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Mysterious Disease - could it be Lyme?
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Mysterious Disease - could it be Lyme?

I am a 26 y/o f and I have been very sick for some time and wonder if it is Lyme Disease.

* In December 2009, I went to bed with a mild knee pain, and woke up bedridden with excruciating pain in both knees. My knees weren't weak, they were just hurting a lot. Months and years following December 2009, doctors did a series of tests, but all of them came back inconclusive, though I am still unable to walk despite some improvements. The doctors don't think it is an infection, an auto-immune disease or reactive arthritis (No Lupus, RA, FMF, etc.). They have also checked for bunch of STD's all of which were negative.
* In May 2012, my wrists started hurting just as randomly as knees did, and never fully healed.
* In October 2012, I got into a car accident that was not very serious at all, but I hurt my back as a result and it never fully healed.
* In May 2013, my hips started hurting out of nowhere just like my knees and wrists, never fully healed.
* Also In May 2103, both my eyes got some sort of infection that never fully went away (the doctor says there is nothing wrong with them other than mild allergy), but my eyes still hurt/itch pretty often and I can't wear contacts. I never had an eye infection since I started wearing contacts in 2001.
* In December 2013, my ears became very sensitive to noise -especially high-pitched, and they hurt. I've seen a couple of ENT's about it. I don't have an ear infection. My chiropractor and the last ENT I saw believe my sensitivity is due to some weird jaw joint problem - which is connected to the rest of the issues I have.
* The pain is never just located in the joints. It's mostly the muscles. For instance, when my knees hurt, it's the entire frontal knee and the IT band and some other leg muscles. When wrists hurt, it's the wrists and certain muscles in my forearms.
* Sometimes small areas like my thumbs or my toes hurt for a while and then the pain mostly goes away.
* There is never any swelling or redness. All X-rays, MRI's, etc. are normal
* I often (at least once a month) get migraine-like headaches that last anywhere from six hours to two weeks.  
* I used to get chronic vaginal yeast infections (first started in 2007) --but I stopped getting them since I was put on a very restrictive diet in July 2011 (no dairy, gluten, sugar, fruits, nuts, soy, caffeine, mushrooms, vinegar, yeast, alcohol)
* I used to get bloated quite often but stopped since I started my boring restrictive diet.
* I have had skin lesions since I was in elementary school.
* In February 2012, I saw a chiropractor who thought I have yeast overgrowth. The herbal supplements he put me on improved my life significantly, but has not resolved my issues completely.
* I am very sensitive to medication in general, and often show severe side effects which scares me.
* I had TB, chicken pox, measles, onset of pneumonia, and a UTI as a child. I also had two other UTI's since I've become an adult - meaning I was exposed to a lot of antibiotics.
* I had Hep B and HPV vaccinations.  
* I have started taking probiotics because one of the tests showed that my gut has almost zero lactobacillus and bifidobacterium.
* For some time, I have been wondering if my issues can be thyroid related. My thyroid levels are slightly not normal. However, they are not abnormal enough to explain all these problems I am having. The general consensus seems to be that my slightly abnormal thyroid levels are more like a symptom rather than the root of the problem.

* I have been tested for Lyme and it came back negative. But the more I read, the more I find out how hard it is to be accurately tested for Lyme, so I added Lyme back to my list of possible causes.

The past four years has been like trying to find my way in pitch dark. I would appreciate any and all insights, tips, opinions on this. Thanks for reading!
8 Comments Post a Comment
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Avatar_f_tn
What symptoms  you're describing COULD be Lyme because Lyme can affect every system in the body and often does.

You gave a good recap of your health problems and that helps. But a couple of the more important ones are missing (inadvertently)--- the labs and the tests you had done.

If you could tell us the labs that your tests were performed at that would be a great help, and what the tests were for and the range levels for each test.

I'm just going to comment on the lab tests that are most important for Lyme: If your tests for Lyme were NOT done at Igenex Labs in California then you haven't been tested by the best (only?) lab for Lyme.
I know that sounds as if I work for them (grin) but others will agree with me. Their Lyme tests are more comprehensive and more specific than a lab test done at, say, LabCorp, Quest or almost any other lab in the U.S.

Also a person should  be fully investigated for Lyme by a good Lyme doctor (we give them the nickname LLMD which means Lyme Literate Medical Doctor) not an Infectious Disease doctor or your PCP. LLMDs will always use Igenex as the lab.

So, if you don't mind---- can you tell us what labs did the testing for Lyme disease, the results and the ranges. Those are all on your copy of the lab report. If you don't keep hard copies of your lab results you can call your doctor and ask for them to be sent to you. All physicians should always give you your copy----in fact it's probably the law.

So----- you may NOT have Lyme but there's also a chance that you do. Do you ever remember a tick bite? (Not everyone does, but if you do remember, please tell us.)



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Avatar_f_tn
You sound a lot like other Lyme patients who tested false negative for Lyme and got very sick while they went undiagnosed.  What makes Lyme even more likely is that doctors can't find any other diagnosis for you.

You'll need to get to a LLMD and get tested at IGeneX.  IGeneX is a specialty lab that does more advanced testing.  I was false negative on standard tests, but IGeneX found Lyme specific antibodies in my and called me "positive".

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Thank you for your reply! I am digging up my health file. Will answer to your questions as soon as I find which lab I got the blood work done.
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Thank you. Everyone is talking about IGeneX. Next week I have another doctor's appointment. I will bring this up.
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Avatar_f_tn
Thank you---- and I'm glad you're keeping all your records. It does help a lot of times.
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7139665_tn?1388446230
Hello,

My Lyme test was done by Quest Diagnostics. They haven't given me the units of the results, but the lab report says I tested negative for Lyme Disease AB IGG WB, Lyme Disease IGM, WB, and Lyme Disease AB screen. The negative range is given as "< OR = .90" Does this help?

Like you and Ricobord said, I already know that I probably should find a doctor that sends my results to Igenex labs.

I do not remember a tick bite shortly before this all started. I had gotten a tick bite years ago when I was in elementary school. The debilitating pain started when I was 22, but I got the tick bite when I was 11 years old or something.

Do these give you more clues? I would be happy to answer more questions.  Thank you so much for reading and commenting.
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Avatar_f_tn
"Thank you. Everyone is talking about IGeneX. Next week I have another doctor's appointment. I will bring this up."

If you bring up the topic of Igenex to the same doctor that ordered from Quest, be prepared to hear him/her tell you why Igenex:

1. Isn't a good lab
2. Is not recognized by the CDC
3. Blah Blah Blah

If he/she WILL order a test via Igenex then that's a Plus One in favor.

Not everyone remembers a tick bite. Esp. if it was a nymph tick that bit you and they have a higher rate of passing Lyme to the host than adult ticks.

And there are many people who remain asymptomatic for years (maybe all their life) so the time frame isn't an issue since we don't know.

And, yes, every little bit helps us to try to help you. Thank you.
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It's a new doctor, so I have no idea what to expect, but I will be prepared nonetheless. If I know more and it seems like something worth updating here, I will. I wish pain-free days to everyone here.
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