Topic: doxy problems -so upset how will I ever get well?
lymebytes
Frequent Contributor (1K+ posts)
Member # 11830
posted
Yesterday I posted my first day w/Doxy was horrible because of the burning acid reflux.
That was only the beginning.
As the day went on a weird depressive feeling fell over me and a strange chest pain and neck pain. I didn't think much of it, I am full of pain head to toe.
I was cautious and started w/low doses.
The worst was yet to come. I went to bed and I had strange vivid nightmares and thoughts, almost like hallucinations, all night this went on and kept me awake, finally I got up, off balance and so sleepy and felt like I was having a mental melt down - I swore off this drug in the middle of night.
I know this wasn't herxing, I know my herxing symptoms very well after nearly 2 years. I believe it was side effects.
I am so bummed. I wanted this drug to work for me more than I can say.
I was very settled in on my last combo for a very long time and wondered during the night if my body was having a sort of withdrawal from not having the old abx, I don't know.
I did add Bicillin last summer, that worked well but only made it 7 weeks due herxing (but I was sleeping and no nightmares!) My LLMD pulled me off,because herx would not break. Told me to try it again later. (CD57 jumped 90 points in those 7 weeks to 140)
How am I ever suppose to get well? My choices are so limited due to allergies and side effects of abx.
The only meds I can tolerate are the penicillins and the macrolides - that is about it, it seems. I have co-infections, ehrilichia and bart (LLMD thinks Bart may be gone, I am not so sure).
I read an old thread here this morning, where nightmares were mentioned.
Does anyone know if Mino can cause this same problem? The only abx I haven't tried that have been highly suggested for me are, Rifampin, Mino, Flagyl.
I can't tell you my disappointment, just so upset this didn't work out
About ready to give this up, I wonder if I could live without abx and my pain would eventually subside.
TerryK
Frequent Contributor (5K+ posts)
Member # 8552
posted
If your symptoms are side effects of doxy they may subside after a few weeks.
Doxy hit bart to some degree for me because the long red bart streaks showed up after I started doxy. Indicates it was doing something to the bart. I think it probably depends on your strain as to whether doxy affects bart.
I had terrible neck pain and overall pain with doxy when I first started which I beleive is caused by inflammation due to die off. Do you have new cracking, snapping or popping in your body?
Herx symptoms can be different depending on the abx and the numbers/types of bugs you are hitting.
I hope you get it figured out soon.
Terry
Posts: 6286 | From Oregon | Registered: Jan 2006
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treepatrol
Honored Contributor (10K+ posts)
Member # 4117
posted
Also drink tons of water with it at least two large glasses of water. And dont lie down if possible stand if you cant do that stay seated sitting upright at least 1 hour. also agree with other poster it does lessen after a couple weeks the pressure thing in chest is so nasty I had it on doxy and minocin untill i figured out to stay upright at least 1 hr.Dont forget 2 glasses water and upright 1 hr. The rest will pass
-------------------- Do unto others as you would have them do unto you. Remember Iam not a Doctor Just someone struggling like you with Tick Borne Diseases.
posted
I'm sorry to hear you are having a really difficult time. I, too, am allergic to many abx which scares me sometimes.
I've been on Doxy 4 months now. I have the craziest dreams!! Had some scary ones at the beginning, now I just have very vivid, active dreams. Like movies! I remember many of them (also unusual for me).
So my feeling is this is a side effect of Doxy. You might be like me and after a week or two it will get better (less scary), but you may continue to have some vivid stuff.
Can you take something like an Ativan at night to help relax you? Works well for me when I need one once in a while.
Like someone else mentioned, I also got a lot of snap-crackle-pop the first month on Doxy. That calmed down after maybe the 2nd month.
Oh -how much Doxy are you taking? I take 100 twice a day. I tried 200 twice a day after 3 months and I had a HORRIBLE reaction immediately - sick as a dog and an extreme headache and neck pain like someone stuck a nail in the back of my head. Too strong for me. My doctor didn't want me to do it so I've stuck with 200/day and doing well.
