The nerve/muscle pains in my legs are so severe. I am currently on rifampin and minocycline. I went off them 2 wks ago due to severe herxing. I gradually went back on them. I take neurontin and use lidoderm patches. Neither is helping. I am taking magnesium as well as detoxing with lemon water and alka seltzer gold. I usually wake up feeling ok, but by the evening the pains are horrible. I'm really not sure what to do. I really don't see how I can continue on this combo feeling like this.
Posted by FuzzySlippers (Member # 13658) on :
Maybe you should contact your doc and ask about pain killers for the time being? Bart is exceedingly painful.
I'm sorry you're having to go through this.
Posted by Ellen101 (Member # 35432) on :
When I'm feeling this awful and in this much pain it really hurts more than helps to hear "I had it from head to toe and I handled it" manybites. FYI I don't have painkillers or I would be taking them. Also my LLNP said painkillers don't help with this type of pain any way. Fuzzyslippers thsanks for your support
Posted by debilyn (Member # 35753) on :
I can't stand that leg pain. I am using pain killers, and they are definitely taking the edge off.
Ellen, I tried everything you mentioned and then some. Pain killers right now is the only way I, personally, can take the pain.
I don't plan to take them forever
This is just my experience, though. Hang in there. That pain is the worst. So sorry you are suffering.
Posted by lymielauren28 (Member # 13742) on :
Girl, we are in the SAME boat! I'm on Rifampin and Doxycycline. I did 6 weeks straight and finally stopped day before yesterday. I just could not take another day of feeling like that. It felt like my legs were literally going to explode.
I am feeling better today than I have in 6 weeks, so I know it was a herx. I honestly think that when the legs are hit that hard that it's Bartonella Quintaina. I had Bartonella Henslae a few years ago and treated it - and herxed - and it was hard - but NOTHING compared to this reinfection. It sucks.
So....basically I'm in the same boat that you are. I really don't think I can handle this combo. Gonna give it one more shot, but sheesh...we'll see. I'm looking into some herbal combos and may decide to go that route in the end.
*Hugs* to you!!! We'll get through this one way or the other!
Posted by Tammy N. (Member # 26835) on :
I know this pain also. Plus the vibrations, buzzing, tingling, sizzling. It is just awful. Mine is more on my left side.
I've been reading a lot from other folks who attributed it to parasites. Read all you can on the parasite posts. I think this is possibly our biggest underlying issue. (Read all of glm1111 posts. She is over Lyme because of her long-term parasite treatment. Amazingly encouraging).
Best to you.
Posted by TF (Member # 14183) on :
Ellen, you really need to try to get glutathione. That is an essential part of the detox program to stop the terrible herx effects you are having.
See if you can get the suppositories. They could make all the difference.
So sorry you are suffering so much.
Posted by Ellen101 (Member # 35432) on :
lymielauren, 6 wks and you still felt that way? Wow, I was hoping maybe this will pass after a week or two. There is no way I could do this for 6 wks. I have to work and take care of my kids. TF, I did a search on glutathione. A little confusing as to what to order and from whom.
The only thing I find a little sad is if we need to go through this than there should be more support in the means of meds/detox etc given by the LLMDs/LLNPs.
When you look at cancer pts going through treatments now a days they are given all these meds to ward off nausea/fatigue etc. Yrs ago they did not have those options. I went through chemo and there was absolutely nothing to ward off the side effects.
Debilyn, what pain meds have helped? I know my LLNP said nerve pain is tough not much works.
I thought the Magnesium was my answer when this happened before, but unfortunately the increase has done nothing for this pain.
Posted by debilyn (Member # 35753) on :
Ellen, I use Tramadol and Norco if Ihave to. I was taking Neurontin, but it did nothing so I stopped.
I think my pain is more in my muscles and joints; I rarely have the electrified, zappy pain in my legs. They ache to the bone so bad sometimes I just curl up and rock and cry.
The meds I use allow me function. Unrelenting pain in itself is a horrible affliction that can be very depressing.
But this is just for the short term, until I can get a leg up in treatment. I've started using Wobenzyme PS per my LLMD
as well as Fish Oil and Chia seeds among other natural things; I am hoping it will help my pain and I can eventually dump the pain meds.
Posted by sparkle7 (Member # 10397) on :
Sorry you are going through this. Have you tried anything like saunas or infared light devices? Chronic pain is very debilitating. Most doctors are not trained in pain management & they are being discouraged from giving appropriate pain meds due to some people abusing them.
Sometimes, applying heat & cold alternatively can help. There's also an herb called kratom that works well but it's not for everyone.
