We all know that taking too much of anything may have a neg. affect on us...Maybe all the meds that people are taking, are making them worse, not this herxing thing.....Maybe it is a combo??? We all suffer different ways, different degrees....It could be a mixure of meds....Also, live life, dont think Lyme every minute!
------------------
Rob
good grief, do you have a clue how sick some of us can be???? my housemate is recovering from breast cancer and i'm sicker than she is. i've been home bound for the last 18 months while i was untreated, not on abx. after 8 weeks of abx, i just started pt that is helping me WALK again, but yeah, i should just be living life, not taking abx, and not thinking about this disease.
while abx may flare things up briefly (for some, not all people), overall it makes me (and many others) much better. learn about the range of the disease and the treatments before making such ill-informed broad judgmental statements.
[This message has been edited by duramater (edited 14 August 2005).]
For me this bad reaction happens
in a day or so and I loose much
ground each time--Jay--
That was my life before proper abx treatment...
Should I have just pulled myself up by the ol boot straps back then....?????
Sorry I have not been well and this post just go to me....
I even was able to "deny" this lyme for some years after my first attack..but. it comes back to kill what life is left, thoroughly and completely if allowed. "get on with life"? what Life? There is little of one's life left to "get on with" without abx for some people.
Anytime you have the answer to how I can get my legs to walk again, please let me know and I'll be glad to "get on with life and stop thinking about lyme"
------------------
"It is not genius, nor glory, nor love that reflects the greatness of the
human soul.....it is kindness..."
That's like telling someone who has just stepped on a nail,get over it,quit thinking about it,now move ahead.The nail is still in the foot too.The pain is all in your head.
I'm glad you have not been brought down into the pits of dispair trying to make life some what a wee bit normal.
Good luck,do you have Lyme?Seeing a Dr.,on abx??Keep reading,helps to understand the horrible mess alot of innocent,kind,caring folks have to deal with.
I think we think it so much,in hopes of a wonderful and quick cure.It's mind boggling to think a little tick could create such pain and suffering.Scratch my head everyday thinking about it,hard not to.
And it is true that long term antibiotics may lower your ability to fight a bacterial infection in the future. But do you risk being in a wheelchair because of something that might happen 20 years down the road?? You have to get their first.
I am the first to say that have the right attitude is a must. BUT you have to see the light at the tunnel to get to that point.
That said, there may be some truth to the idea that if people take the wrong drugs, or drugs that are not strong enough, they can be on antibiotics for years, which can have negative effects.
While I'm not sure there is any connection between these two issues, I was recently diagnosed with skin cancer at a youngish age, after two years on some carcinogenic, utterly unnecessary antibiotics, and have since been piling on the immune boosting supplements, like CoQ10 and selenium. I was on the wrong drugs for four years before starting appropriate co-infection treatment.
Since then, strong treatment has almost completely cleared my babesia and bartonella symptoms, and the Lyme is now improving rapidly. So the longterm antibiotics, while still necessary, have been needed for shorter and shorter time periods to produce a better and better effect. People on Lymenet are not all doing the same treatments, and the medical landscape is changing so rapidly, the old standby treatments of last months can easily be obsolete tomorrow.
So if you are worried about the risks involved in longterm antibiotics, the best thing you can do for yourself is to research your options like your life depends on it--which it does. If you advocate on your own behalf, effectively target your treatment right away so you don't waste time, and shop around, you may very well see improvement quickly, instead of reinventing the wheel.
And as to your last point... as you recover from Lyme, you will naturally lose interest in it, just as you naturally lose interest in the flu when you get over it. It's nothing you have to force or think about. And as you get to know the stories of the people on this board, you will see they are as far from being passive victims as you can get.
[This message has been edited by liz28 (edited 14 August 2005).]
Hmmmm...
First, everything you say is accurate. You are right, sometimes the meds, too much of some and the combos DO make people very sick. And it is also true, being sick isn't always a herx.
But the last thing I would want is for a newbie to read your post, get scared and avoid effective EARLY treatment!
