OK, here's my question: For 2 yrs, every month or 2 months I would have the same flu-like symptoms for 2-3 days, then it would just go away.(thought that was just my weird way of getting sick all the time)
Then, in Dec. a huge explosion of multi-symptom problems: same flu-like stuff plus lightning bolt jabs, chills, fever, nausea, anxiety, numbness in feet, heart palpatations, chest tightness, all over pain (!), and more...I was debilitated for months.
So, could all the previous symptoms that occured before the 'explosion' be Lyme or does Lyme only show up with a "bang" ?
I ask because I'm trying to figure out how long I think I might have had this..Please advise if you have insight..thanks! Posted by treepatrol (Member # 4117) on :
It does both fast and slow.
Posted by ChrisBtheLymie (Member # 8916) on :
It can be fast or slow. In my case I was bitten in August 2002 and just felt a little tired after the bite with light sensitivity - no major symptoms - until in November 2003 when I suddenly came down with a severe flu-like illness like yourself and never recovered. My illness was very slow, with symptoms gradually getting worse and more and more new symptoms slowly appearing.
Posted by CaliforniaLyme (Member # 7136) on :
Mine sounds like yours a bit. I got bitten, 3 tick bites, 1 ECM rash (it was chornic, stayed for months) at bite site- positive for lyme & HME, clincial for Babs & Bart
at first I just had a few days here and there- then would be fine agian- then it would come back- and something new- a new bad thing- and then one more-
it was like it was circling me-
and then- then one day a bad symptom didn't leave
but stayed
and then another
stayed
and then more came
and then my life began to suck so bad i just wanted to die but I had a baby I didn't want to leave
and then I was bedridden
and orals didn't work.
anyway, Lyme sucks.
I have no pain or symptoms today due to 9 months of IV Rocephin and my angel LLMD*!*! Bless him and thank goodness for IV Rocephin*!*!*!
YES, it can come on all at once for some people- for me it began with one thing- and then it went away-
sudden heart palps-
irritable bowel syndrome- that was HME
etc and then it stayed- I was chornic-
and despite my lovely symptom-free ness I can't go o ff abx
without losing the ability to walk
and talk.
Those are nice abilities- I value them*)!!!
Welcome to the board!!!! Sounds like perhaps you are one of us-
The other TBDs are just as often infections btw- I would get an LLMD and be evaluated- Take care-
Posted by Jellybelly (Member # 7142) on :
Very slow in my case. So slow I almost thought the way I felt must kind of be normal to a degree.
I was bit 25-30 times as a teen. Nothing that I remember then, except for the Raynaud's. By early 20's stiff neck and occasional headaches, constipation. By 24 constant headaches and after the birth of my second child it was very apparent something was wrong and it was a slippery slide down to the bottom.
It still progressed very slowly, new symtoms appearing little by little until I actually looked like I was dieing, slowly wasting away.
Why it is different, I don't know. I do know that, my recovery has been relatively profound though. Very short compared to getting that bad. Once I started realizing what was the problem, what I was fighting, recovery was rather quick. Still years and I am still in recovery, but living somewhat a normal life came pretty quick.
Who knows why?
Posted by jenin98 (Member # 12617) on :
so in my case, my symtpoms came fast in about 2 months. 2 years ago I had an incident with headach and stiff neck for 2 motnhs, then went away
but after my surgery, boom bam, lyme came out. first 4 months after surgery, symtpoms were pretty much in legs, BUT, this past month, floaters , joint crack like they want to fall off my body, neck grinds, ears ring. Fast. So, I have been in treatment for 3 weeks now, pretty much, but now my treatment is aggressive. Do the symptoms go away in the reverse order in which they came (from last to first)? Jenin
Posted by SForsgren (Member # 7686) on :
My bite was about 9 months before I finally fell apart... So for me it was slow, but certainly there are acute cases as well.
Posted by EyeBob (Member # 12572) on :
Mine was 4 months after I was bit. Then quick downhill, then slow uphill.
BT
Posted by Itsy_bitsyone (Member # 12635) on :
Mine took decades to totally manifest to its current form. I was quite healthy on and off over the first 15 years other than aches and pains and my eyes.
The next ten years were slowly rougher...
Then I gave birth 10 years ago and straight downhill from there.
Probably depends on the strain of the bug and whether or not you have co-infections. I guess if you have co's then you would probably have more acute symptoms much sooner. But that's just a guess.
Posted by aiden424 (Member # 7633) on :
Mine came on really fast. I got really sick April 16, 1986 with what I thought was the worst flu I'd ever had. I was fine the day before, I had worked.