I know it sounds some of woo-woo but some meditation can help. There are CDs from Hymi-sync that work well for meditation. Dr. Jeffrey Thompson also has some good ones. They sell them on-line or at some healthfood stores.
Posted by randibear (Member # 11290) on :
can you exercise?? i think it can help a little.
Posted by nonna05 (Member # 33557) on :
I forgot LDN is supposed to help with pain,,,you just can not be on any codiene product at all.... Some have a rough time with it,,skittish...others do great
Posted by Razzle (Member # 30398) on :
When I had severe nerve pain, Benadryl helped more than anything else.
Posted by Ellen101 (Member # 35432) on :
LDN???
Posted by lymielauren28 (Member # 13742) on :
LDN = Low Dose Natroxone. I don't know enough about it to offer up any advice.
Posted by Ellen101 (Member # 35432) on :
Thanks for all the suggestions. Not sure what I will do. I just know I can't continue to be in this much pain. I know that rifampin can effect other meds. I'm wondering if it is decreasing the effectiveness of the neurontin??
I may have to discontinue this combo all together as I do need to be able to work.
Posted by hopingandpraying (Member # 9256) on :
Click on "Search" in the upper part of the Lymenet page, then write "low dose naltrexone". Look for it in "Medical Questions".
You'll find many posts written about it.
Hope this helps.
Posted by FamilyFive (Member # 37206) on :
My heart goes out to you. I went through the extreme pain for 6 weeks and it is unbearable. I was literally disabled. Painkillers didn't make the pain go away but took the edge off so I could work a few hours a day (at home thankfully) and help take care of my children.
My LLMD had me go off my meds altogether to get rid of the severe pain (it took a while to dissipate). She said it was unacceptable when there are other medicines/supplements to try. I was started on a different protocol and so far so good; no severe bone or muscle pain so far.
My thoughts will be with you!
Posted by Ellen101 (Member # 35432) on :
FamilyFive, What are you on at this point?
Posted by FamilyFive (Member # 37206) on :
I sent you a PM with the long version, but I'm on amox, mepron, and azithro now. It's going well. It's actually my first combination that hasn't made me severely sick.
Posted by Marnie (Member # 773) on :
Consider *WHITE* TEA (reduces collagenases and elastase).
Consider Zyflamend.
To treat the SYMPTOMS, the body's REACTION i.e., massive inflammation.
Posted by Ellen101 (Member # 35432) on :
Thanks Marnie I will look into the White tea, but Zyflamend almost had me in the ER due to extreme herxing. The pain was so severe. When I went back to the place I got it they told me I never should have been taking it with the abx as it would increase them therefore increasing the toxins.
Posted by searching4truth (Member # 28481) on :
Yes, Rifampin can, and does, effect other medications, especially pain meds. They can either become too weak or too strong. For me, it made my pain medication almost ineffective. My LLMD, who is also a pain specialist, ended up doubling my dose, and even then, I was still in pain.
It was awful! I know how hard that drug can be. You might need to detox more. You can do castor oil packs on your liver, with organic pastor oil, drink lemon water (with a straw helps keep the lemon from eating away at your enamel), Epsom salt baths, you can do peat baths, which are tubes of mud that you put in your bathtub, take cholestyeramine. Some people do not do well on it, but others do great.
You can also try glutathione. I just did it for the first time the past 2 nights in my piccline, and today I felt better than I have in weeks. There are a lot of options. When I get the legpain, I rub Tiger Balm for Muscles, and it provides a little relief. Heating pads would help. No residual effect, but they made the pain a little better while I was using them.
Its a tough combo, but if you can stick with it, you might get some good results. If you have any questions about any of the methods I mentioned, PM me and I can explain better. Good luck... I just forced my way through that part of my treatment, and after 4 months or so, the Bart was very noticably lower.
Posted by Kudzuslipper (Member # 31915) on :
Hi Ellen. I have nothing to add...but want to offer you support. I am also taking notes on all the good advice. I am going through a bad period too. Hang in.
Posted by glm1111 (Member # 16556) on :
Ellen,
I used to have horrible pain to the point I was given morphine. My neurologist wanted to do a nerve block because of the nerve damage. I eventually treated for parasites and the pain started to lift and went away completely after going after parasites.
They can be a co-infection of Lyme and often overlooked even by LLMDs. Google parasite symptoms and check the symptom list at Humaworm.
Check www.lymephotos.com for more info. I had EVERYTHING pictured come out of me after 6 mos of salt/c and antiparasitic herbs.
Also, being dydrated can be associated with pain, so drink plenty of water. Coconut oil can help with pain as well as cloves which is an analgesic. Sorry you are suffering.