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Old 09-30-2005, 05:54 PM   #1
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Question What is a die-off?

What is a die-off? How long does it last? What causes it? Can garlic do it? Anyone ever use Spiro-Kete by Kroeger Herb? Will that bring on a die-off?

Also, what does one do during an episode? Doxi? Why does one need to detox and when? How often do you take antibiotics and for how long? I have heard of pulse-dosing to keep the bug at bay. Does this work, and if so, how is it done?

Basically, I want to be able to tell the differnce between an active lyme episode when spirchettes are out of their cysts and on the attack, and a die-off, which is, from what I have been told, when the body or a substance is killing them. Die-off 101 Class is needed. THANKS

 
Old 09-30-2005, 07:08 PM   #2
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Re: What is a die-off?

IckysMommy
I have had lyme disease for 17 years, but only in the last 6 months have learned what it really is. Like you, I was a newbie to this board about 2 wks ago. At the top of the board you can type in topics and then lyme disease. Type Herx. There is alot of info, I have learned alot from the other members. They have helped me and made me feel welcome.
In general, a die off is when you kill the ketes. (usually antibotics, different strains of lyme require different meds. trial and error) Some on here used herbs. Im on ivs, just started 2 wks ago, already had to go off on holiday for 3 days to let my body get fluids from dehydration) The dead ketes then are toxic (actually poision your body). Any symptoms you have will become worse. I haven't had a kill off or herx since my initial infection 17 yrs ago. I herxed then and can remember the problems well. I went to er thinking I had a reaction, rash over my body, horrible head and neck pain, intense achy feeling. The er dr thought I had a reaction too and took me off meds. My lyme was left to run rampant which it did.
If you are not seeing a LLMD (lyme literate medical dr) see great dr threads in the top 3 selections when you enter lyme site. Have you been tested, and how? Results?
Tested for co-infections? I'm not an expert, but I will help you with any answers I can. Marsha

Last edited by Pearlscale; 09-30-2005 at 07:13 PM.

 
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Old 09-30-2005, 08:06 PM   #3
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Re: What is a die-off?

Hi IckysMommy,

Welcome to the Board! It's good to be curious as that's how we all learn.

From my understanding, a die-off is when the Lyme Bacteria (also known as Borrelia burgdorferi or Bb.) is in the process of being killed. What kills lyme spirochetes? Many use antibiotics (what work for some may not work for others), and some like myself use alternative medicines such as Liquid Samento (TAO-Free).

Back to the die-off: when the spirochete is being destroyed it transforms into a toxin which is released into one's body, the toxin then can cause a Herx (the Jarisch-Herxheimber Reaction). A herx is not pleasant but "good" because one knows that their medicine is working! There are medicines that lessen the effect of a herx.

Interesting that you brought up Garlic. Before I was diagnosed with Lyme, I had strong urges to eat raw garlic, lots of it. I didn't know why, but I did. I found out later on that garlic acts like a natural antibiotic. So my body was telling me that something was wrong from the very beginning. Garlic alone will not kill the lyme spirochetes.

Are you asking for yourself or for a family member? If you suspect that you may have Lyme, it is best to be tested by a reputable laboratory such as IgeneX Labs, located in Palo Alto, CA and to be seen by a LLMD (Lyme Literate Medical Doctor). Many doctors do not have the knowledge to treat Lyme Disease nor do they understand it.

Most people who are infected with Lyme are also coinfected with Babesiosis, Ehrlichiosis, Bartonella, Mycoplasma, etc.

We hope to hear more from you so we can support you and share our stories with you, this is a wonderful site with compassionate and helpful people!

Marsha, seaching these threads is a wonderful tool! Thanks for bringing that up as there is much information in these threads (posts).

I hope I helped a little bit,
Denise

Last edited by deejavu; 09-30-2005 at 08:08 PM.

 
Old 09-30-2005, 08:48 PM   #4
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Re: What is a die-off?

Hi Marsha,

I just reread your post and 17 years is so long to be sick, my heart goes out to you.

Marsha, did you know there a products that help lessen the effects of a Herx? You don't have to suffer as much as you may think. Detoxing as you are on IV is very helpful. There are so many products out there.

Are you taking anything to clean out your internal system. There are also the Detox baths (I don't take them because of my hot water situation, LOL!), but people swear by them.

