posted
First of all, I don't even know what "too bad" is or will be. I am worried I won't know how far is okay to let it go.
My neuro is bad, a week of doxy last month was a pretty scary experience. I'm starting again tomorrow, see doc in August.
Last herxing was very hard, including pressure in my head and behind my eyes. I'm thinking maybe I should get my eyes looked at if it gets real bad again? I don't know.
I don't read many positive experiences coming out ER's. I'm ready for a new PCP with the way I was treated in trying to get meds and a dx for my lyme.
Perhaps it would be best to try an urgent care? How much should I tell them?
Posts: 474 | From US | Registered: May 2014
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Are you taking JUST doxycycline? Sounds like it. I'm sorry to tell you that's not the best way on two fronts: two Rx are best to prevent lyme from going into the cyst form.
And liver support is required to help manage a herx.
Now, it sounds like you don't have a LLMD.
You are correct, the ER is NOT the place to find any help for a herx. We have to do most of the on our own, with support in place first and all through.
No, Urgent Care is also not the place to help.
No, an eye doctor will not help (unless there is a separate issue there).
And, most likely, a new PCP won't help either. Most are not at all lyme literate.
There is nothing they CAN do, within their jobs. It's so out of their awareness. It's up to us. And it's manageable with liver support.
If a herx is too back, cut back on dose. No one should push a herx to the max.
Drinking WATER & taking MAGNESIUM tablets should help the pressure in head and eyes, though. Liver support, too.
TAKE DOXY WITH FOOD, in the middle of a substantial meal.
DO NOT LIE DOWN for (look up what the instructions say) 30 minutes? or an hour?
You can sit in a recliner or lean back, but not far. Just support your head and tip back a little bit. If you lie back, esophagus can be damaged by "backwash" so to speak.
Sip a delicious herbal tea or clear water, perhaps to keep that throat channel moistened.
Friends, family can help with practical matters but, sadly, there is no support in the medical community apart from those who are true LLMDs and LL NDs.
For those without that luxury, we just have to learn & do what we can.
LIVER & KIDNEY SUPPORT & and several HERXHEIMER support links, too.
MAGNESIUM LINKS here, too. Of vital help to avoid or minimize a herx. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Doxycycline (or any antibiotic) alone can cause lyme to go into cyst form, and actually cause chronic lyme. If you can, I hope you can find a LLMD for combination treatment.
Flagyl / tinidazole / tindamax - that sort of thing, an antiprotozoal agent addresses cystic form and, when in protocol with an antibiotic can work together.
If you can't find a doctor who can help with that . . . there are some supplements that may be of help. GSE (grapefruit seed extract) may be one but I can't just tell you to take that. It can upset stomach and it's best to get guidance.
Others here may be of some help in that regard with various ideas so don't despair. There are always other ways to address our needs.
As to why this matter is so important, antibiotics cannot treat the cystic form:
Topic: replication within cystic forms of lyme -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- BE SURE TO AVOID SUN, even "bounced sun" on your skin when on doxycycline. Even in the car, you may want to get some white cotton "treatment" gloves at the pharmacy (for those who do oil treatments on their hands).
Wear these in the car on sunny days. Wear long sleeves, too, when in the sun (or the car). They can be loose for air, of course. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
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posted
- If you don't have liver support in place, I'd wait until you do to begin again. You can gather a few things in a day or two. You may already have some on hand, I hope.
I'd be sure to take something like milk thistle for a day or two prior. Magnesium, too. Just separate by a couple hours from Rx.
You'll need to drink a good amount of water throughout the day and evening. Room temperature, slightly cool okay straight from tap (or water filter) but really warm water is best, never iced cold. Iced or chilled water is way too hard on the liver and stomach and can shock us.
Green Tea is very nice until mid afternoon. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- You mention neuro symptoms & eyes. If you have CFL, compact fluorescent lights, turn them off and keep them off.
See if you can get CREE LED - WARM 2700 - lightbulbs or use the regular older kind, incandescents. But the LED do not work well in a dimmer. Try to avoid dimmer lamps as they can flicker or hum.
