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Symptoms up and down throughout the day

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Lyme Disease
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Posted 3/6/2018 1:42 AM (GMT 0)
Sorry for so many posts lately, it's been a really horrible 4 days! My question is does anyone experience herxing where they feel fine for a short while, then suddenly have horrible pain, or other symptoms? I keep getting waves of horrible neck pain, head and spine as well and horrible episodes of really bad anxiety or panic, then I'll (thankfully) have a short period where I feel ok and I think the herx is ending. All day today it's been like that, one minute I think I should go to the ER and then an hour later it's gone only to come back shortly after like I keep getting hit by one truck after the next!! I really thought last night that things were lightening up but today has been hell! Please share if you can relate and if this sounds like a herx. I had increased my malarone last week and I'm also doing something called PEMF which I've heard can cause die off. I just got over a horrible cold and cough from last weekend and this is just putting me over the edge, I need to feel ok so I can rebuild my strength!
Posted 3/6/2018 1:49 AM (GMT 0)
tonyaraven,

My symptoms go up and down like that, too, but not as severe as what you've had. I had a lot of muscle and bone pain right before supper tonight, but right now it feels somewhat better.
Posted 3/6/2018 2:20 AM (GMT 0)
Thanks WalkingbyFaith. I've never had it this bad before, it's really scary! The panic episodes are so intense and I'm getting so many of them, the pain is so miserable too but the panic is so, so hard to handle. Does anyone else have herxes like this? It's so scary when something new happens, I thought I could predict somewhat how my herxing is.
Posted 3/6/2018 2:24 AM (GMT 0)
I have not had herxes as severe as the ones you've had. I couldn't handle that. That's why I do herbs instead of antibiotics.
Posted 3/6/2018 2:36 AM (GMT 0)
tonyaraven - Mepron gives me anxiety...and it just comes on all of a sudden for no rhyme or reason.
I feel it welling up inside me...and it's accompanied with sweating.

The Malarone has mepron so it may be that.


Did you have this before you were on the Malarone?


I was on Mepron for 7-8- months in 2017 and after I stopped - my sweats and anxiety were almost non-existent...so I'm hoping the same will happen after I've done my 'time' on it again.
Posted 3/6/2018 2:40 AM (GMT 0)
Oh Girlie, i have not experienced panic like this before! I am so, so scared! It's seems to last for an hour or two and then it will lighten up and come back an hour later with vengeance! I don't know what to do! I stopped all my meds over the weekend, I would think things should get better instead of worse!
Posted 3/6/2018 2:48 AM (GMT 0)
Are you taking binders to help clear out your system?

pasque flower, motherwort, coral root, Chinese skullcap, vervain, Gou-teng, tryptophan - herbs and supplements that Buhner says can help with anxiety/hysteria/extreme fear.
Posted 3/6/2018 2:59 AM (GMT 0)

tonyaraven said...
Oh Girlie, i have not experienced panic like this before! I am so, so scared! It's seems to last for an hour or two and then it will lighten up and come back an hour later with vengeance! I don't know what to do! I stopped all my meds over the weekend, I would think things should get better instead of worse!

It can take longer to clear it out...

Did you know that Atovaquone has a long half life of 2-3 days (DAYS..not HOURS!!!)

So if you took it every day for even a week...well it's in you for a long time.

I would think it's in your blood stream for a few weeks...(I haven't done the math) - think about it - Day one you take it...then on Day 2 when you take it - the full amount of day 1 is still there...and on Day 3 you have at least half of Day 1 plus all of Day2 and now Day 3 in you....bulding up...over the week.

So you stop...and it takes a while for it to leave your system...
Posted 3/6/2018 5:32 AM (GMT 0)
Girlie-yes, I guess that makes sense! Just so badly want to feel better, I used to think headaches were the absolute worst but now I'm thinking the panic might just top it!

WalkingbyFaith- I am taking binders and a number of supplements, some of which you mentioned and they usually calm my system down nicely but these panic attacks are something new all together! I used to only have them at night which is also awful but to have hours and hours during the day is enough to send in over the edge!

I have a question for both of you, do you think Lyme effects more women then men? I can't believe how many people I've met that know someone who has it and they all seem to be women! Just wonder if hormones really play a big part in it.
Posted 3/6/2018 4:48 PM (GMT 0)

tonyaraven said...

