I 'flipped' last night - lyme rage I guess - this hasn't been this bad for a long time - I noticed there was a 'full-moon' - what I 'flipped' about was not anything major!!! I am on abx. and so possibly herx. related as I have been feeling horrible for the last five days - spent Sunday in bed - mostly crying - felt very fatigued but could not sleep.
Just need to share this with other 'Lymies' - I am probably looking for reassurance/understanding - something!
Ah, Gorbs, sending you a long-distance hug. Everyone melts down at one time or another, and you're entitled. Your doctor might be able to suggest some approaches that will help you rest and sleep -- your body needs the 'down time' to restore itself just as your mind does.
You are likely right that you are herxing ... if so, it should be over in a few days. If it lasts longer than that, then it might be something else your doctor could deal with.
I have recently started on thyroid medication, tho it's not clear whether low thyroid started before Lyme or during Lyme ... I have read that Lyme can induce low thyroid function, and I was probably tending that way already. If your dr has not tested your thyroid levels, perhaps he would be willing to do so. I have been sleeping so well since I started on thyroid meds, and still fine tuning it. I had resisted taking them a while back, because I didn't think they would help, but I was wrong!
Gorbs, itching is low-level pain, meaning that your nerves are being irritated by something. It could be a reaction to the meds, or something else. Do check it out with your doc. Benedryl might stop the itching, I don't know, but don't taking something to mask the symptoms if instead the cause needs to be addressed, you know?
.... and if your doc isn't taking care of your soul and not just your body, then do think about a new doc. You deserve better than that. Trust me on this one. -(hug!)-
Hello JC. - I have just spoken to my LLMD. concerning the 'itching all over' - he has told me to stop the doxycycline for one week then restart - if the itching doesn't subside during the week off abx. I have to speak to him again.
He said that lots of people stop 'doxy.' for a week or so, for various reasons, one being if they are going on holiday - I guess because of the 'photosensitivity'.
I have a slight acid reflux feeling in my throat - this may also subside, as I had this [worse] when I last took doxy.
Well, if there is room for one more on the crazy train, I also got into a domestic spat that night, a very rate occurrence in my house, and furthermore, I started it. So I'll blame the moon/bugs for that one! (Does that mean I don't need to give a proper apology?)
As for itching, I get not all over itchy (as one might associate with an allergic reaction), but I will get random intense itching in weird places that lasts a few minutes. For me, this itching is "below the skin," that is, I have no real impulse to scratch, it's more like a weird sensory/neuro sensation. I've had this happen on several meds, including plaquenil, bactrim, factive, and tindimax.
I imagine (and I can have a wild imagination) that the meds are blasting/busting up the bacteria, causing there odd strong, isolated, and brief intense feelings of itch-like weirdness. Again, just my imagination, but I guess what I'm getting at is the weird itching I get feels like the abx are working. In fact, the weird itching can be a "warning" that a Herx is coming on in my case. But again, it's not all over, and not a normal "scratch me" kind of itch, if that makes any sense.
I often need to take medication breaks, and fully support the idea. In '09, early in my treatment, I was working part time and could let myself Herx like crazy. I wouldn't stop my meds, even when I was Herxing, because I felt a great impetus to treat hard and get over the hump of my disease. I figured Herxing was inevitable, so I let it happen. But over time, I started to get better, and while I would still Herx, I started to question if it was really a good thing to put my body in that state. Anyone who Herxes knows it can be an awful feeling. In me, I know my inflammation is generally high, and when I Herx it goes even higher. Even though I've made tons of improvement, a bad Herx can land me near back to square 1, although (thankfully) only temporarily.
Now that I'm improved and back to work full time (and I mean full full time, 60+ hrs/week), I just can't see how it is can be "good" to Herx so badly, as it strains my body so much. Therefore, if I feel a bad Herx coming on, I immediately pause abx.
It seems to be working, at least ok. I'm well enough now that I bounce back a lot faster from a bad day. It is scary that I can still Herx so badly that it can cause me to be very sick (bedridden, unable to think, painful to move, all the "usual suspects" of symptoms can return...), but it is reassuring that I can recover from that in a day or two, while it used to take a month or so, or more.
I've decided that at this stage, it doesn't make sense for me to Herx so badly that I'm bed ridden. I mean, on my good days, I can do so much and feel fairly well, so why push treatment to the point that I lose my ability to work and be productive? So I'm using a "low and slow" approach to hopefully finish this off. My LLMD seems to think this can work for me, so we'll see.
