Having treated lyme and bart for nine months after positive igm for lyme and positive melissa test for bart I need some advice.
My llmd took me off treatment after a very good cd57 result of 180. That was 6 weeks ago. I decided to use this time off meds to do a humaworm parasite cleanse. Two weeks into this I am starting to feel rough again.Not sure if this is a herx reaction or a relapse in symptoms.
I tested, but was negative for babesia but I have always thought my symptoms point in this direction. Could someone tell me if its likely that I could have babesia with such a good cd57. From what i have read the cd57 is more lyme specific than it is for co infections.
Also with babesia being a more parisitic infection could the humaworm cause my babesia (if i have it) to worsen?
any thoughts please??
Posts: 65 | From Sussex UK | Registered: Apr 2010
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posted
air hunger, jumpy vision. feel like im flying off to the right when i shut my eyes, hangover feeling, ringing ears, crunching knees walking up stairs. One pupil larger than the other,Internal vibration feeling. Hard to explain but like im fizzing inside. mainly upper body and hands.
Never thought I suffer from night sweats until I saw the state of our mattress the other day, Its only eighteen months old and my side is rotten lol
Posts: 65 | From Sussex UK | Registered: Apr 2010
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lymewreck36
Frequent Contributor (1K+ posts)
Member # 4395
posted
Sounds like you are still infected. You definitely CAN have negative tests and still be infected. I'm curious, where you symptom free when the doc took you off, or did you just have a good CD57.
Bottom line, you have symptoms......you should continue your meds.
Mary
Posts: 1032 | From North Carolina | Registered: Aug 2003
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posted
Still had symptoms I have listed above but not as bad as now,Took me off meds because of a good CD57 which I wasnt too happy with at the time.
Posts: 65 | From Sussex UK | Registered: Apr 2010
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BoxerMom
Frequent Contributor (1K+ posts)
Member # 25251
posted
Exact same thing happened to me. I had great herxing on the first 2 weeks of Humaworm, with obvious improvement, then steadily declined. I thought I'd liberated too many other pathogens from my parasites, and my body was struggling to clean them up.
In hindsight, I had been relapsing for Babesia for months. I have the air hunger, night sweats, crunchy knees (I have always called it that. This is the first time I've heard it from someone else!), feeling off balance.
I'm now back on Babs meds and feeling much better.
Please go back on abx. Your symptoms are from Lyme and co, not parasite herxing. You need further treatment.
The CD57 is not a good marker for stopping abx. The goal with treatment is symptom resolution. ILADS recommends abx for 2-3 months beyond resolution of all symptoms.
Doctors LOVE tests. This can be unfortunate for us.
posted
I don't mean to derail your topic, and I'm glad BoxerMom joined to give you some good world experience.
You both mentioned "crunchy knees." This made me think about how I can pop my knees. My knees feel stiff, so I kind of use my hip to push my knee to the side, and it pops. Is this similar to what you called crunchy knees? If not, could you describe what that is to you?
Posts: 829 | From MD | Registered: Dec 2009
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BoxerMom
Frequent Contributor (1K+ posts)
Member # 25251
posted
The medical term for what I have is crepitus.
posted
mine the same, they crunch creak and click with every step up the stairs.They feel bit like a creaky door. I get mine swell up every now and again making it hard to walk.
Posts: 65 | From Sussex UK | Registered: Apr 2010
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posted
What makes you guys think that crunching knees (I've got em, too!) are from babesia?
I've treated babesia for a while and have no symptoms that I associate with it, and yet I have crunching knees. Not sure what I have left - I'm at 95% while on antibiotics. I thought that Lyme would be the cause of such degradation of the joint tissue...
-------------------- Increasingly ill over past 10 yrs; treating since October '08. Posts: 180 | From Philadelphia, PA | Registered: Oct 2008
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BoxerMom
Frequent Contributor (1K+ posts)
Member # 25251
posted
My crunchiness flares with my Babesia, as does my hip pain. I understand this is counterintuitive, as Borrelia and Bartonella are known to cause joint pain.
But so it Babs. For me, it is always Babs.
For others, it could be another pathogen. No question. Or injury. Or local inflammation.
Fish oil, hyaluronic acid, vitamin C and glucosamine are all good for joints.
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