Antibiotics not working?

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davidgraham5
Regular Member


Date Joined Jul 2016
Total Posts : 140
   Posted 7/17/2017 12:51 AM (GMT -7)   
What are the options if antibiotics not working? I started on azitromycin and minocycline for 8 weeks and felt great. They added in malerone and the herx was crazy so I stopped so they changed to azitromycin doxycycline and rifampicin. I got progressively worse and worse. 8 weeks on it still worse. In a great deal of pain. Took two weeks break and started again and in even more pain.

600mg azitromycin 200 doxy and 300 rifampicin.

Do you think 200doxy is causing relapse as it's not enough?

yancync
Regular Member


Date Joined Nov 2015
Total Posts : 449
   Posted 7/17/2017 5:36 AM (GMT -7)   
I can't really answer your questions but I can say that DS was incredibly ill the first 6 months as he did a similar regimen - he was pulsing. He also was taken off doxy because it was too harsh for him and switched to minocycline and did better. Hard to say but maybe the doxy is working better than the mino?

I feel from reading here and talking to others IRL, that many have terrible herxing when starting treatment because the die-off is so huge. It takes awhile for that to go away. We tried lots of detoxing but frankly he just ended up in bed a lot of the time the first 6 months. Vitamin supplements and detox can help though.

It is so frustrating. Have you talked to your LLMD? Maybe they could try a doxy substitute?
Parent of teen DS w/ CDC+ Lyme test Nov 2015, late stage Lyme + mycoplasma, bartonella, babesia. Currently treating with antibiotics/anti-malerials, multivitamin, magnesium, CBD oil.

Website I started: ParentsofLymeKids.com aka Lyme Disease 101 for Parents

ChickNorris
Veteran Member


Date Joined Jan 2012
Total Posts : 620
   Posted 7/17/2017 7:40 AM (GMT -7)   
What are you doing to detox? When I started treatment I thought the antibiotics weren't working because I too got worse. But it was herxing and I didn't really know it. My first Lyme dr didn't explain it to me. And I wasn't doing enough to detox.
Igenex 9/2016 31-I, 39-I, 41-++, 58-+ Igenex 2/2017 31-I, 41-++, 58-+, 66-+
CD57: 28
EBV, CMV, HHV-6, Mycoplasma Pneumoniae, Bartonella, Babesia
Hashimoto's, endometriosis, alopecia areata, migraines


Previous meds: samento, banderol, doxy, rifampin, alinia, blue sage, silphitrin, BLt, crypto-plus, A-EB/H6, A-CMV
Current meds: azithromycin, plaquenil, mepron, septra, IM rocephin, IV glutathione

davidgraham5
Regular Member


Date Joined Jul 2016
Total Posts : 140
   Posted 7/17/2017 8:32 AM (GMT -7)   
I'm on alpha lipoic acid, omega 3, nac, Multivitamin and mineral, sauna twice week, vit b Complex, mushroom extract, ginseng, water and lemon, curcumin and sometimes Epson salts

When I had doxy way back at the start I herx. On the start if this protocol the herx was mild until babesia malerone herx. Not recovered since

ChickNorris
Veteran Member


Date Joined Jan 2012
Total Posts : 620
   Posted 7/17/2017 8:52 AM (GMT -7)   
I have found adding a binder has made a huge difference in how I feel. I take activated charcoal. Charcoal and sauna are the two things that have helped me the most. And I do glutathione infusions once a week too which I also think have helped. The first few months of treatment were the worst. It's only been really recently (like the past 2 weeks) that I can feel myself starting to improve. It's a long, slow process but you will see progress eventually! I promise!
Igenex 9/2016 31-I, 39-I, 41-++, 58-+ Igenex 2/2017 31-I, 41-++, 58-+, 66-+
CD57: 28
EBV, CMV, HHV-6, Mycoplasma Pneumoniae, Bartonella, Babesia
Hashimoto's, endometriosis, alopecia areata, migraines


Previous meds: samento, banderol, doxy, rifampin, alinia, blue sage, silphitrin, BLt, crypto-plus, A-EB/H6, A-CMV
Current meds: azithromycin, plaquenil, mepron, septra, IM rocephin, IV glutathione

jrpsf
Veteran Member


Date Joined Aug 2014
Total Posts : 1643
   Posted 7/17/2017 11:12 AM (GMT -7)   
David-Doxy was killing off Lyme which is nothing compared to Babesia or Bart. Unfortunetly the herxes when treating those co-infections are pretty much like living h**l for many. I know how hard it is to believe that treating can actually make you that much sicker. Hard to believe you could actually get sicker and then the path to getting better is to get worse. It seems like it's a crazy cruel joke. For me at least it's been the worse the herx the more progress I've made. I do a lot of detox so the crazy herx weens off after I've been on a protocal a bit but that's been the scenerio.