I was taking an Aloe Concentrate which really helped me and now I am taking a new product (one I bought off the "net" before I became flat broke) and that's better than the Aloe Master.

Hope you feel better!
Denise

 
Old 09-30-2005, 10:49 PM   #5
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Re: What is a die-off?

Hi Deejavu,
Thank you for the explanation. More questions:

How does one know whether they are experiencing a lyme attack or a die-off? What are the major differences, if any?

How often do you use your particular substances (antibiotics/herbal remedies) to killing the bacteria?
How long do you use the substance for? Do you do cycles of them? Details please.

Should these 'treatments' always be followed by a detox? If so, are there herbal formulas that can do it instead of baths and saunas?

Some of you have been working on this for years. I don't understand why it should take so long. How long does it take to kill all the lyme bacteria?
Perhaps it depends on severity of infection?

I am not asking for myself, but I am asking because a loved one is suffering from it. I would like to learn more about the disease, as he is sick right now and our natural practictioner says "no antibiotics!" (use BioActive Lym D-HP, among other things) while our allopathic wants to use antibiotics. Last time we used them, there was a 'herx' reaction, but we did not know to follow with a detox. Now I am uncertain if the current episode is a Lyme 'break out' or a die-off as we are using natural remedies to address the spirochettes, but nothing for the detox that is supposed to follow.

So again, how do you know if what is being experienced is the lyme itself attacking the system, or the toxic result of killing it off?

Thanks

 
Old 10-01-2005, 04:23 AM   #6
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Re: What is a die-off?

Hi IckysMommy,

In my eyes, a "lyme attack" is when the Bb spirochetes is attacking one's body. In my case, the Bb's would attack my legs as they would throb and ache from pain. I have Ehrlichiosis and Lyme, and when the spirochetes act up, my "non-production" cough would start up, it's annoying because I feel like I am choking. That's an attack. Member who are coinfected with Babesiosis get attacks of heart palpitations, migraine headaches, vision problems, and other things.

The Die-Off (or Herx) is different because I know it is a reaction from the Medicine. One has to know their own body and lyme symptoms. When one is first infected with Lyme, they get many symptoms before they start any treatment protocol. I was extremely fatigued, sleeping all the time, having the leg and knee pains, brain fog, and the list goes on.

When I started on the Doxyclycline, I would sweat, feel sick in a different way (that was herxing). So the bottom line here is that one has to know their own body to know the difference.

When I was first diagnosed (after 5 years of going from doctor to doctor), I took Doxy for almost a year and that helped me tremendously. Sadly, even though my doctor knew I was coinfected, he did not treat me aggressively which is why I am still sick.

Because of my lack of money, I had no choice but to use the Alternative Medicines. I first bought a book (I highly recommend this book to everyone) called "Beating Lyme Disease, Using Alternative Medicine & God-Designed Living" by Dr. David Jernigan.

Dr. Jernigan designed his own products that I buy directly from him. I take his medicine every day, 3 times a day. He has his own protocol of healing (there is a chapter in his book called "Healing at Home"). I am amazed at how much his products have been helping me. Then I wanted to add another product (this is not in his book) called Liquid Samento from Nutramedix. That is also helping me.

At the same time, one must detox whatever medicine they are taking because as those spirochetes are being killed off, the toxins that remain must come out of the body or they cause a major Herx and do more damage internally.

I personally am using an Intestinal Cleanser to clean out my toxins as I can't afford to do the Detox Baths. It's working for me as I am cleaning my "guts" every day so to speak. I found out that our intestines range from 30 to 35 feet long inside our bodies and toxins can stick to the sides of our intestines so I love this product I am taking. It's like a Colon Cleanse.

Sorry that your loved one is sick, was he tested for coinfections? That is really important as you should know what he is dealing with so he can fight it properly.

The members that have been sick for many years have mostly been misdiagnosed so all those years of lyme spirochetes build up in the body so it takes longer to destroy them.

Since your loved one did herx from the antibiotics, I think that was a Positive because the antibiotics were working. But without detoxing at the same time, it's not good enough in my opinion.

I really suggest buying Dr. Jernigan's book as it has so much information and explains everything that is going on inside our bodies.

Once again, one knows the difference between an "attack" and a "herx" if one knows their own body.