I went to the emergency room and they thought it was the flu too. I never did see a tick that time, but have pulled several off me before. I got a rash that looked kind of like ring worm about two weeks later, but was told it was granuloma.
Been really sick ever since.
Kathy
Posted by hardynaka (Member # 8099) on :
I got bitten in June 05, got an EM rash in July, no other symptom. Then got 2 weeks of doxy, rash disappeared.
In July, started having light arthritic pains, in August got tired, in September I was very sick, exhausted, light sensitivity, night sweats etc etc. In October, I thought I was going to die, couldn't stand up most of the day, was sofa ridden.
For me, it was then fast.
After reinfection this last May, it took me ONE DAY to get full symptoms back. Arthritis came back, night sweats, light sensitivity, fatigue, etc.
I'm better now after INTESIVE treatment, but I think my immune system is still very weak. I'm amazed to see people not getting symptoms for years.
Selma
Posted by Andie333 (Member # 7370) on :
For me, the onset was very very slow.
I was bitten in 1996 and had the bullseye rash. I was put on about 19 days of abx, and the rash disappeared.
For the next few years, I'd have flu-like symptoms once or twice a year. And twice, I had several nasty rashes, which the docs wrote off as allergies (sadly was given steroids to combat them).
Had my gall bladder removed in 2001, and from that point on, it was one nasty thing after another: numbness, inability to concentrate, exhaustion, facial flushes, lack of libido, and a lot of anomalies in medical tests.
Finally by 2005, the symptoms seemed to explode into this full-blown illness that completely winded me it was so terrible. In June of that year, I tested positive and started treatment.
Posted by CD57 (Member # 11749) on :
Mine took TEN YEARS to show itself. Yes, it does happen.
I was bitten on a hike in Marin County in 1996, had no symptoms except bullseye, I did nothing and it itched for awhile and went away.
I had a baby in April 2005, and by July 2005 knew something was wrong. Went the usual round of seeing a gazillion docs, getting dx with fibro, CFS, stress/nothing, etc. Finally got dx Feb 2006 and did 3 months doxy. Felt GREAT and quit. As soon as I quit, bam! got more symptoms.. AND....I think I am one of the weird ones here, but I have gotten MUCH WORSE since beginning treatment in Jan 2007. I'm so much worse now I almost wish I hadn't started treatment! My LLMD is pretty aggressive, though, so this is probably why this is happening.
But as California Lyme says, the only way out is through!
Posted by Patrick (Member # 8108) on :
The way you describe the onset of your symptoms is the closet description to the way mine came on as I have ever heard any one give.
Like you I would get something that would show up every month or two for close to three years and then Bam! in Feb of 04 everything hit me at once like you describe. I had never been so sick as I was then, thought it was the flu from hell. It took me a month of antibiotics to feel somewhat better but never back to normal.
From that point on it was down hill with many new symptoms coming on each month until August when I was sure I was going to die. The correct diagnosis came in September and the two rounds of IV Rocephin and two years of oral abx's that followed have gotten me back to about 85% of where I was prior to all of this.
Thank you for posting your story I thought it was just me that it came on slowly for. I hope you are doing better now.
Posted by bigbertha (Member # 13067) on :
The doctors think that my lyme infection took place more than 25 years ago - when I was about 12, living in MN. At the end of my 20s, I had mild athritis, no big deal. I had a baby at 32, and that is when I started having muscle pain and fatigue. At 37, after the second baby, I am now in a "severe" chronic lyme mode.
I've noticed a few responders getting lyme symptoms after pregnancy. My question is, how are your children? Mine are fine so far, but I am concerned.
Posted by chiz (Member # 10301) on :
What an interesting thread this is proving to be.
My 9 year old son had a bad 'flu like illness in November 2005. Then the flu returned every month for a couple of days. Asymptomatic inbetween.
After 4 months I started getting worried and he told me he had a constant headache,tummy ache, and thumb/elbow joint pain between the episodes which were now occuring every 2-3 weeks. I remember a friend saying these febrile attacks reminded him of when he had had malaria.
He started abx in May 2006 for suspected lyme disease and developed many new neuro symptoms. After a dreadful 10 weeks he was almost asymptomatic. But then in Sept 2006 he had his first relapse. Slow, slow recovery after a change of abx. Second relapse in June 2007. He is now being treated for Babs and bart and doing much better.
