posted
Just wondering how many of you started with severe flu or viral like symptoms at the beginning of your illness with Lyme and/or coinfections. I started back in May with a couple weeks of bad headaches, flu like chills, poor appetite, and very bad fatigue. Since then, my symptoms have become primarily tremor.
I sometimes wonder if I experienced a virus that my central nervous system is still recovering from, but my Igenex tests say Lyme.
Does Lyme always start with a severe initial presentation or can it be very gradual?
Thanks for your thoughts.
William
Posts: 131 | From MD | Registered: Jul 2008
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posted
mine started with fatigue.. out of nowhere id be sitting there and couldnt keep my head up.. then i had stomach and back pain..this went on for a month.. dr said it was a stomach virus... as time went on .. little over a month.. i found a dr that finally saw my one positive strand of lyme on the blood test, and then after medicine started, all typical lyme symptoms started appearing
Posts: 245 | From East Brunswick, NJ | Registered: Oct 2008
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Hoosiers51
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posted
I was at a summer overnight lacrosse camp for high schoolers at a university when I got sick. After the first day, as I was walking off the field to the dorms, I felt something sharp in my heart.
That night I went to the emergency room because my heart felt weird, like I was having a heart attack. But they said it was fine, so I went back to camp.
The next 2 or 3 days of the camp I barely struggled through, and on the fourth day when we went home, I could barely walk through the door, I was so fatigued and flu-like.
This all took place in Indiana.
But two or three weeks prior, I had been playing in a tournament in Eastern Pennslyvania.
So sometimes I wonder if I was bit in PA two weeks before but didn't see it, or if I was bit that day in Indiana but didn't see it......or if a childhood bite was coming back to haunt me and I just caught a virus or over-stressed myself at camp.
But basically, I was healthy that day in Indiana when I started having the chest symptoms, and I was never healthy after that night. Ever. Again. It's not like I went and did stuff after this incident (aside from struggling through the next 2 days)......I was horribly sick by the time I got home, and it never fluctuated back. I spent every day for the rest of the summer on the couch.
I haven't had a "healthy" or even "good" day since that day at camp in 2001. It only took a couple days from the first symptom to where I was couch-ridden for months and months and months.
So I dunno???? tick disease or virus that triggered it all? I dunno. If anyone has guesses or opinions, feel free to PM me.
Posts: 4590 | From Midwest | Registered: Jun 2008
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sutherngrl
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posted
My illess began in May 2006 with flu like symptoms and then went into severe fatigue and pain. Within 5 months I had to quit my job because I was so ill. Never saw a tick, so I was diagnosed with Fibromyalgia after a year.
I didn't settle for a diagnosis with no known cause and no known cure. Of course no doctor ever even mentioned LD to me and I had to spend months and months researching on my own to come up with the possiblility of LD. In the mean time I was getting more and more ill.
Finally got my Lyme diagnosis in May of 2008. After 7 months of treatment, especially after treating Babesia I am beginning to see improvements in the severe fatigue.
Posts: 4035 | From Mississippi | Registered: Jul 2008
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seekhelp
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posted
I believe Mono triggered by illness back in late '96.
Posts: 7545 | From The 5th Dimension - The Twilight Zone | Registered: Mar 2008
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Other than nagging neck pain (then severe - disc herniated), night sweats, fatigue...I did have sudden onset. Ended up in the ER, my ability to walk was severely impaired - it was all my brain could do to try to tell my legs to put one foot in front of the other, very scary. Then tremors, hyper-reflexes, neuropathy from literally head to toe (I'm sure there's more)-and it went downhill from there.
So yes, I did experience what I would call a rather sudden/severe onset after mild nagging symptoms which I ignored; I was unable to ignore things when suddenly I could barely walk. TS
Posts: 566 | From West Coast | Registered: May 2008
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posted
Like ticks suck. I had malaise - then, a sudden cascading of really sever symptoms.
Pneumonia was in there, but I don't think it set the LD off, I think it was a result of the whole immune system being compromised.
It is amazing how long you can brush off or not put together the mild symptomsf - now I look back & it was all quite classic, but at the time, I never put it all together as adding up to any 'illness' until I fell off the cliff, symptom-wise.
otm
Posts: 314 | From east coast | Registered: Oct 2007
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posted
Mine started with severe random burning sensations all over. I lost vision temporarily in one eye, tingling/freezing feet. I wound up in the ER because my head and back were on fire, my neck went stiff and my right arm went numb.
-------------------- I am so sick and tired of being sick and tired!!!
posted
Mine was the classic flu like fatigue. I was bitten by a tick and got a huge circle on my foot for about a week. After a couple weeks my head felt superheavy and I got left side facial numbness.
I got Doxy 400mg/day and Flagyl 1000mg/day right away when those symptoms hit me. That was 3 weeks past tick bite.
Apparently if you catch it within a month, it is easily curable....BULL****. I am almost 6 months of Doxy/Amox/Flagyl and I keep thinking I am cured until it comes back every couple weeks and I feel like I have been pisoned for about 2 days.
