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Can Lyme go undiagnosed for 10 years?

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Posted 6/30/2015 6:36 PM (GMT 0)
Hello forum members,

Happy to discover you - this is my first post.

In 2005 I was treated for an itchy rash that was diagnosed as poison oak. Since that time I have had various symptoms - many of them frustrating - such as fatigue, muscle and joint pain - but none really debilitating. Over the years my MDs have chalked it up to thyroid, menopause, and most recently, possible fibromyalgia. In reading about fibromyalgia I stumbled upon Lyme so I dug up a photo I'd taken of my rash in 2005 and it resembles a bullseye rash. I never thought there could be a connection until now.

Is it possible to have undiagnosed/untreated Lyme Disease for 10 years without coming down with serious and/or undeniable symptoms?

Thank you,
Leslie
Posted 6/30/2015 7:52 PM (GMT 0)
Yes! I believe I was undiagnosed for around 30 years. I had a few odd symptoms when I was younger, but nothing that made me realize there was anything really wrong with me. I didn't start having serious symptoms until I had my son. I believe the stress of pregnancy depressed my immune system and let the Lyme become a problem. Like you, I had all of the typical thyroid symptoms and joint and muscle pain. I was fortunate that when I found a new doctor to help with my thyroid, he happened to be Lyme literate and helped me to start healing.

I encourage you to find a LLMD. Best wishes to you!
Posted 6/30/2015 8:08 PM (GMT 0)
Hi lhph241 - welcome to our community!
Yes, you can go have undiagnosed lyme disease and have symptoms, but not severe ones. I think that's what my husband has been going through, in fact.

I agree with Nosila, you should find a LLMD to evaluate, diagnose, and treat you!

You can also do an Igenex Western Blot IgM and IgG test.

To find a LLMD, start a new thread titled: "Looking for LLMD in/near______" and insert your city/town and State.

Then enable your email so members can send you names of LLMD's. We can't post the Docs name on here due to privacy reasons.
Posted 6/30/2015 9:25 PM (GMT 0)
Yes, it is certainly possible, it took 17 or 18 years in my case.

Patients often go from dr to dr, to alternative healersetc, before getting diagnosed. I didn't keep a journal, but I think I visited about 7 different GP's, about 6 hospitals and about 20 specialists in total.
Posted 7/1/2015 4:32 PM (GMT 0)
I went un-diagnosed for 9 1/2 years. My symptoms started right when I turned 12 and got worse when I was 19 but I didn't know it was Lyme until I was 21, and now I am 22. I was told I had fibromyalgia and that maybe my pains were related to my scoliosis. I still lived a normal life until a truck rear ended me and I have been waaay extremely worse since then and I can no longer live a normal life. Before the accident my health problems didn't majorly hinder me from doing anything but now I would say I am disabled. I read that can happen with Lyme; a traumatic event can trigger it. I probably still wouldn't know I have Lyme if I hadn't been in that car accident.

So yes, you can go un-diagnosed and not have debilitating symptoms for may years.

I found out about Lyme online accidentally, too. Then I went to see an LLMD who did a western blot test through igenix and it came back positive.
Posted 7/1/2015 4:53 PM (GMT 0)
Hi lhph,
Welcome to our community!! I'm so glad you found us.

I went undiagnosed for 37 yrs and then without adequate or effective treatment for 40 yrs - and I still managed to heal.

I see that you have another thread asking for LLMD's and I'll post some information there as well.
Posted 7/1/2015 7:17 PM (GMT 0)
Hello,

Unfortunately it seems to be quite common due to the general ignorance/denial about Lyme in the medical community. It took me 20 years to get diagnosed, and even then I had to spend 30 minutes convincing my GP to requisition an Igenex test and say I'd pay out of pocket for it.

For the first 10-15 or so years my symptoms were relatively mild. Eventually it started to grind me down and things got worse as I got into my 30s, maybe due to job stress.

It can definitely be a long road to recovery when you've had it for so long. I'm still slowly getting better, now 3.5 years into my treatment.
Posted 7/1/2015 8:43 PM (GMT 0)
Yes-the majority of Chronic Lyme peeps had/have Lyme undiagnosed FOR YEARS...

In the 90's I was 1st diagnosed as JUST having allergies that caused my migraines. I had immunotherapy(shots) twice, each taking a full year. Took nasal sprays that caused sinusitis.
Also in the late 90's was told my stomach pain was G.E.R.D and that I'd be on Nexium/prolosec for life...I ended up w/a severe magnesium deficiency using those for years!

In 2004 I was diagnosed w/benign positioning vertigo. Still suffered w/migraines, stomach pain, and allergies, and heart Palps.

2007 after getting an acute respiratory infection was told it was JUST asthma later on. I asked for Mycoplasma testing but was told no. Still on prilosec for tummy pain and mass quantities of ibuprofen for migraines. This is the 1st yr I noticed weakness, fatigue, muscle aches, stiffness. But I was told, "Oh you're just stressed"!

2010-my MD said, "Well your thyroid is a little low, let's put you on levothyroxine" still on Advil for migraines, prilosec, still allergies/asthma, STILL complained about stomach pain, and still had heart Palps! I Asked my MD, "But what's actually CAUSING these things". She referred me to her ND, who discovered MAJOR food intolerance so she just focused on healing me through diet, but I STILL had stomach pain of two different types and episodic. Also discovered during this year a severe vit. D deficiency. The diet change 'seemed' to help(only some) stomach pain, allergies, headaches, and even heart Palps BUT...

2012 went to E.R. for severe upper ab pain-had the gall bladder removed. It was an outpatient surgery, went home 30 mins after 'walking up', but went back to E.R that night w/chest pain & racing heart!!! But NO heart problems were found!

My migraines and mood issues seemed to lessen once fixing the Vit. D issue, but STILL all the same symptoms.

Finally, after my sister who was diagnosed with Lyme in '08', was constantly 'bugging' me to see an LLND that she found in my area-

I FINALLY went and got diagnosed June 2014, of Lyme and co-infections including viruses!

Been on treatment for a year and am doing better, although I still have some muscle pain, arthritis, fatigue, difficulty concentrating, balance issues, heart Palps(but is caused by herx), and migraines. Although, its highly likely muscle pain & fatigue is due to detoxing from heavy metals. Oh my so-called, "asthma" is gone-that's good!!!

And I must be doing better if I was able to sit long enough to type this LONG testimony-LOL!
Posted 7/2/2015 1:33 AM (GMT 0)
Sweetpea...

That's great! Sounds like you're heading in the right direction...

Happy for us all..
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