tdtid
Frequent Contributor (1K+ posts)
Member # 10276
posted
I keep hearing about people saying they feel good and then get bad again, almost in a cylical fashion. This seems to be the norm.
I was diagnosed on Nov. 6, started herxing on Amoxicillin four days in and haven't had a good day yet. I'm told this is "herxing", but don't you get breaks from it?
I know I haven't even been doing this two months yet, but I'm feeling so weak, dizzy, frustrated and I wonder how you know if the meds you are taking are helping if you never "feel better".
I understand herxing, but I guess I want a sign that I'm going to get a good day sometime through this and not just be digging my grave deeper each day.
Cathy
-------------------- "To Dream The Impossible Dream" Man of La Mancha Posts: 2638 | From New Hampshire | Registered: Oct 2006
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TheCrimeOfLyme
Frequent Contributor (1K+ posts)
Member # 4019
posted
In all honesty? That depends on alot of factors, including how long you were sick prior, what your symptoms were prior ( I mean severe brain fog, confusion and severe headaches are probably going to intensify big time on a herx.. as compared to knee trouble, etc) and alot of other factors, that are individual to YOU.
When I just started out, I had no good days. I hadnt had a good day for nine months straight before that either, before I began treatment. Not one single good day. When I first started, I had OH MY GOD I'm going to die days and HOLY &*hiT please shoot me because I'm too sick to do it myself, days.
It took me a few months before I had a "good day" which for me still included some minor symptoms. And it took me a year before I had my first full "Im me and normal again" day.
It took me 4 years to get into remission. Hang in there, it will happen! Everyone is different.
Amoxicyllin was my first drug too. Dont let anynoe tell you it does nothing. Its bull. It worked wonders on me.
-------------------- You want your life back? Take it. Posts: 3169 | From Greensburg, Pennsylvania | Registered: Jun 2003
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lymie tony z
Frequent Contributor (1K+ posts)
Member # 5130
posted
I agree with Crime....
Although for a ray of some sunshine...I took oral doxy and ammoxy and after first month I was hopping around on my bicylce and the neuro was'nt so bad anymore...
So you see everyone is somewhat different....you started your herx as most do....in relation to your start of abx,,,,
Be patient.....you're just getting started.... Better days are awaiting you...
zman
-------------------- I am not a doctor...opinions expressed are from personal experiences only and should never be viewed as coming from a healthcare provider. zman Posts: 2527 | From safety harbor florida(origin Cleve., Ohio | Registered: Jan 2004
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5dana8
Frequent Contributor (1K+ posts)
Member # 7935
posted
Lyme definetly cycles. herx's can slso come in cycles too. Re: herxing and treatments: it is very common to feel worse or just as sick due to the herx before you feel better.
It depends on the pereson & how high your germ count is and how co infected you may be. Have you only had treatment since nov.6th ? Treatments can take a long time, depending on the person. Have you looked into any co-infections?
I did 3 years of treatments and didn't start to feel better till the end of it.
I had lyme for a very long time and my germ count was high and I also had to get treatments for the do-infections as well.
It doesn't have to take 3 years but may take longer than a month or 2.
goodluck to you and hope you can feel better soon
-------------------- 5dana8 Posts: 4432 | From some where over the rainbow | Registered: Sep 2005
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TerryK
Frequent Contributor (5K+ posts)
Member # 8552
posted
I've heard many here say that Borrelia has a cycle. Makes sense that all living things have a growth cycle and it is not usually just one infection that most of us are dealing with. This could be part of the picture. Also, not everything is a herx. While taking abx there are things that you need to keep an eye on or they can get out of control and make you feel sick.
Abx has it's own side effects that will get better after time on the medication or some people can be allergic.
AND
When bugs die, metals and viruses are released and can cause symptoms. In addition, lyme co-infections can be a factor as can other infections (parasites, viruses etc..). When one of these infections is impacted, others often respond with some sort of an adjustment.
Abx can cause candida concerns and they can happen quickly if you already have even a mild undetected infection or your gut flora is already out of balance (and most people who haven't actively worked on it have unbalanced flora). Also, your detox system gets taxed and often needs extra support.
Due to a depressed immune system, most lyme patients can pick up quite a few infections. My viruses get out of control while on abx. I was sick for a month with a virus so my LLMD put me on an antiviral. Talk to your LLMD about what you need to do to support yourself while on abx. If your LLMD is strickly allopathic, I highly recommend seeing a LLND (lyme literate Naturopathic Doctor) in addition to your LLMD if possible.
Just taking abx is probably not the answer for most people with lyme, especially for anyone who has had it for any period of time. At some point, too many other things get out of whack and will need attention as we are healing. Hormones, gut, immune system, detox system etc..
