.
Posts: 7772 | From Northeast, again... | Registered: Oct 2006
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Michelle M
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Member # 7200
posted
My soon-to-be LLMD agreed to fax me a scrip for an IGeneX western blot, even though we had yet to meet! (I'd written him a fax, plus sent med. records, so he had a strong suspicion).
He clinically diagnosed me inside of a New York minute, but I wanted to see the IGeneX western blot results before bolting my Doxycycline. Having been through the MS/neuro nightmare, I wanted to feel really certain. Luckily the blot came back with many double/triple positive specific bands.
I am lucky my immune system was insulted enough to produce lots of antibodies.
I had just "failed" a Quest ELISA from the neuro, so was close to resigning myself to dealing with MS.
My coinfection symptoms were so atypical that I declined testing. (Yeah, DUH.) 'Zackly one year later I said, "Something bad, REALLY bad, is STILL inside my head. Maybe it would be a good time to test for babesia even though I've never had a sweat." So we did and I was positive for WA-1.
I was a little scared to start antibiotics because of working/herxing. In reality, it was not pretty at times, but not as bad as I feared.
The sooner the better. I wasn't stressed about a few weeks because I had been infected for several years (I saw the tick and rash). Those newly infected should be all over it ASAP!
Michelle
Posts: 3193 | From Northern California | Registered: Apr 2005
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Beverly
Frequent Contributor (5K+ posts)
Member # 1271
posted
Hi Kayda,
I was re-infected by a tick bite in April 2001, and started treatment with my family doctor I think in late May or June of 2001.
I had about 2 years of lyme treatment and then got treated for Babesia in 2003. That made all the difference for me.
Posts: 6641 | From Michigan | Registered: Jun 2001
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posted
anyone else?
Posts: 582 | From midwest | Registered: Nov 2006
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sixgoofykids
Honored Contributor (10K+ posts)
Member # 11141
posted
I took the IGeneX blood test with my PCP and got the results Dec. 5 last year, saw my LLMD for the first time Jan. 20th and picked up my meds on the way back to the hotel from my appt.
I was the one who figured out I needed to be tested for Lyme. I most likely contracted it 35 years ago. I've had minor symptoms most of that time, with three major flares that lasted several months, but resolved on their own.
This time, it didn't resolve and I've been sick for four years. All along I had some symptoms, but was basically healthy.
My most recent flare prior to this one was in 1991. I had my amalgams taken out and chelated. I also went on the anti-candida diet back then. Ever since then I've been very aware of detoxing and diet, so it wasn't necessary for me to prepare for the meds.
I think detoxing, diet, no sugar, no alcohol, no caffeine, plenty of rest, as much exercise as you can handle (even if it's a short walk, and sunshine are all as important as the abx.
Sparkle, you can get better. I've had this for a very long time and am responding surprisingly well to the medication.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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Beverly
Frequent Contributor (5K+ posts)
Member # 1271
posted
Hi Kayda and all,
No, I was not told anything like that, but at the time the doctor thought he was just treating me for a recent tick bite. I did not figure out until much later that I had been sick for a very long time.
Yes, it can get better sparkle, it has for me and I have been sick my whole life, so do not give up hope.
My 19-year-old daughter got a diagnosis of lyme (not positive for any co-infections as of now)about two weeks ago from Igenex, but the Dr. we are seeing has yet to start antibiotics. She is treating her with cat's claw (an herb), a strict diet of no sugar, dairy or wheat, and some other supplements. The doc says my daughter's stomach can't handle abx yet (she has had irritable bowel syndrome in the past, although I now wonder if it might have been lyme but I'm very unsettled with this reasoning. We know that abx will be difficult but it goes against my nature to take a wait and see attitude on this.
Posts: 8 | From New Jersey | Registered: May 2007
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lymednva
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Member # 9098
posted
I got the dx and script the same day. I wasn't new to my LLMD, just as a Lyme patient, and he was well aware of my clinical history.
I had great trust in him and we had been working as a team to fight what my body was going through for four years by then. He was newly LL at the time, but is a fast learner.
I've been ill over 40 years, in treatment for a little over 1.
-------------------- Lymednva Posts: 2407 | From over the river and through the woods | Registered: Apr 2006
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posted
Sounds like most of you got abx quickly after diagnosis. Seems like none, except DKT were told they had to wait for treatment to strengthen their body first.
Do some drs. try to get the immune system to do the job of antibiotics. I mean is that a protocol? My dr. has been trying to strengthen my immune system for almost 2 years since my diagnosis. No abx yet. I am CDC pos., very low CD-57 & SPECT scan shows Lyme, many symptoms of Lyme.
Kayda
[ 23. May 2007, 01:27 AM: Message edited by: Kayda ]
Posts: 582 | From midwest | Registered: Nov 2006
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sixgoofykids
Honored Contributor (10K+ posts)
Member # 11141
posted
Kayda, my LLMD has the opposite philosophy. He believes it's better to get the bacterial load lower, then build the immune system up to take care of the rest.
He has me on a lot of natural stuff to build the immune system at the same time I'm on the abx.
He says that if he could treat it naturally from the beginning, he would. He has an herbal protocol, but won't use it on me yet because my bacterial load is too high.
I think it's important to share the same philosophy with your LLMD. If you don't, it might be worth finding a new one. We have to have total trust in them and follow their protocol to a "T" to get better, so the trust factor is important.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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posted
I'm just starting this lyme journey, but yes, my doctor is trying to strengthen my body before treating the lyme.
I see him in about 5 weeks, so I'll know more then, but but for now he wants me on lots of supplements and herbs, getting as much rest as I can (which isn't easy with my insomnia) and eating very cleanly.
I have a bad antibiotic history and I think he is a bit concerned about that, and I also have other issues like mold toxicity and vitamin/mineral/element imbalances and possibly heavy metals exposure...he's trying to knock those back as much as possible first.
Posts: 83 | From us | Registered: Nov 2006
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CaliforniaLyme
Frequent Contributor (5K+ posts)
Member # 7136
posted
I was caught at about 2 months post-bite, treated for ONE month, then allowed to get very very very veryvery VERY sick before offered abx again by PCP- orals- first when sick Doxy was incredible- almost all gone in 30 days!!!! but just *almost*, had few symptoms left and then they got worse and worse, more syndromes appearing one after another, and then orals did NOTHING- needed 1 year orals, 9 months IV to do the trick after that- and still, alhtough 99.9% for 6+ years now, ahve to stay on amoxi or I lose ground quickly-
-------------------- There is no wealth but life. -John Ruskin
All truth goes through 3 stages: first it is ridiculed: then it is violently opposed: finally it is accepted as self evident. - Schopenhauer Posts: 5639 | From Aptos CA USA | Registered: Apr 2005
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randibear
Honored Contributor (10K+ posts)
Member # 11290
posted
got bit in jun 2005, got meds about two weeks later but it was only 2 weeks of doxy, gp wouldn't give anymore.
got to llym in decembe, started meds. been on them off and on since.
some improvement. it's just trashing my stomach and system tho.
i think i've had it much longer,maybe since early 1980's.
doctor said igenex said no to co-infections but i'm not so sure.
-------------------- do not look back when the only course is forward Posts: 12262 | From texas | Registered: Mar 2007
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Vermont_Lymie
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posted
Right away, the same day -- I was really sick and why wait?
Posts: 2557 | From home | Registered: Aug 2006
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