My husband (who has been by my side and God bless him keeps me going) and I are a bit at odds over my current treatment.
My major problem (as it has been for going on three years) is burning neuropathy. Even my Lyme doc. (one of the top 10) is "frusterated" with my lack of improvement- or shall I say no improvement in burning pain and loss of sensation in certain areas. For the time I am basically disabled due to pain.
Anyway, four months ago I began Ketek along with Flagyl (pulsing the Flagyl) and Mino. I have been on Mino for over a year. I hadn't taken Flagyl for many months and I had never taken Ketek.
For four months I have felt like I am herxing. Literally. Everyday my burning pain is just as bad as pervious to the Flagyl/Ketek. In addition now the bottom of my feet feel like I have been standing on gravel barefoot for hours. The inside of my palms are very tender. My entire body feels like someone beat me up.
I know that sounds cliche, but it is the truth. This has been going on for four straight months.
I do take 'breaks' as mandated by my doc. (take about 10 days off a month with no meds.)- but during that time I get no better.
My husband absolutly maintains that it is a herx.
I just got a brain MRI- it was normal- what do you all make of that? All my recent blood work was basically normal, except positive for candita & borderline Herpes & some food allergies. Actually my B12 levels WERE TO HIGH. Is that wierd? I sometimes take a multi-B vitamin, but maybe like 4 day out of the week.
I am going to try to make the iv leap if my doctor will let me. After almost three years of orals & no improvement (plenty of herxing, but no improvment)- am I just crazy?
Forgot to mention I did receive a positive Elisa & Western Blot way back when (2002 I think)- but can never get any positives on co-infections.
Is this current pain really a herx, or are things just getting worse? Is it odd I have a normal MRI (it was done with contrast).
HELP.
the ex-fiddler
Posts: 58 | From Leonardtown, Md, usa | Registered: May 2003
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posted
I've had LOTs of trouble with Minocycline and Ketek.
My new llmd believes the burning feet problem, in my case, is from an untreated Bartonella infection.
Good luck
Laura
Posts: 132 | From Kentucky | Registered: Dec 2004
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lymeHerx001
Frequent Contributor (1K+ posts)
Member # 6215
posted
Yes I have had BURNING NEUROPATHY for months at a time..
Horrible horrible pain.
It feels like someone has dipped my feet in hot acid.
Just do a search with my name and neuropathy.
After 2 years of treatment that symptom is letting up and I have less neuropathy form sugar.
Going off my antibiotics brings back a return of symptoms.
Posts: 2905 | From New England | Registered: Sep 2004
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lymeinhell
Frequent Contributor (1K+ posts)
Member # 4622
posted
I'm no doctor, but chronic.. And it seems to me you bypassed positive for Candida. Could it be the Flagyl is killing off tons of yeast after all this abx treatment?
I know quite a few people who have reacted negatively to Ketex. Perhaps a switch??? Does your doctor use reflexology to see if it's ok for you to take?
What about detoxing? Done any?
-------------------- Julie _ _ ___ _ _ lymeinhell
Blessed are those who expect nothing, for they shall not be disappointed. Posts: 2258 | From a better place than I was 11 yrs ago | Registered: Sep 2003
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5dana8
Frequent Contributor (1K+ posts)
Member # 7935
posted
Detoxing has helped alot to rebound on the weeks I am not on abx.
Do a search under "detox"
This is where I found most of the information and suppluments I am now on and doing.IE..Podi patches,cholorella,detox teas,hot baths,drinking lemon water ect...
-------------------- 5dana8 Posts: 4432 | From some where over the rainbow | Registered: Sep 2005
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Why don't you ask your dr to TREAT you for bartonella and babesia, just in case. Maybe you have it but the tests are coming out negative. Happens all the time for babesia.
Wish I could help more. Check out the links and explore all possibilities.
That said, I herxed for an entire year and felt like death warmed over for another year.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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char
Frequent Contributor (1K+ posts)
Member # 8315
posted
Hi,
Just wanted to say that I am sorry to hear that you have been in such pain for so long.
I have have painful soles of feet just recently since I switched to Septra, so we think it is a bart herx.
IV has helped my daughter and I think it is something to consider. Our dr. is rotating abx every month with her and the idea is to hit the lyme and co-infections from all sides.
posted
i am sorry to hear you are going through such a hard time. I too have been herxing now for a month. I have been off the meds but I have continued to herx and I am suposed to go back on flagyl on friday. I am very nervous because I am still so sick. I am confused about this whole herx thing. My doc is one of the top LLMD's in the country too and said that I should be able to function normally on these meds and if i can't then i should stop the meds immediately. Who is ur doc and where r u from?
I am from northern california and my doc is christine greene.
Lindsay
Posts: 484 | From Burlingame, Ca | Registered: Sep 2005
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treepatrol
Honored Contributor (10K+ posts)
Member # 4117
posted
Yes if your like me I had a couple of different strains and they were cycling at different times also had coinfection.
-------------------- Do unto others as you would have them do unto you. Remember Iam not a Doctor Just someone struggling like you with Tick Borne Diseases.
map1131
Frequent Contributor (5K+ posts)
Member # 2022
posted
Fiddler, yes your body can stay in a constant state of herxing while on abx. Mine did.
What I learned about me, is that the toxins from the abx was making my illness worse. Abx became poison to my body.
So in May of 2003 I started thinking outside the box (or vial of pills). That's when I started rife treatments. That wasn't a party either.
It took 6 months before I could say I had a GOOD day. Before I never knew what my LLMD was talking about when he said "until you feel better". I wasn't one of those people that was going to feel better taking more abx after over 3+ yrs.
It took more than a rife machine to help detox me. I did many alternative things, but with each thing I did to detox my body, I would see more and more light at the end of the tunnel.
So in 2 yrs and 8 months of alternative treatment, I know I'm winning the war. Thanks be to God.
Take care, Pam
PS. I was treated with abx within 10 days of onset of flu-like symptoms & horrible pain attacking every part of my body. I had a lyme literate GP.
-------------------- "Never, never, never, never, never give up" Winston Churchill Posts: 6495 | From Louisville, Ky | Registered: Jan 2002
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