One herx after the other

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tonyaraven
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Date Joined May 2017
Total Posts : 398
   Posted 1/4/2018 9:23 PM (GMT -6)   
So I was finally starting to feel better after 6 horrific days and I guess maybe I celebrated too soon! Yesterday afternoon I felt almost back to my normal and this morning too! I couldn't stop smiling because I was so happy the herx or flare was over! Then the switch happened again and now I feel shaky, my neck hurts, upper back, head too (especially in the back) anxiety, light headed, dizzy and depressed!! Now I can't figure out what is making me herx! I took a break from my treatment for about 3 days, then started the augmentin, malarone and artemisinin yesterday. I need a break desperately for more then a day! Normally I have a little stretch where I feel ok between herxes or flares and then I at least have the energy to somewhat deal with feeling so bad. I don't want to live this way! If I didn't have kids I sometimes think I could just run my car into a tree! My llmd has been away all week so other then this site I feel lost!

ArtAngel
Regular Member


Date Joined Mar 2016
Total Posts : 325
   Posted 1/4/2018 10:18 PM (GMT -6)   
Yeah herxes and flares they are hard.
Hang in there.
You are making progress in spite of the fact the cure is harder than the disease.
You will be fine just take it a day at a time. It's not going to be like this forever. The herxes are a sign you are beating the bugs down.

ArtAngel
Regular Member


Date Joined Mar 2016
Total Posts : 325
   Posted 1/4/2018 10:25 PM (GMT -6)   
It was a full moon on Tuesday I mark the full moon days on my calender and count them in advance as low energy days. So there are no surprises there if I feel like doing nothing at all then I blame it on the full moon. If I feel worse and I always do - its the full moon.
I know without a doubt a day or two later I will be feeling back to my 'normal'. Usually a down turn in energy has be analysing whether I have missed a step somewhere or if things are going downhill in spite of my efforts. These days I dont have to do that because I know the full moon will always leave me feeling worse and it passes.

acarined
Regular Member


Date Joined Jul 2015
Total Posts : 231
   Posted 1/4/2018 10:32 PM (GMT -6)   
I would guess babesia is the herx, it hits me harder than Bart or Lyme, particularly with the dizziness and fatigue.

tonyaraven
Regular Member


Date Joined May 2017
Total Posts : 398
   Posted 1/5/2018 12:28 AM (GMT -6)   
Thanks to both of you! It's so amazing how quickly I can switch from ok to horrible! It's like I have a switch on me that goes off whenever it wants! I'm so tired of this!

ArtAngel
Regular Member


Date Joined Mar 2016
Total Posts : 325
   Posted 1/5/2018 12:31 AM (GMT -6)   
It is perfectly understandable it is a roller coaster ride.

PeteZa
Veteran Member


Date Joined Jul 2015
Total Posts : 9729
   Posted 1/5/2018 12:22 PM (GMT -6)   
tonyaraven said...
Thanks to both of you! It's so amazing how quickly I can switch from ok to horrible! It's like I have a switch on me that goes off whenever it wants! I'm so tired of this!


This is so very typical of lyme. I often called lyme the bi-polar bacteria. Up one minute and down the next. It is all part of it and it is freaky.

It is also the part that makes people think we aren't really sick. They see us on the good days or hours and on the bad times we stay in the house.

Traveler
Elite Member


Date Joined May 2007
Total Posts : 36310
   Posted 1/5/2018 1:35 PM (GMT -6)   
If you are herxing that much, and that often, it's not good for your body. You need to increase your detoxing and/or lower your doses so you aren't herxing so much all the time - this is an indication that your body is on a teetering point and you don't want to push it into a serious herx that may land you in a hospital.

