lymeHerx001
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Member # 6215
posted
OK so I have been on BIAXIN for almost 2 years at full dose. It took me 6 months to work up to that.
Had a hell of a herx on this.
Before the biaxin he had me on DOXY for a month. NOTHING i felt nothing.
About a year ago I started Flagyl, not to much as far as herxing (I was expecting death from what I read here)
So about 2 months ago I started taking flagyl 5 days a week. I noticed it cleared up my bowels.
So now he said go back on doxy. I started on a friday and by tuesday I couldnt MOVE!!
I didnt know it would pack this punch.
I felt like someone took a branding iron and put it on the bone on the back of my neck. My skin was burning all over. Headache. Weird parinoid depression. I would start crying for no reason.
I would just lay in bed and not be able to sleep even. So I took some Benadryl,, that didnt even do to much.
SO I STOPPED with his permission. 2 days later the herx cleared and I felt nice. Yes I said it nice. My mood was nice, my skin didnt hurt, I felt light. My joints didnt hurt.
Im still AMAZED that after all this time I can still have different strains in me?
Why didnt the DOXY the first time do anything. I thought he was joking when he told me to go back on it.
But Im alsmost releived that it brings me to hell so I can get through this.
Im now gonna take the DOXY 2 days on and 2 days off 100 MG twice daily.
100 mg 3 times a day is what made me herx terrible. Posts: 2905 | From New England | Registered: Sep 2004
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lymeHerx001
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posted
My LLMD says that "were pelling back layers like an onion."
Must be a pretty big onion!
Posts: 2905 | From New England | Registered: Sep 2004
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posted
I just started doxy 2 weeks ago after 6 weeks of Rocephin. It's killing me.......it's as bad or worse than the lyme itself as it exacerbates all of my issues.
The Rocephin helped me so much but the doxy is making life so difficult now.
I wonder sometimes if the cure is worse than the cause and if it's worth it. Posts: 867 | From PA | Registered: Jan 2006
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cantgiveupyet
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posted
I had a horrid time on doxy....i was working then and i really have no clue how i did it. It brought all my symtoms out.
posted
I totally understand your frustration at the amount of resources being spent on "other" diseases but not lyme.
I don't begrudge the efforts being made for other diseases, but I am angry that this disease is trivialized and ignored when so many are suffering.
I have this sick fantasy of gathering up all of the lyme ticks I can and planting them on docs who misdiagnosed me, gov't health "administrators", newspeople and the top folks at the CDC.
I'll bet the funding and efforts would start immediately if these people were forced to "limp" in our shoes. Posts: 867 | From PA | Registered: Jan 2006
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5dana8
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posted
I burned out on taking doxy for 9 years and it finally stopped working
then I took one year off & many other different abx. Now when I have taken doxy again I herx again.
Sorry. I don't know why this is.
-------------------- 5dana8 Posts: 4432 | From some where over the rainbow | Registered: Sep 2005
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lymeHerx001
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posted
then of course if you do that you will still hate the people with the GENOTYPE that is resistant to the strains you got!!!!
I usre there are people who have had exposure to the same strain but they didnt get sick, or they have a symptom like (a bad back) once in a while \
My pain has been DAILY physical pain. And the mental feelings of being drugged mentally raped and all alone!
Then the herx clears and I feel like Ive gotten off a train. Aside from some residual effects.
I alomst dont looking forward to taking the Doxy tommarow. I guess Im gonna use up that ADVIL.
I wish there was something other then the ADVIL that I could take. THe advil really tears up my stomach.
Posts: 2905 | From New England | Registered: Sep 2004
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posted
I have the opposite results, and yes, I know everyone is different.
I was on Doxy first for 2 months, and little by little I felt the best I had felt in years.
Then switched to tetra, backslid.
Now I've been on IV Rocephin and 1500 mg Flagyl everyday, now starting my 10th week.
I got what I thought was the flu for a couple of days after 2 weeks of abx. Since that time I have felt no better, and now am feeling worse.
All symptoms coming back...terrible fatigue, still have facial numbness, stuttering, back ache, certain times of the day, especially after I wake up, my skin burns like I am on fire.
The last few days some of these sx are leaving, but the bottoms of my feet are killing me! Hurts to stand for any length of time.
Can someone tell me their opinion please, is this herxing, or just the Lyme. I knew I would get worse before I got better, but sometimes I feel I don't even have Lyme because I'm not feeling terribly sick like others, especially on the Flagyl.
Oh, I also have had diarrhea since treatment started, crying episodes, and terrible depression. My LLMD said the abx contributes to that.
Anyone?
