doxy week 2--no herxing

[illinwithoutacause]

hello,

i restarted the doxycycline my LLMD prescribed after being fearful that i was having an allergic reaction, and although i feel a little weird after i take it, i seem to be tolerating it for the most part.  

it will be 2 weeks tomorrow since i resumed the medication, and i haven't seen any signs of a herx.  i did feel like my eyes were burning a little less for a few days, but they have started hurting again.  otherwise, things are status quo.  i still feel bad, not any worse than usual though.

i am not feeling terribly optimistic.  maybe i am barking up the wrong tree again.

:-(

[JackieCalifornia]

Hi -- welcome to medhelp.  (You might get more response to your question if you start a new post rather than tagging onto the bottom of this thread.)

To my understanding:

Band 39 -- this is specific to Lyme disease, meaning no other disease or condition causes a positive result on this band

Band 40 -- my list doesn't have a band 40

Band 41 -- this could be Lyme or could be other spirochetes and thus other infections

Band 66 -- this is common to all bacteria and not just Lyme

These tests are NOT terribly accurate and should be used by a knowledgeable MD to help interpret your history and symptoms.  I would, in your situation, get copies of all your recent Lyme-related tests and take them to a Lyme specialist for further work up.

[ewford]

I have been going to the Jaccuzzi/hottub for 1-2 hours daily and it has made a difference, believe it or not.  the 101 deg water artificially raises my body temp ( just like when you get a virus) and my head breaks out into a sweat.  Hot tubs are reccomended as a treatment just for that reason.  I can't tell you how many people that I have just started up a conversation at the hottub and they either have Lymes or have symptoms.  It is unbelieveable.  Start talking to friends and I bet you will be shocked at the number of sufferers in silence.

[zaria438]

New to this. Positive Elisa. Bands 39, 40, 41, and 66 positive. Can anyone help me interpret. Host of symptoms. Thanks so much. Cindy

[JackieCalifornia]

You made to the end of the week!!!  That's a serious accomplishment, given how you feel.

I hear you about too-hot baths.  A foot soak is good too, just whatever is warm enough to be comfortable.  Magnesium supps (whether in capsule form or through a bath/footbath) helped me a lot, and still do -- since I read in several places that Lyme bacteria use up magnesium, which doesn't show up as low on blood tests, because magnesium resides not in the blood (where it can be measured) but inside cells where it can do its job of carrying messages from cell to cell electronically, for telling muscle cells when to contract or relax .... and not enough magnesium means the communications system goes down, resulting in aches, twitches, cramps and even irregular heartbeat, besides feeling lousy.  It's also important in relaxation, like when babies get floppy after a warm bottle ... it's the full stomach, the warmth AND the magnesium in it, so I read.

I was warned by one unsympathetic doc not to take 'too much' magnesium, but another doc told me I would get diarrhea if I took too much, and if that happened, then back off.  It never happened, and I still take it every day.

A foot soak or full bath lets the magnesium be absorbed through the skin instead of through the digestive tract, but either way works.  I would make the water as warm as comfortable and it was nice since I ached so much.

Take care, have a restful weekend as best you can -- sending you good thoughts -- J.

[illinwithoutacause]

thank you for the empathy, jackie.

i didn't call the doc's office because things seem to have plateaued.  i think i can make it through the weekend okay at this point.  

hot baths don't really do me right, sadly enough, but i do take magnesium every night before bed which seems to help with my twitching and rls.  maybe i could just soak my feet in epsom salts and see what happens.

i'm having a little less pain in my arms, wrists and hands today, but my eyes are still really bugging me and i am super fizzy in the feet.  i am also experiencing rotating patches of numbness in my face, mostly around my mouth and chin.  both corners of my mouth were numb earlier and that lasted for a couple of hours.

i am glad it's the weekend, for sure.  

again, we'll see what happens...
hugs,
binx

[JackieCalifornia]

Hi Binx,

Sorry you're having such a rough time.  "Fizzing feet" is a perfect description.

Sounds like it could herxy, but it's hard to tell, since everyone is different.  Seeing as a weekend is coming, if you're concerned tomorrow or get worse, you might call your doc's office and report your symptoms and ask if they have any recommendations.  If they don't seem worried, then it may well be a Herx and on its way to being over.

Have you tried a nice Epsom salt bath?  Sometimes the warmth and the magesium can help a lot.  Take care, let us know how you do, you and the fizzy feet.  J.

[illinwithoutacause]

for what it's worth, i'm feeling like absolute garbage and have been for the past 3 days.  aching arms and hands, fizzing feet and my eyes feel like someone is inflating them inside my head and i could sleep until the cows come home.

if only my kid and work would let me do the latter.

i don't know, maybe i'm doing it all wrong.  maybe i don't really have lyme.  maybe i'll be lucky enough to be like wonko and see a steady state of improvement over the coming months.  

time will tell, i suppose.

[ksdmdmd]

I had no intention to invalidate anyone's experience, but I did have the intention to validate what I have proven and seen isn't true, and doesn't work for myself or others unless those others are suffering symptoms localised to one area of the body alone, which is very rare.

[JackieCalifornia]

Where to start.  

I would be careful about invalidating others' experiences -- no one really knows what anyone is going through except the person him/herself.

I don't think MDs do a very good job of preparing patients for the side effects of treatment, whether Herxheimer reactions or otherwise.

People who are as sick as many of us are are naturally fearful of a worsening of symptoms, since many of us are barely functioning on a day to day basis.

