First post, here's some real quick background info: I've had a daily headache for 5+ years, since my last year of college... plenty of other symptoms too including brain fog, fatigue, severe hypoglycemia, leg pain, visual issues moreso recently with floaters and whatnot... I don't really have joint symptoms...
I've been gluten free (as well as dairy free, soy free, etc.) for over a year now as well as adhering to a candida diet off and on and strictly since the start of this year... I'm currently taking a probiotic, CoQ10, a multi-vitamin, and DHEA daily though what I've taken has varied over the past year and a half...
avoiding a number of foods and being on a mostly meats and veggies diet has helped me a lot with fatigue and energy levels... I've been able to exercise/lift and play ball over the past few months as a result, which of course helps in itself with all this... I'm still very hypoglycemic however, still have daily headaches, and my neuro symptoms haven't resolved either...
alright, now for my question... I was diagnosed with lyme a month ago by an LLMD (tested positive on the IGM Western Blot by both Igenex and CDC criteria)... I started taking minocycline last weekend (on Saturday), felt fine the first day and then started feeling off the second night.. that night and the next day I felt like I had very little balance and that gravity was pulling me down 100X as much as normal... if I lean even slightly in a direction, it feels like I'm being pulled in that direction... I stopped the mino (on the advice of my LLMD) and still felt the same symptoms (albeit less severe) the next 6 days...
although my symptoms hadn't quite gone away by this Saturday, I was feeling okay to start it again (at 1x a day instead of 2x a day this time) and have had the symptoms fluctuating in intensity over the past 3 days... at times like right now, it feels like somebody is pushing down on my body... I've had some other symptoms too, itching at times, increased # of BM, out of it at times, but my main concern is the general body symptom above...
just wanted to check to see opinions on whether this is a herx or other rxn to the medication itself... I've come from a background the past year and a half of avoiding a number of foods, so my initial reaction is to question if something is a food rxn (ie. the corn starch or artificial color in the med, gluten cross contamination, etc.)... I really don't think it's a food rxn, which leaves the 2 possibilites being a rxn to the minocycline itself or a herx type rxn from stirring up the lyme and whatnot...
any opinions or similar experiences? I plan to keep taking the mino the next few days and see how things go, hoping that things don't intensify even more as I'll likely choose to stop it again if that happens... I'm keeping in contact with my LLMD while taking this, just wanted opinions from others who have gone through this... thanks
Charlie
Posted by bettyg (Member # 6147) on :
welcome charlie!
good job on your 1st post and breaking things up into paragraphs for us neuro lymies who can not read solid long blocks of text!
i'll send you my PM, private message, of 57 pages newbie links, advise, symptoms, igenex tests, HERXING links, disability, etc.
i've never taken mino; been on biaxin and doxycycline pulsed:
3 days on 1; 2 days off; then start 3 days of other abx, 2 days off; then start 1st abx again.
KEEP A LOG OF YOUR SYMPTOMS! i didn't; wished i had now to see my progress and lack of it.
in what i'm sending you, after the long list of symptoms is a chart link!
glad you're keeping in contact with your LLMD and that you found one early; they are hard to get into for those taking ONE per week, etc.
when i send you my PM w/newbie links, etc. please reply back with your llmd name, city/state. i want to check my 2 lists to see if they are on them!
at this time of am, you will NOT get many responders; most are days & early evening; perhaps 8-15 come/go after midnight, iowa time!
you could also use the SEARCH feature found at top under new post.
type in minocycline MEDICAL TOPIC LINE any date leave membership no. blank, click send.
it will bring up most current; read them or subject lines for help too. good luck.
KNOWLEDGE IS POWER, NOW START SKIMMING WHAT I'M SENDING YOU OK! lots in there about what you are inquiring about including gluten intolerance links, etc.
Posted by notkrazybrian (Member # 10621) on :
betty u dont sleep either? Posted by Beverly (Member # 1271) on :
Hi Charlie,
Welcome to LymeNet.
I don't know if you are having a reation or a herx. I'm so glad you called your LLMD and are keeping in close contact with him.
When I was on Minocin, I herxed hard, I felt bad most of the time, had terrible dizziness, and many other symptoms. It was a very hard abx (antiboitic) for me to take.
As was suggested above, It is a good idea to keep a journal, it really does help you and your doctor figure out if and when you are herxing.
I wish I could be more helpful. Keep us posted and let us know how your feeling.
Posted by Geneal (Member # 10375) on :
I had vertigo on minocycline.
Not just dizziness, but full blown vertigo.
I have two small children.
Although it was entertaining for my children to see Mommy crawling around on the floor
(still bumping into things), it was not amusing to this mother.
After 3 days of this.....I had to call my LLMD (started on a Friday, called Monday).
We both agreed this was not the drug for me.
I don't have the luxury of possibly riding things out.
With two young children, I have to be able to function.
I could not on minocycline.
I know a great deal of people here on this forum had dizziness, which did subside
Following a couple of weeks of mino.
I wish I could take it.
Good luck.
Hugs,
Geneal
Posted by CaliforniaLyme (Member # 7136) on :
Sounds like it could be Herxing!!!!
Make sure you get evaluated for Babesiosis or Bartonella because those symptoms sound like they could be that as well!@!!!! I had major loss of balance when herxing at times!!! And chronic headaches are often Babs- Best wishes, Sarah
Posted by Charlienj (Member # 12017) on :
thanks for the replies...
I think it is just a herx, and I seem to be slowly adjusting to it... still have the symptoms in varying intensity throughout the day but it was a little more manageable today, and at the very least, today was no worse than the past few days or last week for that matter... I plan to stay on the mino and see how things go over the next couple weeks...
good to know some others felt dizziness which subsided...
and I was tested through a different lab for co-infections at the same time I got my Igenex test done... came back negative for co-infections though I know the test results may not be positive even if there is an infection and it can largely be a clinical diagnosis... either way, not worrying about that at the moment, and I'm sure I'll discuss this with my LLMD at some point depending upon how my symptoms are resolving with the lyme treatment
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