I feel like crap

Oh no LP!! Im not liking this - youre supposed to be almost well!!

Maybe its a herx - your final herx??

Are you on Rifampin with mino?

Hope you feel better tomorrow, LP.

Let us know if the LDN works for you. I did try it, started low and got up to either 3 or 4.5 mg - can't remember. It didn't help with my pain...in fact it made my sleeps worse.

It does seem to work for a lot of people though, if you give it a fair shot.

I just saw the UTube vid of Dr. Martz (sp?) - the Dr. from Under Our Skin - diagnosed with ALS, treated for lyme and got better.
He's on antibiotics still 8 years later, but doing well.

When I see that, I wonder why this didn't make the news? Someone with 'definite' ALS recovers?
It makes me so angry...

I was just going through a similar thing -- getting down about my treatment, getting angry about some friends' behavior and replaying old events -- fueling more anger and resentment. Then my niece (a yoga instructor) posted a little statement reminding people that the change of seasons can really challenge our immune systems. It manifests as irritability, depression, and anger. Sound familiar?

So instead of calling up my friend and telling her exactly what was bothering me, I started being a little kinder to myself, upped my detox and did some gentle yoga. It helped a lot.

Another thing that might be affecting your mood and well-being is the Rifampin. I remember reading that it can shut down your spleen for a time, leaving you with all your toxins just circulating around your body. That's one of the reasons you are not supposed to drink while on it -- you can't process the alcohol and get it out of your body. I'll try to find that article.

Anyway, take heart all this will pass!

Wow LP. I'm sorry. Andrew is on rifampin (at least I got that right this time :) ), and has had a very bad week, thought he was cycling, he's on 6 weeks now, low dose.

But he has a bad week, so did I as I'm tired of caring for him and getting dumped on. Then my well visit, dr. tells me therapy (I finally decided to go in Nov.) is not working, I need a psychiatrist! Won't write and anti anxiety prescription and tells me no more wine (I had about 2 glasses at night to take the edge off or stop shaking), depending on how bad a day it was, lyme rage is not a good thing, or the anger that goes along with it :( ....

Dr. also asks me what will happen to my son or the family if I end up with a stroke and can't even care for myself! WOW. Yet my hubby goes right after me for his well visit - NOTHING, no reprimands and he's got plenty of issues, just doesn't say much or offer much info. I guess.

Then I had a giant private pity party (and of course bugged Traveler with a private note, lucky her), agonizing that no matter how much I research or keep him on a diet or make more lists with questions for the dr., I'm still not getting him well enough to be at school and be ok!

He often asks me what I'm all stressed out about! Guess when someone else has your back and takes care of you 100%, there is no stress - you would thing that, NO STRESS, HE'D BE BETTER BY NOW!!!!

So then I went to a site, caring for the care taker, and realized I have every symptom of caretaker burn out. UGH.

So, lyme or no lyme, so many people are effected by it. Here, seems like it's always some huge disaster in our lives, it just never stops over the past 15 years.... I'm just broken at this point. I'd LOVE if it was just the car or washing machine that broke! Those things are nothing after years of nightmares.

So, know that you have people who would enjoy the pity party.

FB friends get to me sometimes, so many seem to have those picture perfect lives, marriages and children! I still think alot are up there bragging because they are truly insecure and looking to be propped up.

By the way, LLMD told my son about red poop and not to freak out if that happened :)

I'm glad you posted (Revive) about pill taking - I will have my son take one at a time if LLMD boosts him to 300mg. this week.

Hang in LP - it's just the many phases I'm sure. Trav. would know and many others on this site, but sure helps the others of us to know to just keep pushing on and not get so rattled.

Post Edited (Lovemychildren Mom) : 3/24/2015 10:48:21 AM (GMT-6)

LMC mom - you know that I love getting emails from you!!! And you need to take better care of yourself - I've been bugging you about that too!!! You are much to hard on yourself!

Lymie Girl, thank you, I know I'm hijacking LP's post, but I really needed to hear that too. I carry so much guilt with me as well that I should have done something sooner or somehow I let him down and I don't ever want to do that again, but I don't know what is really right and how to restore his life and world. I always wish it was me going through it, not him, but I can't take that from him even if I want to! I've had so much illness and surgeries of my own, I know how hard it is, but I wouldn't mind doing this, something more, for him rather than see him suffer :(

It is eating me alive. How do you find it the best way to let go of your anger and frustration?

Thanks Lymie Girl! I'll work on it.

I read this book a few years ago and I know I should focus and go in that direction

www.amazon.com/The-Sedona-Method-Happiness-Well-Being/dp/0971933413

but it's SO HARD with my son's problems! I'll keep trying, you are a GREAT inspiration! THANK YOU!

oh no lymepickle I am so sorry!! I didn't want to hear this coming from you! =(((

could you tell me why are you taking LDN?

