I'm newly diagnosed, and pretty sure that I can trace my symptoms back for more than 10 years.
I began my treatment over the summer with cat's claw and all the standard protocol supplements because my doc felt that my immune system was too shot to handle antibiotics yet, and wanted to build it up. Well I never experienced any herxing from that, which of course made me wonder if I may have been mis-diagnosed. (She also put me on Zrii juice, which she raves about, but I haven't noticed any improvements from it.)
Then began the antibiotics - azithromycin and amantadine. I'm on my third month. This past month I have been instructed to double the dosage, and have been having a hard time:
1. Intestinal issues - I get the runs WAY more than normal, (even though a doc in the past said I had IBS). Plus strange gurgling noises and general discomfort.
2. Extreme exhaustion - I feel like I could sleep 24x7. (But yet I never sleep well due to hip pain, profuse sweating, worrying and sometimes the runs at 3am.)
3. This one really scares me...my arms feel so weak. At first it seemed to be my wrist/forearm so I thought it might be carpal tunnel. But now it is both arms. They almost feel like the circulation might be off...not asleep but not right and really weak.
4. ITCHING more than ever - especially after I shower...What could that be?
5. I feel depressed and defeated, like I'll never get through this. Even though my Frye and Igenex lab tests were positive for lyme and 3 coinfections, I still wonder if it's really something else, like MS or ALS that will only get worse if I'm not diagnosed?
6. Hip pain - occasional stabbing pains where my right leg and hip meet.
Could these all be herxes or side affects of the medicines?
Thanks for any feedback!!!!
Posts: 22 | From Philadelphia, PA | Registered: May 2006
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gemofnj
Frequent Contributor (1K+ posts)
Member # 15551
posted
welcom em!!
Here are a few links on lyme, if you havent gotten them already. Please print and save for future re-reading. Very interesting and informative.
Anything that is upsetting should be reported to your doctor.
Gastro can be due to not taking enough probiotics or YEAST.
Or you need to make sure you are taking your abx with food and not on an empty stomach.
Exhaustion: Normal after you start abx & can be debilitating. Try to rest when you can.
Weakness: Also very common in lyme symptoms.
Itching: Could be a reaction to an abx you are taking. I would check with the doctor
Dont be depressed. You are getting treated by an LLMD!! That is a great step towards recovery.
The longer you have had lyme, the longer it takes to go into remission and it is harder to treat.
Thank goodness you have positive test results. You are one of the lucky ones!!
PS I sent you a Private message
Posts: 1127 | From atlantic city, nj | Registered: May 2008
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sutherngrl
Frequent Contributor (1K+ posts)
Member # 16270
posted
We all feel exactly the same way. I have been in treatment 6 months. Still sometimes wonder if I have MS or something worse like ALS. This is the nature of LD.
Posts: 4035 | From Mississippi | Registered: Jul 2008
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posted
Welcome, always happy (and sad) to meet another member of the decade club. Your list is similar to mine, sounds like a fairly standard herx. Itching is a big herx symptom for me.
I'm a fan of pulsed, low-dose abx. I'll get digestive symptoms like yours if my abx dose is too high. I herx plenty on what equates to 6 mg (yes, six) of zith daily. Be sure you are taking a pro-biotic supplement to help restore the good gut bacteria.
Hip pain has been severe for me, particularly at night. It took many months of effort to get it tolerable. I found small doses of turmeric helpful, 100 mg or so, you'll probably need to open the capsule (available OTC). Stretching (yoga or similar) has helped, and also walking short distances, a few hundred feet was all I could handle at first. Best wishes as you start a long journey.
Posts: 727 | From USA | Registered: Mar 2006
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bettyg
Unregistered
posted
have hip xrays taken! mine showed BONE ON BONE!
1.5 years ago i had my left hip replaced; NO PAIN anymore and i can bend over to make beds/change sheets! i had rough times including a blood clot after surgery; BUT I SURVIVED!
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It's always encouraging to hear that I'm not alone and my symptoms aren't incredibly unusual.
My primary care doctor performed an x-ray on my hip and said there's very little arthritis, and that I just need to go to a chiro and have him stretch me out. That didn't work. It hurts so bad that it's nearly impossible for me to sit on the floor Indian style to do yoga.
One of the hardest things about this whole disease is that nobody seems to see me as being ill, even though I am. It was worse before the diagnosis because all the doctors told me I was fine, so I just appeared to be a neurotic sort of hypochondriac. But even now, as long as I'm getting out of bed each morning, it's just expected that I can perform all my duties. I have 4 children and a full time job...Unfortunately, there's no slack to be found. So I just pray that on my bad days, my boss won't notice that I'm accomplishing nothing at work and decide to write me up (or worse). It probably sounds horrible but in some ways I actually envy people who have diseases that are "recognized" because they get the slack and treatment that they need, whether it's disability benefits, medication, or just understanding and extra help from friends and family. It seems like Lyme sufferers have to justify their every need and disability. I went 20 rounds with Aetna yesterday just trying to refill my prescription. And constantly missing work due to exhaustion, illness or Doctor appts just puts my job in jeapardy. I can barely afford my current treatment WITH my full time job.
Sorry to vent, but I'm guessing that you guys in this forum can relate.
Posts: 22 | From Philadelphia, PA | Registered: May 2006
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