I don't know if I helped, maybe some other members can explain it better than me.

Keep asking away!
Denise

 
Old 10-04-2005, 11:14 AM   #7
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Re: What is a die-off?

Deejavu,
Thanks greatly for the information. Your description of what Lyme attacks are for you, verses die-offs, was very helpful. It helped me to differentiate my guy's episodes by his individual symptoms, which I also correlated with antibiotic treatment and his reaction to that.
So, if my understanding is correct, not only does one detox and feel lousy after a round of antibiotics, but they also may feel worse during the antibiotic treatment itself? Is that right?

Hal has been tested for every other tick disease possible, and then some. He was on antibiotics for quite a while before he was diagnosed with Lyme (because of Lyme related problems) and then couldn't tolerate the doxy when he was finally correctly diagnosed. We went natural at that point and that first week, he had a detox affect that was scary, mostly because it was unexpected and we didn't understand what was happening.

Fortunately, I have an extremely brilliant herbalist who is helping us, as well as a doctor who is very knowledgeable about Lyme and has it himself. He is a holistic practitioner who advised against the use of antibiotics during the detox reaction (he called it a 'healing crisis' rather than a herx, but did say that Hal was detoxing). Your explanation of WHY the detox is important and what it accomplishes is wonderful. That was never explained to me.

I'm encouraged by your Intestinal Cleanser. Hal also cannot do the baths, but I can give him Colon Cleanse and our herbalist advised he drink loads of water while on antibiotics and use probiotics during this time as well. The doctor prescribed nosodes, an 'alternative' medicine. Your lack of money problem may be a blessing in disguise. I find natural medicine to be very effective for so much, but this Lyme bug is a bear! Hal is also taking colloidal silver as a combatant, and an herbal combination from Kroeger called Spiro-Kete.

Iím hitting the bookstore this week and will definitely check out Dr. Jernigan's book. Thank you for the recommendation. Thank you also for finally clearing up the mystery as to why each person requires different durations of treatment. However, I still wonder why antibiotics don't knock it all out, regardless of the number of spirochetes built up...? Is it because of the cysts, which I've read are 'immune' to the effects of the medicine? If so, there must be a way to kill cysts. Both cortisone and alcohol work for cysts... Know anything about that?

 
Old 10-04-2005, 03:35 PM   #8
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Re: What is a die-off?

Hi IckysMommy,

I am happy that I was able to shed some light on your questions.

Yes, I agree with you that not having money forced me to take the Alternative Route as it is working for me!

It is wonderful of you to look after Hal, I am completely alone with this disease except for this Board.

As far as Cysts, I honestly don't know much about them except that those lyme spirochetes want to hide from the medicines so they form a "cyst" to protect themselves. What can break through those cysts? I don't know, I wish I did.

Now you have caused me to become very curious about Cysts and what does destroy them.

Sorry I wasn't much help. We are all learning and the more we learn, the better we can understand this complicated disease.

I can't wait to hear how you like Dr. Jernigan's book, he is some terrific doctor and looks at this disease completely different compared to the "conventional" doctor.

If I find out more, I will let you know......

Denise

 
Old 10-04-2005, 04:01 PM   #9
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Re: What is a die-off?

Hi IckysMommy,

Deejavu is right about knowing one's body. I can only tell you my experience. I was bitten in August 2005 and believe I was reinfected (I was diagnosed in Oct. 2004 also, but was feeling great during the summer until then). When I have a lyme attack, it seems to hit my shoulders and hips and that goes away within a week of abx. Although this time have been getting little pains in those areas now and then, but not like before I started the doxy. I'm about 3 weeks into doxy (only 200mg per day) and am in agony. I think my die-off tends to go to my neck where I have a herniated disc and a couple bulging discs. But my neck isn't in that bad of condition that I should be in this much pain, so I really think it's lyme related and maybe the die-offs to pool in this area. That's just what it feels like, anyway. I went to a physical therapist for the first time yesterday and here's a twist. He actually thought the lyme is causing the neck problems. This happens every time I do a 30-day round of doxy. My heels hurt a little and that only happens when I'm on abx, also.

I'm in so much pain I called the chiropractor and hope to get in by Thursday. I just feel like I want someone to push down on my upper back and pull on my head to relieve pressure. I'm also trying detox baths and a detox drink a nutritionist recommended. I think I just have to ride it out for now. I've tried everything I could think of.

