I have treated lyme and coinfections for a total of 14 months, and although I have seen improvements, I am not where I would like to be.
I have completed combination abx, including 8 months of IV rocephin + 3 months babs treatment + 3 mos bart treatment. I have taken cyst busters (plaq and tindamax for 2 months each) Unfortunately, the more drugs I take, the sicker I always feel and I struggled to complete almost 60 days on rocephin + biaxin + tindamax together.
I have now taken a step back, because I felt I really needed to see where my body is at without all the meds. LLMD agreed this was an OK idea. So I am currently only on Bactrim to help with seemingly remaining bart symptoms.
I am on nystatin and take Diflucan intermittently to control yeast.
Here is my issue: since stopping the large amount of antibiotics, I certainly had some ups and downs. I have been focusing on detox and spent 15 min in a sauna (major herx 3 days later), 15 min in a hottub at 104 (major herx 3 days later) and I started taking a GFSE/Art supplement to try to clean up anything else- and this also made me herx (currently ongoing) and has given me extreme ear pain and an increase in my ear ringing. My tremors that were almost gone have also returned with a vengeance.
So I am discouraged. I still have the following symptoms: burning head pain, tremors, ear pain and ringing, transient joint/muscle pain, restless sleep.
Is it possible I am still killing bugs off and herxing? Or am I relapsing? Should I go back on more abx? I have the Byron White Herbs- I could try those?
I will call my LLMD and get input, I have an appt in early Feb, but interested to hear your thoughts.
Thanks MB
Posts: 233 | From Hudson Valley | Registered: Jun 2010
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mojo
Frequent Contributor (1K+ posts)
Member # 9309
posted
I'm still herxing with my rife and I've been treating for five (5!) years. My problems are that 1. I've had Lyme for probably 35+ years 2. Undiagnosed co-infections that I'm just now treating.
This is a tough disease to puzzle out - we are peeling away layers of issues that are just plain difficult to figure out.
The GSE is probably hitting something hard, I'm guessing.....
Have you treated Babesia? I'm starting to think we all have all of the co-infections. I herx hard from Babs treatments and don't have a single "classic" symptom. No sweats, fever, air hunger - only symptoms that are the same as other bugs.
Posts: 1761 | From USA | Registered: May 2006
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I treated babs with 2 months mepron/zith, then 1 month malarone.
I also did 3 day CoArtem/Daraprim.
I herxed on all, but never got to the point where I was seeing a lot of improvement.
I am the same as you with symptoms- no real clear babs (compared to bart and lyme) symptoms but herx on babs meds.
Posts: 233 | From Hudson Valley | Registered: Jun 2010
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BoxerMom
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Member # 25251
posted
Continue treating. Resume Babesia treatment. 3 months is not enough.
I have been in treatment for 2 years and 9 months and I am still herxing. I just did a med change and had a HUGE herx on Saturday.
I think a short break is fine, especially if you focus on detoxing. But plan to resume antibiotics and keep going until you are well. 3-4 years of treatment is pretty normal.
At 14 months, I was still herxing daily. I was still very sick, though not disabled.
I feel like a different person now. Sleep is normal. Don't need antidepressants. Energy is normal (unless herxing). I am around 90% most days. But I will continue to treat until I am completely symptom-free.
ILADS recommends staying on abx for 3 months past resolution of all symptoms.
posted
I still herx after 7 years. I was diagnosed very early and received treatment 6 weeks after the bite. Remember to be very careful with detox. It can cause an intensification of symptoms which feel like a herx.
Posts: 366 | From Louisville KY. | Registered: Nov 2003
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mojo
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posted
I'm thinking the Babs needs more treatment, too.
And I second the detox thing. It's so important for healing and also for feeling well.
Posts: 1761 | From USA | Registered: May 2006
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Your suggestion makes sense to treat babs more, especially since I did not do the meds for that long and I did flare on them.
I appreciate your kind words and support. I will keep going.
MB
Posts: 233 | From Hudson Valley | Registered: Jun 2010
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lymeinhell
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posted
Further Babs treatment might be necessary, but have you given the idea that your remaining symptoms might not be Lyme & co?
Your list of remaining symptoms reads like a list of symtpoms for magnesium deficiency. (burning head pain, tremors, ear pain and ringing, transient joint/muscle pain, restless sleep.)
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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You are right on with the symptoms matching Mg deficiency. I take 400mg/day, and I have had periods of time taking more, but then tend to have bowel issues with it.
I also had an IV Mg injection to try to help with my headaches, but no help.
Its all so confusing. I hate not knowing the answers!!
Posts: 233 | From Hudson Valley | Registered: Jun 2010
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lymeinhell
Frequent Contributor (1K+ posts)
Member # 4622
posted
It took my LLMD a year to convince me to try an IV. And it took what I thought was a crisis to get her to convince me. I literally watched myself transformed in about 20 minutes.
I had those horrible muscle knots on my skull, making me feel like my brain was swollen, a pulse of 124 right out of bed, and horrible anxiety. My BP was 150/90 (and I'm on a beta blocker). Within 20 minutes, I was COMPLETELY NORMAL. I don't know why I didn't do it sooner. So I went every 2 weeks for 3 more IV's, supplemented by weekly IM shots. No more symptoms.
Note: we did have to use trigger point injections of lidocaine to bust up the muscle spazms (since they do not go away on their own). But after that, they did not return, unless I go too long without an IM shot. And then if I skipped more than 2 1/2 wks, I might get one start to crop up.
Are your headaches headaches, or are they head pain? There's a big difference.
-------------------- 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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