If you want to try the Doxy again, perhaps start at 100/day and build up slowly.
~webmeg
Posts: 257 | From Connecticut | Registered: Oct 2007
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lymebytes
Frequent Contributor (1K+ posts)
Member # 11830
posted
I am so tired, it is hard to think straight. I knew to stay upright and did. I didn't eat enough with it, that I know.
I appreciate your posts and advice right now, just so bummed about this.
Yes, my neck by the end of the day was killing me, but no sounds snapping etc, thank God!
I only started w/100mg's. I like you Meg probably would never make it past 200, plus I am on Biaxin w/it. Biaxin I have had long term success with, so I know it wasn't that.
Maybe in a day or 2 I will try again...my LLMD said I can just add small amounts to my current meds biaxin/amoxi - but I thought it best to drop the amoxi, everything reads not to take the two together. Maybe if I did just small amounts, 50mg's to start and work my way up I could eliminate amoxi along the way.
I could handle anything, I have been through everything with this disease...but those hallucinating nightmares were eerie...too much! Oh and chest pain... yes Treepatrol.
How does anyone get use to this drug? I want to so badly...but now I am scared spitless, literally, my mouth was even dry, I was downing water in the middle of the night.
Terry it does hit certian strains of Bart, I was hoping that for me in case mine isn't gone and the ehrilichia, not to mention it hits so many other bacteria we may not even know we have.
Anyone think just adding small amounts while I stay on biaxin/amoxi is ok? My LLMD said it is, but I have read amoxi/tetras don't mix.
Yes, a Xanax was absolutely necessary and I finally fell asleep.
HELP - I need this medication, but I would need to clear my calender for a month to adjust I think! No Md appointments, no errands. I'd just sleep all day probably.
Clarissa
Frequent Contributor (1K+ posts)
Member # 4715
posted
I've had those horrific nightmares while treating Bart but I'm on totally different abx than you: zithro & rifampin
I also had these wretched dreams when I was treated for Lyme.
I think it's a form of herxing. I think there was a whole post on intense dreams a few weeks back...you should do a search and maybe you'll find that it's not the doxy but the herx?
djf2005
Frequent Contributor (1K+ posts)
Member # 11449
posted
be cautious with "reactions" & herxing.
i am not a medical dr but i do have common sense, as do the rest of us
my sense tells me that a lot of the so called "reactions" that a patient experiences are in fact die off or herx reactions to any number of different kinds of bacteria.
now that said, i am not saying you did not have a "bad" reaction. BUT, if your reaction is not making your condition worse (and this may not be your case) then i'd have to ask myself if its actually working (although it seems so horrible) or if it means its targeting some kind of bacteria or disease.
for example, my wife thinks shes allergic to biaxin. every time she takes it, she breaks out in a rash. thats it, just a rash. it resolves her symptoms, and then she feels better. now i know your sx are much more severe and i am not again trying to say you did not "react" to your abx. but, i know, ME, that in my heart, when my wife takes biaxin, and has her "reaction" its really just a sign of something taking place. could be good, could be bad.
when the "reactions" go into the hard of hard to breathe areas and things such as that, is it killing babesia or something similar to it or is it the med?
just my thoughts. i hope you find a abx that works well for you.
i am praying for your relief.
have you tried drugs like cipro, levaquin, or rifmapin?
cheers, feel better.
derek
-------------------- "Experience is not what happens to you; it is what you do with what happens to you."
posted
I was just diagnosed with Lyme on 11/19/07 and began treatment with Doxy @ 100mg/BID. On 12/20 I met with a more Lyme literate Dr. for a second opinion on the treatment, and he advised that I raise the doxy up to 200mg/BID since by then I was tolerating it well.
