minoucat
Frequent Contributor (1K+ posts)
Member # 5175
posted
A friend of mine is being treated for a sinus infection with a sulfa drug. She doesn't have LD.
She developed a very nasty broken out rash about 2 inches in diameter on her face. Was dx with everything from spider bite to allergy to her makeup.
She did some sleuthing on her own, and told the doc she thought it was a reaction to the sulfa drug. Doc said no, impossible to have an allergic reaction limited to one place on her body.
She persevered and saw a dermatologist, who confirmed that this is, indeed, a sulfa drug reaction. Rare to have it localized, but that's definitely it. She stopped the meds and the rash faded in a week.
I have had myself, and seen often, reactions that people assumed were herxes but were in fact medication intolerances.
It is very hard to sort out one from the other -- if anyone has a good "guide to what constitutes a herx" I'd love to see it. The rule of thumb is that a herx is an intensification of current symptoms, and I've found that to be generally true.
My own herxes have lasted much longer than the traditional short die off period that is often cited in literature. When I was treating for babesia my headaches and muscle pains increased agonizingly and stayed that way for 4 months.
Then they dropped off steadily, and in my last 2 months of tx I had pretty much no sx at all, even though I was on the same medication throughout. So I figure my initial reaction was a herx.
Sometimes the med reaction is worth the benefits -- I'm one of those people who had splendid results from Levaquin although I was in a lot of pain from it while I was on it for bart.
A lot of times the med is just too destructive -- the hubby had terrible and long-lasting neuropathy from flagyl (now resolved) without significant tx gains.
The best defense I know of is to read up carefully on your medication and know what the possible reaction are, and to keep a detailed log of what your own treatment responses are. The people I know seem to have very specific and standard herx responses, and these can be used to help sort out med reactions from herxes.
I've had only minimal luck with muscle testing. The people I know personally who have tried it gotten very inaccurate results from practitioners who are supposedly highly trained in it -- but if you find someone who is accurate with it, that's another option I reckon.
I can't think of any other ways to assess response to meds, but I'd be glad to hear suggestions.
Best of luck.
-------------------- ********************* RECIDITE, PLEBES! Gero rem imperialem! (Stand aside plebians! I am on imperial business.)
My LLMD has said that only about 15% of patients truly herx.
I did IV Rocephin for 8 months-it has done the most good for me so far-no classic herx.
Mino and Doxy were the hardest for me-due to intolerance-not herxing.
Thanks for posting this Minoucat-I think a lot of people are put in harm's way when they think the worse they feel the better they are going to get-when really their body is taking a beating from the meds-not the die off.
posted
This is interesting. Now that I think about it the last couple of times I have tried to take doxy after a few days to a week into treatment I start getting head and neck pain.
I thought at first that these were herxes but I read something about doxy increasing intracranial pressure or something and causing this type of problem. Still not sure what the cause is but stopped doxy 3 days ago and pain is less and fading. At one point I thought I was getting meningitis.
Posts: 413 | From nj | Registered: Nov 2005
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tdtid
Frequent Contributor (1K+ posts)
Member # 10276
posted
This is definitely a good post and something we all have to keep in mind. I know for me, I was getting strange symptoms from a med and kept blaming it on herxes getting worse and worse.
When we have lyme for so long, it is easy to just assume every symptom is lyme related and with so many drug reactions, you can't always be sure. So this is a great reminder.
Thanks for posting.
Cathy
-------------------- "To Dream The Impossible Dream" Man of La Mancha Posts: 2638 | From New Hampshire | Registered: Oct 2006
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AliG
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posted
Here's something I've wondered.
A herx is supposed to cause a worsening of symptoms or new symptoms.
How do you know if it's a herx or just worsening Lyme?
I know that my LLMD had told me that a herx should last about 4-5 days, go away and then cycle back when the borrelia come out to try to reproduce again. He said that, with each cycle, the herx symptoms should become progressively less severe.
He explained that after my first MAJOR herx.
This was exactly what I observed, with each cycle it was the same freaky set of symptoms (different than I was used to) and they were a little less severe each time.
