posted
Wondering if there's anyone out there who received initial abx at the time of infection, but who had a recurrence of mild to moderate symptoms, and who has had some success after they decided to pursue treatment.
I'm new here, and am on the fence debating if I want to head down this road again. I tried to pretend I was fine for a few months, but I'm not sure I can anymore.
I was infected in May of last year, got abx initially, but ever since have had to fight with doctors who point to my CDC-negative tests (positive C6 peptide and several WB bands - but somehow that doesn't count) and say I don't need further treatment, and I just need to wait out the inflammation. I can't afford a LLMD that lives anywhere near me.
Do I keep putting up with the constant ebb and flow of symptoms that range from mild to moderate pain, fatigue and mindfog, or do I start fighting with my doctor again for treatment? I can usually push through it and function with my symptoms, but I worry that they won't stay mild to moderate forever. I'm currently in a period of worsening symptoms and I'm worried. I'm also just tired of feeling like crap all the time. But I don't know if I can emotionally get my hopes up and ask for help and then be told to go away anymore. It's so disheartening and exhausting.
Thanks.
Posts: 63 | From Catskills, NY | Registered: Mar 2012
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posted
I was infected last May too. Just got put on treatment yesterday. I say try to find a good but affordable LLMD. And in the meantime I would push your doc for some type of treatment along with some supportive supplements.
Believe me...I know that cost can be an issue but the sooner you get proper treatment the better for your quality of life and not to mention the cost would probably less as well.
You deserve to feel good and healthy. No one should have to feel like "crap".
Good luck!
Posts: 98 | From Ontario | Registered: Feb 2012
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posted
Sounds like now is sick enough. I know where you are. Owing from. Especially if you don't look sick and don't have any joint pain etc. the neuro stuff is not going to go away on its own so keep looking for docs. Did you post here to find a llmd?
I have cycled through this for four years now. At least you know what it is. Focus your energy on finding a doc who believes in you. The cognitive stuff is just as debilitating as the physical. I am now not working because working with this little brain power will sacrifice my reputation and ruin my business.
Take care of yourself now please !
-------------------- Tick bite in 2006, bullseye rash, treated with 2 rounds of 2 weeks of doxy. (once in 2006, once in 2009) Dx with chronic Lyme May 2011. LLMD April 2012, Treating with omnicef/zith Lots of supplements! Posts: 640 | From Connecticut | Registered: Apr 2011
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'Kete-tracker
Frequent Contributor (1K+ posts)
Member # 17189
posted
They "point to [your] CDC negative tests??? That implies that if you're CDC-negative, YOU DON'T HAVE LYME! Whaa? I mean even the CDC says THAT's not the case. They just want to make "sure" the folks counted in the Lyme surveys have B.B.
ANY doc knows Lyme is a clinical diagnosis. And for a doc in New York (upstate NY, I grant you) to still say this in 2011 shows SERIOUS Lyme naivete!
Go find another doc who can treat you properly... via ILADS guidelines. 'Seeking a Doctor' on the homepage here is 1 step you could explore.
You should have been on a MINIMUM of 4 to 5 weeks of an antibiotic like "doxy" originally if you had the treatment within a few weeks of the bite. General rule of thumb is one Lyme "growth cycle" (28 days) BEYOND any Lyme rash OR symptoms.
posted
Thank you. I'm thinking that I need to address this too. Thank you for the encouragement, I guess that's what I needed.
Despite being someone who as always dealt with pain and discomfort with strength, sometimes I worry that I'm just being a crybaby and that I should be grateful I'm not in a wheelchair like some. It doesn't help when the doctors treat you like a hypochondriac.
I do have physical symptoms (fatigue, joint pain in knees, elbows, fingers and neck, also weakness in fingers and legs). But it's the neuro things that really upset me. I used to be extremely sharp and capable. Yesterday I put the coffee grounds in the water chute on the coffeemaker. I'm just so spacey. I sound like a simpleton speaking, I can't remember words, and spelling has become impossible. I was helping my son with his homework and couldn't figure out which letters came first to spell "strike".
There is a LLMD doctor in CT who doesn't charge the equivalent of my mortgage, he's a four-hour drive one way, but I'm starting to think it will be worth it. Only $300 for the first visit. I talked to an office yesterday that wanted $1,950! It makes me crazy when I feel like people are profiting so much from this, making it into a disease that only the wealthy can recover from.
Posts: 63 | From Catskills, NY | Registered: Mar 2012
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posted
I had 4 weeks of doxy, starting at about two weeks after infection. But symptoms came back with a vengeance 3 weeks later. So, I got another round of doxy, 3 weeks this time. That helped for about a month.
Seems like I got nearly enough, but not quite. I think that's why I have negative tests and mild to moderate symptoms.
Posts: 63 | From Catskills, NY | Registered: Mar 2012
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posted
Do not mess around with your lyme doc though. Make sure they are ILADS trained. There are plenty of lyme docs willing to treat that stink. And do it asap. A bad lyme dr. will cost thousands more down the road.
I got treated initially after bite with ABX for a month. Symptoms went away, then hit me hard 6 months later after it invaded my CNS. DO IT NOW.
**** what ANY doctor tells you, if you have + bands and symptoms you have some sort of infection,likely lyme and co's. Mainstream doctors are NOT on your side.
