posted
Ok I really hope I make sense when I ask this.
So I know that Lyme has a cycle.. what exactly is this cycle? when I feel really really bad every 4 weeks what exactly is happening?
My understanding is that the lyme is changing from one form to another and its going back into the blood stream where it is getting killed off by the abx is this right?
If this is the case during the other weeks when its not in the blood stream am I still killing it off with the abx? or is it only getting killed off when it comes out to play?
Posts: 574 | From Out there somewhere | Registered: Jul 2010
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posted
I don't know, but I know that my LLMD said that when I got to the point that I was only having symptoms during that flare and not at other times, he was just going to treat me during the flare and not when I was symptom-free.
I ended up finishing with a different treatment, but that was the plan.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
You will have a lyme flare every 4 weeks. A flare is an increase in symptoms. Lyme docs are guessing as to what is happening during these flares.
Babesiosis has a 7-day cycle. I flared every 7 days like clockwork when I began treating babesiosis.
Docs do not believe the 4 week flare is lyme changing form and going back into the blood stream. They think it relates to lyme's growth cycle.
Anyway, antibiotics are not only in your bloodstread. They are virtually everywhere in your body. They are hopefully getting into every part of your body so that the lyme is killed.
Typically, antibiotics can only kill germs when they divide in order to multiply. In order to multiply, one cell starts "stretching" into 2 cells. At the point its cell wall breaks apart to form the 2 cells, that is when the antibiotic can get inside the germ and kill it. So, every time the germ divides, the meds get in and kill it.
The blood stream is just the transportation mechanism for the antibiotics. The blood stream is not the only place where killing takes place. If it were, germs would live in your body forever. No, your immune system and antibiotics go after germs no matter where they are in the body.
This is simplified, of course. It is difficult to get to some spots in the body that have very limited blood supply, and also difficult to get into the brain because of the blood-brain barrier.
Here is what Burrascano hypothesizes is happening every 4 weeks:
"It has been observed that symptoms will flare in cycles every four weeks. It is thought that this reflects the organism�s cell cycle, with the growth phase occurring once per month (intermittent growth is common in Borrelia species). As antibiotics will only kill bacteria during their growth phase, therapy is designed to bracket at least one whole generation cycle. This is why the minimum treatment duration should be at least four weeks.
If the antibiotics are working, over time these flares will lessen in severity and duration. The very occurrence of ongoing monthly cycles indicates that living organisms are still present and that antibiotics should be continued.
With treatment, these monthly symptom flares are exaggerated and presumably represent recurrent Herxheimer-like reactions as Bb enters its vulnerable growth phase and then are lysed. For unknown reasons, the worst occurs at the fourth week of treatment. Observation suggest that the more severe this reaction, the higher the germ load, and the more ill the patient." ([p. 17)
Now, it is hard for me to believe that all of the lyme germs throughout my body are all dividing at exactly the same moment in time, every 4 weeks. If that were the case, then why do I herx 3 days after starting a new med? A herx is a build-up of poisons from the dead lyme germs--dead because it was killed by the antibiotic.
So, when I first start taking antibiotics, I kill a bunch of lyme germs after 72 hours to the point that I have a herx. That means that the germs were definitely multiplying when the med reached the killing level in my blood. So, then what? They don't multiply again for 28 days? Don't know.
Posts: 9931 | From Maryland | Registered: Dec 2007
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"It has been observed that symptoms will flare in cycles every four weeks. It is thought that this reflects the organism�s cell cycle, with the growth phase occurring once per month (intermittent growth is common in Borrelia species). As antibiotics will only kill bacteria during their growth phase, therapy is designed to bracket at least one whole generation cycle. This is why the minimum treatment duration should be at least four weeks.
.So then this is my question. If abx will only kill bacteria during their growth phase then when I am feeling the worse (every 4 weeks) then this is when I should be pounding the abx instead of thinking well maybe since I feel so bad I will cut back?
quote:Originally posted by TF: .
Now, it is hard for me to believe that all of the lyme germs throughout my body are all dividing at exactly the same moment in time, every 4 weeks. If that were the case, then why do I herx 3 days after starting a new med? A herx is a build-up of poisons from the dead lyme germs--dead because it was killed by the antibiotic.
That's what confused me as well..except my herx started 7 days after I started the abx but the funny thing is that my cycle started 4 weeks after that again. So is it just coincidence that when I started the meds It just happened to be during a growth phase? [/QB][/QUOTE]
Posts: 574 | From Out there somewhere | Registered: Jul 2010
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TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
No, it's not a coincidence. I believe the lyme is multiplying all the time. Then, the first time we go on meds that kill it, once we get enough meds in our bodies to be a killing dose, it begins killing the germs like mad.
That causes our first herx. Every day the germs are multiplying, so we are herxing. So, some herx for a week and some for 2 weeks.
