posted
I am trying to figure out if my generally declining health over time may be lyme related. Appreciate any ideas, as I have not researched any of this stuff since like 2001 or so (until very recently). I am seeing a lot of talk about baboresis (Spelling?) and HCP (or HCsomething) as coinfections. I am not even sure what these are, can someone linkinate me to a quick overview?
History: 1998 infected in southeast PA, lucky had the rash and very sick - obvious cause, treated doxy oral 30 days, cleared up. Had arthritic problems involving ankles for no specific reasons, and developed chronic cluster headaches shortly thereafter. Some general malaise and feeling stupid (can't find words, remember names, increasingly disorganized) over the next year. I got retested ELISA and still was showing positive, doc put me on a 6 week doxy oral. Cleared up except for headaches. Ongoing small complaints from then until the last couple years. Several bouts of hip and ankle pain with no apparent cause. Have had consistent white cell elevation in blood tests from time of infection until present.
Recent doc workup (moved to california, new doc)- indicates enlarged ventricle, numerous blood numbers beyond limits, high whites as usual. She sends me to a blood specialist (read - cancer specialist) for a battery of tests looking for leukemia, arthritic myalgia (or something like that), lupus, etc. Any way, his more detailed tests show all kinds of stuff out of whack, but nothing indicating cancer or other identifiable problems.
Over last year or so getting neuro symptoms in left arm/hand - tingling/numbness, pain in shoulder/neck and numbness right thigh. More tests more BS. I have apparently a couple of bad cervical discs and pinching a nerve. I am no longer sure if I buy this.
Prior to my bite in 98 I was strong, healthy and happy. Now I am 35 and falling apart, literally. The downward spiral began then, which has brought me to question again whether lyme is involved, particularly given the constant white count indicating a fighting off of something.
Having lurked here some and read some newer stuff I am probably going to mention this and make sure they understand my full background, however I am not sure how to do this without getting labeled a whacko.
Anyway, I wasn't sure where to post this as it really doesn't contain any relevant medical question. I appreciate all the info here, please let me know what your experiences have been if you have had more than one treatment doxy and still have unexplained disease.
Thanks! Drew
-------------------- sooo, what seems to be the problem? Posts: 5 | From Torrance, CA | Registered: May 2006
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lymie tony z
Frequent Contributor (1K+ posts)
Member # 5130
posted
Hi Drew,
Unfortunately your story is an all too familiar scenario with lyme patients.
You have never been given a strong enough/long enough dose of antibiotics. This is why you still have high white blood counts...you're infection was not eradicated.
Furthermore you probably have neuroboreliosis now and it will take longer for you to rid yourself...if possible...now that the bug has disceminated.
Get with a LLMD as fast as you can and get on some good treatments... Look up Dr. B's guidelines on the newbie lists here for more info...and good luck........zman
-------------------- I am not a doctor...opinions expressed are from personal experiences only and should never be viewed as coming from a healthcare provider. zman Posts: 2527 | From safety harbor florida(origin Cleve., Ohio | Registered: Jan 2004
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Michelle M
Frequent Contributor (1K+ posts)
Member # 7200
posted
Hi Drew.
Lymie Tony has it right.
Get thee to an LLMD.
Your problems likely all stem from not being treated long enough or strong enough to begin with.
You need an LLMD because any other kind of doctor is going to be just puzzled and be looking at how to figger out all the stuff the lyme has CAUSED, rather than the cause itself. Like, DUH on them.
Post in "seeking a doctor" and put your city. Someone will fix you right up. Otherwise, you'll continue in the endless circle of tests, more tests, and more and more doctors till you drive yourself nuts and/or give up.
Don't do that!
Good luck!
Michelle
Posts: 3193 | From Northern California | Registered: Apr 2005
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posted
Thanks for the advice, I guess I need to seek out an llmd. I am guessing due to the problems these guys are having that I will need an anonymous referal? what a crazy deal.
Thanks again.
-------------------- sooo, what seems to be the problem? Posts: 5 | From Torrance, CA | Registered: May 2006
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Aniek
Frequent Contributor (1K+ posts)
Member # 5374
posted
Drew,
Welcome.
Reading everything on this board and experiencing what you are experiencing is terrifying. But you seem to be taking the steps necessary to take control of your health, get a diagnosis and get treatment. So pat yourself on the back for that...or just on the cheek if you can't reach your back
Your story sounds familiar. In an odd way, I'd say you are kind of lucky. Because you've had the positive Lyme tests and the rash. So you know for sure you were infected.
When you get a recommendation for an LLMD, I suggest writing out your entire medical history chronologically. Note each symptom since the bite and when it came on.
Think through everything, even if you think it is unrelated. If there were times you thought you had a stomach virus. If you have allergies and when they came on and what aggravates them. If you had a change in eyesight. A change in sleeping habits. This will all help a doctor diagnosis any coinfections.
To answer one of your questions, Borreliosis is the name of the bacteria that causes Lyme. Babesia is a parasite that is carried by ticks. Many people infected with Lyme also became infected with Babesia at the same time.
Good luck getting on track with treatment. The smartest thing I ever did was contact my local Lyme support group and get a referral. It changed my life.
-------------------- "When there is pain, there are no words." - Toni Morrison Posts: 4711 | From Washington, DC | Registered: Mar 2004
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