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Old 12-27-2004, 07:14 PM   #1
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How long could you have Lyme Disease

I see Lyme Disease mentioned alot on the Fibro board. My first symptoms started after 3 bouts of mono in my teens within a year. I'm now 29 and since the birth of my baby in Feb this year, everything has gotten worse. Would it actually be possible to have had Lyme for this long. I don't ever remember being bitten by a tick.

 
Old 12-27-2004, 08:12 PM   #2
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Re: How long could you have Lyme Disease

Well I'v heard of people who have had LD for 30 or so years, so yes, I do think it's possible. I have personally had it for 9 years and didn't know it. Most people don't remember getting bit, but ticks inject a numbing agent when they bite you so you don't feel themmost of the time. Also it can lay dormant int hat body and in times of stress (like a pregnancy) symptoms can show up or intensify. HTH. Somebody with more knowlwdge then I will come along shortly to answer

 
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Old 12-28-2004, 06:25 AM   #3
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Re: How long could you have Lyme Disease

Hi Char123, welcome to the board!

Many people who have Lyme were first diagnosed with other illnesses, including Fibromyalgia. Yes it is possible to have Lyme for years before getting diagnosed. Often, people are able to fight off a Lyme infection until their immune system becomes stressed in some way (illness, divorce, accident etc). Many people are bitten by ticks without knowing it because they are small and they inject a numbing agent so you cannot feel them on you. In my non-medical opinion, I think it is possible that you may have had Lyme when you were in your teens because it can present as flu-like or mono symptoms. Or, you may have had a Lyme infection before the bouts with mono. This may have caused your immune system to be weakened and the symptoms to emerge.

Many women who have Lyme report a worsening of symptoms after pregnancy. When Lyme disease is a possibility it is very important to see a knowledgeable doctor. No test is completely reliable. Many doctors do not understand Lyme and follow outdated treatment protocols. Besides Lyme, ticks can transmit several co-infections including Babesiosis, Ehrlichiosis (HME & HGE), Bartonella, and Mycoplasma. Many people who have Lyme are co-infected so it is important to be tested by a Lyme reputable lab. If you post where you live I will tell you of the closest knowledgeable doctor to you that I know of.

If you believe you have had Lyme during your pregnancy, it is important to have your child tested. Lyme can be passed through pregnancy and breastfeeding. The best Lyme pediatrician in the country is Dr. Charles Ray Jones in New Haven, CT. He sees patients from all over and has helped many children.

Keep searching for answers, you will find out what is wrong.

Last edited by ticker; 12-28-2004 at 06:26 AM.

 
Old 12-28-2004, 10:15 AM   #4
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Re: How long could you have Lyme Disease

Well Ticker, thanks for the info. I'm from Kansas but I have recently been to Mayo Clinic in Rochester & will be going back in a couple weeks for more testing. When I was there they found I have a mild myopathy so they are going to do a muscle biopsy. I am going to demand to be tested for Lyme Disease. Do you think they would be knowledgable about it?

If I do have Lyme then I've had it for 14 some years because I'm convinced all my symptoms started after the year bout with 3 cases of mono around age 15. After that I started with IBS and fatigue, excessive sleepiness. I was sort of used to it. Had pains here & there but then after the birth of my baby in Feb 04 things got dramatically worse. It was a trauma pregancy as at the start of my 7th month I had to be put on bedrest for high bp. Then I delivered one month early. Now since then I've developed terrible pain in my mid back left side that wraps all the way around my ribs to under my left breast and into my left underarm. Also have migrating pains everyday. Body aches like I have the flu. I have twitching of muscles I guess all over my body. I have tingling/numbness sensations all over my body & it's all getting worse. I'm going back this time to Mayo for real answers.

I feel confused about fibro. What they say is fibro fits all my symptoms and there are many people out there who have these symptoms but I think that the docs are just missing something in all of us. I think it's something more. I want to feel better, don't want to live the rest of my life feeling like this as I'm only 29.

So do you really think it could have been there for 14 years? Back then, I used to get low grade fevers along with terrible diahrrea and fatigue. Now I still have the IBS and fatigue but no low grade fevers. Also what do you think about Mayo being literate about this disease.

Thanks for your information

 
Old 12-28-2004, 02:26 PM   #5
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Re: How long could you have Lyme Disease

Hi Char123, I am happy to help.

It is always good to rule out other possible problems. Honestly, I highly doubt that the Mayo Clinic will be knowledgeable about tickborne illnesses. Most major medical facilities and universities are not up-to-date. I highly recommend that you be evaluated by a doctor recommended by a Lyme patient. There is an excellent one in Springfield, MO. His name is Dr. Charles Crist.

I think you should consider Lyme as a possibilty. Did you see the symptom list in the "Lyme Disease Information" post? Yes it is possible to have Lyme for many years before getting diagnosed. It happens often because it is rarely considered as a possible diagnosis. As I mentioned before, many woman have an increase in symptoms after pregnancy.

 
Old 12-28-2004, 04:28 PM   #6
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Re: How long could you have Lyme Disease

I keep seeing this IGeneX lab mentioned. Does anyone know if you could just go to a lab in your area and request the blood be sent there to see if you do actually have Lyme Disease?

 
Old 12-28-2004, 04:49 PM   #7
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Re: How long could you have Lyme Disease

Hi Char -

I would highly recommend you go through IgeneX. I went through LabCorp twice and then through Quest with Johns Hopkins - all came back negative even for coinfections through Quest. Then I went through IgeneX. It was interesting because my labs say Quest on the top but through IgeneX Standards so I think IgeneX may have sold their patented testing processes to IgeneX or something. Anyway the point is that I just wouldn't fool around with any of the others. I have lyme, babesia and ehrlichia. If the babesia had been missed and I hadn't gotten the proper treatment I would have remained sick. I have had lyme for awhile it looks like.

It should be said too that no lyme test or tick borne illness test is 100% reliable and this is why it is so important that you see an LLMD. Truly it is a clinical diagnosis made by symptomology and unfortunately the Medical Community at large has not educated itself enough to be able to diagnose it.

Char I am glad you are considering getting tested and that you found the lyme thread. Good luck and keep us posted.

-ncgirl88

 
Old 01-03-2005, 03:18 PM   #8
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Re: How long could you have Lyme Disease

Hi - call Dr. Stein-Golding in Texas . He is a Lyme literate dr.

Last edited by Administrator; 01-03-2005 at 05:42 PM.

 
Old 01-04-2005, 09:14 AM   #9
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Re: How long could you have Lyme Disease

I just wanted to add my 2 cents about Mayo Clinic. They are not lyme literate... I have read a few stories but we know these people personally.

My moms friends daughter was diagnosed with MS last year which came on suddenly and her doc wanted to start her on MS drugs.

Mayo clinic confirmed this diagnosis but did not think she should start MS drugs yet.

Long story short parents took daughter to Dr. C in Missouri, she tested positive for lyme, started treatment and is doing great.

Last edited by Komondor; 01-04-2005 at 09:20 AM.

 
Old 01-04-2005, 12:36 PM   #10
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Re: How long could you have Lyme Disease

i helped another person get dxd thru their family dr getting guidence from dr l and he had them order tests number 188 and 189 from igenix
jon

 
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