I met Dr B recently who thought the sudden onset of symptoms was pathognomic of coinfections. However, he has never tested positive for babs or bart. His WB was CDC +ve at Igenex but negative in UK.
So Laura and Patrick, this sounds a bit like the onset of your illnesses. Are you being checked out for coinfections?
Chiz
Posted by Paula Carnes (Member # 10912) on :
Bigbertha, My case is similar to yours. I probably got infected before the birth of my first child. Then I got more tick bites over the years in South Carolina. My sons are in their 30s and one has come down with Lyme - rapid onset at age 30, several years after any tick bites. The doctor thinks he was infected in the womb, but there is no way to determine. My husband is also infected.
My son and husband are doing well. I am the one with chronic symptoms. I had gradually escalating symptoms for about 25 years and then a sudden onset of flulike symptoms when I crashed.
I've recovered to some level but still not well and have to take antibiotics for periods of time when I relapse.
I would suggest you try to keep your kids as healthy as you can. Do not allow them to hike in Georgia (or any grassy or forest area) without DEET and careful protection against ticks and probably chiggers and fleas as well.
Paula Carnes
Posted by Patrick (Member # 8108) on :
Hi Chiz,
Thanks for posting it does sound very familiar even down to the relapsing. Tests showed I had one co-infection for sure, Brucella; and one suspected but negative test for Bart. Treated for the first last year and I improved alot and am treating for the suspected Bart now. I'm 85% better than I was but I want the other 15. Time will tell.
I glad to hear your son is doing much better no kid should ever have to endure this.
Posted by SouthernCO (Member # 11167) on :
For me, the primary phase hit me overnight like the flu in 08/1992. Was treated for pneumonia with abx and recovered to about 85% after about 8 weeks although, just like you, I suffered the recurring infections.
Read recently in "Healing Lyme" that the average time between the original infection and the onset of chronic Lyme is 24 months.
Almost like clockwork, chronic Lyme arrived on 12/21/1994, overnight, during one of the recurring infections. When I woke up that next morning, I was barely able to walk due to the weakness and numbness in both legs.
Sure, the symptoms wax and wane, but the onset of both primary Lyme and chronic Lyme was immediate/overnight in my case.
Posted by CD57 (Member # 11749) on :
I have to add something else here -- we recently had a consult re: our son with the famous pediatric lyme specialist, Dr J. After asking about our histories and seeing our records, he told me that he thought I had "cleared" my initial infection in 1996 and was likely re-bitten.
In retrospect, I remember a three week period of headache/stiff neck in 2000, but I was under a ton of stress at work and wrote it off to that. Symptoms disappeared, only to surface with the delivery of my son.
So it seems it is possible to clear an infection......this was actually news to me. But it makes sense...
Posted by Boomerang (Member # 7979) on :
Hubby had multiple bites over approximately 5 years. Raised red, hard circular areas at bite sites.
He slowly started feeling worse and worse, complained of some mild neck pain. His bigger complaints were about his knees and elbows. He had a lot of strange itches and rashes on his lower legs.
These were all mild complaints, didn't seem anything to worry about. We just thought it was arthritis type aches and heat related rashes.
Then, late in 2005, he started having problems talking. Mixing up his words, couldn't tell what year it was, his birthday, anything.
I would describe his case as saying it came on very slowly over time, and then bam! It hit him hard.
Best wishes to all.
Posted by lymednva (Member # 9098) on :
Mine came on very gradually. I'm not really sure when I was bitten, but my younger brother has confirmed that we were always pulling ticks off when we were kids. That was in the 50's, early 60's.
I recall having bouts of IBS as a kid. I know I had headaches of unknown cause in my pre-teens or early teens. That's when I first learned the meaning of psychosomatic.
By my mid teens I was having quite frequent strep throats. I was usually among the first to fall asleep at slumber parties and when I spent the night at a friend's.
My first semester in college I pulled my first and last all-nighter. I felt so bad the next day I made sure I never did that again.
Pledge season was very difficult for me with waking early and staying up late. I recall I complained a lot about it. I figured everyone else was feeling the same way. Now, as the mother of three I realize they didn't.
I began dating my future husband the first weekend of college. I was always falling asleep on our dates.
When I was 23 we began trying to conceive. However I seemed to be ill mid-cycle every month. That was quite frustrating, and I finally went to a doctor to see if there was something wrong.
I was told it was because I was working at a school and picking up all the new germs. Yeah, right!
At the beginning of my first pregnancy I had a rash on my forearm. I was told it was ringworm, but couldn't figure out how I got it. Years later I recognized it as a small EM rash!
