HealingWell
Search Close Search
☰

PAIN

Support Forums
>
Lyme Disease
✚ New Topic ✚ Reply
❬ ❬ Previous Thread |Next Thread ❭ ❭
Posted 6/23/2016 1:47 AM (GMT 0)
Does anyone else have nights and days of nonstop pain? I lie awake all night, never falling asleep, due to the burning pain in my buttocks and hips and slashing like fire across my back. pressure in my teeth and head. Electricity, buzzing in the soles of my feet and my hands go numb.
It lasted all day. I detox, drink water, take glutathione, curcumin, burbur. nothing helps.
I increased my rifampin from 300 in the morning 150 at night to 300 morning 300 night.
It hits that fast? Same night?
I have fever.
Please if you recognize this tell me your experience.
Posted 6/23/2016 2:32 AM (GMT 0)
Swede,

I feel bad that you have to go through this. It sounds awful.

I don't have the same experience, however I think it does sound like a Herx. I think I would back off to 150 tomorrow morning and night. Maybe do that for a day or two until you feel better then increase it very slowly.

It could be that the detoxing you are doing just isn't enough to keep up with your toxin level and you may have to add in a couple more detox methods.

I hope you feel better soon and that you can sleep tonight. :(
Posted 6/23/2016 2:55 AM (GMT 0)
Balance - meds in, to toxins out, ratio - I so agree with Denikeef.
Posted 6/23/2016 3:04 AM (GMT 0)
Sorry, Swede that you're suffering!

I have nerve pain, too...but I'm lucky that it goes away when I fall asleep....

I agree - maybe go back to your previous night dose of 150. And...see if there's more you can do to detox.

If you don't get relief from the nerve pain...maybe you should see your Dr. for a pain med.

i have been tempted to ask for Gabapentin or lyrica before - but what's holding me back is you can't just take them 'as needed'. They are a pain med that you take daily...and I don't want that..so am toughing it out...but I do suffer often during the day.

Hope this resolves soon, sending hugs to you.
Posted 6/23/2016 3:26 AM (GMT 0)
I would like to add to what Girlie said about the Gabapentin.

I take this drug. It does help-slightly, however once you get on it, it is very hard to get off. Even though it is not addictive, the body becomes dependent. You do have to take it daily. And when you don't, at least for me, the nerve pain comes back stronger.

If I had it to do over again, I would not use it.
It is just an opinion, but I just want to put it out there for anyone who would consider it as something to research before taking.
Posted 6/23/2016 3:41 AM (GMT 0)
Thanks for posting that Denikeef! I did not know that.

Well, that gives me a good reason not to take it then.
Posted 6/23/2016 3:55 AM (GMT 0)
Hi Swede - I do not experience constant pain like you describe, but I have daily intermittent pain. As such I wanted to pass along something which hopefully might be helpful. As others have mentioned, you may not be detoxing toxins from your body efficiently. about a year ago I had genetic testing done by 23 & Me. I then had the results interpreted by Live Wello. I recently started seeing a new LLND who finally helped me decipher the results. While my MTHFR was normal, many of my other methylation pathways are genetically compromised. Some of mine which had either heterogeneous and homogeneous mutations included COMT, GAD, SOD2, SOD3, VDR and Cox5a/6c. As such my LLND has been giving me specific supplements that support those mutations and I have noticed a lessening of the severity of some of my symptoms, which is a very welcome thing for me and it could be by supporting any genetic mutations you may have, you might be able to get some relief. Just my 2 cents. Hoping you feel better soon.
Posted 6/23/2016 4:05 AM (GMT 0)
Pain was my middle name. For a long time, 2 decades. Still get it intermittently, but its better and I can do things I could not do at my pain height 8 years ago.

I found no silver bullet. In my case its slow muscle rehab. But- rehab was not as effective pre ABX, been off ABX for 15 months now.

Detox, although effective for most people, is quite ineffective for me due to a liver detox pathway mutation.
Posted 6/23/2016 4:42 AM (GMT 0)
Good posts.

Swede--

I went through a bad phase of awful pain and spasms every night. I never slept. Was miserable. But low dose naltrexone really helped.

I think you might need to back of treatment until you have resolved the yeast/fungal load. Just too much burden on your body. Too hard to keep up with enough detoxing. What other detox protocols can you do?

Also, you definitely need to be on a binder. OTC charcoal and bentonite clay. But the most effective binder is PURE cholestyramine. Let me know if you'd like additional info.

Hope you get to feeling better. Give it time.

-p
Posted 6/23/2016 4:57 AM (GMT 0)
Gunna try kratom ...tramadol sucks ...friend with bad nueropathy is on dr h protocal of dap,rocephin, rifampin ,plaq, and diflucan pbx x3 and other s says it has helped some
Posted 6/23/2016 5:36 PM (GMT 0)
Dapsone, plaquenil an rifampin can induce neuropathy. We need to be careful with the medications being prescribed if we already suffer from neuropathy.

Dapsone-induced peripheral neuropathy. - NCBI
Posted 6/23/2016 5:46 PM (GMT 0)
ROXY - are you saying the three combined?

or...are you saying Rifampin without the other two can induce neuropathy? I hadn't heard or read that.