I hope your LLMD sees this, but even if they don't, it doesn't mean it doesn't happen. Please do be careful.
Herb only treatment for Lyme & Bart ended 12/11 - no active symptoms for 2 yrs -Herb only treatment for Babesia ended 12/12
www.healingwell.com/community/default.aspx?f=30&m=2977364
Had Lyme, Bart, Babs, RMSF, Ehrlichia, Myco, Anaplasmosis, EBV
New set of infections 8/2014 - still treating.
Come visit me: dogwoodtraditionals.freeforums.net/

tonyaraven
Regular Member


Date Joined May 2017
Total Posts : 398
   Posted 1/5/2018 7:53 PM (GMT -6)   
I stopped my treatment again, I've been having the worst possible headaches, they move around lots of pressure and down my spine as well. I've upped my detox, drinking loads of water, taking neuro anti tox, pinella/ burbur, yucca but nothing gives me relief! I took 2 sleeve today and it doesn't touch the pain. I feel so fuzzy headed too and just not ok.

ArtAngel
Regular Member


Date Joined Mar 2016
Total Posts : 325
   Posted 1/6/2018 12:18 AM (GMT -6)   
You are doing the right thing.
Talk to your Doctor as soon as you can, most Doctors have some idea of the side effects the products they are recommending have.
Most of us hit a few hurdles on the way. Thats why we are on the forum for support and help working things out. Lyme is complicated.

goshawk
Forum Moderator


Date Joined Sep 2016
Total Posts : 2302
   Posted 1/6/2018 6:33 AM (GMT -6)   
Traveler is right,you need to get back to a stable place.

Review all things that happened or changed in the last month with your llmd.

Get as much rest as possible and detox.

I would continue to build your immune system up with supplements and good food sources.

Green Vibrance is good to add to shakes or smoothies.

tonyaraven
Regular Member


Date Joined May 2017
Total Posts : 398
   Posted 1/6/2018 9:57 AM (GMT -6)   
So I saw my llmd yesterday but I was his last patient and he was running late so it wasn't until 5pm and I think he was really tired, so hopefully he has me on the right path. He wants me to completely stop my treatment and just focus on detoxing. Then we'll add doxy in a day or 2 since I did fine on that in the beginning. He seems to think I have viruses that are reactivated like Epstein Barr or herpes (I've never had a cold sore or any here lesion). He wants to add valtrex, but I don't know I'm up for that so we are going to stick to herbs for awhile. I hope that is the right thing to do. I was doing so well for such a long stretch on malarone, augmentin and azithromycin, until the last 2 weeks that have been so incredibly awful! I'm supposed to get a tb test done for this part time job at a senior center that I really can't lose and I keep putting it off...I'm terribly scared! I know it's not supposed to make one sick or anything but I am already a mess i can't take much more!

Traveler
Elite Member


Date Joined May 2007
Total Posts : 36310
   Posted 1/6/2018 11:50 AM (GMT -6)   
Not to knock your LLMD, but if you are expected to restart and maintain treatments after just a day or two of detoxing only, that would be one heck of a detox!!! The body doesn't detox that fast, especially when it's got an overload of toxins to begin with - I would really encourage you to talk to your doctor and push them to allow at least 5 - 7 days of a detox break.

I've seen too many Lyme patients crash and burn because their LLMD pushed them too fast through the protocol - slower really is better!
Herb only treatment for Lyme & Bart ended 12/11 - no active symptoms for 2 yrs -Herb only treatment for Babesia ended 12/12
www.healingwell.com/community/default.aspx?f=30&m=2977364
Had Lyme, Bart, Babs, RMSF, Ehrlichia, Myco, Anaplasmosis, EBV
New set of infections 8/2014 - still treating.
Come visit me: dogwoodtraditionals.freeforums.net/