Then it stopped & I just had progressive worsening of symptoms again. Now I'm on IV ceftriaxone for about 6 weeks and have been waiting for the herx I had come to know.
I'm just not seeing it. I just feel like I'm coming down with something all the time. I believe my cognitive symptoms seem to have started showing improvement, but there doesn't seem to be anything drastic going on.
I'm guessing that maybe the initial herxes took the bacterial load down or made them go into cyst form & now that I'm fighting with less of it, it's less obvious.??
I think I've noticed a pattern in the cycling of psychological/emotional symptoms over the course of months. That was much more pronounced when the Doxy herxes were obvious, but I seem to be getting the same type of cyclical rotation of obsessiveness, depression, emotional lability......
I think maybe Tincup's sponge theory could explain that.
I sometimes wonder if all the unending horrific herxing I see going on couldn't actually be attributed to drug/herb/supplement side effects or interactions.
Sometimes negative effects of medications and herbs can take some time to develop. I don't know how one can really differentiate between what could be caused by things that they are taking or doing when they are taking many, many things at once.
Perhaps it would help people who are doing many things at once to keep lists available of ALL the possible side-effects & symptoms of drug/herb damage for each thing they take and FIRST refer to them to rule these things out before assuming "it's just a herx".
Thanks for posting this and Carol, thanks for your remarks. It's helpful to know that I don't have to herx like heck in order to be getting better.
Ali
-------------------- Note: I'm NOT a medical professional. The information I share is from my own personal research and experience. Please do not construe anything I share as medical advice, which should only be obtained from a licensed medical practitioner. Posts: 4881 | From Middlesex County, NJ | Registered: Jul 2006
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AliG
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Member # 9734
posted
TDID-
Good point. There may be a lot of people who think that herxes get worse and worse when actually, they are supposed to get less severe with each one.
That's probably a good way to tell the difference. I think that if it keeps getting worse, we need to look for another reason besides "herx".
-------------------- Note: I'm NOT a medical professional. The information I share is from my own personal research and experience. Please do not construe anything I share as medical advice, which should only be obtained from a licensed medical practitioner. Posts: 4881 | From Middlesex County, NJ | Registered: Jul 2006
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tailz
Unregistered
posted
Good post. I have a problem with what many people on here are calling herxes, too.
When I started IV Rocephin, I could literally feel my sinuses draining. Within minutes my symptoms increased (stuffed nose from everything draining so fast, severe brain fog - I couldn't even yell at my doctor - ha ha). This was followed by more light-responsive pupils for a change and easier breathing. This was a herx, in my opinion.
Eventually though the improvement ceased, and I started feeling worse with each infusion. I personally think the pain that followed was from a yeast overgrowth - not a herx - as my doctor had me driving hours daily to receive the infusions (exposing me to electromagnetic fields), had me sitting under fluorescent lights when I got there (more exposure to electromagnetic fields), next to a portable heater no less - and I discovered I'm electrosensitive.
Same thing with minocycline. Within a few minutes of taking my first capsule - my ears began to drain and I felt light-headed. By the next morning - ouch - my shoulders, neck, head all hurt like someone had clubbed me while I was sleeping. I think this was a herx, because I did improve, though only after I detoxed some by stopping the antibiotic.
Like the Rocephin though - eventually, the more mino I took, the worse I felt. I don't believe this was a herx, but rather a yeast overgrowth.
I worry that people are calling reactions on here herxes, when in fact they are suffering from yeast problems or allergic reactions to the antibiotics that are giving them yeast problems.
I have trouble with Ceftin now, too. Am I allergic? I won't wait for an American doctor to tell me I am. What makes them an expert on any skin rashes I develop? They couldn't even agree on whether the rotting skin I had on me was eczema or psoriasis. Nor could they diagnose a simple egg allergy.
My advice - think for yourself. I will never put complete faith in any doctor to save me, no matter how many years of schooling they boast. In fact, I'm not sure I put any faith in them anymore. Last year I was dying, and not a single one cared - not a single one - and I can't seem to forget how they all treated me when all I ever asked for was their help.