With that said, right after I took the second dose on 11/19/07, I nearly passed out. Sleep was similar to what you have described. When I called my primary care physician and mentioned what happened, he had me come in for and EKG which turned out normal. So I kept going with it and things got MUCH better.
Those first several days on doxy were very rough. However I can tell you, for me, it was worth pushing through the discomfort and snags along the way. I have come a long way since 11/19.
I know I am a new student of this disease, but doesn't doxy pass the blood brain barrier better than many other abtibiotics? I'm all for that;)
Either way, best wishes to you as you navigate this rough patch...
Brandie
-------------------- "You play the hand you're dealt. I think the game's worthwhile."
C. S. Lewis Posts: 36 | From Illinois | Registered: Jan 2008
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CherylSue
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Member # 13077
posted
It's been a month since I've been on the doxy. I've been taking 200mg BID for the past 3 1/2 weeks. It really cleared up my brainfog.
The last few days I've been feeling worse and the burning skin is coming back. I was doing better and now I feel I'm backsliding.
I did add 1 Buluoke the last 3 days.
Am I herxing? Relapsing?
Did anyone have a reaction on the doxy after a month?
Thanks, CherylSue
Posts: 1954 | From Illinois | Registered: Aug 2007
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posted
I knew to stay upright and did. I didn't eat enough with it, that I know
It's extremely important to eat with Doxy as it will cause vomiting and stomach distress if you don't....been there with that stuff.
I would use food to wash it down and water also, it could be catching in your throat and that may be a part of your problem with it.
I agree with Terry on this one, this could be working on the Bart and I would give it a good chance before thinking you are allergic to it. There's no sense in limiting what abx will work for you unless you absolutely cannot tolerate it.
groovy2
Frequent Contributor (1K+ posts)
Member # 6304
posted
Hi All
I agree Keep taking the Doxy - It is effective - cheap -
Threw the last 2 years I have taken close to 5000 doxi caps-- It Helped me alot -
One thing tho --I think your doses should be spread threw the day -
Doxi needs to be kept at a constant level in your body for best effect
Taking 2 doxi caps at one time would make me barf big time -- for sure --
I took my doxi with No food or just a few soda crackers--
The doxi label says -
Take with Plenty of water -
Eat crackers or a piece of bread - or small meal -- (they mean Very small meal)
Having Crazy dreams is common - especially when first starting a new meds -
-- Jay --
Posts: 2999 | From Austin tx USA | Registered: Oct 2004
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lymebytes
Frequent Contributor (1K+ posts)
Member # 11830
posted
Cheryl Sue, You could be hitting the growth cycle of LD and experiencing new symptoms/herxing. Lyme generally has a 4 week cycle, when new symtpoms and old ones can appear. Likley in a week or so things will settle down again, if not contact your LLMD.
lymebytes
Frequent Contributor (1K+ posts)
Member # 11830
posted
I likely could handle the drug if I can get enough food in me to control the acid reflux, this is seriously painful, felt like a hole was being burned in my stomach.
But still the worst part was no sleep, nightmares, weird hallucination-type. If this disappears in a couple of weeks, I guess I can deal, but that has been the worst part and I have NEVER experienced that with any other abx I've been on (4 others)this was entirely scary.
But I know it was likely killing something...
Wonder if DORYX would be easier all the way around????????????
cantgiveupyet
Frequent Contributor (1K+ posts)
Member # 8165
posted
your not on adoxa(i think thats the spelling) are you? When i started treatment, i had horrible problems with doxy, bloating, burning, chest pressure....i would sleep for 15 min and wake up.
The bloating was so bad, i couldnt swallow food...so i had to stop it.
a few months ago I tried doxy again, generic, and i was fine on it. My germ load of course is down, but i think maybe it was the adoxa brand.
Doxy does come in capsules, im not sure how much easier they are though.
from what i remember i think doryx is easier on the stomach.
hang in there
-------------------- "Say it straight simple and with a smile."