That must take care of a huge number of the lyme germs. The ones left must be the ones that just divided before we started the meds. We have to wait around 28 days before we can kill them.
So, I guess by us taking meds, we end up only with the germs that just divided. Hence, the 28 day cycle from then on.
If your herxes are so bad that you are cutting back on meds those days, then you probably need to continue to do so. We do not want to kill the patient in the healing process, you know.
However, once you get to where you don't need to stop or cut back on the dosage, then you know that your germ load is greatly reduced.
It may be that you just need to detoxify. Then, perhaps the herx would be more mild. Herxes are caused by a build-up in the body of the poisons that come out of the dead lyme germs. If you can flush out these poisons quickly, your herx will be mild.
My lyme doc had me eat 4 lemons per day and drink plenty of water, all to detox.
I squeezed the lemons into the water and made that my only drink all throughout lyme treatment--1 whole year. (Plus, I drank kefir daily as a probiotic.)
So, do that and stick to the yeast prevention diet. Eliminating all sources of sugar (flour, fruit, cereal, rice, etc.) also helps the herx immensely.
Plus, boost your immune system by eating raw garlic twice per day (2 cloves per day, in other words). That was another rule from my lyme doc. If you can't eat garlic, take Kyolic as a substitute. Get it at a health food store.
Doing all these things should help you to get over the herx hump and on your way to total recovery.
From p. 17:
"Several days after the onset of appropriate antibiotic therapy, symptoms often flare due to lysis of the spirochetes with release of increased amount of antigenic material and possibly bacterial toxins. This is referred to as a Jarisch Herxheimer-like reaction. Because it takes 48 to 72 hours of therapy to initiate bacterial killing, the Herxheimer reaction is therefore delayed. This is unlike syphilis, in which these reactions can occur within hours."
Posts: 9931 | From Maryland | Registered: Dec 2007
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posted
Thanks TF. Everything you say is making sense.
My question for you is this. You had one year of treatment then you were better?
How long did you have symptoms before getting treatment and what were your symptoms?
Do you have any symptoms left now?
Posts: 574 | From Out there somewhere | Registered: Jul 2010
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TF
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Member # 14183
posted
I had lousy lyme treatment for 2 years, then switched docs and had great lyme treatment for 1 year. Then, I was finished. My doc treated me 5 months past the symptom-free point. I got symptom free in October, but he won't let anyone stop meds if winter is coming on or if you are in the winter time. That could cause a relapse. So, I had to continue meds until spring of the following year.
I completed my treatment 5 1/2 years ago. I have been symptom free for 6 years now. All of my symptoms went away. I am totally normal in every way. Lyme is a thing of my past.
I had undiagnosed lyme disease plus babs and bart for at least 10 years before a doc figured out what it was, tested me, and I got my diagnosis. I suffered for 10 years.
The last 5 of those years, my symptoms were so bad that I had no life. I say lyme stole 5 years of my life.
The first 5 years, I had 7 month episodes of symptoms followed by 5 months symptom free. But, eventually, the symptoms became permanent.
My symptoms:
My major symptoms were extreme muscle weakness and horrendous fatigue. Plus, in the final 5 years, I was attacked gynecologically. This gave me a false menopause and many other gynecological symptoms that were unbearable. I will not describe them on the public board. If you want to know about this attack, send me a private message.
Prior to diagnosis, I had 3 1/2 years of bilateral facial drooping (a mild Bells Palsy) which cleared up spontaneously, all prior to treatment.
My eyes dried out terribly. I had to see an eye doctor for this. The continual irritation was painful. My mouth dried out terribly. I had to be treated by my dentist for this. It caused horrible bad breath, affected tooth health, and made it difficult to go to sleep at night--your tongue is sticking to the roof of your mouth. You want water or something to soothe the dryness.
I got trigeminal neuralgia during the 2 years of lousy treatment. It is unbearable--feels like you are being electrocuted in your face.
I had choking problems. I choked on my own saliva. This caused a 30 minute coughing fit each time it happened until I could get the saliva up from the lungs.
My muscles were so weak that I could not hold my mouth open to have my teeth cleaned, hold the phone to talk on it (for more than 30 seconds). I dreaded having to rise up from a chair or step up a curb because this was so difficult (having to lift my body weight). My legs shook like jello walking down stairs. If I did a deep knee bend, I could barely get up.
I had to rest twice while getting ready for work in the morning--arms and legs got too weak to continue. This getting ready got me so exhausted I just wanted to climb back into bed, but instead I forced myself to drive to work, generally crying the entire way.
I could not sleep. I could not get to sleep or stay asleep. Woke up every 20 minutes for the first 2 hours, then just lay there the rest of the night.
The last 3 months before my diagnosis, I had continual nausea. Even looking at food was often impossible for me. I lost weight.