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map1131
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posted
Some people are of the opinion that the harder the herx like reaction the better. I totally disagree. The reason I disagree is I lived it for about 2 yrs.
It is not normal or good for anything when people describe being in a constant herx reaction with abx. It is the body and all organs screaming HELP ME.
My LLMD used to say increase dosage to this dosage...until you feel better. I used to wondered when in the world is that day going to come?
This LLMD is also a strong believer in backing off when the going gets tough. He believed you can do more damage and have more set backs if you continued to take abx and try to kill all trying.
Even though he is my ex-LLMD (at this time in my life), he is one smart lyme literate MD.
Ali asked how do you know the difference between herxing and symptoms just getting worse? I learned the difference in my body and this is so hard to try to explain, but I did it after many months of experience.
Pam
-------------------- "Never, never, never, never, never give up" Winston Churchill Posts: 6495 | From Louisville, Ky | Registered: Jan 2002
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minoucat
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posted
I just want to add-- in my own experience, and from what I've seen with other people, sometimes the reactions to medications are more from detox overload than from a classic med reaction/allergy -- liver or kidney are unable to clear the toxins or the abx.
Meds that might be too much at one time might be OK when you're more stabilized or in a different situation.
I'm not advocating that you quit meds when they make you feel badly -- I've been through some difficult regimens that I'm glad I stuck with.
But I have almost no allergies and a teflon liver, and I sustained no permanent damage from my treatments.
Not everyone is so genetically lucky. What worked for me may be harmful for others.
Know yourself and your meds as best you can, is all I can say.
-------------------- ********************* RECIDITE, PLEBES! Gero rem imperialem! (Stand aside plebians! I am on imperial business.)
posted
This topic was of great interest to me. Whenever my daughter starts a new RX I read and reread the drug interactions and side effects and research. Well, her response is always the same........
Mom, how are we going to tell if I am having a reaction, a herx or what when I feel like I am dying all the time and already have all the symptoms mentioned anyway?
Good question, how do we tell? So if the RX doesn't sound too nasty she takes it, if it is a really bad one like this nasal pain med she just got (and refuses to use) sounded just too bad.
Hugs,
-------------------- ICEY Posts: 468 | From Las Vegas NV | Registered: Jun 2005
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sparkle7
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posted
This is a good topic, thanks!
I was told I had fibromyalgia for the last 10 years until I found out that I had Lyme all of those years - by getting a "negative" Western Blot.
I don't even know that I really have Lyme but my doctor seems to think that is the best answer to my health issues.
When I thought I had fibromyalgia they have several different treatments that supposedly make you feel worse, too.
One is called guaifenesin therapy. Going through the Herxheimer reaction supposedly happens from alot of remedies from fasting to abx... So, who knows?
Who actually know if this is really a fact - going through all this pain. Is there any real data about this? Can we even believe it if there is real data?
I've been on abx since last Feb 2007. I don't feel any better at all.
I think I even feel worse than when I started. I really don't feel like I'm getting anywhere with this.
I'm going to try the Dr. C herbal protocol when I get the money.
Posts: 7772 | From Northeast, again... | Registered: Oct 2006
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adamm
Unregistered
posted
So after a month headache-free and a weak on abx
I just got hit with the head/eye ache from hell. Herx?
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klutzo
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Member # 5701
posted
I had had some reactions that required a trip to the ER, but were rather strange in terms of symptoms, so I questioned if they were really allergic or herx.
I had read many things saying that most of these so-called allergic reactions are just bad herxes and mean that particular ABX is working.
I solved this question pretty easily, by making an appointment with an allergist and having skin tests done for allergy to all the different classes of ABX.
IMO, this is potentially too dangerous a situation for guessing games. Skin tests can be done in one easy appt. and then you know for sure either way.
I tested as severely allergic as you can get (+4) to all ABX except fluroquinolones, including a class of ABX I had not taken in decades, sulfa drugs. Good thing I did not keep taking some of those ABX I'd reacted to!
This enabled me to update my Medic Alert record, so medics will (hopefully) never give me something when I am unconscious that I am allergic to.
