posted
Does anyone know if it is possible to have contracted lyme twenty-seven years before
actually being diagnosed with it ? Twenty seven years ago I became very ill, with symptoms
like fever,sweats,muscle aches,extreme fatigue,swollen lymph glands throuout my body
and a whole host of other symptoms. I was unable to get out of bed for months at a time.
I was tested for everything from mono to epstein-Barr and the doctors stopped short of
doing a biopsy on one of my lymph nodes. They never found out what the diagnosis was. I was
able to struggle along since then but had recurring poor health. Now, twenty seven years
since my initial display of symptoms I found that all the joints in my body began to scream
and a an unusual fatigue reminiscent of years ago is beginning to return. I went to a
rheumatologist and she ran the Elisa and Western Blot test and both came back positive.
Is it possible for this disease to have been in my system all these years?
[ 02. September 2006, 05:18 PM: Message edited by: Mercer ]
Posts: 4 | From long island N.Y. | Registered: Sep 2006
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AZURE WISH
Frequent Contributor (1K+ posts)
Member # 804
posted
Yes it is.
Because of ignorance and arrogance in the medical community combined with all the political bs many people have it for decades before being properly diagnosed.
I had it at least 13 years before I was diagnosed. I also muddled along with it those 13 years but then it got much worse and I have been disabled since.
Lyme can be quite serious. Many of us have lost alot due to the severity of our symptoms.
WHat I reccomend you do is find a lyme literate dr. (llmd) In my opinion and expereince dealing with Lyme, It has to be treated with a high enough dose for a long enough period of time....
Most drs are not willing to do this. Most drs. will treat you so long and if you are still sick at the end of whatever time period they deem that you have had enough (usually weeks) then they say you have post lyme syndrome and you will never get better.
You can get better but you need a llmd. If you go to seeking a dr. post where you are and someone will pm you drs info. Make sure your pm is working because we do not post drs names on this board. (due to the political issues)
Sorry I am so rambly - Hope I was coherent enough through the fog of fatigue.
Yes, there are many of us who went undiagnosed for a decade or two. I was was diagnosed about 16 years after I starting first developing symptoms. During this time my symptoms worsened and I developed new ones. Proper treatmet is essential to halting and reversing the course of this disease.
Twenty seven years ago lyme was still a relatively new disease, and not well understood. In many ways this is still true.
Many with Lyme get labels such as chronic fatigue syndrome or fibromylgia, and are put on medications for the symptoms of the disease but not treatment to eradicate the underlyding cause.
If you have symptoms and a positive Western Blot than it seems highly probable that you have chronic lyme disease. It's great you found this site. A couple of members will stop by to give you links for information for newbies.
Since most docs are not well versed in this disease it's essential that we read and educate ourselves. And find a lyme literate doctor, one who is knowledgable about lyme.
There is a section on this forum called seeking a doctor. As Azure, said, I would also recommend putting a post that you are seeking a doctor (and in the topic subject put the area of the country you are in) and make sure you private message system is able to receive messages.
I was relieved and happy when I was finally diagnosed after years of searching. Treatment can be difficult and long, but at least I am on the right path. Welcome.
[ 02. September 2006, 01:29 PM: Message edited by: serendipity ]
Posts: 628 | From the south | Registered: Dec 2005
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Vermont_Lymie
Frequent Contributor (1K+ posts)
Member # 9780
posted
Yes, it definitely is.
Something similar happened to me. I had an untreated bulls-eye rash and tick bite 15 years ago, and now feel so much better after 2 months on antibiotics.
The main thing that I have learned about lyme disease in the last six months of reading is that it is tremendously complex and variable. Some folks with the same exposures may have entirely different outcomes and symptoms and response to treatment.
Good luck and definitely find yourself a good LLMD!
Posts: 2557 | From home | Registered: Aug 2006
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Andie333
Frequent Contributor (1K+ posts)
Member # 7370
posted
A similar thing happened to me, too...and in my case, I was treated for Lyme initially.
Ten years ago, I had a bullseye rash and went to a well known ID doc within a day or so. He told me he was sure it was Lyme and gave m3 a short course of anbitiotics -- about 15 days. My symptoms disappeared, and I assumed I was fine.
For the next 5 or 6 years, I had quite a few weird symptoms, but nobody ever associated it with that earlier rash (including me).
Then about 2 years ago, my health started completely deteriorating. I had a severe increase in pain, a bizarre body rash, and then one thing after another started causing me problems. I was bounced from one specialist to another , all of whom knew what was wrong, and none of whom diagnosed me with Lyme.
