Herxing while off antibiotics

My daughter is 16 and was diagnosed a year ago with neurological lyme. She has been in a wheelchair for a year now. Last January after 3 months of oral antibiotics we went to a treatment center in arizona for 12 weeks. She did intravenous everything, antibiotics and immune boosting bags. It helped in alot of ways but pain still has her in wheel chair. This last week has bee horrific for her. Her neuropathy is so bad especially in her legs. I believe it's a herx. I hope that's what's causing this except she's not on any antibiotics right now. So is her herx this bad because her own immune system is finally taking over or what. Could this actually be so bad from the moon and weather... I just don't know what to do for her. Any thoughts would be helpful.

I'm sorry, I didn't welcome you to our forum! (Where are my manners!?)

I hope you continue to read, post, ask questions - this is a supportive, knowledgeable group of people here.

The "New to Lyme?... Start Here" thread at the top of the page is full of great information. When you have a moment, maybe take a look at it.

Is she just taking support supplements? Or any protocols directed at treating lyme and co-infections?

I'm glad the Dr.'s are doing what they can to support her body. Is she taking a dose of cortisone for her adrenals...or herbs?

I think post lyme means - she's finished treatment, and has issues from having the disease wreak havoc in her body?

I'm no expert, but to me it sounds like she has chronic lyme, not post-lyme...and has active symptoms...which means more treatment. It doesn't need to be antibiotics, it can be an herbal protocol.
I could be wrong...and am interested what other forum members thoughts are.

I'm concerned about the use of "post lyme" here. This sounds like Lyme not being adequately treated, not post lyme. If she is in a wheelchair due to pain, that is not post Lyme.

Mother of lyme, could you tell us where you're located? Are you willing to see another LLMD for another opinion?

I believe she has cronic lyme. I believe anyone treating lyme for an a long extended period of time is cronic. I think the Dr's point is that they don't think lyme is now the main issue as it was in the beginning. Now it's her hormones, cortisol and adrenals. These 3 things can cause horrific symptoms. Their thought is that since she was treated extensively for lyme and Co infections and did respond just not to the extent they thought these other issues may be the cause. They and I also believe that until we get these issues under control her body will never be able to preform properly. As we all know adrenals are every thing. Her Dr's told her right out. She's not done with antibiotics but her adrenals and immune system can't handle it right now.
We detox as much as possible. Burber detox, detox tea..
Unfortunately she is alergic to glutathione, amino acids, ALA, and manitol. so that's not helpful. Trial and error. Hate it.. we r looking into bee venom therapy. It could help her on so many different levels. She's worried about the pain with her neuropathy. Still doing research. Educate me on herbs we may want to try. Thank you so much for taking the time. As a mom this is tearing me apart, not being able to help her or give her any relief.

First I want to thank you for being there for your daughter, and supporting her through this nightmare. It is so important for your daughter to have the unconditional love and support. It will go a long way in her healing and recovery.

Okay - so you and the Dr.'s are saying she has chronic lyme and needs more treatment.
is she taking bio-identical progesterone? and is she on cortisol for her adrenals?

In my opinion, it wouldn't be a good idea to take too much time off of treatment - as any gains made could be lost..as the infection continues to grow.
An herbal protocol would be something she could start on - at very low doses.

One protocol is Buhner's:

buhnerhealinglyme.com/

There are others - Cowden, Byron White, Jernigan's.

As far as detoxing goes, is she taking warm epsom salt baths? How about dry brushing before the baths.
Drinking 8 glasses of water daily? - Some glasses with fresh lemon juice?
Has she tried Alka Seltzer gold?

Also, Activated charcoal as a binder to flush out the toxins that accumulate from the bacteria die-off.

The "New to Lyme" thread has more detoxing suggestions..you can look at.

I hope you don't take offense to what we are saying - we just want to help your daughter get well...

Treatment yes, with antibiotics no. Her dr from Arizona is an M.D./ N.D trying to stay away from any med that put strain on her immune system and adrenals.
as for detox yes to all you listed as well burber detox, and cholestyramine.
No to brushing due to the neuropathy and skin sensitivity
Titrating up low doses of progesterone. Having trouble with testosterone with skin reactions, but waiting on a script from a compoundingredients pharmacy.
No to low dose cortisol but I will speak to dr. Monday.
Any thought to bee venom.?? We also purchased a UV sauna that she will be able to utilize by end of weekeded.
I am never offended by helpful advice especially when I'm asking for it. I listen to everything and everyone. I do my research and then discuss it with er Dr's. No worries there. I appreciate any and all help.

We have a couple members doing the Bee venom therapy. One is 'Revive'. You can do a search - blue bar - upper right side. Put in something like: "Lyme - bee venom therapy" and you should be able to read some older threads on the subject.

Steroids aren't usually recommended for us dealing with lyme disease...but some people do need a low dose of cortisone sometimes when they can't get their adrenals functioning well.

In fact, my LLND discussed it with me...I declined...and mine have gotten quite a bit better over time, and with treatment.