BTW, I strongly urge all of you to join Medic Alert and wear your necklace or bracelet at all times. I was injected with codeine once while unconscious, and the result was not pretty....kept me in the hospital for two days. I am very allergic to it. After that, I joined right away.
Medic Alert memebership is cheap and can save your life when you can't speak for yourself. It can get you your regular drug dosages too, while you are "out of it", so you don't go into withdrawl, or have blood pressure soar, or diabetes go out of control, seizures, etc. just because medical personnel have no idea you need certain drugs or have certain health problems. They can't read minds, after all. It will speak for you and also tells them who to contact, both doctors and family/friends.
Klutzo
Posts: 1269 | From Clearwater, Florida, USA | Registered: May 2004
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sparkle7
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Member # 10397
posted
re: headache from hell (adamm)
I'm not an MD.
I find all of this stuff rather disturbing since we don't really know the basics of this illness & we have to rely on what everyone is going through to guess what to do.
We're all kind of feeling our way through in the dark - so to speak.
When I first started taking doxy (back in Feb '07) I thought I was herxing since my body really hurt (mostly in the torso area).
It's like a sharp ache all over.
Everyone is different, though.
I was taking Minocycline since Sept 07 & I couldn't seem to get over 100mg a day since my pain level was pretty high.
My doctor suggested that I take 400mg a day over a gradual increase.
I stopped taking about 10 days ago & my whole right side of my torso - shoulder, neck, head, lower back went into spasm.
I could barely get up or move.
I have no idea what this is all about. It's hard to tell if anyone with chronic actually gets better by taking abx.
I was feeling about the same or better over the 10 years that I didn't do anything & thought that I had fibromyalgia.
I really don't know if taking all these drugs, especially abx, really does anything.
I read about some of the people on PICC lines & they don't really seem to be improving.
So, does going through all of this even cure anyone when you've had Lyme for over a certain amount of time, like 5 or 10 years?
Seems like whoever made up this abx protocol doesn't even really know.
Is there any real proof taking all these abx does anything except make things worse?
That's why I'm going to try the Dr. C herbal protocol when I can afford it.
It's about $350 for a month but it may be better than abx for me.
I don't usually respond well to drugs. I'm not allergic but I just usually do better with more wholistic remedies.
I just don't see how going through such a long term treatment with abx can be healthy.
They aren't really meant for long term use.
I can't afford to spend all kinds of money on tests that are inaccurate & on doctors who don't really know what to do to treat this illness.
I spent over $10,000 just to find out that I probably had Lyme.
There is something wrong with all of this...
Posts: 7772 | From Northeast, again... | Registered: Oct 2006
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minoucat
Frequent Contributor (1K+ posts)
Member # 5175
posted
Sparkle -- I can only speak from my own experience, and that of people I know well.
ABX have helped me enormously, and the hubby.
I have Lymie friends who have improved only marginally on abx. Two have recently found out that they have a genetic predisposition to massively messed up detox pathways, which apparently has been severely hindering the body's efforts to heal. They've both done the standard detox stuff religiously.
They're on different detox protocols now, definitely deep into woo-woo stuff. So far, so good for one of them, not yet clear for the other. The plan is to ultimately return to abx when they are able to handle them.
One of them is also trying a specific kind of oxygen therapy (can't remember the name of the machine -- it's not hyperbaric) that seems to be doing wonderful things for her.
So if abx are not working, you need to keep hunting for deeper causes.
I know, easier said than done. So few people understand anything about how to treat a body that has become profoundly dysfunctional, whether through disease or other causes.
Best of luck.
-------------------- ********************* RECIDITE, PLEBES! Gero rem imperialem! (Stand aside plebians! I am on imperial business.)
I am usually very sensitive to every kind of medicine. So in taking Mepron I was apprehensive.
From day one, my pain kept getting worse and worse from 30minutes - 5 hours after I took Mepron, about a 9 on a 1-10 scale. And then as the Mepron passed through my system, I was fine. Then again, 30 minutes after I took the Mepron, it all came back. Pain and fatigue that made it impossible for me to do things. It was far worse than anything I'd ever experienced with my "fibromyalgia" attacks.