Fluorescent lights can be very rough on those with neuro lyme. Avoid them as much and as often as you can. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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posted
I'm seeing LLMD in August. I think anything I take is going to make me herx, olive leaf did so terribly when I took it.
I've been using liver support for a while, longer than I've known about the lyme. Milk thistle, NAC, vit C, among others. Chelated mag has been my friend for a long time. I also dry brush and rebound sporadically throughout the day. Need to add lemon water, I just hate that it is so hard on tooth enamel. I also consume avocadoes (glutathione) and raw garlic every day.
I will have tinidazole as well (probably here in a couple days), but I thought it might be too much to start both tinidazole and doxy at the same time. I was going to get the initial herx from doxy out of the way before adding the tinidazole. Is this a flawed way of looking at it?
Thank you for the replies and links.
Posts: 474 | From US | Registered: May 2014
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LisaK
Frequent Contributor (1K+ posts)
Member # 41384
posted
my experience has been - it depends on your threshold for pain, and also on your tolerance for sheep drs.
I went to ER once for gastroparesis because I was screaming in pain and couldn't move.
I learned that I got pain relief I needed, but has to deal with illiterate drs. and pay a bill.
I have a pretty high tollerence for pain, and have felt many different symptoms since treatment so I tend to hold off until I feel like I am going to die. then I would go to hospital.
or I would collapse on sofa and if I pass out maybe my family would take me to ER?
I really don't want to see any dr unless I really have to but that is just me and my opinion.
so I would go to hospital ER if I :
could not breathe could not move, sit , stand, breathe, etc from pain, etc.
was passed out
unable to swallow for longer than I can take
having sharp pains with fever
crazy heartbeats lasting more than an hour
stuff like that.
-------------------- Be thankful in all things- even difficult times and sickness and trials - because there is something GOOD to be seen Posts: 3558 | From Eastern USA | Registered: Jul 2013
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posted
Just thinking out loud here, based on the spore forming behavior of Bb it would make more sense that doctors start "cystbusters" or cyst-inhibitors before abx.
So why don't they? Is this a treatment idea that needs to evolve? Does it create a significant difference in the amount of die-off?
Posts: 474 | From US | Registered: May 2014
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posted
gz .. very good plan to "ramp up" .. in the beginning your bacterial load is very high. Going slowly is a good plan. Some do not agree with me, but it worked for me and I've been off meds for 9+ yrs.
Tinidazole can knock you for a loop.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96223 | From Texas | Registered: Feb 2001
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LisaK
Frequent Contributor (1K+ posts)
Member # 41384
posted
and anything I would mention about lyme or any other tick disease I would tell ER dr that another dr told me my symptom is from lyme.
like when the er dr told me you can't get gastropaesis from lyme, I told him, "I didn't think so either until the gastro dr told me I could, so I went home and looked it up and there it was"
he ran out of the room and didn't mention it again. maybe it planted a seed in that young uneducated dr.
other than that I wouldn't mention too much. I never tell them I have or had anxiety or depression. then they think it's all in your head
-------------------- Be thankful in all things- even difficult times and sickness and trials - because there is something GOOD to be seen Posts: 3558 | From Eastern USA | Registered: Jul 2013
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posted
I already get the crazy heartbeats when I lay down, that got much worse with tx last time. Air hunger is pretty bad already too along with chest pain. Sometimes with that it's hard to differentiate between the feeling of not being able to breathe and actually not being able to breathe.
Going into this it already astounds me the things we have to get through to get better from this.
Posts: 474 | From US | Registered: May 2014
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posted
@LisaK What a great way to "inform" a doctor in the ER.
Last time I took 200 mg BID, but sometimes only dosed once a day to give myself a break from how bad I was getting. I know that ramping up abx isn't the best tactic if we're trying to kill them off, but it's probably what I should do. I need to be as functional as possible.
I hate to do it, but maybe I'll start with half the dosage for a few days before increasing it.
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