tonyaraven
Regular Member


Date Joined May 2017
Total Posts : 398
   Posted 1/6/2018 12:09 PM (GMT -6)   
Thanks Traveler. Yes I think I will only start back on the doxy when my symptoms settle, if I choose to restart it at all, my llmd would support me if I just do herbs. I just don't know what is going on, my whole body is achy but the nerve pain down my spine and in my head is so bad and so scary I can't help but wonder what is going on with me! I've been doing treatment for a year and a half and felt fairly stable other then a few flares/herxes that would last a day or 2 but this is not ending and it feels like I'm being attacked by something! Can you think of any blood tests or anything I should ask my llmd to do? He's very open to suggestions and if I ask him I want to do a certain test he always agrees if it thinks it's not a waste of money or my time. How I wish there was a test that was completely accurate that would tell us exactly what the problem is and how to fix it!! I'd like to be the one to invent that machine!!!! I noticed you did only herbs, that is kind of the path I'd like to take now since I don't know how many more months I want to take antibiotics. I feel really lost and really scared! Thanks so much for all your input and help! Thanks to all of you that have given me feedback and encouragement, I so badly need it right now since I feel like I'm hanging on by a very thin string!!

goshawk
Forum Moderator


Date Joined Sep 2016
Total Posts : 2302
   Posted 1/6/2018 1:27 PM (GMT -6)   
Hang in there, I know its difficult and scary to say the least.

I had a bad period this past July after believing I was just about in remission, it has taken time to get back on the right track but it is possible.

Don't give up hope and tell your self "Yes, I am going to heal, I will make it through all of this"

Studies have shown that people who tell themselves positive things when they are ill, do better and have more success in healing.

Take care, Jo

Girlie
Forum Moderator


Date Joined May 2014
Total Posts : 33963
   Posted 1/6/2018 1:36 PM (GMT -6)   
Tonya - how long have you been treating Babesia with the malarone?

(you mentioned a 'long stretch')


It does sound like Babesia herxing to me. Pressure in my head is what I have...and it really ramped up when I went on the Mepron.
And i have nerve pain - upper back area.

I would take a longer break than a couple of days.
Moderator, Lyme Forum
Symp started April/2013; Buhner's Lyme May 15-July24/14; Igenex pos. July 3/14
Doxy: July 4-Aug.24/14;Zithro July26-Aug24/14; Amox + Proben. Aug. 29/14;
added biaxin Sept. 26/14
Disc. amox,added Ceftin Nov. 20th.;
Disc. biaxin added Buhner bart herbs Dec/14;Jan/15 pulsing Tinda (w/ Ceftin);
Abx/herb break Apr-July/15; July-mino; Aug. added Rif;
Nov./15 mino - to biaxi

Rinzler
Regular Member


Date Joined Jan 2018
Total Posts : 24
   Posted 1/6/2018 2:15 PM (GMT -6)   
Hey Guys - Brand new here and am dying to write my introduction and post it as a newbie but just haven't made the time yet.

I have been checking in and tonyaraven's post just hit home. I wont go into detail on my story yet but I feel so the same as you, have doubts everyday about what it is I'm dealing with here. I joined this forum for just this type of support and everybodys answers just felt like a breathe of fresh air. I haven't had any real breaks for 4 months now and I'm tired. I just keep fighting everyday I wake up. And although most of my friends and family have been no real support at all I am thnkful for the handful of people who have been.
Just wanted to chime in with my 2 cents and say , your not alone tonyaraven. I am too on a very thin string. Sending positive thoughts!!

I look forward to being part of this forum and getting help with questions I so desperately need the answers to. And maybe helping someone else at the same time. If that's even possible.
Trying to stay Positive!

goshawk
Forum Moderator


Date Joined Sep 2016
Total Posts : 2302
   Posted 1/6/2018 4:59 PM (GMT -6)   
Hi and welcome to our forum Rinzler,

Glad you have found us, I am sorry that you are dealing with Lyme and co though.

Thanks for reaching out to tonyaraven, that was very thoughtful of you.

This forum is great for showing support for others while we struggle with symptoms and treatments of these infections.

If you haven't already we encourage all new members to read Our New To Lyme thread.

Here is a link: /www.healingwell.com/community/default.aspx?f=30&m=1606610


It has important and helpful information

Take care and looking forward to seeing more posts from you in the future, Jo

Post Edited (goshawk) : 1/6/2018 3:07:24 PM (GMT-7)


Purrrsiankitty
Veteran Member


Date Joined Dec 2016
Total Posts : 1780
   Posted 1/6/2018 5:01 PM (GMT -6)   
Hang in there Rinzler...