But I continued enduring the pain,thinking it was a herx - worse before better.
However after 2 weeks of the same cycle - I have done some research and have seen Mepron was tested on patients with AIDS. It makes me wonder if the drug was tested on people with healthy immune systems to see their reactions. If there are studies, please let me know.
What made me stop Mepron completely today, was the heart palpitations that got worse each day. Even after I dropped my dose down to 1/4 teaspoon, I had palps off and on for 5 hours straight, big ones, with very few minutes in between: I was out of breath and dizzy.
I can't see how that is healing to my body or spirit.
I came across this in the older book "New Choices in Natural Healing" on page 67 under homeopathy:
"Dr. Hahnemann found that large doses of the drug," (quinine, a Peruvian tree bark,used to treat malaria) "had unexpected effects. After taking massive doses of quinine for several days, he developed trembling, heart palpitations and other symptoms of malaria. As soon as he stopped taking the drug, his symptoms disappeared. From this experiment, Dr. H developed his belief that "like is cured by like," also known as the law of similars, which is the basis of homeopathy."
(sorry for any errors in copying)
Anyways, what I gathered from this, for myself personally, is I am taking my Mepron in too high of doses for my body to regulate. I am getting the same symptoms. If "like is cured by like" than taking anything in large doses is going to cause more symptoms like the disease it was formulated to eradicate.
I wanted to share that with you, in hopes it might help.
As for me, I'm seeing my doctor tomorrow, and letting him know I can't continue to put that kind of strain on my heart. Before Mepron, I had palpitations about once or twice a month for just a few fleeting seconds. My body's talking to me.
Thanks for listening & for the post.
Marcelle Posts: 38 | From Lincoln, CA | Registered: Nov 2007
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randibear
Honored Contributor (10K+ posts)
Member # 11290
posted
this is a wonderful and very informative post. i react strongly to just about any medication.
i can't take tetra because i break out in large red and purple blotches. so i assume it's an allergic reaction and not lyme.
most painkillers, instead of reducing pain, give me severe migraines. everything from just mild tramadol to vicodin and phernagan. so they're out.
the only real drug that helped my lyme was flagyl and i really herxed on that about day 4. but after a couple of days the headache started getting less and less. unfortunately i can't find a doctor to give it to me.
and now with c. difficile or colon problems, i've been told to stay away from all antibiotics.
i tried doxy and couldn't breathe, i felt like my throat was closing up and i was bouncing off the walls.
i don't know if all these reactions are because i have lyme or i'm truly allergic to these meds.
it's hard, it really is, because i hate to spend money and take one pill and then have to just put them away because i'm afraid to take them again.
a herx is an increase in lyme symptoms right? so i'm figure mine are mostly allergies.
but how am i supposed to KNOW?? that's my problem, i can't figure out the difference....
-------------------- do not look back when the only course is forward Posts: 12262 | From texas | Registered: Mar 2007
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sparkle7
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posted
Hello minoucat- how long have you & the people you know been ill for? I think this can make a difference, too.
I was very hopeful that the abx would cure me due to what I've read & how people supposedly responded.
I've been ill for 10 years not knowing it was Lyme.
Sometimes giving people larger & larger dosages of drugs just isn't the route to go.
Each of us are different.
I just can't see how wiping out all the intestinal bacteria can be a good thing for immunity- even if you take probiotics, etc.
Antibiotics just aren't made for taking over a long period of time.
I'm sure they help some but how do you know the people who are "cured" won't get ill again at some later date?
Or have some other reaction like loss of eyesight, heart problems, brain problems like alzheimers, etc. due to there still being some spirochetes, L-form bacteria, or cysts embedded in the tissue, in between cells, etc.
I've heard this "gets worse, then better" stuff for along time for all kinds of illnesses from candida to guaifenesin protocol for fibromyalgia to Lyme.
Maybe it's all a big myth?
There are so many opposing theories about Lyme - how can you tell if anything is true.
Maybe the anti-ILIADS camp is right?
Maybe the antibiotics don't work for chronic Lyme?