"Thus the task is, not so much to see what no one has seen yet, But to think what nobody has thought yet, About what everybody sees."
-Schopenhauer
pos babs, bart, igenex WB igm/igg Posts: 3156 | From Lyme limbo | Registered: Oct 2005
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posted
Have you tried Doryx? I used 400 mgs doxy very successfully for 11 months, then started experiencing a bit more nausea, etc. A few weeks ago I switched to Doryx, and it seems to be more easily tolerated. Believe it is the same essential med.
Posts: 314 | From east coast | Registered: Oct 2007
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posted
I too just started doxy for lyme for the first 3 days I had no arthritis pain at all just muscle pain,about day 9 I woke up in the am and felt horrible. Every bone in my body hurt especially my ribs.So I backed off the doxy for 3 days as my doctor had said do not be a hero. when I felt better I restarted the doxy again,I got up to 3 capsules a day 300 mg total and had a major herx. Lots of water seems to help and also eating 3 or 4 smaller meals per day seems to help.Im only doing 2 capsules a day so far. maybe pulsing doxy a day or 2 at a time may also help, you wont lose ground killing off the bacteria as it is a slowww growing beast that takes several weeks to grow in a petrie dish. hope this helps
Posts: 294 | From sw chicago suburbs | Registered: Apr 2007
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Itsy_bitsyone
Unregistered
posted
Ah...Doxy.
My first abx for lyme.
I don't suggest Doxy without a few things...
Wear a hat and gloves and long sleeves. And carry zinc oxide. Sunscreen with not protect you.
A protase pump inhibitor. Prilosec/prevacid/nexium/protonix...whatever. The acid is crushing. CRUSHING. At least for me. Chest pain, pressure, esopgus spazms...awful side effects.
Make sure you take your acid inhibitor the moment you wake on the empty stomach. Wait a little while to eat and take your abx because the antiacid can inhibit the uptake of the abx.
Eat. Eat. Eat.
Take your probiotics. Eat your yogurt. Get some nystatin or diflucan or whatever. I never had yeast like I did on doxy, and nothing since has been nearly as bad for the yeast.
In the end, you decide whether or not you can hadle the side effects if you go on a very good acid inhibitor. I was on prolosec. I just started protonix. Its been a life saver.
Vivid dreams can happen on a wide variety of meds. Someone mentioined a light tranquilizer...go for it if they will give it to you. If you are already having wacky dreams, some people get that even more pronounced with stuff like ambein, so you may not want to go in that direction.
I gave up on doxy because my titer kept going up and my skin kept burning SO badly so quickly.
I went to tetracycline. Which worked real well except I puked every day. Again, bad acid that needs to be controlled with meds.
Tried a few of the mycins...bad bad bad reactions and side effects.
Eventually...tired of puking daily...tired of extreme GI issues with the mycins, I am on minocycline. It does supposedly cross the BBB better, and I know there is some light-headedness. And, acid, of course...which I am controlling with meds. It has side effects but I tollerate it better than the others.
CherylSue
Frequent Contributor (1K+ posts)
Member # 13077
posted
Thanks Lymebytes for the doxy info. I think I've heard of this, too, and was hoping this was the case. I was happy that the doxy was clearing my head, but thought I'd just get better and better. Now, I'm having burning skin problems again, more fatigue and flulike malaise. I hope the doxy is kicking butt!
Thanks for the encouragement. CherylSue
Posts: 1954 | From Illinois | Registered: Aug 2007
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Itsy_bitsyone
Unregistered
posted
Ooooh. I LOVE salt and Vinegar chips. Snyders of Berlin (a local company out here) makes a sea salt and malt vinegar chip that makes my saliva glands burn just smelling them. YUM!
Mino makes me carb starved too.