I also wonder if I had spirochetes from the prior infection that are being killed off. This disease always has me wondering and second guessing.

My son isn't in any pain, but I'm giving him samento and keeping his immune system strong with vitamin C supplements and silver hydrosol (something the nutritionist recommended).

Truthfully all these supplements and detox things are making me crazy because I forget what to take when or remember to take them at all.

One thing the physical therapist said to me that bothered me is that he says maybe it's the abx. itself that's making me feel like this. As if I don't have enough to wonder about. Now I have to wonder if I'm making myself sick by taking medicine. I think I'll go with the belief that I am having die-offs. In a few days I should be feeling better. I also mentioned to the LLMD that I was extremely tired once I started the abx. and even his said it's pobably the medication. The medication how?? I'm not really sick and it's making me sick or I'm sick and it's a reaction because it's working?

 
Old 10-04-2005, 07:53 PM   #10
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Re: What is a die-off?

Hi IckysMommy and welcome! I'm not feeling great right now but I'll try to be clear.

I take antibiotics and natural supplements, not by an educated choice, but because that is what my LLMD recommended and I was so sick that I just went along. It seems to be working a little bit, so I've stayed with it.

From what I've learned (and I am NOT a health professional), antibiotics kill Borrelia b. bacteria during their cell division by rupturing their cell membranes. When this happens, toxins (actual poisons) are spilled out into the surrounding tissue. This may cause existing symtpoms to become worse or may cause new symptoms to appear.

The Lyme bacteria have a life cycle of approx. 2-3 weeks. So if a Lyme patient experiences a cycle of feeling horribly sick, this may be a die-off. Die-off's like this are called Herx's. "Herx" is a slang term used for the names of the physicians who first recognized this. I think Deejavu already mentioned this.

I keep a daily chart of how I feel. Over the past months I have been able to see a pattern roughly corresponding to the 3 week cycle.

Each body is different: we all start out with different immune systems, our genetic make-up is different, our medical history is different. Not everyone experiences a Herx.

I happen to be able to recognize mine. I have certain symptoms when I'm Herx'ing that others don't. Someone else may not ever have a Herx and recover from this insinuous disease.

I will echo the other replies and highly reconmend that the the person with Lyme (or suspected Lyme) see a Lyme Literate Medical Doctor (LLMD).

I hope I made sense. I wish I could write more but I'm just not up to it. Let us know how things go.

Peace and health to you.

 
Old 10-05-2005, 04:39 AM   #11
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Re: What is a die-off?

Hi all,

Ciconner, I am wondering if you are feeling so sick from the antibiotics because you are not detoxing enough. I really believe that detoxing one's body is just as important as the Antibiotics (or whatever medicine one is taking) because the medicine goes hand in hand with getting rid of those toxins.


6Blues,

I think you explained it really well. I did a little bit more research on the Lyme "Cysts" and from what I understand, a person needs 2 forms of antibiotics to get through those "cysts" and kill off the Bb's.

So I guess the bottom line is to be treated aggressively. Goodness, what a disease!!

Denise

 
Old 10-07-2005, 12:34 PM   #12
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Re: What is a die-off?

Deejavu,

I feel better, but I also stopped the abx for two days and did try some detoxing (not enough I'm sure). Haven't started the abx. again yet. Thinking of just detoxing for now.

Here's a new symptom, though--me, distance runner has sore thigh muscles. Haven't run in a week and when I did, didn't have any muscle pain. Also legs felt very weak like I would collapse.

But anyway, if the abx. is making me like this does that mean it is a herx and I still have lyme (or reinfected-deer tick bite in Aug 2005). I get this every time I do the doxy even though it is only 200mg per day and this happens 10 days to 3wks after I start taking it.

This time was the worst. I thought I was going to die of a stroke. My weight went up 5lbs. and after 2 days off I am 4lbs down. Weird. Also I went to the chiropractor yesterday. My neck still hurts, not as bad and my eyes don't burn and not tired.

 
Old 10-09-2005, 07:29 AM   #13
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Re: What is a die-off?

Hi Ciconner,

I don't know if you are experiencing a herx. I think you should stay on the antibiotics and take the normal dose of 400 to 600mg's every day without taking a break from them. (I am assuming you are talking about Doxy).