Just some thoughts - I'm not trying to be provocative or pessimistic.
I just haven't seen any evidence that using abx really cures people who have had Lyme for 5, 10, 20+ years that haven't been treated at the early stage.
Are there any statistics that I'm just not aware of?
Posts: 7772 | From Northeast, again... | Registered: Oct 2006
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minoucat
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Member # 5175
posted
Of course you're skeptical. You'd be nuts not to be. A healthy skeptisicm is --- well, healthy.
The hubby and I have had LD for 20 years. I've worked through most of it, with periods of disability. I've done a lot of abx, but have only been treated for the full range of coinfections for the past 3 years. I use abx, herbs, sauna, and Rife.
The hubby was completely bedridden before we went to our current LLMD 3 years ago, and I truly believe that he would have been dead within the year if I hadn't found our LLMD and his abx protocol.
I was too sick to work, or drive, or have anything approaching a normal life. I am hugely improved and I think I may be able to return to at least part time employment next year.
I'm a classic "good responder" on abx. Treatments that worked on me did not work on the hubby.
There's no point in generalizing treatment to "people" when it comes to LD. A certain percentage respond to abx IF they get the full treatment they need. Within that group, some abx work well for some folks, and not at all for others.
A certain percentage seem to do well on Rife, or herbs, or a combination of these. At least one Lymenetter who seems to be extremely reliable and honest has had success on the MP. And if you look, you'll find people who did badly on each of these treatments.
And a certain percentage have a genetic makeup or other underlying dysfunction that makes it very difficult for their body to detox and rebalance itself no matter what treatment they are on.
If you find the right health practitioner to work with, it seems this problem can be overcome -- at least, that's what I'm currently seeing in a good friend of mine.
I'm personally no longer looking for a cure for Bb (I do seem to have cured the other coinfections -- at least I haven't had any symptoms of them for over a year).
I'm counting on abx to get me to a point that I can control the Bb using other means, and I expect I will have to stay on some kind of treatment, including periodic abx, for the rest of my life -- minimally, I hope.
The same principles that apply to judging herxes apply to finding treatment -- know the side effects of the treatment, talk to as many people as you can about their experiences, keep detailed notes and check back to track progress (or not) , and pay close attention to your body and your intuition.
You have to find a treatment that works for you, and at this point no one really knows what that is. We're all doing trial and error.
Which is why it ticks me off no end when someone gets on an endless soapbox about what everyone else should and shouldn't do. What we need now is detailed information about individual experiences with a variety of treatments -- not opinions on what should or shouldn't work.
Just editing to add -- I'm not aiming that comment at you, Sparkle. Your concerns are valid, and it may be that abx are not the right treatment for you at this moment.
It took me 17 years to find a treatment combination that worked -- I consider myself an early Lyme pioneer, because it was through people like the hubby and me that the LLMDs found out what wasn't working.
You're a later pioneer -- some of the signposts are up and a few bridges have been strung, but no X marks the spot and there still be dragons. It takes a lot of guts to cover this territory in our tattered little wagons with the oxen gone lame and supplies running short....
Good luck, and hang in there.
Just editing again (sorry, I don't mean to hog the forum) to add this: Just because a treatment feels lousy, and just because it leaves you with life-long after effects, and just because it's not a complete cure, and just because better treatments evolve later on, doesn't mean that it's the wrong thing to do AT THAT TIME.
My dad had advanced prostate cancer, and went through 2 rounds of chemo and radiation. It left him with an enlarged prostate, which is manageable but not real comfortable. And it was so terrible he told me he'd never ever do it again, no matter what the prognosis.
BUT -- he recovered well and has had at least 10 high-quality years added to his life because of the treatment. His doc told him, "you will die with prostate cancer, but not because of it."
They've since found a better, less damaging treatment.
As far as I'm concerned, it's a win.
You gotta take your best, most educated guess and be prepared to adjust your course.
TheCrimeOfLyme
Frequent Contributor (1K+ posts)
Member # 4019
posted
The only way I found to get around this was to keep a journal, day in and day out. I went to the dollar store and loaded up on a few simple ones.
