posted
Anyone ever get a clinical Lyme diagnosis, and have no improvement with treatment, only to realize later the LLMD was mistaken?
I have been diagnosed, but am in a bit of denial, and hesitant to start abx... I have a child with Lyme/Babesia so I know what treatment looks like, and how long it may take, and it's a lot to swallow.
Thank you all for any input.
-------------------- Mom of Five - two had lyme and coinfections - one had RMSF - Still hoping for broader awareness of tick junk in general medical practitioners. Posts: 79 | From Virginia | Registered: Jun 2008
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posted
I agree. I downhill spiraled after i ignored symptoms and accepted alternative diagnosis. I actually saw a great therapist over 2 years of hell that i thought i was hypo-chon and just plain crazy.
If you dont think it's lyme, then what else have you been told? And more importantly, with a positive lyme test (which many cannot get but still are undergoing treatment) why are you wavering???
It's a hard knock life for us...(good song from the movie "Annie") and you know, things will improve with treatment, but w/o it, your body and your brain will lose functioning. Don't wait.
quote:Originally posted by urpaige: Anyone ever get a clinical Lyme diagnosis, and have no improvement with treatment, only to realize later the LLMD was mistaken?
I have been diagnosed, but am in a bit of denial, and hesitant to start abx... I have a child with Lyme/Babesia so I know what treatment looks like, and how long it may take, and it's a lot to swallow.
Thank you all for any input.
Thats is a hard decision to make . I know that if I didnt reasonably positive WB and several other in line with TBD I would be very hesitant go abx route as well
What test did you do? Were your igenex WB completely blank? Do you have any other TBD symptoms (for me its bart with feet pain and various skin issues it causes)
I think its possible that lyme+ con infections could suppress immune system so much that you wont see anything , so abx challenge seems like reasonable option (and it seems like you should also include bart treatment in it -since it is powerful suppressor )
1-2 months abx seems like a relatively safe option ( unless you are allergic to everything)
Posts: 856 | From MA | Registered: Jul 2009
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Lymetoo, I've had many at least five tick bites a year for the past seven years. My son got confirmed lyme, with the EM rash, babesia + from Igenex, and two positive lyme tests through Quest even. So I know it's here at our home...
coltman, I have one test pending, and Igenex is scheduled for next week. I do have sore feet, especially in the morning, but no skin issues. There is ringing in my ears. My neck hurts all of the time but I was in a bad auto accident 20 years ago, so I wonder if that plays a part. Knees hurt sometimes, ankles, fingers, elbows sometimes too. Occasional dry cough.
I've been dx with fibro, about four years ago, but the only real symptom of that is pain, both muscle and joints. My hands and arms regularly go to sleep and tingle in the night time, especially if I bend them. What do you mean that bart is a powerful suppressor?
Liza, I'm hesitant because I've already spent almost two years taking care of my son with babs and ld, so I know how time consuming it is with the labs, supplements, refills...as well caring as my other four children. Adding in lyme treatment for me, will be another big thing.
I'm just asking all the questions I can and trying to gather all the info I possilbe before taking a whole bunch of meds, and adding another big and likely more tiring (at least in the short term) task to my already full schedule:)
-------------------- Mom of Five - two had lyme and coinfections - one had RMSF - Still hoping for broader awareness of tick junk in general medical practitioners. Posts: 79 | From Virginia | Registered: Jun 2008
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posted
Coltman meant that Bart is a powerful immune suppressor -- could cause Lyme tests to be false negative.
In your situation without glaringly obvious symptoms I would first check into nutritional things.
For example -- ringing in the ears could be from a magnesium deficiency. Try several epsom salts bath soaks to see if that helps.
The sore feet in the morning could also be caused by high blood pressure -- I had that and I do not have Lyme disease.
Hands and arms going to sleep probably is a B vitamin deficiency but also could be nerve damage. I would try a B complex at least 100 mg and extra B6 or p5p (activated B6). Also could try a chiropractor as it could be coming from the spinal column. Also have your B12 levels checked by bloodtest.
With your history of tick bites obviously Lyme needs to be ruled out. Hubby never even knew he had a tickbite -- we live in the city and he doesn't do any outdoor things except he used to be a jogger. Yet he has Lyme, babesia, bartonella, mycoplasma and probably had ehrlichia as well. So the odds are stacked against you with your history.
Take care. You sound like you have your hands full with your family.
Bea Seibert
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
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posted
Thanks Bea. I actually have low blood pressure, and take an organic supplement that does contains 100% off each of the B's, so I guess the test will tell next week. The LLMD did say there were nerve issues during the exam of my fingers, and felt confident enough to want me to start the meds before the tests were all back. I'm just not quite convinced yet, although I know the test may not help confirm the dx.
Is the Bart treatment like Babesia in that it would ideally be done before the Lyme or do they normally treat together?
My hands are rather full, but they are full of blessings, so I can't complain:)
-------------------- Mom of Five - two had lyme and coinfections - one had RMSF - Still hoping for broader awareness of tick junk in general medical practitioners. Posts: 79 | From Virginia | Registered: Jun 2008
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posted
Just adding that after reading about the many many people here that have been on abx for years and years, it is tough to weigh how much of that it would take and how much better I could/would feel.
My son got a GI bacterial infection so of course I wonder if he hadn't had the abx treatment that he absolutely needed (he was very sick) would the GI infection developed. The good probiotics get expensive so before starting myself, I'm just trying to be as sure as possible.
Still haven't started but the meds are at the pharmacy waiting... I'd appreciate any of your thoughts.
-------------------- Mom of Five - two had lyme and coinfections - one had RMSF - Still hoping for broader awareness of tick junk in general medical practitioners. Posts: 79 | From Virginia | Registered: Jun 2008
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Shosty
Unregistered
posted
I also have meds waiting, on my shelf here, and understand your question. I did take antibiotics for some years though, and two of my kids have been treated for Lyme.
I don't think it is necessarily true that not treating is worse than treating. Not always.
I personally did not have that much improvement on antibiotics. They wrecked my gut, and I now have a lot of food allergies. I did have very positive Western Blots. I would say I had some improvement early on w/my paresthesias.
One of my kids had a really hard time on the meds. Her gut was also wrecked, she had yeast all through her GI system, diahhrea etc., and tetracycline made her psychotic! I went to the MD's and begged to take her off. The LLMD kept saying it was a "herx," but I think it was an autoimmune reaction or allergy. We did get her off, actually, and some of the symptoms improved off the meds! She did not have fully positive Western Blots (like you), which made the whole thing worse.
My other daughter had very positive Western Blots, and was literally cured by 3 months of antibiotics.THank heavens she went on meds!
I know I am still suffering from Lyme, but I cannot bring myself to take the antibiotics again, and may not even be able to.
I can totally relate to your indecision. The point I guess I am trying to make- at some length, sorry- is that it depends on the individual.
If I were you, I would give it a try for 3 months, and promise myself to reevaluate then. I would stop or slow down for any severe reactions too. Ramp up slowly and carefully. Take probiotics and watch for yeast. All of which of course you know.
I do not think that years of antibiotics really help, and as you well know, many of us have turned to alternatives for our symptoms.
Now, what should I do about those meds on my shelf?!
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