posted
Being recently diagnosed with lyme, i have done alot of research, and it seems it is common to have flare ups of symptoms at certain times.
As the borrelia dies in its life cycle symtoms flare up.
However i was first diagnosed with MS 6 years ago, and have never had a flare up or relapse, i have just graduallyt gotton worse in my walking - main symptom.
The other symptom has remained the same throughout.
I dont get relapses or flare ups ???
I dont understand this? If the borrelia has a life cycle , why have i never had flare ups or relapses, i just slowly progressively get worse over 6months - years.
Im confused thanks
Posts: 33 | From UK | Registered: Mar 2009
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disturbedme
Frequent Contributor (1K+ posts)
Member # 12346
posted
Not everyone has flare ups. I think you mean, some people have okay or even good days and then go back to having bad days or horrible days, etc.
Lyme is different for everyone. There are people in your situation who never have a good or okay day and just get gradually worse and worse. It's the nature of the beast. The way it works in everyone is different... depends on the persons immune system or what type of Bb it is or where the Bb decides to take up residency MOST in your body, etc. There is so much more to it, more than any of us will ever be able to understand.
Also, I have never had flare ups in an obvious way like you describe. I never had a lyme flare up cycle either. My symptoms never fit into that type of cycle either... not until I started treating Babesia and then for a few months I noticed a very obvious two week on two week off cycle.
I did and do have good and bad days, but I didn't feel those as 'flare ups' because they never fit a clear pattern when they'd happen.
-------------------- One can never consent to creep when one feels an impulse to soar. ~ Helen Keller
My Lyme Story Posts: 2965 | From Land of Confusion (bitten in KS, moved to PA, now living in MD) | Registered: Jun 2007
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Ocean
Frequent Contributor (1K+ posts)
Member # 3496
posted
Adamttt,
I also didn't notice a cycle or flare up until last year. I had been sick for 12 years prior to that (misdiagnosed with CFS in 1997). Last year after taking a large amount of grapefruit seed extract, colloidal silver, oil of oregano and I can't remember what else (I was convinced a virus or something was causing my trouble, so decided to try to kill anything that shouldn't be in my body!).
I got extremely sore the next day, my legs, feet, back, arms, hands felt like someone had beat me. Then I got a swollen right knee.
after that at the end of the month I would get sore legs/feet for months. I still am getting it.
I stirred something up. I had NO idea at the time what I was dealing with (Lyme and who knows what else!), just glad it wasn't a worse reaction!
So you may notice cycles later on, esp when you start treating (are you treating now?).
No i have not started treating yet, but am expecting a coil machine to arrive soon so will be starting my first ever treatment for lyme in 7+ years.
Posts: 33 | From UK | Registered: Mar 2009
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posted
Who knows, who knows if it is even Lyme, but what options do you have? Try something or do nothing.
Posts: 743 | From New York | Registered: Apr 2009
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LisaS
Frequent Contributor (1K+ posts)
Member # 10581
posted
I went at least 1.5 years undiagnosed (not long compared to others, I know).
In that time, I had one clear remission that lasted about 1 month, during which I had near 100% resolution of ALL symptoms.
But when "it" reappeared, (at the time "it" was still unknown), it became a constant problem with slow, insidious deterioration. That went on from March-Dec '08, the only partial interruptions coming from medication (neurontin, Lyrica, prednisone).
I started abx treatment after my dx in Dec. '08. I am still taking abx.
Now, I DO have flares and remissions. I think/hope this is a sign that I am getting better and that my body, along with the medicine, is finally attacking the infection.
So I feel like I've been through both scenarios: relapsing/remitting, and slow, constant worsening.
Posts: 455 | From Was in PA, then MD, now in the Midwest | Registered: Nov 2008
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posted
It is Lyme John, as i have had strongly positive Lyme blood tests.
I dont understand why i have very typucal MS symptoms , with no typical lyme symptoms?? could it be because i have chronic lyme?
Posts: 33 | From UK | Registered: Mar 2009
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nenet
Frequent Contributor (1K+ posts)
Member # 13174
posted
Theories exist that Lyme is the cause of many cases of "MS", and that some other pathogens can cause "MS" as well.
MS is a title for a set of symptoms, a disease process with no defined cause as yet. They have not conclusively proven the cause of MS, but many believe that it is caused by pathogens, and in some cases Lyme.
Some simple correlating evidence for this is the outbreaks of MS in certain areas, and how they tend to line up with Lyme vector regions.