When I first started treatment, my brain, body, muscles, you get the picture, was all over the place. I didn't know a herx from I'm dying. However, I wrote in that book anyways and in the third month I reviewed it ( as symptoms let up)
and noticed that I had TWO flares each month, one on the 28th day and one around my period. So from that point on,
I counted 28 days , took my abx and waited, and sure as chit, it would start all over again.
On my sixth month in treatment, I switched LLMD's. I lost my 28 day cycle and went into a continuous cycle of he*l. I had rashes, itching, severe migraines all over again and then developed
allergies or intolerances to everything. What I thought was one continuous herx began to extend into food. I could get the SAME thing to happen if I drank WATER as compared to if I took an abx-
within the hour, my head and neck would hurt, my vision would go out, and I wouldn't be able to walk.
My llmd kept saying herx. I kept saying something more. I was right. I had leaky gut ( medically proven) and my autonomic nervous system crashed and replaced itself with NMH.
It took me years to come out of that. years.
Be careful. Watch your symptoms. Write them down, all the time, including what you took.
I can backtrace the start of my problems ( ESPECIALLY my heart problems) to the use of quinine. Thats when it all started for me.
-------------------- You want your life back? Take it. Posts: 3169 | From Greensburg, Pennsylvania | Registered: Jun 2003
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sparkle7
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posted
Yes... I'm not anti-allopathic medicine. My mother was cured of 4th stage lymphoma with chemo.
This whole business of Lyme really stinks to me.
Every step of the way there are serious issues from insurance to testing to treatment.
Why is disability being denied & people are told that they aren't really ill.
Many people here don't get better or do well on abx & all the herxing.
I guess that's why people (maybe) get rich writing books on alternative therapy - Rife, etc.
All of this stuff is untested & we basically have to figure out a way to do "do-it-yourself" therapy.
This illness has been around long enough for there to be some standards & protocols that are actually proven.
Is there any real statistics of whether the abx actually work?
If we don't even have an accurate test - how do we know anything about what we are treating?
How can you cure an illness when everything is a guessing game.
Maybe the people who don't get better from the abx don't really even have Lyme?
Maybe they are ill from something else?
There's no way to tell.
Posts: 7772 | From Northeast, again... | Registered: Oct 2006
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map1131
Frequent Contributor (5K+ posts)
Member # 2022
posted
No, they quite possibly have lyme. BUT, what else is the immune system fighting. The lyme itself can get better and it's not as bad if you are ridding the body of the other thousand of toxins that have invaded it due to life style, enviroment, super bacteria, parasites, unknown viruses, etc.
Personally I didn't know which way to go after I spent a year doing rife machine treatments for lyme, babs, bart & co. Then I found the key for many unknowns and rife treatments with some other protocols and here's my list:
yellow fever hepatitis tetnas hong kong flu rickettsia (RMSF) staph e-coli strep chlamydia malaria diabetes cystitis parkinson typhoid
Now I did NOT have all these bad guys, but the rife freqency protocol in my rife book was what my body muscle tested that it needed. Yes, it was in a specific order and these was over a one year period.
With everyone of these steps in my treatment, afterwards I would feel stronger and better. Am I cured? Not yet. I'm still in the process of eliminated what we hear often today super bacteria & toxins that give to cause to continue to seek answers.
Based on my research and what I've learned from many on this board, I'm still dealing with the lyme bacteria, the bartonella bacteria, the rickettsia bacteria.
I've been positively rebitten by 6 ticks, 2 brown recluse spider & ? in the last 3 years. My original illness goes back to '98.
Yes, I'm removing my many many many silver fillings from my mouth. One by one over several months. My one root canal molar will go then.
All I know for sure is my story. I know what I've learned, failed, learned, failed and at this time I'm holding my own. I have really good days. I also have some bad days. But I hope I never return to where I was 4 yrs ago, because whatever it was I was dying a slow death at the age of 45 yrs old.
Pam
-------------------- "Never, never, never, never, never give up" Winston Churchill Posts: 6495 | From Louisville, Ky | Registered: Jan 2002
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