Posts: 203 | From Jacksonville, FLorida | Registered: Oct 2005
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lymeHerx001
Frequent Contributor (1K+ posts)
Member # 6215
posted
THe flagyl openes up the cysts and prevents the bacteria from getting converted into cysts
Why did you switch to tetracycline?
Why didnt you stay with the doxy if its helping.
In my opinion the rocephrin might not be doing anything.
How did you feel after you started the IV?
The burning skin was a sign that I needed to get back on my anti-biotic.
THis happened every time I went off biaxin. Thats why I dont go more then a couple days without at least one dose.
The burning skin is the worst. Its like sunburn all over your body. And the foot pain is bad too.
One time I got really pissed of and figured that I was gonna excersise away the burning feet.
uhh Im a glutton for punshment.
My feet turned purple!!! Now I know better.
Posts: 2905 | From New England | Registered: Sep 2004
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cantgiveupyet
Frequent Contributor (1K+ posts)
Member # 8165
posted
my old symptoms are returning too and i wish there were more studies. In fact i wish i had more of a medical backround because i really would like to go into researching this horrid disease.
Tothepoorhouse- I have a similar dream....that and releasing them on Washington. But of course those lucky brats would get the bulls eye rash...and that would be that..
-------------------- "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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Jellybelly
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posted
I thought I was going to die on Doxy, only I didn't know it was a herx. It was my very first experience with ABX about 3 1/2 years ago. It took about 8 days of 200 mgs a day, then WHAM.
I ended up in the ER with a resting heart rate of 145, BP that wouldn't even register on a cuff, and weakness that literally made me crawl. When I spoke to my cardiologist who didn't know I was on ABX cuz I had just started, and I didn't know what was happening, told me to call an ambulance if I could not get a ride NOW.
Well that scared the pee out of me, as if I had anything to pee, cause I couldn't stop peeing either. In the ER my potassium was low and they were fascinated watching my BP drop even further when I stood up.
I tried Doxy one more time after that at 50 mgs. a day once I realized it was a herx about 2 weeks later. Felt terrible but not as bad. I was so cold. I had a very laege heating pad on me, with about 4 blankets in mid July. My feet swelled, and were red hot and painful. I haven't touched Doxy since.
I have been on Mino since at very tiny doses and it still can set me on my butt if I go to fast. I think I am up to about 10mgs. ewvery other day now......whoohoo. I think I would end up in just as bad of shape on Mino as I did on Doxy if I used full dose.
This still happens even now that I am in almost total remission of symptoms. So for me, no symptoms doesn't equal I have the upper hand on Lyme yet, and I am not sure why.
Posts: 1251 | From california | Registered: Apr 2005
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lymeHerx001
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posted
that last line really got me Jelly.
Maybee you have adapted? but you yourself said your not cured
Posts: 2905 | From New England | Registered: Sep 2004
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Jellybelly
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posted
Maybe adapted is right. My LLMD said something that I thought rather odd on my last appt. He will use ABX. but he is trying to adapt other alternative protocols and use them if he can. He used Rife on his daughter and self and wants me to see a Chinese healer who is working up a protocol for Lyme. This all happens in Santa Fe, NM. Very holistic and spiritual there.
Anyway, what he said was he believes that we need to be able to live peacefully with Lyme, cuz Lyme isn't going anywhere. Kind of like, you don't kill me, I won't kill you. He, as do I belive Lyme to be extremely smart. Sounds like a bunch of millarky to me, but maybe there is some truth to that.
Posts: 1251 | From california | Registered: Apr 2005
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lymeHerx001
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posted
hmm I tried doing that. Its very hard to live peacefully and not be able to breathe and walk or even think.
Im not being sarcastic either. I was anti-drugs especially anti-biotics for years before my diagnosis.
In fact I thought that I took to many anti-biotics when I first got sick for a sinus infection that I brought down my immune system and then I got FIBROMYALGIA>
uhh if I only knew, I would have seen some one.
But then again this was 92-93, they didnt have many Lyme Literate docs then. If they did, they would have wanted to see the rash!!!
I dont remember a rash like a bulls eye,. but I used to roll in the grass hours upon hours as a kid. So hmm,, maybee the connection?
Posts: 2905 | From New England | Registered: Sep 2004
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posted
if you feel/sense a pulse in your temples, this is not a herx, but rather increased intracranial pressure(blood pressure?)from the doxycycline.
Posts: 2708 | Registered: Feb 2005
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lymeHerx001
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posted
OHH MY GOD.
O took a doxy yesterday and herxed for 4 hours. THen I felt better.
So I take a 100mg doxy today, herxed for 30 minutes then I felt better.
I just took another one 2 hours ago. NO HERX and feeling better.
I know Im feeling better because my skin feels nice. Kinda numb I guess you would say. I have no way to describe it because I must have been in some pain 24/7 before.