We are all in the same boat and getting through this one day at a time.

Be sure to check out the New to Lyme thread.
Dx May 2015 Quest pos Elisa/neg WB. Doxy only. Restest Igenix lyme pos, neg CDC, 18 +, **23-25 IND, *30 +, **31+, **34 IND, **41+, **83-93++. Retest12/16 Igen 41+, 83-93+ whole blood-plasmid pos. Retest Lyme/co's. Neg co's. Suspected Bart. 7/15 start 16 mo of doxy, azith, ceftin. Finished 09/16. Cowden start 12/16 and stop April 2017 to deal with yeast & leaky gut.Restart Buhner for BBB.

tonyaraven
Regular Member


Date Joined May 2017
Total Posts : 398
   Posted 1/6/2018 7:27 PM (GMT -6)   
Rinzler- welcome to the site, it has helped me so, so much knowing I'm not alone in all of this! It's a terribly lonely disease that a lot of people (including me) can't understand, so being able to share with so many wonderful people can help enormously. I'm terribly sorry you have symptoms like mine, although I guess they are a lot more common then we think! If I learn anything new about what I'm going through I will let you know.

Girlie- I've been on malarone since May, although I started with only a quarter of a tablet. I think it's been about 3-4 months that I've been at 3 tablets a day along with augmentin, crypto plus and azithromycin. I did add artemisinin solo in about a month ago, very slowly, only at 250mg a day and off on the weekends. Then I did the diflucan for candida about 2 weeks ago but only for 3 days since it didn't make me feel good at all. I wonder if all this added up and I've just been having a massive babesia herx, I just wish it would end!!

Goshawk and all of the other wonderful Lymies that posted...thank-you! Your encouragement and support is keeping me from crashing! I would truly be lost without this site!

WalkingbyFaith
Veteran Member


Date Joined Aug 2017
Total Posts : 2041
   Posted 1/6/2018 9:06 PM (GMT -6)   
tonyaraven said...
So I saw my llmd yesterday but I was his last patient and he was running late so it wasn't until 5pm and I think he was really tired, so hopefully he has me on the right path. He wants me to completely stop my treatment and just focus on detoxing. Then we'll add doxy in a day or 2 since I did fine on that in the beginning. He seems to think I have viruses that are reactivated like Epstein Barr or herpes (I've never had a cold sore or any here lesion). He wants to add valtrex, but I don't know I'm up for that so we are going to stick to herbs for awhile. I hope that is the right thing to do. I was doing so well for such a long stretch on malarone, augmentin and azithromycin, until the last 2 weeks that have been so incredibly awful! I'm supposed to get a tb test done for this part time job at a senior center that I really can't lose and I keep putting it off...I'm terribly scared! I know it's not supposed to make one sick or anything but I am already a mess i can't take much more!


Tonyaraven,

I took Valtrex in April when I had shingles. I don't recall it causing any herxes. Don't be afraid to try it. It may do you some good. L-lysine supplement can also help with viruses.

tonyaraven
Regular Member


Date Joined May 2017
Total Posts : 398
   Posted 1/7/2018 9:44 AM (GMT -6)   
Thanks walkingbyfaith. I guess I have a hard time when my llmd just assumes viruses are popping up, it seems so often it's just trial and error on what we should treat! It would be more reassuring if there was a way to know for sure what needs to be treated!

WalkingbyFaith
Veteran Member


Date Joined Aug 2017
Total Posts : 2041
   Posted 1/7/2018 10:06 AM (GMT -6)   
tonyaraven said...
Thanks walkingbyfaith. I guess I have a hard time when my llmd just assumes viruses are popping up, it seems so often it's just trial and error on what we should treat! It would be more reassuring if there was a way to know for sure what needs to be treated!


I totally know what you mean about doctors making assumptions.