I just want to put my two cents in - don't you think there may be a chance that your lingering symptoms are due to just leftover damage like me? if that is the case, and you are still taking all of this stuff, then you are only causing more toxicity in your body, as you had mentioned. I am in no way saying this is what is happening, I don't want to step over the line, but please think about this. If you continue to take all of this stuff, you are not giving your immune system a chance to fight on its own, and if you are hurting your immune system with all of these meds, it will never get back to where it should be - and you will remain in this viscious cycle.

You and I were almost symptom free around the same time - I stopped taking meds, you didn't - I am ok, you are not - just think this thru really carefully. I don't want to be the one to steer you in a different direction and then you get worse, but I just wanted to throw this out at you.

as for facebook - I am on it too, and it can be really hairy. don't let it get to you - it is a useful source of info and a way to stay connected, but I see a lot more bad things with it than good sometimes. I use it more as a resource and don't pay attention to the people who are not really my friends - if they wont stay in touch with you, they were never worth being friends with in the first place.

hugs to you lymepickle - I hope tmrw is a better day!!!

Sorry I'm late to the unparty and, soooo sorry you're having such a hard time, LP!

Ya know, I'm not sure when you're taking LDN but, if you're taking it at night, you might want to consider switching to daytime dosing.

The compounding pharmacist I use confirmed that LDN works just as well with daytime dosing vs the formerly-recommended nighttime dosing. This is confirmed the author of "The Promise of Low Dose Naltrexone Therapy" here:

http://www.elaine-moore.com/Articles/LowDoseNaltrexone/LDNDosing/tabid/111/Default.aspx

I've been taking mine in the morning and only had some weird, vivid dreams for a few nights when I first started (1.5mg). Otherwise, I'm sleeping really well.

And, without a doubt, I herxed when I got up to 4.5mg (last Thursday). I was very puzzled when this happened but extensive Googling showed that many people herx either when they first start LDN and/or get up to the optimal dose.

I upped my detoxing which helped and now I'm at a new normal with a reduction in symptoms - yay!

Here's what I consider to be some good info on LDN and Lyme:

http://communitypharmacymd.com/low-dose-naltrexone-in-lyme-patients/

Hope you're able to get past this, LP!

Thanks all for your support! Also I know I said I'm feeling like crap. It's not really like a relapse, maybe just a mild herx? If that.. But More of like a feeling of just being toxic from the abx... Not sleeping from the LDN... And some treatment fatigue. So I still have come a long way. Also my anger came out towards my family doctor which is not good.

But I still must push forward! I might need to get more serious about detoxification. I still haven't bought that IR sauna yet!

CD - that is interesting! Maybe I will take the LDN in the morning then? So it doesn't matter as much if it's taken at night I take it.

LP hang in there! This crap can really take a toll! Do something special for yourself...treat yourself, maybe not with food but something you enjoy! Be kind to yourself...we didn't ask for this but we are all warriors!! You can do this...purge the people that are not supportive and keep your chin up! We all know how you feel.

HUGS x

LP:

I am so sorry you are not feeling well. Maybe if this product is not working for you, you can consider other products to strengthen your immune system? Do you feel bad from the Rimfapin or the LDN? What is LDN? Have you changed anything else? Have you considered introducing them a week apart--maybe continue with Rimfapin for a week and come back to LDN after your body gets used to Rimfapin and tolerates it well?

One of my GP said my test for Lyme was false-positive and didn't treat me. Instead of getting angry, I just dropped him. Same with the pediatrician when he refused to treat my children and saying my kids are making it up :(

Life is hard enough, I don't have time to deal with ignorance. Why not drop your GP? I think it will make u feel better if you leave him.

BTW, after I started treatment, I never felt worst. So my phylosophy is that in order to get better, one should find the right combo. I didn't tolerate doxi well, so I dropped it and doc gave me other combos and still got well without doxi. I never got worse. I think Mino helped me most and I was on amox constantly. I don't remember if I took Rimfapin. Another one I used was clarytromicine. I don't remember what else I used but I tolerated everything well.

I would back up of the LDN whatever that is, or decrease doze. I don't think the immune system will strengthen if we overwhelm it. I kept things very simple and I was not on so many supplements either because all that goes in must come out and I believe our body (esp. Liver, spleen and kidneys) become overwhelmed by all this. My 2 cents...

I hope you figure out a plan that works well and see improvement soon
Hugs :)

Post Edited (Simela1) : 3/25/2015 11:05:39 AM (GMT-6)