I did everything by will power.
I would get episodes of horrendous abdominal pain. I had colonoscopies, x-rays, etc. which all showed nothing. Once, after 10 days of laying home on narcotics due to abdominal pain, and after getting various tests, I went to the ER which expected appendicitis. They did a complete body scan which showed nothing. So, they sent me home. A few hours later, the episode finally ended.
I got terrible dental pain that lasted for months. Dentist did one root canal, then another, then threw up his hands and sent me to an oral surgeon that diagnosed it as "inflammation." For months I lived on anti-inflammatories and prescription pain meds. I wanted to cut my head off. I felt like liquid fire was flowing down my jaw. Cold and wet weather made it worse. It finally went away when summer came.
I had what one lyme doc called a "major central nervous system event." At work, I got gaps in my visual field. My email looked full of typos, and I couldn't fix it. I could not see my coworker's head, but could see her body. I knew I couldn't drive home this way, so called my hubby and sat out in the car.
In the car, I felt like I was going far, far away. I thought perhaps this was me dying. I didn't care. It was peaceful. I lost all strength, so I could not lift my arm or move.
When husband got there, I had to work hard to make a little motion to him, laying in the seat. He had to pick me up and put me in his vehicle. For hours I could not walk without leaning on him. I could not think. He asked me a question and I yelled, "Don't make me think. My brain won't think."
I went home and lay down. By the next day, I was OK again.
I had episodes of sound sensitivity, where I would scream to turn the radio off. I had nearly continual headaches, lots of stiff necks, migrating spots of what felt like sunburn when I lay in bed trying to sleep (had my own LSD trip there) and finally felt like I was being stabbed by thousands of pins and needles all over my arms and other places. This was hard to bear.
I also had word finding problems, derealization, and memory problems. It got to where I did not speak in meetings at work because I would not be able to find the words.
These are just some of the symptoms I had. The menopause reversed with the good lyme treatment. Everything reversed. That's what good lyme treatment will do.
Posts: 9931 | From Maryland | Registered: Dec 2007
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seekhelp
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posted
Wow, TF. I knew you had problems, but I didn't know they were so severe. Reading this really makes me aware of what you overcame. I now see why you so strongly promote Dr B's treatment and try to help others. Congrats on beating this evil illness.
Posts: 7545 | From The 5th Dimension - The Twilight Zone | Registered: Mar 2008
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Remember to Smile
Unregistered
posted
Dear TF, You're a wonderful, caring, giving friend to SO many here! We honor your success & stamina in battling your way OUT of the unfathomable LD nightmare.
You are so very kind to continue to steer LymeNet newbies in the right direction, thus saving some people years of dead-ends and unending pain.
Thank you, thank you, thank you!
To jacki81 about sx flares: Consider looking for the couple days/month when you're a bit "up" and marking those on your calendar. It's nice to look forward to the good days, and not just focus on the lows.
payne
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posted
Thank you & Bless your prayers, what a heartfelt note...TF - 11-08-2010..02;51 i copied it for my family and friends to read, for it puts into words my fight..someday i want to be you...a hero
-------------------- TULAREMIA/rabbit fever ? Posts: 1931 | From mid-michigan | Registered: Jun 2010
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TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
My desire is that every lyme sufferer regain their health. If this disease had not had such a profound effect on my life, I would not still be on this board today, so many years after getting rid of this disease.
When I was sick, many days I would say to my husband, "It's a good thing we don't have a gun in this house because today I would use it" and make a motion of putting a gun to my head and pulling the trigger. Me, a person who was never depressed more than an hour in my life.
That shows you that anyone, tortured enough, will look for a way to escape, even death.
My husband would haul me around like a sack of potatoes. Many times, we would go into a restaurant but my little bit of energy would evaporate and he would have to go find the waiter and cancel our order and take me home.
He said he would look at me lying on the couch and he believed that he was going to be a widow--that they would eventually figure out what was wrong with me but then it would be too late.
So, it was a scary time for him also, having to watch me go through all of this.
My second doctor told me that maybe I was just going to be one of those people who had to stay on meds my entire life. Baloney!
I had begun studying the Burrascano Guidelines and I saw how my doc's treatment was nothing like the Guidelines. Then, I had hubby take me to 2 lyme conferences where Burrascano was speaking. Then, I called more support groups and asked for a doctor who followed Burrascano.
That was the turning point for me. My final lyme doctor gave me back my life. My husband says, "He gave me back my wife."
So, people, never give up. The el-cheapo way rarely works with this disease. You need to find a doctor with a whole lot of expertise to get rid of lyme disease. These are the docs people are standing in line to see.
Get to one of them, and you will have success. That is what my lyme journey taught me.
Thanks for all the kind words. It is nice that my past torture can now be used to encourage people.
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