It's temporary - once meds are discontinued...it goes away?
Posted 6/23/2016 6:30 PM (GMT 0)

Mister Mike said...
Hi Swede - I do not experience constant pain like you describe, but I have daily intermittent pain. As such I wanted to pass along something which hopefully might be helpful. As others have mentioned, you may not be detoxing toxins from your body efficiently. about a year ago I had genetic testing done by 23 & Me. I then had the results interpreted by Live Wello. I recently started seeing a new LLND who finally helped me decipher the results. While my MTHFR was normal, many of my other methylation pathways are genetically compromised. Some of mine which had either heterogeneous and homogeneous mutations included COMT, GAD, SOD2, SOD3, VDR and Cox5a/6c. As such my LLND has been giving me specific supplements that support those mutations and I have noticed a lessening of the severity of some of my symptoms, which is a very welcome thing for me and it could be by supporting any genetic mutations you may have, you might be able to get some relief. Just my 2 cents. Hoping you feel better soon.

MM- so the interpretation through live Wello wasn't sufficient enough for you to know what to do? I think that's a draw back to the 23 and me. You test, but then you have to have a knowledgable resource interpret it. So for some, it may be a waste of money if they can't get that resource?
Posted 6/23/2016 6:30 PM (GMT 0)
thank you all so much for your support. I am going to go back to 300 mg rifampin in morning, 150 at night. I took half an Ambien last night and slept, but still woke up with muscle spasms all over.
Mister mike I have tested through 23 and me and i have homozygous MFTHR. I take a methylation support that helps me detox. maybe i need to increase it.
I used to go to FIR sauna twice a week but i have been too sick to make it. I will try to go today and keep going.
I want to make a VERY STRONG point: DO NOT TAKE ANY BENZODIAZEPINES! I was bit in 2000 with classic bulls eye rash. I was never diagnosed and managed to keep my symptoms mostly at bay - until my husband had a seizure and was diagnosed with terminal brain cancer. My Lyme exploded. I didnt know what i had at the time and my doctor prescribed Ativan a strong benzo (like klonopin, xanax). It helped with my muscle pain and electricity and calmed my shredded nerves. I took it when needed first and then I had to take more to get the same effect. Long story, i took it for 5 years. had to take it every day or the pain was horrible, nerves on fire. IT IS A HORRIBLE DRUG. It has taken me 2 terrible years to slowly slowly titrate off Ativan.
It is NOT worth the relief to start taking ANY of these drugs. I am writing this to save even one person from the withdrawal hell i went through. dont take tramadol or any other Benzo or benzo like drug.

Anyway... sorry for the rant. I hope you all have a great day. xxCharlotte
Posted 6/23/2016 6:35 PM (GMT 0)
Pirouette I called two biological dentists to have a culture done for my mouth and sinuses and both said they dont offer that. I have never had it confirmed that I have either yeast or fungus. I cant do the stool test because it says you have to stop all abx for at least a week, best two weeks. If i did that I would die, my symptoms return with a vengeance within 2 days.
I dont think a blood test will show y/f? Maybe somewhat helpful to detect Candida?
Anyway, should I continue the Diflucan? Will it get to my sinuses?
Should I still take a binder? I have tried activated charcoal. it doesnt seem to do much but maybe I am not taking enough> I have taken 4- 5 pills at a time?
Should i try cholestyramine?
Sorry for all the questions! xxC
Posted 6/23/2016 6:41 PM (GMT 0)
Swede my dr only had me stop all the things I was taking for 24 hours. Could you do that?
Posted 6/23/2016 8:17 PM (GMT 0)
welcome to my club.
Posted 6/23/2016 9:10 PM (GMT 0)
So sorry for your pain - and yup - been there. Couple stretches of not being able to sleep for several nights in a row because the pain was so horrid. The only rest I could get was lying in epsom salt baths. Horrid, horrid, horrid. Pain flares around the full moon cycle, pain flares with herxes. If the pain isn't subsiding with treatment (mine did) you might want to take a look at the treatment. Either doing too much too fast, or perhaps your body is asking for something else. I found the one anti-biotic herx MUCH MORE GNARLY than the herb herxing. Hang in there. You'll figure it out. That you are here asking is a GREAT right action step. Imagining the information you need coming to you quickly.
Posted 6/24/2016 12:15 AM (GMT 0)
K - it wasn't sufficient for me, but I'm a bit dense when it comes to methylation stuff. That being said, for those interested in having the 23 & me testing done, I would definitely line up a knowledgeable person to interpret the results for you unless you're well versed in this stuff. I do think if properly done it is a bonanza of very important information and I know so much more now about my health - so very large upside here and not a waste of money in my opinion. Just do your homework beforehand.

Swede - I would definitely look into that if I were you with a homozygous MTHFR as your ability to detox is seriously compromised and in my opinion you need all the detox help you can get! I also wonder about some of the other mutations like I have and if you potentially have those. As an example I was given glutithione cream by my LLND for my GAD mutation and that has helped me greatly.
Posted 6/24/2016 12:16 AM (GMT 0)
For $9 I had a promethease report done of my 23&me and the information was SO VALUABLE!
Posted 6/24/2016 2:13 AM (GMT 0)
Thanks for the warning on tramadol and benzo...i am back to cordalys and holy basil.......maybe the kratom...
✚ New Topic ✚ Reply