Also the tick was not attached for 24 hours...more like 5 minutes. No I am not crazy, no I didn't always have a horrible memory, and no I never had these tired spells prior to my tick bite.
Good luck.
Posts: 410 | From Victoria BC, Canada | Registered: Jul 2008
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posted
I caught mono from someone else so for 1 1/2 years I thought I had CFS. Before the virus, I was experiencing fatigue, anxiety, insomnia, and alcohol intolerance but was still functioning. I think the mono really destroyed my immune system.
Posts: 348 | From maryland | Registered: Jul 2008
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Hoosiers51
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posted
I think maybe there was a viral component to my illness too, but I don't know. This begs the question, what can we do for these viruses?
I have heard random things like freeze dried garlic, etc......does any of this work?
Posts: 4590 | From Midwest | Registered: Jun 2008
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gemofnj
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Member # 15551
posted
Hoos,
You can get Virastop from Enzymedica. Some healthfood stores carry it.
I took this for a while and felt better after a month or so.
There are others too, I just cant remember right now what they are. They have been mentioned on this site.
Posts: 1127 | From atlantic city, nj | Registered: May 2008
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Hoosiers51
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posted
Thanks! How many pills did you take per day? I might try that.
Posts: 4590 | From Midwest | Registered: Jun 2008
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gemofnj
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posted
Hoos,
I think whatever what was listed on the bottle along with my other supplements for the day.
Good Luck!
Posts: 1127 | From atlantic city, nj | Registered: May 2008
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gemofnj
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posted
I wound up in the hospital in January of 08 for a ruptured ovarian cyst. It was excruiating!!!
Soon after I recovered from that, I started with a stiff neck and joint soreness in my wrists.
From there it was all gradually downhill with muscular/skeletal, heart irregularities, neuro, etc.
I am still under treatment but almost 98% there!
Posts: 1127 | From atlantic city, nj | Registered: May 2008
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posted
When I first got sick it started with devastating fatigue. I would sleep off and on most of the day and then get 12 solid hours at night.
Whenever I tried to force myself to stay awake I would get really faint and felt like I was going to pass out.
After about two months of being too tired to function, things got really bad really fast. One day my husband came in to wake me from one of my naps.
As soon as I woke up, I became aware of intense and unrelenting pain in my legs. It hurt so bad that I instantly began sobbing and had a difficult time explaining to my husband what was wrong.
Not long after the pain began, the same pain spread to the rest of my body and I began to have fevers, chills, drenching sweats, nausea and vomiting.
At one point it got so bad with a high fever and vomiting continuously that my husband had to take me to the emergency room. They said it was a severe case of the flu.
After I was stabalized at the hospital, the symptoms remained but were milder. My symptoms would go up and down depending on whatever treatment I was given. For the most part though I was bedridden for almost two years altogether.
I think I got so bad so fast because I was infected with Lyme and multiple cos and then given predinisone and not being on antibiotics until it was chronic because it was undiagnosed.
posted
The start of my symptoms were actually not "severe" except for fatigue and a number of other things I wasn't able to identify at the time. I had a non-typical mono presentation (ie no swollen nodes etc) that I just never recovered from. After a month or more of symptom presentation, I tested positive on the standard mono spot test. (In about 2000)
After that, I did not recover in the standard 3-weeks or so, so it became a chronic fatigue syndrome diagnosis until my CDC positive IgeneX Western Blot in... 2003?.
Posts: 691 | From East coast, USA | Registered: Jun 2006
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CherylSue
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posted
My acute symptoms began suddenly, although I had been very tired 3 weeks before that. I came down with a severe flulike illness, chills, drenching sweats, 103 fever for 10 days.
I was hospitalized for a week and given IV Levaquin which fried my brain and gave me intense burning sensations under my skin. It damaged my nervous system. It took me a year to recover.
Enjoyed 3 years 95% remission.
Came down with 102 Fever and flulike illness. Took me another year to enjoy 90% remission for 11 months.
Third relapse with fever three years ago, and it's just hanging on.
Was diagnosed with Lyme in Oct 07 and worked up to a 85% remission.
Relapse two weeks ago. Functioning about 65%.
This disease sucks.
Posts: 1954 | From Illinois | Registered: Aug 2007
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posted
This is an interesting thread. I believe that I got bitten ~23 years ago, and was only mildly affected until 11 years ago when I had the seasonal winter flu that goes around, and was in bed for a couple of weeks.
After that started to settle down, I had bad vertigo, then noticed neuro symptoms that weren't related to vertigo. They told me I had "probable MS" and put me on interferons.
I started suspecting Lyme 2 years ago, but couldn't get a positive dx. Quit the interferon.
Then this winter, I got the nasty seasonal flu again, then got vertigo and basically had a relapse of the "MS."
But this time we caught the little Lyme boogies red-handed! Of course, I haven't been able to start treating them, because now my gall bladder went off and it's coming out Tuesday.
So I think, at least for me, when my system gets knocked back by something else, the Lyme boogies come out to play.
Still having neuro and fatigue problems, but am hoping that once we start treating the Lyme, the sx will get better.