So...
The points you mention (and those you don't)illuminate some common misconceptions between effectively-treated early lyme and late disseminated chronic lyme.
Two entirely different animals. Kinda like trying to compare feeling a little achey to crippling arthritis. Or forgetting someone's name and dementia. (All possible Lyme symptoms, by the way.)
So, to answer your question, "Maybe its the meds?" it is critical to consider the OTHER harsh reality: Untreated late disseminated Lyme may or may not respond to treatment and can cause chronic and severe disability.
Those who live on the front lines of that battle don't WANT to be there. Many are seriously wounded and using whatever medical supplies and technology are available. And, at this medical juncture, that doesn't always work and sometimes even makes things much worse.
Trust me, no one knows that better than those in the foxholes.
And, second, regarding "live life, don't (always)think about Lyme.." please be gentle with the folks here.
Some are very, very sick and desparate to get better so they CAN live again. Some have lost family members, their livelihoods, their ability to walk, think, speak, hear, or live a day without horrible pain.
Anyway...
I guess it depends on how one defines living. If life means proceeding as though its business as usual; work, play, school, sports, vacations, hobbies, a social life, etc., some CAN'T do that anymore. Just not an option. And trust me, some of those losses are tremendously painful.
Sometimes the sickest patients and families are further harmed by being expected to account for those very losses. It is a misunderstanding that compounds the damage caused by the illness.
With chronic illness and disability, sometimes our notion of "living" has to be reframed.
But perhaps by living life, you meant having a positive attitude, not giving up?
I think most of the people on this board qualify for that just by being here.
And if we're really lucky and having a great day, it might mean being able to stay motivated, intellectually curious, creative, spiritually connected, have some laughs, be generous, courageous and pioneering in SPITE of overwhelming physical, mental, social and financial handicaps.
I think there's a lot of life on Lymenet.
andie, jc & julie
lyme x 3
quote:
Originally posted by BostonLyme2005:
Guys,We all know that taking too much of anything may have a neg. affect on us...Maybe all the meds that people are taking, are making them worse, not this herxing thing.....Maybe it is a combo??? We all suffer different ways, different degrees....It could be a mixure of meds....Also, live life, dont think Lyme every minute!
I can only speak from experience here:
150mg Doxycycline daily for 30 days cured my dog's Lyme (or so I assume since she's not puking, limping and generally acting like she's going to die).
I was sick all of this past winter. 10 days of Omnicef prescribed for a "sinus infection" got rid of most of my back and neck pain as well as the painful urination and these really wierd almost orgasmish twitching sensations in my head (not sure how else to describe them). I also returned to a semi-normal sleep pattern after the Omnicef - i.e. not 12+ hr/day in bed. The Omnicef did make me feel like crap from the 3rd day to the 7th day of use, but it really helped in the long run.
Cat's Claw for about a month helped with the joint pain, visual contrast problems, and made me feel generally better, but I had to stop it because it was giving me stomach cramps and diarrhea.
Cefzil 500mg 3x/day for a month: well, I just started it today, so Lord only knows what it'll do.
Trust me, before the antibiotics, etc, I was a total mess - the medications have helped me. Some side effects, yes, but nothing worse than the way I felt this winter. And I guess I'm lucky since I know (personally, not through here) a person whose face was paralysed for a while and a person who had pretty bad heart problems - both were caused by untreated Lyme. Fortunately, both recovered after appropriate treatment.
-DS
------------------
Rob
At least that is the way I see it. I dont give advice, unless asked...and even then I hesitate since most things are just none of my business. Unless it affects me.
Let's give him the benefit of the doubt folks.
Rob, please keep asking questions. I don't think you intentionally meant to upset anyone and I don't think anyone intentionally meant to upset you either.
Bea Seibert
___________________________________________
Hey Guys, Help Me With An Honest Assesment Of My Recovery??
Author
BostonLyme2005
Frequent Contributor
Posts: 48
From: Boston
Registered: Jul 2005
posted 01 August 2005 20:45
--------------------------------------------------------------------------------
Hi Everyone,
I have been ill for a year. The symptoms I now have.