Lyme produces its own set of anxiety symptoms, and it's not because we are neurotic, it's because of actual effects of the infection.

Good for you that you haven't herxed.  I didn't much either.  But one thing Lyme+ teaches:  it's different for everyone.

So I'll stick up for those who are, as you label them, "lost in their worlds of 'false' [Herx] reactions".  What sounds false to you may be very real.

[ksdmdmd]

My experience with doxycycline is that it is more focused and that it relieves symptoms by reducing them either immediately or over time. For instance, I had pain every time I moved my eyes and took two, not one, 100mg pill and it went away and hasn't come back since, and it's been months.

Also I think nearly the entire US community of Lyme sufferers doesn't truly know the meaning of the word "Herxheimer reaction." From what I have experienced in dealing with these individuals, they think a "herx" reaction is something that happens in one part of their body and are desperately looking to get worse when the die-off reaction they're looking for is wherever their symptoms once were, except now they're going off all at once. In addition, after every such reaction from my experience, you practically don't feel any of your Lyme symptoms because there isn't much left to feel! So people continually "herxing" are doing it wrong. They're not "herxing," that's Lyme disease getting worse.

And to the original poster, these "herxes" haven't once occurred while I was on doxycycline and I was on it for months, and sometimes taking higher doses than recommended. That tells me that full-body die-off reaction isn't likely to occur. Instead, as I mentioned above, it only reduces and relieves some symptoms and that is because it is only so effective (strength, duration both long-term and short, selectivity/penetration into various organs).

I would also like to add that these people who are lost in their worlds of false "herx" reactions might want to consider how fast their nail growth is, how often they sneeze, how healthy their hair looks and what their body temperature is instead of relying on pseudo science and quacks.

[wonko]

If you know your doc's style, that may also help put things in perspective.  Does s/he use combination therapy?  Start out low and ramp up on dosages?  Does s/he adjust or change Rx's based on patient response?  

My doc does all of the above, taking an approach to start everyone "low and slow" on one abx, then add more and/or change dosages gradually.  I typically have phone consults every month or two so that adjustments can be made based on my response, or lack there of, to treatment.

I know the advice to "wait and see" is hardly original or comforting, but that's the best I can offer.  I don't recall how long it was before I was really confident in my dx, but it was not overnight.  And yes, since Herx's are often a worsening of symptoms, and Lyme flares on its own, it can be difficult to distinguish.  Even now, the only way I can really assess my situation is to look back and average over long blocks of time (6 months).  If I try to assess my health based on day to day snapshots, I can't distinguish my baseline from all of the "noise" caused by ups and downs in my symptoms.

(And yeah, I was also negative for Igenex co-infection testing.)

So I say definitely keep an open mind, but don't throw in the towel yet.  

[JackieCalifornia]

If it helps, Binx, here are some notes (below) that a nice person shared with me on Burrascano's recent comments on the meaning of low CD57.  It looks like you're right in the 'yes it's Lyme' group.  'Modestly low' is still low.  

I am always out of sorts when the bugs are stirring, but I don't realize why until I'm coming out of the funk.  I hope you're feeling better soon.  

==========
Lower counts seen in chronic Lyme
Only Lyme (not co-infections) makes CD-57 low

The CD-57 reading does not change *during* treatment … until Bb is controlled. Then it quickly changes.

Predicts a relapse if CD57 is low when antibiotics end.

The CD-57 test must be done by LabCorp’s method (using the “normal is >200” scale):

60 Lyme activity minimal
> 120 – relapse not likely
==========

[illinwithoutacause]

hi jackie & carrie,

i was tested for co-infections--results were negative.  another thing that worries me about this whole thing.  i had band 31+ and 41 ind (weakly positive) in IGG.  CD57 was modestly low at 56, and C4a was quite high at over 12000.  no slam dunk, unfortunately, in my case.

and, yes, carrie--those things always happen when you least want/expect them to, don't they.  ugh!  i'm sorry you're having a flare up right now, but like you say, maybe it's a good sign?!

hugs to you both,
binx

[carrie235]

Hi Binx
I totally understand your concern. I wish that I too would have an "obvious" herx because then I would know for sure that my meds are working. I keep having flares like I am right now. I guess they might be herxes but I am not entirelly

I say, bring on the herx!!!!  My lick, I'll herx on my daughtees grad day from college or my other daughters wedding day. I'm knocking on wood right now!    Excuse the typos. My iPhone has a mind of it's own.

[JackieCalifornia]

Don't worry!  We all get a little obsessive about Lyme, because it takes that kind of focus to overcome it.  It means you are focussed and serious, and that's good.

Herxes are soooo different for everyone.  

Were you tested for coinfections that come from the same ticks?

[illinwithoutacause]

thanks for the feedback, jackie.

i guess i'm just concerned since most of what i read indicated that herxing would show up when the antibiotics would start "killing off" the bugs which was within a few days of starting.  i can't help but worry that my lack of herx means that there aren't any bugs to kill.

but maybe i am letting my anxiety get the better of me, per usual.

gosh, i wish i could stop thinking so much.

hugs,
binx

[JackieCalifornia]

hang in there, binx.  when your eyes started burning again, that itself could be a herx.  my herxes tended to just be a worsening of existing symptoms, like more rain in a rainstorm, but not a hurricane in addition to the [Lyme] rainstorm.

Two weeks is just a beginning.  Lyme needs much longer treatment than most other infections.