I have a question for both of you, do you think Lyme effects more women then men? I can't believe how many people I've met that know someone who has it and they all seem to be women! Just wonder if hormones really play a big part in it.

I would not be surprised if women are more affected. You would think more men would be sick since they are usually more exposed to ticks from working and playing outdoors. It's possible their symptoms may be milder and they don't realize something's wrong.

I definitely believe women are more affected by bartonella. There are many animal studies of how bartonella affects the reproductive system of infected animals. I know I've heard somewhere that women's immune systems are more complex. The more complexity the more that can go wrong. Women by far are more likely to have autoimmune illness like lupus, RA, Sjogren's, and syndromes like fibromyalgia and CFS. All those things may just be undiagnosed infections.
Posted 3/7/2018 8:44 PM (GMT 0)
tonyaraven,

I've had the waves of panic since I started my Lyme journey in April 2017.

My husband recalls that I was literally in constant panic for about 6 months. It was very bad. I asked to be sent to a "facility", and put in a padded room...but my family wouldn't have it and my doctor said that a facility would be of no use to me, that treatment and time was the best option for me.

Now, as treatment has progressed, the panic is less and less frequent.

I still have days when the panic comes and goes on the hour, but it seems to be decreasing overall.

I'm sorry you are experiencing this!
Posted 3/7/2018 10:06 PM (GMT 0)

tonyaraven said...
Girlie-yes, I guess that makes sense! Just so badly want to feel better, I used to think headaches were the absolute worst but now I'm thinking the panic might just top it!

WalkingbyFaith- I am taking binders and a number of supplements, some of which you mentioned and they usually calm my system down nicely but these panic attacks are something new all together! I used to only have them at night which is also awful but to have hours and hours during the day is enough to send in over the edge!

I have a question for both of you, do you think Lyme effects more women then men? I can't believe how many people I've met that know someone who has it and they all seem to be women! Just wonder if hormones really play a big part in it.

In our case, my husband had some issues in our marriage...but we never attributed it to lyme disease...it's not discussed in my location. Lyme disease wasn't on the radar.
For me, my symptoms were so severe and so many of them...multi-systemic - that something was seriously wrong with me...so I kept looking and never gave up...14 months it took to get my diagnosis.

We since tested my husband (although he says he had a bullseye rash during our marriage) and he was positive via the Band 31 epitope test confirmation.

Is it hormones that caused mine to come on fast and furious? IDK

My anxiety is slowly fading away, too. I still do wake up with it in the morning....and it is so disturbing to feel that way. I hope it gets better soon for you tonya.
Posted 3/7/2018 10:48 PM (GMT 0)

tonyaraven said...
Oh Girlie, i have not experienced panic like this before! I am so, so scared! It's seems to last for an hour or two and then it will lighten up and come back an hour later with vengeance! I don't know what to do! I stopped all my meds over the weekend, I would think things should get better instead of worse!

I’m in the same boat. Starting Malarone and having waves of severe depression, anxiety, and panic. It’s gotten so bad, I haven’t been this psycho since going off antidepressants 2 years ago.

I’m so thankful for the calm in between, no matter how short-lived. I use that time to apologize to my husband and tell him what’s going on and to wait it out.

I’m doing everything I can to calm the anxiety- just added NAC and CBD oil and took 2-3 days off the Malarone. So far tolerable, but I’m going to have to increase doses and possibly go back to Ativan for the panic.
Posted 3/8/2018 1:30 AM (GMT 0)
I can't express how much I appreciate all your input! Today has been absolute hell! The pain in my neck, head and back have been so awful and I keep having episodes of dizziness like I'm going to pass out or such severe panick that I feel almost out of control with my body! The crazy thing is I changed our insurance plan to the lowest plan since the premium went up quite a bit and they arent covering my llmd, so it changed just this month and this is the first time in a very long time I think I need to go to the ER. So now instead of 250 it will cost me 2500!! I don't know if they will be of any help either but I'm so concerned that something happened to my neck when I had it washed at the salon. My llmd thinks it's Bartonella but I just don't know! I've been crying so much I can barely open my eyes!
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