Stiff neck, heavy legs, vibrating legs, tingling in legs, arms, fatigue, only severe when I am too physical with anything, arthritis pain, not severe, but is there, broken sleep, but sleep a good amount, spasms all over, do not hurt, but there, some trembling, fogginess sometimes.
I got sick from a pet shelter. Bugs all over me, different days. Had the tests, PCR, Alissa, normal bloods, all neg.
I can do anything, except walk up stairs, well I could do it, but dont feel like it, dont want to get too fatigued.
With having been on meds 3 x's in a year, once for this, twice for bronchitis, is it possible the Lyme has not had a good chance to develop???
Anyway, what do you guys think?
Also, My PCP thinks this is not Lyme, but I am in the works to see Dr. D. in Boston and get some help!
Thank You!
------------------
Rob
________________________________________
Does this sound like Lyme to everyone?
Author
BostonLyme2005
Frequent Contributor
Posts: 48
From: Boston
Registered: Jul 2005
posted 09 August 2005 16:49
--------------------------------------------------------------------------------
Hi,
I am Rob. Symptoms.
Severe Fatigue at the start, arthritis pain a few weeks after, doxy for 6 wks, did not cure me. abx. a few more times during winter. heavy, tingling, sore, vibrating legs. Tingling arms, some fogginess, burning arthritis, stiff neck, spasms, broken sleep, some anxiety.
What do you guys think? My PCP, had given amox. 1500mg's a day. Waiting to see LLMD in Boston.
Thanks
Rob
Is caffiene/sugar ok?
------------------
Rob
____________________________________________
BostonLyme2005
Frequent Contributor
Posts: 48
From: Boston
Registered: Jul 2005
posted 10 August 2005 07:15
--------------------------------------------------------------------------------
Hi,
Thanks! I do not have MS, or anything like that! I never felt ill until I was at the pet shelter and covered with many kinds of bugs, different days. I have used caffiene many times, and felt good, but I will stop! Also, sugar, and felt ok, but I will stop. I have been tested for the vitamins levels, they were all fine, I do take a multi. I have been ill for just one year now. There was a few times whenI felt very good, two cycles, about 5-6 weeks each. I was drinking plenty of water, and taking abx then for bronchitis. My spasms have seemed to slow down very well now that I am taking amox. for five days, other symptoms are there still. Oh well!
Takes Time I guess! I have never had to leave my job. I think and feel with the correct treatment, I can recover 90-100%
Thanks,
Rob
___________________________________________
I spent too many years begging Drs. to help me (without success) so am now long term lyme infected.
speaking for myself (and others I believe) the reason this consumes my attention is my unending search for the same "cure" the medical machine hasn't been able to find.
We all desperately want to get better and live our lives again. We want the same for you too. This is what I pray for everyday. Healing thoughts from me to all of you,kt
Gee, Rob, thanks for this little gem of wisdom!
I am quite sure everybody on lymenet will have a light bulb light up above their heads, throw away all their "nasty" meds making them so ill and start "getting on with their lives"!!!!!
Have you been hitting the bottle or (what could be worse) listening to some med/psych person's opinion about Lyme?
Nelly
Rob
quote:
Originally posted by nellypointis:
>Also, live life, dont think Lyme every >minute!Gee, Rob, thanks for this little gem of wisdom!
I am quite sure everybody on lymenet will have a light bulb light up above their heads, throw away all their "nasty" meds making them so ill and start "getting on with their lives"!!!!!
Have you been hitting the bottle or (what could be worse) listening to some med/psych person's opinion about Lyme?
Nelly
------------------
Rob
I wrote before I had a chance to read your "I'm sorry" post.
You're at work and I am...in bed! maybe that's why you can say things like "live life, forget about Lyme" and not give it another thought. But it hurts, you see!
I am sure you hope I'm well, but I'm not!!
Keep well!
Nelly
I am sure you have already explained all about your trials and tribulations with abx etc, I tried to do a search but didn't get very far (eyes are very sore).