Please do it today, get put on the cancellation list.
[ 03-14-2012, 03:43 PM: Message edited by: Lymetoo ]
Posts: 109 | From PA | Registered: Feb 2012
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posted
'Kete-tracker: oh yes, my doctor's nurse said that to me just yesterday: "The bottom line is, ma'am, that you don't have Lyme."
And yes, this is an Infectious Disease Specialist in the Hudson Valley. Epicenter of Lyme.
I felt like slapping her across the face with the photo of my bullseye rash.
Posts: 63 | From Catskills, NY | Registered: Mar 2012
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'Kete-tracker
Frequent Contributor (1K+ posts)
Member # 17189
posted
She's probably say, "well, you DID have Lyme." "But we cured you."
BTW, what DID you get for initial abx treatment? What, How much & how long? I'm gonna take a wild guess here & say 100mg b.i.d. for just 2 weeks.
(100 mg twice a day for 4weeks *might* be enough for a short little Eskimo woman, but for Kareem Abdul Jabbar [large body surface area per body weight] ya'd need more like 300 mg. )
Posts: 1233 | From Dover, NH | Registered: Sep 2008
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'Kete-tracker
Frequent Contributor (1K+ posts)
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posted
O.K. I just saw that recent (11AM) post. 4 weeks is pretty good, but at the strength you took it, it may not have been enough. At lower levels, doxycycline is "bacteriostatic" rather than "bacteriocidal". In other words, it put the spirochetes in a neutral state, but didn't "lyse" 'em.
So you were given 3 more weeks as a follow-up, huh? What?... if 4 weeks doen't take care of a bacteria at a certain dosing level then 3 more weeks [of the same abx] *will*?? (What's the logic there?)
Oh, & remember, there *might* be a co-infection involved here that doesn't get touched by doxy... like bartonella or a micoplasma. Just FYI
Posts: 1233 | From Dover, NH | Registered: Sep 2008
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posted
They didn't do jack for me...six months of "treatment" with an infectious disease specialist, and all they gave me were tests.
I was first treated by my family doctor, 4 weeks of 200mg doxy, then waited two months, then 3 weeks more. I'm a fairly small person (5'4", 110 lbs) but it clearly wasn't enough. Symptoms never went away after 2nd round of abx.
Posts: 63 | From Catskills, NY | Registered: Mar 2012
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'Kete-tracker
Frequent Contributor (1K+ posts)
Member # 17189
posted
hey slow, ya know what I'D do?... go with a "high level amoxicillun" protocol, like Dr. L in CT preferred.
Don't bother w/ "doxy" again, esp. after 2 runs. Hit the 'ketes with a left hook. A wide-spectrum penicillun.
And add a li'l Diflucan for good measure. Maybe add Flagyl or Tindamax, too, to treat the cyst form.
I'm no doctor & you can't write prescriptions, so just *suggest* that 'amoxy' approach to your LLMD. Good luck!
Posts: 1233 | From Dover, NH | Registered: Sep 2008
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posted
Do not wait. It will only get worse and deeply ingrained.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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kidsgotlyme
Frequent Contributor (1K+ posts)
Member # 23691
posted
RUN...don't walk to the nearest doctor who believes you!! Seriously!
-------------------- symptoms since 1993 that I can remember. 9/2018 diagnosed with Borellia, Babesia Duncani, and Bartonella Hensalae thru DNA Connections. Posts: 1470 | From Tennessee | Registered: Dec 2009
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posted
How are you? I have been thinking about this question a lot over the past couple of days. On a relatively good day you always think that maybe it is going away and maybe it wasn't as bad as you thought. It always comes crashing back. I have shut down my business and come back 3 or 4 times in the past few years. The question helps me to know that it is not just me dealing with this. What have ou decided?
-------------------- Tick bite in 2006, bullseye rash, treated with 2 rounds of 2 weeks of doxy. (once in 2006, once in 2009) Dx with chronic Lyme May 2011. LLMD April 2012, Treating with omnicef/zith Lots of supplements! Posts: 640 | From Connecticut | Registered: Apr 2011
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posted
Slowli - you described nearly perfectly what I debated for a couple of years after being treated on and off with 4 weeks of doxy here, 3 weeks of amoxocillin there. Annoying, persistent symptoms that come and go, but don't incapacitate you. Joint aches, brain fog, tiredness. Then it flared up again on me last fall big time and I finally made the appointment with a llmd! Glad to be working on getting rid of it now, even though its a long road. If you can manage it, don't wait - it will get worse at some point...
-------------------- Wendy Posts: 253 | From Near Albany, NY | Registered: Jan 2009
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posted
I've decided to pursue treatment. I have the amazing support on this board to thank. I can't ignore how I've been feeling the past three weeks, the last three days have been particularly bad, it's exactly how I felt last summer before I thought I "got better." I can't spend the rest of my life on this loop. I have an appointment in May with a LLMD, so on a certain level it feels good to have chosen treatment. I'm going to give it everything I've got. We'll see.
Thanks to everyone for their concern, it honestly brings tears to my eyes...there are so few people who can understand the isolation, confusion and despair of having an illness that no one can see, that doctors ignore, and that threatens to never go away. Although I'm sorry that any of us are here, I'm so glad to have found this place. Really, thank you.
Posts: 63 | From Catskills, NY | Registered: Mar 2012
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