It seems that I can also feel temperatures more. My skin also feels cool, but not cold.
Also my energy is better and my neuro symptoms are improved.
What is this guys, the honymoon?
Should I expect no more herxing from the doxy?
Posts: 2905 | From New England | Registered: Sep 2004
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Areneli
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Member # 6740
posted
Yesterday I switched from Tetra 1500 mg/day to Doxy 800 mg/day. Some slight nausea but not much herxing, yet.
[ 03. April 2006, 09:55 PM: Message edited by: Areneli ]
Posts: 1538 | From Planet Earth | Registered: Jan 2005
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lymeHerx001
Frequent Contributor (1K+ posts)
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posted
Are you doing well on it?
I still feel this doxy, tonight is the first time I am not in pain!!.
It seems like years. Im amazed.
I REPEAT I AM NOT JINXING MYSELF im getting better.
notic the reverse psychology?
Maybee the spirochete morphed into this doxy suseptible form?
The biaxin kicked a major reaction (herx) in the beginning. Then I went through rifampin (nothing) Plaquinil (too many side effects) Flagyl (seems good, no herx though) now DOXY again!
This time around I herxed and now am feeling better.
Actually now Im having some fasciculations
Posts: 2905 | From New England | Registered: Sep 2004
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lymeHerx001
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posted
Ok I just got off the phone with my Doctor,
I told him that the herxing stopped aside from some fatigue and pain after I take the doxy.
He said to take the DOXY 4 days a week 100mg twice a day.
I told him that I was affraid that I would not feel good on my days off the doxy and asked him if I should ramp it up.
-He said leave the worrying to him.
Imagine that.
Posts: 2905 | From New England | Registered: Sep 2004
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I started on Doxy 100 mg twice a day on 3/16 as an "Antibiotic Challenge" because all my lab work came out to be negative/normal except for two titers for Ehrlichia being borderline.
I went to see a LLMD to "rule out" Lyme because the condition I had (besides Fibromyalgia) caused similar symptoms and I was sure I didn't have Lyme.
Well, so many of the symptoms I had ever experienced seemed to have come back with a full force.
I was told this was the Herx.
My doctor's nurse practitioner told me that Ehrlichia could cause Herx and that it was very possible that I had Lyme as well.
Many of the Herx symptoms calmed down, but how long are they supposed to last?
I feel okay during the day although still feeling weak.
The worst time is at night. Is it normal?
The pain in my lower half of the body gets just so intense, but I can't take anything strong for pain.
The NP gave me a prescription for Arthrotec, NSAID, but it doesn't seem to help.
My stomach has been hurting all day today, probably due to Doxy and Arthrotec?
If indeed I have Lyme (and Ehrlichiosis), I believe my symptoms (not from Herx) are very mild.
I don't know how long I have had Lyme (if I have, i.e.), but the only time I had flu-like symptoms was almost 20 years ago and was in the middle of the summer, which I did think strange.
Could I have Lyme for 20 years without my immune system being suppressed?
Otherwise, I don't know how and when I got Lyme.
The NP said that I should continue on Doxy before Lyme and/or Ehrlichiosis gets worse to the point where my immune system does get affected.
Does it mean I might have gotten Lyme pretty recently?
If I have Lyme, it seems to be very mild.
Would it definitely get worse without treatment over time?
I am having a hard time with Herxing, and I don't like the fact that I am already on many madications and still need to take more medicine (for pain right now).
Would it still be worth continuing with the antibiotic?
I just didn't think I was "sick" before taking Doxy.
It's hard to tell what is causing which symptom in my case.
I have so many proven mechanical problems, including clumping of several nerve roots in lower back, degenerative diseases in back and neck, and cervical stenosis.
Particularly the clumping of nerve roots (Adhesive Arachnoiditis is what I have) is known to cause many of the symptoms I have, which I now know could be caused by Lyme as well.
Interestingly, fibromyalgia, which is often a misdiagnosis for Lyme, is considered secondary to having Adhesive Arachnoiditis as well as many of the so-called Chronic Pain conditions.
Basically, I am very confused.
Any word of wisdom would be appreciated!
shizuko
Posts: 110 | From Northern Virginia | Registered: Nov 2005
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lymeHerx001
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posted
Ok So I took the doxy for 5 days, then I talked to my LLMD and he said to take it 4 days on, 3 off.
Well I didnt take any wednesday night, or thursday (yesturday)
I felt allright yesterday morning, but today I feel awful. Like im on deaths door.
Lots of pain and weakness my feet killing me. And the dreaded AIR HUNGER!!!
Should I be on doxy every day? Should I pulse it?
I also take biaxin every day now for years.