Would it be possible for you to very briefly remind me a) what was that carcinogenic abx you took for 2 years? (flagyl, maybe), b) how you found out you had babesia and bartonella, c) what treatment you are taking that is making such a difference for the better?
Thanks
Nelly (in France)
Rob
quote:
Originally posted by nellypointis:
Liz,I am sure you have already explained all about your trials and tribulations with abx etc, I tried to do a search but didn't get very far (eyes are very sore).
Would it be possible for you to very briefly remind me a) what was that carcinogenic abx you took for 2 years? (flagyl, maybe), b) how you found out you had babesia and bartonella, c) what treatment you are taking that is making such a difference for the better?
Thanks
Nelly (in France)
It must be tough to work with your fatigue.
I worked three years full time with treatment. The end of the day did me in!
Unfortunately, I had to take early retirement from a job I loved because memory, shaking, not being able to organize my thoughts, getting lost, use windshield washer on car instead of blinkers, speech problems, word retrieval.
Hopefully, you've caught yours in time, and will not have to suffer like most people on here!
Today I did go and get my teeth cleanded, and went to the store after.
See Rob, when we have good days, we try to live life. This has been a lifeline for many just like als, ms, lupus support groups.
Glad I didn't listen to my p.c.p. and go on steroids even after diagnosis with lyme.
We wish only the best for you ,and thanks for your apology.
I've been on here because my son is going to Iraq in Oct.. It's doing a number on me!
He was supposed to come home to be in a wedding, but their already packing to leave.
I've been on here and people have been so wonderful.
I'm trying not to do too much at this time so I can go to Ft. Campbell to say good-bye, and just writing this is making me cry.
I wish you better health than the rest of us!
Don't take it too personally, we're just family watching out for one another, and giving each other encouragement!
I don't think there isn't anyone on here who hasn't questioned about the meds.
Sometimes the psychiatric issues make you think this isn't real, but the sad part...it is!
More research, and before long, we'll all have our lives back.
Take care, and hope everything works out for you1
I would be lying if I didn't say that I ask those questions every single day. I am so sick and I also wonder if it is Lyme, co-infections, something else or maybe the meds. I want it to be the meds that are making me so sick. And, to some extent they are. I want off this @#$% so badly!
I have tried to stop meds 3 times and just got sicker and sicker. I hate the meds. I hate the disease more. I hate thinking about Lyme 24/7. But, it is there and I just can't get around that.
My brother-in-law told me this weekend to stop whining and suck it up. I was nauseas and dripping with perspiration from fever. I wanted to sock him in the face. But, I realized that I really do think about Lyme all the time and some of the people around me are tired of hearing about it. They don't understand. So, I am going to stop mentioning it and maybe by some magic it will go away. Not likely.
I don't think you meant any harm or disrespect. You are probably in a better place than some of us. I want to be there too. I, personally, think all the Rx I have been on are doing as much harm as they are doing good. My gut has been completely destroyed by Zithromax and Amoxycillin. I can't drive while on Mepron because I see double. IV meds caused my veins to collapse. IM meds are giving me a very lumpy butt and some minor nerve damage. But, none of this compares to how disabled I was while untreated.
I agree "Live life". It is all we have some days. Treat it as a gift.
Bc
I am sure you have already explained all about your trials and tribulations with abx etc, I tried to do a search but didn't get very far (eyes are very sore).
Would it be possible for you to very briefly remind me a) what was that carcinogenic abx you took for 2 years? (flagyl, maybe), b) how you found out you had babesia and bartonella, c) what treatment you are taking that is making such a difference for the better?
Thanks
Nelly (in France)
[/B][/QUOTE]
quote:
Originally posted by Raskilnokov:
I might have written a post similar to yours at 1 -year. At 1-1/2 years following diagnosis, I climbed Pikes Peak 3X (over 2-3 week period).At 3 years now, it looks like my hiking days are about diminished. Legs are weaker, numbness began 8 months ago in toes/feet and progressed into legs. Vertigo is getting worse, one morning woke up to watch the room spinning round, and round, and round.
