I've been on 2 months now of Minocycline treatment for lyme. For the past couple days, I've been having severe anxiety and the awful neuro/nerve symptoms in my head...to the point where I'm scared.
I want to bite everybody's head off that talks to me...it's bad. Definitely not feeling myself in my head.
Is it possible to fall into another herx after you've had an initial herx from an antibiotic?
I guess I just have in my head after herxing on initially, I should just be improving now. Funny thing is, I think my energy level during these awful past couple days with the mental herx is a little better.
I want to hear that herxes go back and forth like this...on and off. My doctor has this expectation that I should be feeling closer to normal after only 2 or 3 months of treatment...this "quick" expectation is really bugging me. I just have the feeling that with me it's going to go slower.
To make an extremely long story short, I've had chronic lyme for 12 years. Got treatment for the first 4 or 5 years, then gave up and did alternative things like accupunture, etc.
Got bit a few times again since the first bite. Got bit last fall, got REALLY bad. Found new DR and he's had me on mino for 2 months and is expecting me to feel closer to normal already!!
Anyone else feel his expectations are a little quick??? geesh. It's annoying because apparently he's one of the best lyme DR's in NJ and has successfully treated people for 17 years!
I just saw him this week and he was very surprised I wasn't feeling closer to normal. He found in a CBC that my calcium was low, which he said is very rare for my age...32.
He wants me to see an Endochrinologist while I'm on Mino. He suspects due to the low calcium that I might have a parathyroid problem.
He said "you definitely have lyme but there is something else going on here because I'm very surprised you're not a lot better now." I am very discouraged and upset about all this and need to hear some opinions on his whole quick timeline.
Also, anyone have any thoughts on the low calcium? Can this be from lyme?? He acted like he hasn't seen this on a blood test for someone my age in years! He said it's very rare.
I think what also makes him wonder about another condition is the fact that I cannot tolerate b-vitamins, coq10, caffeine, sugar, anything that stimulates me. It's gotten worse now that I've been on Mino longer. I get major anxiety and insomnia from all that stuff.
I really need some support here. I just went this week to thinking lyme was my main problem, and being really happy about the care I was recieving from my doctor to now feeling very rushed and confused.
thanks. Carolyn
Posted by Abxnomore (Member # 18936) on :
It's never only one problem with Lyme, especially when it's chronic.
What you are experiencing is quite normal. You certainly can herx again. Some people just have perpetual herxes.
Mino has a very good penetration rate. But you are on mono therapy and I don't see that you are on a cyst buster?
Your doctor cannot make predictions that you will be well in two months. That's impossible and if you have been sick as long as you have been I wish you the best but don't think it will happen.
As far as your other symptoms it sounds like you could have an adrenal issue going on. If he is
not savvy about alternative modalities, I would find an alternative doctor to work with along
with your LLMD. Neuro Science Labs is one of the best ones to test adrenal function. https://www.neurorelief.com/ But you need a knowledgeable doctor to know how to treat the results.
Thyroid function definitely needs to be addressed and you should see an Endo but I have my doubts about mainstream Endos. Many of us have para thyroid issues.
Issues such as candida and heavy metal toxicity should be checked out,as well.
You could also have hypoglycemia all of which can produce anxiety, as well as being on mino and hitting Lyme hard. Anxiety is a big issue with Lyme and co infections.
Are you taking any supplements? B vitamins are essential to protect your nerves but there are many other essential supplements you should be on.
Have you been tested for co infections? When you have a illness such as this your entire body is
thrown out of whack and it takes a lot of time and detective work to bring the body back into homeostasis. While treating some of the very treatments can work against you.
A lot of lymies have parathyroid problems??? I found an Endo and she's a D.O. so hopefully that will be better than an M.D.
I asked my doctor about a recent thyroid test that showed I was hypo and he said the lyme was so bad, we need to focus on that right now. He said that lyme can "skew" the thyroid and adrenals so we need to go after lyme before he wanted to try to treat any of that.
I guess there are two schools of thought on that as far as treating the thyroid when the lyme is bad versus not treating it and waiting for lyme to get better? All I know is right now, I can't tolerate thyroid or adrenal treatment.
I agree, there is definitely an issue going on with my thyroid and adrenals.
It's starting to concern me that my lyme doctor, who is one of the best recommended in this forum community, doesn't know that lyme can cause parathyroid problems. That's weird to me...
I don't understand why he doesn't know this. Unless he just didn't share that info with me. He just made it sound like it might be a totally separate problem.
I'm definitely herxing from Mino...I skipped a couple pills and then started again and it's definitely a herx. I can feel the drug working so deeply which is good.
As far as the timeline, I'm deciding to relax and give myself more time to kill this crap. I don't understand his fast expectations with me at all...especially after fighting lyme for so long.
Yep, I've been tested for co-infections and thank goodness, I don't have them. I used to have babesiosis but that left after the first several years of treatment.
What's a cyst buster??
When you said..."while treating some of the very treatments can work against you" did you mean while we're slamming lyme with the mino, my thyroid and adrenals could go even more out of whack? If so, that's very interesting.
It makes sense... I've gotten to the point with this Mino that I can't tolerate any b-vitamins...not even half a pill. I tried yesterday and it made my anxiety awful!!!! I definitely need to see that Endo.