Thousands of dollars and two years later, my acupuncturist suggested Lyme. By then, I could barely walk and couldn't think...didn't have the energy to get across a room.
I found a good Lyme doctor (LLMD) and tested strong positive. I have no doubt the bacteria had never left my system.
I've been on antibioticfs now for more than a year. I've seen a lot of improvement, but I still have a ways to go.
I hope you'll follow the suggestions of others here to find a good LLMD in your area and get tested and treated asap.
Keep us posted!
Andie
Posts: 2549 | From never never land | Registered: May 2005
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Why do you think so many of us are in such deep s**t.
-------------------- Jeff Posts: 533 | From CA | Registered: Mar 2006
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bettyg
Unregistered
posted
YES; I've had chronic lyme for at least 36 years if not longer; MISDX for 34 years, and 2 years in lyme treatment. I just read your heading since I can't read long block of text without pargraphs and spacing in between.
Symptoms list was in the newbie's link I sent you after you posted this today, so study it carefully ok.
Go to SEEKING A DR. section now to post. Most take many months to get into since they only take ONE new patient per month!
Lymetoo/TUTU will come along & tell you her story of DECADES longer than me & 2 yrs. lyme treatment. Bettyg
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lymednva
Frequent Contributor (1K+ posts)
Member # 9098
posted
Another yes here! I have had Lyme for over 40 years. I was finally dx'd in April 2006.
-------------------- Lymednva Posts: 2407 | From over the river and through the woods | Registered: Apr 2006
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Nal
Frequent Contributor (1K+ posts)
Member # 6801
posted
I believe it can too. No one knows how I contracted Lyme initially. However when I was 6 I had a badly infected tick bite on my scalp. My records indicate they treated me with doxycycline for 3 weeks because the bite site was "infected and red"
Health did pretty ok during my childhood and then I hit 27 and BAM!! Im now 34 and still fighting this darn thing.
Nancy
-------------------- Life is 10% what happens to you, 90% how you respond to it!
-Chuck Swindoll Posts: 1594 | From Colorado | Registered: Jan 2005
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AliG
Frequent Contributor (1K+ posts)
Member # 9734
posted
Yes, I'm looking at close to 2 decades (it could have also been 4, not sure whether that one was related or not.) This seems to be a very common scenario here.
It would probably have been longer, or never for me, if it weren't for additional recent ticks.
You may also want to get checked for co-infections. I believe Babesia can help Lyme hide. It messes with your immune system.
If you do not have one, you should post for a LLMD referral in "seeking doctors" and get tested for co-infections, as well.
Good Luck in your Quest for Wellness! Ali
-------------------- Note: I'm NOT a medical professional. The information I share is from my own personal research and experience. Please do not construe anything I share as medical advice, which should only be obtained from a licensed medical practitioner. Posts: 4881 | From Middlesex County, NJ | Registered: Jul 2006
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posted
i thought lyme disease has only been around since 1974/ how is it possible for someone to have it for 34 or 40 years then?
Posts: 73 | From connecticut | Registered: Aug 2006
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bettyg
Unregistered
posted
Jerry, good question!
1974 was when it was dx in LYME, CONN. and an "official" name given to it. It goes back 100 plus years. They had other names back then...
If you got my newbies/advise, look for my BETTY'S LYME BROCHURE where I show the BOOK SELECTION:
Order LYME DISEASE UPDATE: SCIENCE, POLICY, & LAW; is very helpful in learning more about it going way back where, etc., and is affordable! Bettyg
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posted
I've probably had it for at least 24 years but was only diagnosed 2 years ago. Noticed problems my second semester of college. I was told I was tired all the time because I had allergies.
Posts: 547 | From Maryland | Registered: Mar 2005
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Aniek
Frequent Contributor (1K+ posts)
Member # 5374
posted
I had Lyme undiagnosed for 17 years. I know when I contracted it because I had a typical bulls eye rash around a bug bite on my neck and signs of infection (headache, nausea, etc.)
I had symptoms on and off, but most of the time I didn't realize I was sick.
18 months after I was bitten, I had extreme swelling and pain in my knee that lasted on and off through my adolescence. My doctors said it could be Lyme, but because I didn't test positive and din't have cognitive symptoms they didn't treat me.
Other times I went to doctors with pain, they always said it was unrelated to my knee. This included debilitating pain in my hands and wrists 15 years after being bitten that lead me down the road to a Lyme diagnosis.
-------------------- "When there is pain, there are no words." - Toni Morrison Posts: 4711 | From Washington, DC | Registered: Mar 2004
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