Can't comment on meds. as I'm low-income (homeless) and been denied all over the country [although did have dox/amox 3-weeks due to tick bite/EM rash and 2 months later 30 days of cefuroxime 2X standard dose per Burrascano guidelines. But that's been it--I'll be a good test example of what happens to untreated disseminated Lymes].
Recently given Neurontin (I guess for peripheral (sp.?) neuropothy/pain). Waiting until last resort before taking it.
[This message has been edited by Raskilnokov (edited 15 August 2005).]
------------------
Rob
I too have numb, heavy, tingling legs, but it comes and goes as most symptoms have over the past year. I am now taking Amox, 1500mg's a day, will see my LLMD in Nov. I am hoping for the best for you and me!
quote:
Originally posted by Raskilnokov:
I might have written a post similar to yours at 1 -year. At 1-1/2 years following diagnosis, I climbed Pikes Peak 3X (over 2-3 week period).At 3 years now, it looks like my hiking days are about diminished. Legs are weaker, numbness began 8 months ago in toes/feet and progressed into legs. Vertigo is getting worse, one morning woke up to watch the room spinning round, and round, and round.
Can't comment on meds. as I'm low-income (homeless) and been denied all over the country [although did have dox/amox 3-weeks due to tick bite/EM rash and 2 months later 30 days of cefuroxime 2X standard dose per Burrascano guidelines. But that's been it--I'll be a good test example of what happens to untreated disseminated Lymes].
Recently given Neurontin (I guess for peripheral (sp.?) neuropothy/pain). Waiting until last resort before taking it.
[This message has been edited by Raskilnokov (edited 15 August 2005).]
------------------
Rob
In April, I was very sick. This was BEFORE I found Lyme net. I had no Knowledge of LLMD"S and very little about Lyme.
During ONE month, alot happened to me all at once. including being fired while out getting the m.s. diagnosis. I was the bread winner for a family of four.
and through countless hours on this computer I went by symptom and figured out what was wrong with me ON MY OWN, Before getting a pos Western Blot.
I think what you said, keep on living, was positive. You clearly meant that You shouldn't give in. No matter what.
I'm not talking like if you lost your vision, you should drive anyway. or if you have vertigo, jump rope. it means something different for everyone.
If I gave in Back then, I'd be even sicker now. with steroid injections and who knows what else.
If that's offensive, well I'm sure people really hate my signature then!
Take it easy rob,
------------------
-Kimmi
Just keep swimming!
quote:
Originally posted by Kimmi_K_75:
Rob,
I personally didn't take any offense to your post.In April, I was very sick. This was BEFORE I found Lyme net. I had no Knowledge of LLMD"S and very little about Lyme.
During ONE month, alot happened to me all at once. including being fired while out getting the m.s. diagnosis. I was the bread winner for a family of four.
and through countless hours on this computer I went by symptom and figured out what was wrong with me ON MY OWN, Before getting a pos Western Blot.I think what you said, keep on living, was positive. You clearly meant that You shouldn't give in. No matter what.
I'm not talking like if you lost your vision, you should drive anyway. or if you have vertigo, jump rope. it means something different for everyone.
If I gave in Back then, I'd be even sicker now. with steroid injections and who knows what else.
If that's offensive, well I'm sure people really hate my signature then!Take it easy rob,
------------------
Rob
I have been in Lyme treatment for 8 years now... Some of those years were "wasted" b/c of the wrong abx for me.
I think we all have our tolerance level for abx...
If we end up taking too much we can develope a toxic build up which in turn is not helpful to us but can actually make the situation worse.
I Personally have experienced this with myself.
I also learned that certain abx ( although supposedly the "best" for treatment were not good for me....
I have learned to tweek my treatments to what my body can handle...
I think my LLMD said it the best... he said " you need to be on abx treatment, but no tto the point that you cannot function on the treatment..."
