phyl6648
Frequent Contributor (1K+ posts)
Member # 28522
posted
My symptoms are never the same up one day and down the next.. Why is it this way ? I just don't understand chronic lyme..
My main symptoms are body aches to the bone on somedays this I can tolerate.. Then the off balance, ear ringing/ 24/7 that never leaves, blurry vision, head pressure its exactly like a bad sinus infection and I would think so but it comes and goes.What causes these horrible body chills been in bed all day just trying to get warm. Heart palps and the weakness .. could all this be lyme also the crying jags..
Now if it wasn't for all these symptoms I would be a well.. wouldn't we all?
Posts: 1058 | From VA | Registered: Oct 2010
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posted
I was just asking the same question. I think the disease goes through active and dormant stages.
In the active stages you feel bad but in the dormant stages your symptoms are less.
I think if I could figure out what causes a flare, then I could do a preemptive strike.
Posts: 538 | From kentucky | Registered: Nov 2011
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TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
Lyme doctors believe that the diseases flare during their growth cycles. So, lyme has a 28 day cycle. Therefore, you will feel more lousy every 28 days.
Babs has a 7-day cycle and a 14-day cycle per my lyme doctor and I experienced them like clockwork. Burrascano says babs flares every 4-6 days.
Don't know what bart does. Then, you also have the viruses and the parasites/worms. I don't know if they have cycles or not.
So, put it all together and it is like the stock market!
The only way I know of to do a "pre-emptive strike" is what my lyme doc had me do for babs. I had already cleared lyme and bart. When I started babs treatment, like clockwork I got sick every 7 days, to the hour. I got very, very sick starting on Friday evening about 7 p.m. and lifting on Sunday evening about 7 p.m. A full 48 hour horrendous flare.
When I reported this (after a month of this craziness), he had me take artemisinin to encompass the flare. I started it Friday morning and ended it Sunday night.
The first time I took the art, the flare was delayed til Sat afternoon. It only lasted 6 hours (not 48) and it was so mild, it was nothing to write home about.
Each week the flare was less and less. Then, it went to the 14-day cycle and flared every other weekend.
That is the only pre-emptive strike I know of. But, any time you see a very noticeable pattern of flares, tell your lyme doctor. He may want to add something for just during the flares.
Evidently, most antibiotics can only kill germs when they are growing (dividing). So, since a flare represents growth, if you can time your flares, you may be able to add another med just during flares and really knock down your germ level.
I always suggest marking flares on a calendar to look for patterns, even complicated ones. It helps the doc a lot if you can find a pattern and report it.
Then, on top of all of this, your menstrual cycle will cause you to feel worse. So, that is a separate "flare" of sorts. Near your period and during the period when the progesterone is low, you will/may feel worse. Don't let that confuse things when looking for the actual flares.
From Burrascano:
"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." (page 17)
"Babesia: Symptoms cycle rapidly, with flares every four to six days." (page 26)
posted
Bart can be every other day, from what I have read. I remember cycling like that for a while.
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seekhelp
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posted
I have this exact same thing. Whatever illness I have is not Lyme. There is no '28 day cycle' for me as TF states. I am sick constantly. I'll get one better day and pay dearly a few days later. This is just over and over and over and over and over. It's a real will breaker. Posts: 7545 | From The 5th Dimension - The Twilight Zone | Registered: Mar 2008
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phyl6648
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Member # 28522
posted
Seek, I hear you.. My ENT keeps saying if I get my sinuses clear then I will feel so much better.. I don't know who to believe anymore.. I honestly think I might have the flu.. who know..
Tks all for all you good info...
Posts: 1058 | From VA | Registered: Oct 2010
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nefferdun
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Member # 20157
posted
TF describes the borellia flare exactly. Mine came with the full moons and an eclipse was over the top crazy. I never noticed a cycle with babesia, bart of protomyxzoa but I did feel better and worse.
Even though I have felt close to well since early summer, I am cautiously optimistic because I am always waiting for the hammer to drop.
Since we have multiple infections, one can go dormant while another takes over. That makes it really hard to understand what is causing what and how to treat. If you are not getting progressively better, then you might have another infections you need to address.
Don't forget protomyxzoa. If you are taking anti-malarials with a lot of dietary fat and you start diving into more symptoms, it could be PR. It multiplies 100 times faster with lipids and arginine. The best way to really address it is with a low fat vegan diet. Stromectol did wonders to help get it under control for me.
-------------------- old joke: idiopathic means the patient is pathological and the the doctor is an idiot Posts: 4676 | From western Montana | Registered: Apr 2009
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posted
I can sympathize with everyone here. My lymes flares every month for a few days. My heart palps spike, my panic attacks get out of control, the head pressure, body aches, the whole nine. My doc suspects a few cos, babesia being one. I feel pretty good one day, and like walking death the next (don't really function much on those days) and it's hindering me from living much since I no longer make too many plans to go anywhere because I never know how i'll feel. I'm looking into the possibility of parasites. This may be something you want to consider also. I'm going to talk to my LLMD this month about this possibility and a treatment option. When I looked up the symptoms, it was actually scary how many I have. Good luck to you!!!
Posts: 132 | From Central New Jersey | Registered: Feb 2012
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phyl6648
Frequent Contributor (1K+ posts)
Member # 28522
posted
Jess, you sound so much like me.. Please let me know about parasites and your treatment plan.. I am searching for a doctor and some help.. Haven't been very successful finding one that I can afford and travel to... tks
Posts: 1058 | From VA | Registered: Oct 2010
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