There is a way to know about viruses and other bacteria like mycoplasma and chlamydia pneumonia. My tests were done through Labcorp and were covered by insurance. It tests for antibodies. If your doctor hasn't done any of those tests, you can ask him to. With us, the antibodies are often different. Instead of having positive IGM antibodies that would indicate current infection, we may have unusually high IGG antibodies which may indicate chronic infections. If your doctor is Lyme literate, he should have some idea how to interpret those lab results and explain them to you.

Traveler
Elite Member


Date Joined May 2007
Total Posts : 36310
   Posted 1/7/2018 10:16 AM (GMT -6)   
Well, there are tests for the viruses that you could do to find out exactly which viruses you are dealing with. The 2 most common viruses that can really throw a monkey wrench into our healing are usually EBV (Epstein-Barr Virus) and CMV (Cytomegalovirus) - and, as WalkingbyFaith said, Lysine will treat both of them, and it can be taken long term. I've been taking lysine for EBV (extremely high titers for me) for most of the last 8 years to keep it under control some while I do battle with other infections.

Back to your other issue though, with the meds and such - you said: " took a break from my treatment for about 3 days, then started the augmentin, malarone and artemisinin yesterday. "

Did you start all three on the same day? If so, that is a big part of the problem. That's a whole lot of killing going on suddenly!!! I would be very surprised if anyone with anything other than very minor symptoms could do that without having a serious herx, if not a life threatening herx - especially if you just went back on full doses that day as well.

The body has a limit on how many toxins it can handle in the bloodstream - and because of the other things we deal with that compromise our body's functions, it can vary widely between people, even if they have the same infections. We must keep our toxins levels below our "limits" so that we can withstand smallish variances in the number of toxins we have in our bloodstream at any given time. This is why I say that detoxing is at least as important as treatments - because if you have too many toxins in your body, there is no treatment that we can use.

No matter what you start or use, consider that nearly everything will make you herx, so start off on very low doses and titrate the dose up very slowly. It's a real pain to do it this way, but that's how I've managed to get back on my feet again. And always, always make time to do the detoxing your body requires.
Herb only treatment for Lyme & Bart ended 12/11 - no active symptoms for 2 yrs -Herb only treatment for Babesia ended 12/12
www.healingwell.com/community/default.aspx?f=30&m=2977364
Had Lyme, Bart, Babs, RMSF, Ehrlichia, Myco, Anaplasmosis, EBV
New set of infections 8/2014 - still treating.
Come visit me: dogwoodtraditionals.freeforums.net/

Traveler
Elite Member


Date Joined May 2007
Total Posts : 36310
   Posted 1/7/2018 10:20 AM (GMT -6)   
Rinzler said...
Hey Guys - Brand new here and am dying to write my introduction and post it as a newbie but just haven't made the time yet.

I have been checking in and tonyaraven's post just hit home. I wont go into detail on my story yet but I feel so the same as you, have doubts everyday about what it is I'm dealing with here. I joined this forum for just this type of support and everybodys answers just felt like a breathe of fresh air. I haven't had any real breaks for 4 months now and I'm tired. I just keep fighting everyday I wake up. And although most of my friends and family have been no real support at all I am thnkful for the handful of people who have been.
Just wanted to chime in with my 2 cents and say , your not alone tonyaraven. I am too on a very thin string. Sending positive thoughts!!

I look forward to being part of this forum and getting help with questions I so desperately need the answers to. And maybe helping someone else at the same time. If that's even possible.



Hi Rinzler! Welcome to the community!! I'm glad you found us here.

Do be sure to post your story so we can have an understanding of what you have been doing and what all may be going on for you.

I'm sure you will find a ton of support here!!
Herb only treatment for Lyme & Bart ended 12/11 - no active symptoms for 2 yrs -Herb only treatment for Babesia ended 12/12
www.healingwell.com/community/default.aspx?f=30&m=2977364
Had Lyme, Bart, Babs, RMSF, Ehrlichia, Myco, Anaplasmosis, EBV
New set of infections 8/2014 - still treating.
Come visit me: dogwoodtraditionals.freeforums.net/
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