In fact, you don't know how many mcdonalds hashbrowns I can scarf down at one time on mino.
posted
I have always had problems with antibiotics tearing up my stomach even before Lyme. But I have taken probiotics consistently with the Doxy and I can't believe the difference it makes. Even if you don't have Lyme, probitics are good for you if you have any sort of gastro problems There certainly will not hurt you. Make sure you get a high quality one and take them before you take your abx.
Posts: 44 | From Oklahoma | Registered: Aug 2007
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CaliforniaLyme
Frequent Contributor (5K+ posts)
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posted
SOunds like Herxing to me!!! Except the acid reflux- that sounds like side effects! For me I ate oatmeal with it and it stopped that.
Doxy hits ALOT of microbes!!! MANY diseases!!!
-------------------- There is no wealth but life. -John Ruskin
All truth goes through 3 stages: first it is ridiculed: then it is violently opposed: finally it is accepted as self evident. - Schopenhauer Posts: 5639 | From Aptos CA USA | Registered: Apr 2005
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lymebytes
Frequent Contributor (1K+ posts)
Member # 11830
posted
Thanks everyone. Califlyme - yep, this is why I am taking Doxy so late in the game, it hits more bacteria than any other abx, gram neg and gram pos. But of all I have done, it is gonna be rough, anything that crosses the bbb is rough in my opinion.
I am going to try doryx though and see if it helps the stomach issue. The nightmares, I will have to keep something at bedside to take - I have found Advil/PM to work well. So that will be my first choice...second choice Xanax.
I really want to do this because of all the bacteria this combo can kill, I am taking it with biaxin and my LLMD says it is a "dynamite duo". One other member said this combo put her whole family into remission.
posted
Just to add more data from my own observations:
I have been on doxy for about 3 months, ramping up from 300mg/day to 400mg/day. The first five weeks or so were pretty awful. I thought i couldn't handle the drug. I felt that my symptoms were side effects rather than herxing: horrid acid reflux, nausea, and profound depression
Maybe it's because I changed my eating habits - so I always have breakfast before taking my pills, I always drink a lot of water and wait an hour before bed. And sometimes I eat a few crackers with the pills, but I haven't experienced the side effects in quite some time. I even forget I'm on the drug.
Whether or not I'm actually going to get better through continued use of doxy is another question.
-------------------- 09/29/07: bitten since 05/01: omnicef+biaxin+plaquenil 350 cats claw + knotwood thruout. Posts: 227 | From Northern CA (bitten in Illinois) | Registered: Jan 2008
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jamescase20
Unregistered
posted
I found I got SEVERE illnesses when I took ANY abx.. it turned out to be a herx effect..vomitng, runs...migraines, etc etc etc. Bactrim...20 seconds later...severe non stop runs. I am not kidding...I just kept taking the pills and a few weeks later justa bout all the effects where gone!! The buggies where causal effect...not the abx. In my case anyway. I think it was a bart herx...I never stopped herxing..still 2 mo later still pains banging everywhere all day every day but runs stop until I switch abx...then they start again..buggies are learning how to hide!@ omg.
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posted
Yes, doxycycline is hard on the gut. When I was taking 200mg 2/day along with cefuroxime axefil, I had to stick to a "complemenary food regimen"-- rice with carrots and broccoli and tons of garlic. I would eat some then take take the abx. Then I'd have a little yarrow tea; then after a while some yogurt. When I took 'celebrex' along with this combi, though. I had huge problems, as I've posted about before. ('celebrex' was the main culprit). DaveS
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Like movies! I remember many of them (also unusual for me).![[sleepy]](graemlins/sleepy.gif)
it is hard to think straight. I knew to stay upright and did. I didn't eat enough with it, that I know.![[Frown]](frown.gif)
![[dizzy]](graemlins/dizzy.gif)
I want to so badly...but now I am scared spitless, literally, my mouth was even dry, I was downing water in the middle of the night.
![[Smile]](smile.gif)
![[Razz]](tongue.gif)
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