-------------------- dx: MS in 1998 2007 - Lyme suspected 2009 - Positive Lyme, MS worse. Now: Copaxone shots for MS gall bladder out 7/09 Ceftin, Zith, Septra LDN Acyclovir Monolaurin, DHEA, Pregnonelon, Curcumin Posts: 243 | From New Mexico | Registered: Feb 2007
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gemofnj
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posted
cheryl,
does your relapse always start the same way?
what are your relapse symptoms?
Posts: 1127 | From atlantic city, nj | Registered: May 2008
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annxyzz
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posted
I started out in 1996 ( age 40) with what felt like a severe flu ( including vomiting /diarrhea) and burning sensations on my skin that sent me for the first time to the ER in the middle of the night . I also had weakness in my limbs off and on and nasty dizziness . I felt fluish and totally discombobulated and scared to DEATH .
I was given the standard elisa test for lyme which proves nothing . My ID doc put me on prophylactic six weeks of DOXY , and I got better . Because the lyme test was negative the ABX stopped . I became bedridden and was not diagnosed until 2005 - thus years of suffering .
My initial bloodwork did show EBV , CMV, and mycoplasma pneumonia , and my first diagnosis was CFIDS / Fibro of course . I ALWAYS KNEW I HAD AN ONGOING INFECTION .
I had three years of ABX ( partly self help ) and now am doing herbs and plan on trying rife EMEM .
I am pain free but always feel fluish and TIRED . I am not confined to bed 24/ 7 , but feel sick everyday .
I am not sure I will get much better , even if I had good healthcare (LLMD) There is still not a lot known about lyme , nor do many longterm sufferers seem to get well from what I see. I am better than 96 , but I struggle enormously and feel I am not useful or productive .
I am also losing hearing which is unnerving .
I pray God will enlighten someone to the mystery of this bacteria .
-------------------- annxyzz Posts: 1178 | From East Texas | Registered: May 2009
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posted
I first started showing symptoms about 30 years ago, but they were mostly tolerable.
Then I came down with Meningitis in 1992 and nothing has been the same since.
I think I would have still been able to get by, but my pregnancy in 2001 was very hard on my body.
I had major surgery in 2007 and have gone steadily downhill since then.
I didn't put it all together until a couple of months ago - the symptoms are so widespread that it seems they could not possibly be caused by the same thing, even though they are.
-------------------- Take care -kelly --------------- Posts: 330 | From TX | Registered: Mar 2009
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Hoosiers51
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posted
UPDATE
To those that read what I had to say a few months ago up there....
....I did get tested for viruses through MDL recently, and they were pretty much all negative except for equivocal EBV, one of the types tested.
The Mycoplasma Pneumoniae (which is not a virus) was IgM positive though.
And I'm still testing positive for babesia duncani.
So, as one of the people that had a VERY sudden onset of my illness....I can say that viruses do not seem to be my major issue, at least at the time of testing a couple months ago. Mycoplasma might be, however (in addition to the TBD's).
I was trying to do the high Lysine/low Arginine diet, so maybe that helped with the viruses.
I found that surprising and interesting, that I tested negative for a lot of them.
Posts: 4590 | From Midwest | Registered: Jun 2008
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posted
I got sick on April 16, 1986. I was fine the day before. I woke up with a really stiff neck, and a sore throat. By that afternoon I was so dizzy I had to hang on to something or I would tip over.
I had an upset stomach, my head felt like I was drugged, had intense head pressure. Started having night sweats, and ran low grade fevers.
Had severe exercise intolerence, felt like I was run over by a bus, I hurt from head to toe. My eyes were blurry, was light,and sound sensitive.
Went to the hospital and was told I had a virus.
Been sick ever since.
Kathy
-------------------- You never know how strong you are until being strong is the only choice you have. Posts: 807 | From South Dakota | Registered: Jul 2005
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posted
I'll share my story. In 1996 I had gall bladder surgery, before surgery I was having heart palpitations.
It was very annoying, to the point it was giving me anxiety. I saw my pcp for this and they have always told me it was MVP (mitral valve prolapse)
Before my gall surgery, I had a pretty normal life.
They gave me a routine check before surgery,and I was given some antibiotics for my heart.
What was suppose to be a Same day surgery for a gall removal ended up being an overnight stay.
I had severe heart palpitations,and thought I was going to have a heart attack.
My heart beats were 200bpm. I was prescribed Tenormin right then and there. I went home for recovery, and the night mare began.
My whole nervous system went haywire. Went to my PCP again, he told me I was experiencing GAD general anxiety. I said how can this be? I was normalbefore?
I said I feel like this isn't my body? I was given anti-depressants etc. drugged up.
I tried going back to work, and would have extreme anxiety and panic attacks out of the blue.
In 2002 I woke up with swollen hands and feet, and flu symptoms. No tick bite or any rash that I knew of.
Went to PCP, they tested me for Lyme and bingo it came out positive. Could this all be symptom of Lyme? Is this the mystery diagnosis after all these years? Well now I know I have it.
Being treated now, but this is my story.
Tested positive for Lyme with Elisa test. 23IGM band positive.
[ 07-20-2009, 06:41 PM: Message edited by: Fran_40 ]
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