There is a lot of research that has been done over decades relating MS symptoms to Lyme, in which case those would be termed "misdiagnosed MS", which is misleading, since MS just describes symptoms, not cause.
I hope that made sense. My brain is a little scattered at the moment.
There was just a great thread about (misdiagnosed) MS and Lyme, and it was filled with great links to scientific and medical research about it.
Hopefully someone can find it. If not I will try later, my mind is too tired now.
disturbedme
Frequent Contributor (1K+ posts)
Member # 12346
posted
quote:I dont understand why i have very typucal MS symptoms , with no typical lyme symptoms?? could it be because i have chronic lyme?
Adam, I don't know what you mean.... Lyme and MS have pretty much the exact same symptom list. So I'd think typical MS symptoms would be typical lyme symptoms.
-------------------- One can never consent to creep when one feels an impulse to soar. ~ Helen Keller
My Lyme Story Posts: 2965 | From Land of Confusion (bitten in KS, moved to PA, now living in MD) | Registered: Jun 2007
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posted
Really? As the only symptoms i have are Leg strength (mainly left leg) , balance, stiffness and bladder issues. I dont know of any lymies with my symptoms, but i hear of lots of lymies with the same symptoms like pain, headaches, vision problems, brain fog, etc
Posts: 33 | From UK | Registered: Mar 2009
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My Lyme didn't start to "look" like Lyme until later on.
Before that, I had mostly neurological symptoms (paresthesia, double vision, dizziness ...).
It was only after over a year of symptoms, and a mislead trial of steroids (that make Lyme worse) that I developed joint involvement, nausea, and more that pointed away from a neurological condition.
So I can relate to having an unusual presentation.
Since I started treatment, my symptoms and their patterns have changed quite a bit. Since my blood tests were not as conclusive as yours, I was glad to see more "classic Lyme" symptoms emerge, it makes me feel more confident in my diagnosis.
This illness seems to affect everyone differently. I hope treatment goes well for you.
Posts: 455 | From Was in PA, then MD, now in the Midwest | Registered: Nov 2008
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disturbedme
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Member # 12346
posted
quote:...the only symptoms i have are Leg strength (mainly left leg) , balance, stiffness and bladder issues. I dont know of any lymies with my symptoms, but i hear of lots of lymies with the same symptoms like pain, headaches, vision problems, brain fog, etc
I had very bad balance issues. VERY bad especially in the beginning before I got treatment. And I know others who did as well. I used to trip over my own feet, fall into the wall, run into the wall or doors, etc. MANY lyme patients have stiffness?!?! What do you mean you never hear of anyone with lyme having stiffness? LOL.
And also MANY lymies have bladder issues. Interstitial cystitis is very common with lyme. I have it as well.
-------------------- One can never consent to creep when one feels an impulse to soar. ~ Helen Keller
My Lyme Story Posts: 2965 | From Land of Confusion (bitten in KS, moved to PA, now living in MD) | Registered: Jun 2007
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Ocean
Frequent Contributor (1K+ posts)
Member # 3496
posted
Those are Lyme symptoms Adam. My brother now has Lyme (ruled out MS because his lesions weren't where typical MS lesions are) and he has a lot of leg weakness. I have a lot of bladder issues and I have leg stiffness sometimes. I don't have the joint pain (besides 2 episodes of swelling knees), and I only have the muscle pain at the end of the month usually (sometimes mid month too). I do have the brain fog though and fatigue.
I don't have a lot of balance issues now, but I used to walk into walls all the time. I do sometimes still, will lose my balance and fall into the wall (corners hurt, ouch!), but I was also a gymnast for 10 years before getting sick, so my balance had better be better than avg!
posted
Adamttt - I have had leg weakness from the onset of my symptoms. Mine is mainly right leg. I am reassured to hear other people experience it, as I was thinking it was the 1 symptom of mine that didn't fit Lyme.
Some days they are very weak, but occasionally I can "walk normally" on stairs if people are around.
I also have bladder issues, possibly IC. I don't cycle either.
I was tested by 2 ENT's, for possible inner ear problem...dizziness, balance. Nothing found.
Just wanted to mention that we have these things in common.
My PCP thought clinical MS for me, but then ruled it out since my walking did not worsen, and clean mri's.
Posts: 175 | From SW PA | Registered: Mar 2008
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posted
Dear disturbedme, The balance issues sound just like me! I thought I was just clumsy, but now I wonder if it is Lyme instead. I am good at dancing, and I can do yoga or ballet. However, just walking down the hallway, I manage to run into the wall. Did you feel as if you were thrown toward the wall at times?
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