Random ponderings...

Well, I'm the last one to be offering anything, but I had the same question about "never getting well" and someone answered me that yes, there are "success stories" but those people tend to move on after a while and live their lives. That makes perfect sense to me.

As to the herxing, is not herxing to mean that the meds are NOT working? Not necessarily because as so many kind people have posted here, there are methods to make the detoxing less severe. I can attest as a witness for my husband that the suggested baths and foot baths have made a difference for him thus far, as well as taking probiotics.

That's all I can offer on these topics; I'm sure others have much more to contribute than I.

Post Edited (chicksinger) : 2/16/2011 4:40:40 PM (GMT-7)

You have to wonder why some countries will not allow food in from the US, will not import our crap...there is a reason. Its FOOD for pete's sake and the gov't is trying to regulate it. FOOD. SEEDS. Dear gawd, do not even get me started on that one.

I will say, the lack of success stories and the unbelievable suffering I read about scares the crap out of me. But it also has me wondering about the choice of drugs/herbs/etc used to treat this disease. I tried abx and was sicker for the first 2 weeks than I had ever been in my life. FIne, herx. Then I was ok for a few months, but the photosensitivity and gut stuff pushed me past what I was willing to tollerate and I went off the abx.

Tried herbs, and had an increase in ALL my symptoms, became suicidal, in pain all the time...herx? I don't know. I stuck it out as long as I could but went off that as well. Within 2 days, I felt better. Not *well* but to the point i could manage.

I guess I am having a hard time with the *toxic-ness* of the cure. Be it herbs or abx, to make someone who is so sick, sicker...HOW exactly is that heping? And what about the people who have tried more abx than the average pharmacy stocks and STILL are sick?

I get that it is a multilayered disease, but I am starting to feel like the way *we* attack it is all wrong. We are KILING our immune systems...the very thing we have that is supposed to FIGHT illness! Abx destroy everything, they aren't selective. Yes, we try and do other supportive measures, but I am willing to bet that most of those fists-full of pills we all down several times a day aren't even being absorbed, based on the fact that many of us have gut issues to boot...

I just have this really sick feeling that we have been barking up the wrong tree and wasting YEARS trying to get well when what we were doing very well may have done more harm than good.

I know for me, I am pretty much going off everything and starting over. I simply do not think making myself sicker is going to cure me.

I also am wondering, that those with chronic Lyme...will it not end up being something LIKE having diabetes, MS, etc where you will manage your symptoms with diet, exercise, rest and a FEW immune boosting supplements and simply live with it...BUT live a fairly nice life? Since the latest *science* is saying Lyme may NEVER be able to be cured, particularly chronic Lyme, maybe the focus should be on working with what we DO have, strengthening and building our immune systems up to do their jobs, and MANAGING our symptoms instead of killing anything and everything off...

Seems too, that many people with Lyme go on to have other 'illnesses' as well...cancer, other dx...well, if you have trashed the immune system, is it any wonder?

I recenty finished reading(if you'd call it that, lol) Cure Unknown by Pamela Wientraub and though much of it I did not absorb, there were parts that stayed with me(it is a BIG book, lots of info, lots of science reporting and stuff most of us have read before and then some...good read if you can manage a book that size)

Something that did stand out is a study they did on mice somewhere studying their immune systems. Trying to explain why some people got sick with Lyme, and others could be pos. and yet asymptomatic. VERY interesting, drew some 'a-ha' paralells with MS, and made sense to me. Doesn't matter what the illness is, if your immune system doesn't work, you WILL get sick/sicker than someone whose system works perfectly.

There is actually something you can test for(I will have to go back and find it) that they are finding in MS pts AND MOST LYME PTS! It is some gene(?) that basically dictates why you will not recover fully, and has everything to do with your immune system. There is also talk about those with chronic Lyme having a genetic predisposition to autoimmune issues...which when I look at all the people I personally know with Lyme, myself included, this makes perfect sense. My family is a hotbed of AI crap. As is Hubby's and I have 3 kids who most likely have Lyme.

Particularly when I see whole families with Lyme...yes, obviously they could all be exposed, they spend time together doing the same things or the kids caught it in utero but what else is going on?

OK, I have gone on long enough... :)

Hi WP,

After 4 years with this bug - 2.5 years of untreated LD and 17 months of treatment I believe my body knew the difference between a herx, pure LD symptoms and other illness/problems. In my experience the difference was marked. LD affected me for all of the 4 years in many different ways both mentally and phsically and although these symptoms were bad enough I never felt as ill as when I herxed. When I first started the abx (and herxed) I could have well put it down to a bad reaction to the drug, but with experience these thoughts soon diminished. To begin with my herxing came every 5 days (the cycle of bart) and after a few months (when the bart was gone hopefully) I herxed every 4 weeks for a few days at a time (the cycle of borrelia) right up to November just gone. Now hopefully I have started my last 2 months of abx as I feel great, apart from a few persistant nerve damage symptoms I'm symptom free. So my "herxes" couldn't have been a reaction to the drugs as I'd still be suffering from them.

I found too that although the symptoms of LD either got worse or just felt worse because the toxins from the "die off" made me feel so ill, it is a feeling like no other illness I've ever had and believe me I will never forget it.

Mik.

Hi Kirsty, I'd expect that the initial reaction you had was probably a herx, feeling like you are dying is just about the right feeling. Expect a few more though, LD replicates every 4 weeks or so, I could just about set my clock for the few days I was going to be ill. I have kept a diary for the last 2 years, I take my temp 2 x a day, first thing in the morning and last thing at night, and write the worst symptoms I feel on that day (I hadn't got enough paper to write all the symptoms down), it is so easy to forget how you have felt on a perticular day if you need to tell a Dr and you can keep track of symptoms that cycle. It's a very useful tool that I'd recommend to you if you don't do it already.

I don't know much about the effects of steriods and LD but I do know that it's not good to mix them. I know steriods supress the immune system, this might be the reason you slowly got worst over the week, as the steriods hindered your immune system the LD bug slowly got more of a hold and a free rein to attack your systems. With the abx herx as soon as the borrelia start to die off they release toxins that poison you. I'm not medically trained, these are just my thoughts, but I do know that a herx is not a myth.

Hope you feel good soon.

Mik.