Detoxing at the same time is a good idea because is does lessen the effects of herxing because you are removing the toxins from your body as the medicine kills off the bacterias.

In my opinion, 200 mg is not going to accomplish anything. It's just not strong enough to kill those nasty spirochetes.

The lyme bacteria's do not get killed off so easily, it takes quite a while especially since you were reinfected this past August. Are you seeing a LLMD that was recommended by Ticker?

Denise

Last edited by deejavu; 10-09-2005 at 07:30 AM.

 
Old 10-09-2005, 09:10 AM   #14
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Re: What is a die-off?

Hi Deejavu,

I couldn't handle even the 200mg of doxy a day. I felt ok Friday, but by Friday eve. I was fatigued and had so much pain in my neck. I did the bath Friday and felt worse after. So Friday night I was alternating ice and heat on my neck. Saturday I got up at 6 a.m. because I could feel if I didn't get up and treat the pain I was in, I was going to end up in bed and puking all day. If that happens, then I can't take anything at that point and have to ride it out. I was considering going to the ER if I got to that point, but waiting to be treated is just as bad.

So I got up, started with ice on my neck, 500mg naproxen and muscle relaxants and percocet in between. I almost got to the point that I thought I was going to be sick all day. I know, it sounds like all those pills should make me sick, but it's the pain behind the eyes that makes me start to feel sick. The pills kicked in after a few hours and I felt some relief. The pain was with me all day and I had to take more medicine if I felt the pain behind the eyes. I had to keep heat on my neck all day and fell asleep in the recliner.

I think it's a herx because the abx. get rid of the joint pain. This time it took a little longer and about 10-14 days later I feel like someone hit me at the base of my skull with a lead pipe. The pain gets behind my eyes. My neck pain is a constant, always stiff. I had to stop the abx. I have been doing detox drinks and baths and today feel a lot better.

No one seems to recommend the LLMD I go to, even my chiropractor recommended someone else. He gave me the number of a Vector-borne disease cosultant who is vice-chairman of the governor's lyme disease advisory council. Also, I heard the LLMD in Jackson is very good.

I don't have any problems with the abx. as far as stomach or female problems, just intense fatigue and pain from the neck up. Also a little pain in my knees (which I don't normally have unless I'm on the doxy and a little pain in the heels). So if 200mg is not enough, I hope I'm not just aggravating these bacteria and making them more fierce. Maybe they go running to my neck and not getting killed at all. I really don't want to think in those terms, kind of scary. But then that would go along with your thought of this not being a herx at all.

What I need to do is go to a specialist who can interpret these symptoms. I know it's impossible to know exactly what's going on, but if I see someone who might understand what is going on with me and this 200mg of doxy I was prescribed. That's all I was ever prescribed at any given time. And of course the tests are now coming back negative, but I haven't been getting tested regularly. I need to check on the last lab work I had. The LLMD told me to come back in 6 weeks, but I'm hightailing it to another specialist.

 
Old 10-09-2005, 09:42 AM   #15
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Re: What is a die-off?

Dear ciconner,

I hear you loud and clear. I would probably have trudged along with this for another 5 years if Ronnie hadn't had his meltdown over my illness. It's real funny that although I was trying to avoid spending anymore money on doctors than I already have I feel at peace with my decision to go and see Dr. Crist. I think we all just sit back and put up with the pain, discomfort, and all the other symptoms thinking sooner or later it will all go away. In reality it won't.

I hope I get some resolution with Dr. Crist and can get on a healing path. I have been going through this continuously for 5 years and it isn't fun. Don't kid yourself and think it's age. I have laughed in the past about people who are 30 saying they just chocked it up to getting old. What are they thinking. I never felt really bad until this started at 52 and at the time nothing was slowing me down. I didn't even see a glimmer of slowing down. You can be 80 and not feel as bad as I have for the past 5 years. Everybody needs to stop kidding themselves and realize it has nothing to do with age it is the bacteria.

You should get some help and positive testing and then go from there. I don't know what direction I will go in, traditional, natural, or a combo but I do know that I will feel better just knowing what's going on. There is still that outside chance this isn't lyme but I will deal with that when and if it happens. I hope you can find out what is ailing you and form a plan. Good Luck.

Maureen

 
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