Control candida - lots of posts here about that
take probiotics to keep gut flora balanced
deal with lyme co-infections - you need an LLMD who is mindful of co-infections
deal with viruses, parasites or other infections
support liver kidneys and detox system
use lymph drainage techniques - lymph drainage exercises, dry brushing
start an exercise program as soon as you are able
control inflammation - often gets worse when on abx because bugs die in the tissues and cause inflammation - bone cracking and popping are an indication and I'm sure there are other things to look out for
These are off the top of my head and I may have missed something. There are many techniques that are discussed here to help people deal with these issues.
It is a balancing act. Good luck. Terry I'm not a doctor.
Posts: 6286 | From Oregon | Registered: Jan 2006
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MariaA
Frequent Contributor (1K+ posts)
Member # 9128
posted
I agree with Terry's advice to look at other factors (and of course not to expect immediate results because this stuff takes so much time).
I had a basically herx-free experience treating with Antibiotics, herbs- and neurotoxin binders such as chlorella, bentonite clay, charcoal (not often), and Welchol, and doing LOTS of acidophilus to help with the candida that antibiotics cause. It appears that some of this theory is covered in the book Mold Warriors, and the other information I found useful was from the book Healing Lyme by STephen Buhner.
I wrote up some of my experience here- obviously I had to do a LOT of extra stuff on top of the antibiotics, which probably really helped make the recovery easy. I also have a simpler case of Lyme than many other patients- no symptoms of coinfection with other tick-borne illnesses- so your experience may not be as easy as mine:
posted
wow. it just seems we all get better on our own timetable with alot a variables effecting the outcome.
From reading her posts, MariaA was sick for 6 years and only took 6 months after the commencement of treatment to see significant improvement.
My experience was much different. I was sick for only 4 months before treatment. I also had ehrlichiosis/anaplasmosis. I herxed almost 24/7 for the first 5 months. By month 6 I was starting to feel human again. I then herxed on and off and at various intensities for a couple years. (fairly large breaks in between where I was feeling well).
- Mike
Posts: 153 | From Watertown, CT USA | Registered: Feb 2004
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tdtid
Frequent Contributor (1K+ posts)
Member # 10276
posted
I guess I need a little more backgground. I was sick five years and after the steroids, ended up with neuro issues as well before getting my diagnoisis.
I had been seeing an N.D. for three years as well as my PCP when I was told it was fibro so had been building up my system with the Myers Cocktail.
That's an IV form of magnesium, Vit C, Vit B and many other vitamins and minerals.
It was my N.D. that thought I needed to get more extensive lyme testing and his buddy from medical school specializes in Lyme, so I see him.
But it's a husband wife team so I'm doing abx and the N.D. approach which in his case is Dr. Zhang. So with my Amoxicillin, I take the Babesia protocol from Zhang, and have started doing longer drips with my N.D. to build up my strength.
I was not trying to say I thought I should feel well in this short amount of time. I just wanted to know how you know if these meds are the right ones for you, if you always feel ill.
I guess I just hoped for a day to say, "wow, these are really working" when in reality, these six weeks have been just making me sicker and sicker and sicker.
I know we all feel sick, so I'm not trying to be a pain in the butt. I just want to know how you know if your treatment plan is right for you.
As far as co infections, I tested negative for the three main ones they run by my LLMD who I guess is actually an LLND says he feels strongly I have babs which is what the Zhang works towards and probably Bart, which I doubt is being tackled yet.
I'm always exhausted, been doing the yeast free diet, doing my probiotivs and anything that is told to me, but I'm feeling so weak and confused. I'm not even sure of the questions I should be asking my doctor.
And regarding other meds with the abx, he doesn't want to go that path even when we speak of specific ones since he doesn't know how the Zhang (Allicin, Artmesia, Circulation P, and AI#3) would work with them.
I guess I was hoping that I would atleast get a day of "improvement" to atleast know this was right, even if it went back to a herx. And with the holidays, perhaps I'm more saddened that I can hardly move myself out of bed with all the fatigue, confussion, aches and pains, brain fog, queezy stomach and I sleep way too much.
Basically I'm not functioning and I'm not contributing anything in society anymore, other than acting like a zombie. How do I get out of this rutt?
Cathy
-------------------- "To Dream The Impossible Dream" Man of La Mancha Posts: 2638 | From New Hampshire | Registered: Oct 2006
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posted
Cathy, Im not sure about the herxing, just wondering if you are experiencing symptoms from the babesia? Did you have weakness and dizziness before starting the amoxicillin? I think that you mentioned Zhang for the Babesia- are you taking anything else? Lots of info here on treatment for that particular co-infection.
Seems as though you are on the right track, doing modified Myers. Did you find out what else was in the IV?
Maybe the amoxicillin is not the antibiotic for you I don't know, like they said there are so many factors. How's your metal status?
_____
Posts: 465 | From New York, NY | Registered: Aug 2005
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posted
What were the steroids prescribed for?