I noticed that at night I get lots of gas 3 hours after I take the biaxin so I thought that was related and took a break and a diflucan to see if it will clean up.;
THe gas is terrible I cant go out into public because it smells like someone died.
Again this seems to be only after my night dosage.
Posts: 2905 | From New England | Registered: Sep 2004
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lymeHerx001
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posted
i think will go against my doctors recomendations and take a doxy for luch, maybee 1/2
I feel so bad here at work. Im so tired and weak and in pain, its tough for me to see and getting hard to breathe.
It seems like even breathing takes alot of energy now. Energy that I dont have.
Uhhh,,, time to make coffe. dammit, i dont like relieing on this stuff.
Posts: 2905 | From New England | Registered: Sep 2004
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lymeHerx001
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posted
I just took 3/4 of a capsule. I know it isint that much less ...
but we will see what happens. Ill keep this board posted.
As far as gas, I had some today but not like the other 4 nights on the biaxin
Posts: 2905 | From New England | Registered: Sep 2004
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lymeHerx001
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posted
Ok so its a couple of hours later.
I feel better, the pain in my arms is better and I can breathe better.
My feet still hurt some though.
But no herx,, so what is this doxy doing now? Keeping the bacteria at bay instead of killing it?
It seems like when I went off the DOXY the bacteria got mad and started to party for those 2 days.
Anyone have any ideas?
Posts: 2905 | From New England | Registered: Sep 2004
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lymeHerx001
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posted
I woke up and felt horrible today.
I had to carry some equipment yesterday and upon going to bed I had a burning shoulder and burning aching back.
It took me 2 hours to fall asleep. I took some kava kava last night. Didnt do much.
I did wake up and had very very dark urine. WIth what looked like chemicals swirling around.
I took another doxy with biaxin this morning. No herx, just feel slightlly better.
Im wondering if I should tell the doc that Im not pulsing the doxy and that I feel much worse off it.
Posts: 2905 | From New England | Registered: Sep 2004
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lymeHerx001
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posted
I talked to the doctor.
He said that I should now go on the DOXY 3 times a day. Take the biaxin every day and take diflucan and flagyl as needed.
I hope I continue to improve and I dont get all this photosensitivity that people seem to get here on the doxy.
I guess the only way I find out that I have photosensitivity is to go out in the sun.
Im sure Ill get just enough sun passing through in the car.
Posts: 2905 | From New England | Registered: Sep 2004
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posted
Do your feet still hurt? I hate to ask you this, and I know I had a thread going on this, but honestly, I can't take this foot stuff anymore!
Everyday it has goten worse and worse. Burning on the bottom, constant pain...when I walk, when I sit, then stabbing or aching pain. Will even wake me up in the middle of the night
What is UP with this????
I worry, as my sister has peripheral neuropathy, has been confined to a wheelchair for 3 years, and this is how it started for her.
A little scared, YEAH, would say so.
Anyway, wanted to know if your foot pain is abating?
TIA, Jill
Posts: 203 | From Jacksonville, FLorida | Registered: Oct 2005
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posted
Hi - I just happened to read about the foot problems...
A couple years ago I woke up with what I thought was a terrible foot fungus of some sort my whole foot hurt when I walked or put pressure on it, it itched, and tingles...just felt aweful
Went to the podiatrist and he gave me a good exam...he said it was neuropathy from the Lyme Diseae and that he had seen in in other Lyme patients...
This came about when my husband was very ill in the hospital in a coma, and I was obviously under tremendous stress, so it made sense the Lyme would rear its head in some strange place.
Anyway it did go away after a week or so....
Just though I would add this in so that you know you are not alone and according the the Foot Dr I saw many people with Lyme experience this.
Posts: 437 | Registered: Sep 2004
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lymeHerx001
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Member # 6215
posted
Im sorry I wish I could tell you about your foot problems.
Mine dont hurt today because the doxy is actually working. Mine waxed and wayned. That means that they came and went.
Standing would bring on the pain more. Eating anything with sugar or a greasy meal. Anytype of herx would. Also I would wake up EVERY DAY with severe pain in my feet and legs.
The bottoms of my feet would feel like someone took out a knife and cut along the bottom and I tried to bandage them up and a day went by.
They would also feel like there were metal bugs eating away at my flesh down to the bone crawling and knawling.
The other one i like is it would feel like someone dropped my legs below my knees into a vat of HOT ACID!!!!
Only thing that worked for the pain was muscle relaxers.
SKELAXIN and FLEXARIL
but I developed tolerence after a month on them so I just lived with the PAIN>>>
did I say it was painfull, :!)
hope you feel better.
Posts: 2905 | From New England | Registered: Sep 2004
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