I think that said it all... There needs to be a balance...and if you find you are NOT making progress on a certain combo of abx then maybe you need to think of backing down on dosage , or trying another combo...
So anyway That is how I manage my treatment...
I have imporved the most on the Lower/slower way of treatment.
I have done IM bicillan 1 shot every 10 days for 5 years... That was the dose my body could handle, and even though it is not the recommended dose for people with Lyme I still got marked improvement out of it..I did this with several other abx as well.
Ok just my 2 cents.... Hope it made some "sense" LOL !
But my family doesn't "believe" in Lyme disease in the south or Master's disease or STARI or whatever the CDC is calling it this week.
I was raised to never go to the doctor unless I was dieing. Well, I've been dieing for 20 years and didn't know it until it was too late to ignore anymore. Now I'm afraid I will always be sick, tired, and labeled a hypocondriact--which I looked up--you don't just spontaniously develop hypocondria--it is always a part of a persons personality--just may become more pronounced.
L
I am with you. I get pretty sick from strong doses of most abx. My MD now has me on a lower dose and has told me it will be the slow road that gets me better. His goal is to keep my functional. On Doxy and IV Rocephin I was not functional for about 5 weeks. It was just more than my small body could tolerate. Sometimes slow and steady is the way to go. (not for everyone)
Anyway, we all know ABX is hard on the body in various ways but there are so few choices out there and people have gotten well on ABX we know that. Lyme is so damn difficult because science has not caught up to it yet and we are all guinea pigs to some degree but what the hell can we do??
But for Rob, my suggestion is to seek answers other places as well, maybe alternative methods to kill these damn ketes and there are those out there also.
Mainly RESEARCH and then more RESEARCH to figure out what we need to do for ourselves. We are the chairmen of our own board with this disease cuz there are no definitive answers really.
AT the same time, watch your pocketbook cuz you can throw millions of things at this disease and end up sick and broke, particularly in the holisitci world.
RESEARCH and RESEARCH
Lymelady
Your absolutly right abx's do make you sick when you have lyme.
Know Why ???
Answer
Its the die off of the spirochetes it creates a high cytokine level,toxins too many for the body to deal with and you have a lovely herx.
The J-H reaction sometimes occurs with intravenous (IV) antibiotics. It may be noted within days of treatment; with oral antibiotics it may be noted within days to weeks of treatment. When the antibiotics begin to destroy the Lyme spirochete, a toxin is given off causing either direct reactions or indirect reactions through the stimulation of the immune system. The more advanced the Lyme disease is, the more severe the reaction is. The J-H symptoms can vary from systemic reactions such as low blood pressure, fever, chills, and hives to more specific symptoms such as increase in joint pain, headaches, rash or in general, a reversal or worsening of the Lyme symptoms complex. Mistaking the J-H reaction for an allergic reaction to antibiotics, serum sickness or some other catastrophe might lead to prematurely stopping the antibiotics on the part of the physician or non-compliance in taking the medication by the patient. J-H reactions are 10 times more common than allergic reactions to antibiotics.
quote:
Originally posted by treepatrol:
THE JARISCH-HERXHEIMER REACTION (also called J-H, HERXHEIMER, and Herxing)The J-H reaction sometimes occurs with intravenous (IV) antibiotics. It may be noted within days of treatment; with oral antibiotics it may be noted within days to weeks of treatment. When the antibiotics begin to destroy the Lyme spirochete, a toxin is given off causing either direct reactions or indirect reactions through the stimulation of the immune system. The more advanced the Lyme disease is, the more severe the reaction is. The J-H symptoms can vary from systemic reactions such as low blood pressure, fever, chills, and hives to more specific symptoms such as increase in joint pain, headaches, rash or in general, a reversal or worsening of the Lyme symptoms complex. Mistaking the J-H reaction for an allergic reaction to antibiotics, serum sickness or some other catastrophe might lead to prematurely stopping the antibiotics on the part of the physician or non-compliance in taking the medication by the patient. J-H reactions are 10 times more common than allergic reactions to antibiotics.
------------------
Rob