It doesn't seem as though the abx's aren't working. It's that your bacteria load is still so high the die off is too tough to handle.

davidgraham5
Regular Member


Date Joined Jul 2016
Total Posts : 140
   Posted 7/17/2017 11:56 AM (GMT -7)   
So what do you suggest I do? My lyme doc doesn't want me coming off them. A week break max then back on. I took two weeks as I needed it! It is a living hell your right. Way worse than a lyme herx

Pirouette
Veteran Member


Date Joined Mar 2014
Total Posts : 6042
   Posted 7/17/2017 3:38 PM (GMT -7)   
Hi david -
I'm sorry you're struggling like this.

I'm not sure what kind of pain you're experiencing and where. Are you attributing it to babesia or Lyme or bart?

My Lyme-friendly neurologist shared withe me that he feels most neuro pain and discomfort and symptoms are caused primarily by inflammtion. What anti-inflammatories are you taking? Japanese Knotweed, turmeric have worked well for me.

Also, you might consider other areas of detoxing you're not covering - I would include a binder and some lymph detoxing.

If nothing helps, I would consider some pain relief Rx. Severe pain can cause more and serious levels of stress in the body and can be more detrimental than the impact of taking pain meds (which also comes with issues). You really don't want to go too long without addressing the pain.

-p
Lyme Moderator
Chronic late-stage lyme—likely infected in '00; Clinically dx Mar'14 w/ Babs, Fry Labs+ Bart-like, CDC+ Bb. First treated 4-5 viruses & GI/immune. Herbal antimicrobials in May; IV port-started Rocephin in Nov; added vancomycin Mar'16;
DETOX: Pinella/Burbur/Parsley/Milk thistle/Burdock/Red root; Samento/Banderol/Enula; JK/Turmeric; BFM-1; antifung; many many supps; cholestyramine!

davidgraham5
Regular Member


Date Joined Jul 2016
Total Posts : 140
   Posted 7/17/2017 10:50 PM (GMT -7)   
Thanks for info.

The pain is like my body is burning and feels like a lot of inflammation going on. It's mostly in my lower spine aching burning pain. I haven't tried anti inflammatory pills as wasnt sure if good idea or not. I'm taking turmeric. When I stopped antibiotics the pain went away but started creeping back again so I need to start antibiotics again but it's such a thought when I herx so much and I herx straight away. Was thinking of switching to herbs? Your right though I need to address the pain as the stress I causes me is not helping. I will add in activated charcoal also.

bluelyme
Veteran Member


Date Joined Nov 2015
Total Posts : 4396
   Posted 7/17/2017 11:08 PM (GMT -7)   
bvt and rife and hd bart treatment helped my burning sensations ...nerves can take a while to heal . but some bugs dive deeper with ineffective abx or dosing imo

davidgraham5
Regular Member


Date Joined Jul 2016
Total Posts : 140
   Posted 7/18/2017 12:04 AM (GMT -7)   
Thanks for info.

The pain is like my body is burning and feels like a lot of inflammation going on. It's mostly in my lower spine aching burning pain. I haven't tried anti inflammatory pills as wasnt sure if good idea or not. I'm taking turmeric. When I stopped antibiotics the pain went away but started creeping back again so I need to start antibiotics again but it's such a thought when I herx so much and I herx straight away. Was thinking of switching to herbs? Your right though I need to address the pain as the stress I causes me is not helping. I will add in activated charcoal also.

yancync
Regular Member


Date Joined Nov 2015
Total Posts : 449
   Posted 7/18/2017 3:18 AM (GMT -7)   
Activated charcoal did help with DS at times. Basically during the first 6 months we tried many detox methods to see if anything worked. Often after a few days, he would get a break before it began again. He was pulsing antibiotics when that happened. When he was taking them daily the first month, it was pretty much non-stop.

I agree - it does mean they are working and killing off a lot.
Parent of teen DS w/ CDC+ Lyme test Nov 2015, late stage Lyme + mycoplasma, bartonella, babesia. Currently treating with antibiotics/anti-malerials, multivitamin, magnesium, CBD oil.

Website I started: ParentsofLymeKids.com aka Lyme Disease 101 for Parents
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