I had the same rash in the summer of 2001, and the doctor I saw didn't have a clue. I was actually wondering about Lyme by then, because I knew it had a bull's eye rash. The treatment he suggested didn't work, so he was wrong, again!
As the years passed I came to the conclusion I was a low energy person because I noticed my friends seemed to have much more energy than I did.
During all these years I managed to be able to either not work or work only part-time. I think that allowed me to go much longer before I finally crashed.
When I did go back to work full-time, in 1989,it became clear to me that I couldn't handle more than working and my family. I had to give up all volunteer positions and was made to feel guilty when I did that.
Again, I thought all women who worked and had three active kids felt this way. Besides my husband traveled quite frequently, leaving me to handle it all much of the time.
As my work responsibilities increased my health got worse. I began to suffer from more illnesses and miss more work.
At the end of every school year (I was a teacher) I noticed it took me several weeks to regain my energy. My doctor gave me some lame brain reason for it that never did make sense to me!
Meanwhile my marriage was deteriorating, in part due to my health, but there were other reasons, too. My ex left me during a blizzard and was too chicken to even tell me. He wrote me a letter!
That was when my health really took a turn for the worse. I was hospitalized for two weeks for "depression," which I now realize was really Lyme. I was exhausted, not depressed!
Still I managed to make it for five years after my divorce before my health became totally disabling. Then it took five more years to get the correct dx.
Posted by Robin123 (Member # 9197) on :
This was an interesting read.
I hear really mixed answers to this question from people in my area -- some fast, some slow.
I was a slow one. Very gradual. Practically under the radar. Lots of different symptoms, but never connected the dots.
Finally, exposure to a fire nextdoor gave me a chemical sensitivity meltdown, which made no sense to me. I went online to ask why I could be that chemically sensitive.
A nurse across the country asked me online if I'd ever been bitten by a tick. Answer: yes, 25 years ago. She solved a mystery not one medical professional here could - and I probably saw 300 in various fields in the past 25 years.
This ignorance has got to change!
Posted by Geneal (Member # 10375) on :
Since I never saw the tick that got me, this is a hard one to answer.
I had been dealing with sinus issues, frequent pink eye, fatigue, etc.
For a few years. Then Hurrican Katrina came. Lost our house and lives as we knew it.
Lived outside for 37 days without electricity.
Things started to get worse then, physically.
However, one puts things down to stress, getting older, etc.
I think it was the stress of the situation that "jump started" my spiral downward.
Worst part is that the stress has not left my life.......yet.
Having to go to court to get a permit to build a new house.
Having children and husband also diagnosed with Lyme.
I don't think I will get into remission, until some of these issues are resolved or dealt with.
Hang in there.
Hugs,
Geneal
Posted by KS (Member # 12549) on :
This is such an interesting thread. I've noticed giving birth seems to have triggered the onset of symptoms.
My story is similar to others...about 3 months after the birth of my son, I started experiencing minor bouts of nausea (maybe couple days/month) but it was certainly tolerable. It was almost a year after the onset of the nausea before the symptoms started becoming bad enough that I started seeing numerous specialists. I don't recall a tick-bite or a rash.
About 20 months (June 2007) after the birth of my son, I tested positive for Lyme. My symptoms have primarily always been flu-like symptoms (nausea, severe muscle weakness...). I have have had severe herxes which suggests to me that the bacteria has made a happy, semi-quiet home in my body.
Posted by Patrick (Member # 8108) on :
This really has proven to be an interesting thread. I wanted to respond to two postings made since mine.
CD57 - You said the doctor told you that he thought the infection you had had back in 96 had cleared and then you were rebitten.
I got sick with a bad flu in early 97 and mostly recovered but continued to have chills, slight fevers, muscle aches, fatigue, swollen glands etc for two years following. I was tested for everything under the sun, Lupus, RA, MS, etc nothing found. Then I got better in late 99, which leads to the posting from Boomerang,
In early 2002 the compamy I work for merged with another and it was very stressful for awhile. I began to have symptoms like how you describe your husbands coming on. Stiff neck, headaches, joint pain especially in my knees, elbows and fingers. Symptoms would vary and each month seemed like something new would pop up until like I said in my above posting BAM! in 2/04.
Its sure seems to me that 1. This can and does come on slowly for some of us 2. It can clear at least temporarily and 3. Physical and/or emotinal stress are definite triggers that can cause it to activate.
Thanks laura miller for starting this thread and all those who contributed your experiances. For me at least its helped me see more of the pieces of this puzzle.
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