Doxy is tough on the stomach, so that could be the reflux feeling. I am not on doxy (never took it, but was on mino, a similar abx, for 1.5 years). However, I often get that reflux feeling, in me I tend to have a constant low-grade post-nasal drip (bit of a runny nose, in other words) and that seems to make my throat feel yucky.
I never used to drink tea, but now I make it in my office several times a day! Seems to help, if only in a psychologically comforting way, on the bad days when I'm gutting things out over here. I really really like one I found called "AM detox," it contains some antioxidants and milk thistle, which is supposed to be good for liver support and clearing out Herx symptoms. Sometimes I do green tea if I really need a pick-me-up, but usually I stick to caffeine free herbals during the day (though I confess to drinking about 6 cups of coffee a day first thing in the morning, not sure how else I'd get out of the house early enough!)
Your ramblings don't sound crazy to me! - they were very interesting, the itching I have been experiencing isn't exactly 'normal' it is more under the skin - the scarey thing about it is it is even in my eyeballs! - I am wondering if it is a allergic reaction as it has taken nearly a month to surface - thought it might have reared its head sooner if it were an allergy. I was in bed on Sunday - absolutely 'flattened' by a steam roller or something?
All my painful areas were extra painful, fatigue, depression/crying spells [started then stopped abrubptly] - I had some 'forgotten' pain too - stabbing pain in upper back/neck.
I have felt I have been 'herxing' - I wonder if my LLMD just does things in a seemingly simplistic way so as not to make me more anxious - for instance today he just said 'stop the doxy. for a week -, if the itching continues you will need to talk to me again - he never mentions 'herxing' as such, only that the abx. can make me feel worse. [He has trained at ILADS and comes highly reccommended].
How 'odd' that you had a 'full moon' episode too!! If I had been someone watching me that night I would have thought 'that is one crazy lady' - I will tell you what though the adrenalin that was flowing made me forget all about my painful legs ha! ha! [they felt worse once I had calmed down!]
I admit to needing too much coffee in the morning - oh well! there are a lot worse things.
I try to stick to tea later in the day. I bought some Green Tea with cranberry - it is disgusting. I do have a few drops of milk thistle in water on a daily basis.
It is quite reassuring to hear that you 'break' from abx. when the going gets tough - I was dispondent about having to stop them again, now I have a little 'glimmer' back.
I'm new here and have been living a nightmare for the past 6 months. I've recently had a hysterectomy along with thyroid crashing and finding out I have a not serious anyeurism in my atria as well as mitral valve prolapse. the recovery from the hysterectomy is brutal and I am exhausted. the hysterectomy has caused sudden onset menopause which is giving me serious cardiac symptoms. The problem is I have a sickly 5 year old beautiful adopted Korean boy who has just been diagnosed with lyme. He has a heart of gold and suffers from extreme food allergies and chronic sinusitis. How will I get him through the heximer reaction when he is already so ill. He gets bloody noses at the full moon. will these get worse as I start lyme treatment. He's had them twice at school already this week and I am not able to conserve the energy I need to recover and care for him. He was prescribed zithromax today for 3 weeks. I'm trying to find one that doesn't have food coloring in it which he can't tolerate. will he have a flare up of yeast? I was overwhelmed before this lyme diagnosis and I think his treatment will put us both over the edge. How bad will he get during the zithromax? any input or advice would be greatly appreciated. should I get myself checked too? (I was bitten by a tick last summer, but my son never was to my knowledge)
I'm not medically trained, but first off I'd be asking my doc to put me on (at least) short term hormone replacement therapy so I could adjust to the hormone drop. There may be medical reasons that it's not advisable for you, but it's worth asking.
You ability to cope could (would) also be affected by having Lyme yourself, if you do. I'd get tested. Feeling utterly overwhelmed and frantic and anxious is one of the side effects of Lyme. I think my family and I had Lyme for several years at a low level, never saw a tick, but then I got suddenly very ill with what turned out to be Lyme and a coinfection, which led to diagnosis of the rest of the family. Lyme is sneaky.
Was your son tested for coinfections as well as for Lyme? What treatment has been prescribed for him? Are his Lyme doc and pediatricians on the same page? There is a split in the medical community about how to treat Lyme and for how long, and bridging that gap takes some effort sometimes.
Herxing is not fun, but for me it was no worse than the illness itself. I too was afraid of Herxing and put off my treatment for some time, thinking that if I was so sick already, how would I cope with the med-induced Herx? Turned out not to be a problem: Herxing was a bit worse from time to time, but no worse than being sick all the time.
But I agree with your concern about your son's other medical issues. If you could give us some more data, some of us might have some ideas to bounce off your docs.
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