Posts: 465 | From New York, NY | Registered: Aug 2005
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tdtid
Frequent Contributor (1K+ posts)
Member # 10276
posted
First steroid dose pack was for the horrid chest pain that was not caused by the heart, but the last bout with steroids before my diagnosis,
was when they told me I had degenerative disc disease and needed epidural steroids for that. It was all a blurr after that.
As far as my symptoms before starting the abx, I would have everything coming and going all the time that I basically started feeling I was going crazy. Perhaps I still am.
I see my N.D. on Monday for another IV and can talk to him then. I see my LLND after the holidays although have an appointment time to call him on Monday after my IV.
I don't even know the right questions to be asking and saying you feel so sick, doesn't explain, but it's so many dimensions. Basically I have no choice but to put up with this as long as it lasts.
What I'm trying to find out is HOW you know if it's the right path if you have no "signs" other than feeling horrid all the time.
Cathy
-------------------- "To Dream The Impossible Dream" Man of La Mancha Posts: 2638 | From New Hampshire | Registered: Oct 2006
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tdtid
Frequent Contributor (1K+ posts)
Member # 10276
posted
Now that I have calmed down a bit (still feel like crap), but settling down, I'm able to step back and read some really good advice here.
It's sad that when we are in this panic and begging for answers and help, it's right there for us, but yet for me, it wasn't penetrating. Even worse, I was having trouble comprehending what I was reading here.
I honestly started out this treatment plan THINKING I had such a good handle on it. I was herxing hard, but I was going to be tough and I could do it.
But for whatever reason, I woke up around 4 am this morning, in bed wetting soaks and PANIC and the fear that this is my life and all the horrid "what if's".
My questions were sincere but I know I was not in my right mind at all today. All of you that answered both here and privately are a true Godsend.
You've definitely helped open different angles and things I can discuss with my LLND the next time I talk to him. This group is great and I'm just sorry I had a total meltdown today.
The thing is, is I KNOW I've had worse days, but for some reason, today I cracked. I truly felt/feel like I'm going out of mind and I don't like this feeling very much.
But thank you all! Hopefully a good night sleep and I'll have a new day to start with that hopefully will start out a weeeeee bit calmer.
Cathy
-------------------- "To Dream The Impossible Dream" Man of La Mancha Posts: 2638 | From New Hampshire | Registered: Oct 2006
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Boomerang
Frequent Contributor (1K+ posts)
Member # 7979
posted
Well, I think we've all asked the same questions you are asking....wondering if we were doing the right treatment. I worry and worry all the time whether my husband is getting the proper treatment.
I DO know that my husband is better, altho' he still has terrible brain fog problems most days.
I feel for you, because it's all so frustrating. I do believe, that, yes, you will feel worse when you start treatment. It's a tough way to go. My husband has been sick and taking ABX and supplements since Oct 05. When we first got the diagnosis from an LLMD, I was SO happy. It sure beat the prognosis from the neuro, that my husband had early Alzheimer's.
I thought (silly me), that Master's/Lyme diagnosis was a blessing.
Silly me .......again!
Posts: 1366 | From Southeast | Registered: Sep 2005
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I'm sorry I can't give you any advice or info, as I have only recently begun my own treatment for Lyme. But it IS frustrating to get worse while you are getting better! I know I've felt more depressed sometimes after getting my Lyme diagnosis and realizing how complicated and long-term my treatment will be. At least you have very knowledgeable practioners to help you out.
I also wanted to thank Terry for such a wonderful post that really lays out the multi-pronged approach needed for tick-borne diseases and other chronic illnesses. It's a also a great "reminder" to people who've been recently diagnosed with Lyme that there's not a straight line between diagnosis, treatment and cure.
I'd love to read your post to my friends & family who don't understand why I'm "taking so many supplements" and why I can't just take some antibiotics and get over Lyme!
Posts: 90 | From Sunny Southern Cali | Registered: Sep 2006
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BostonLyme2005
Unregistered
posted
I heard from a friend today that said she did not improve on the IV meds...Sometimes it takes time, and we all want health, NOW!
As advised by an llmd I trust with my life, sometimes giving yourself a "holiday of 1-2 weeks to let the pro inflammatory cytokine and leukotreines clear your system may actually do you some good. It certainly has in my case.My llmd says they have not seen resistance developing in pts. that take "holidays".
Another option suggested by same llmd is to reduce you dose to where you are just barely herxing...i.e chipping away at the Bb load thats in your body. This is the long haul and you should be ecstatic that you are actually herxing, as I believe herxing is unique to spirochetal disease..therfore confirming the diagnosis and you know you are killing some of the bugs.
I am turning into a fan of the low and slow approach after seeing it's effect in other lymies I know. Then if the pt. tolerates a certain dose with minimal herxing advancing to the usual "lymie" dosage range.
Good luck.
Travlr1
Posts: 66 | From West Coast | Registered: Jul 2006
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