posted
About 3 months ago, I started experiencing some achy sinus pain, with occasional shooting pains in my head. Hence, I went to the doctor and had X-rays to check for a sinus infection.
I was cleared and told it was just from the changing season into winter. The symptoms persisted and gradually got worse, to the point that I would have pain in and around the left side of my head (particularly the eye region).
The pain got so bad, that I had to go to the ER. At the ER, they did a CT scan, which came back clean, and sent me home. However, the doctor suggested that I should be tested for Lyme.
I started to realize just how often I pull ticks off my skin as a serious mountain biker, and so I was tested with the ELISA and Western blot. Both came back negative.
Since, my symptoms have progressed with tingling in my face and occasional muscle twitching around my temples and a daily stiff neck/shooting pains in my back. I have also found out that I have developed hypothyroidism.
I can't help but firmly believe I am suffering neurological effects of Lyme's disease, despite testing negative. I need help - has anybody experienced such symptoms?
I'm at my wit's end, and I feel totally stuck and helpless. People are starting to think I'm crazy! Any suggestions would be greatly appreciated!
**text broken up into smaller paragraphs .. please do this so it can be read more easily**
droid1226
Frequent Contributor (1K+ posts)
Member # 34930
posted
Sorry, but all I can say is most lyme patients do actually test negative on both Elisa and Western blot.
You should post your results. The criteria for a positive is ridiculously high. A lot of patient's immune activity is so low that they don't produce antibodies...Therefor a negative will show on the Elisa.
As far as the Western Blot, there are certain bands that are lyme specific that can give you more of a clue. People here will help.
Considering you have the exact same story that most of us have, have every hallmark symptom, and live in PA, the state with the highest number of lyme cases in the country...There's good reason to suspect it.
posted
Thank you for the reply, I will get a hold of my results and post them up! The low immune activity would make perfect sense in my case, since I am consistently training hard at high volumes for cycling. It just seems that my doctor is set on the fact that the test came back negative, therefore there is no way I can possibly have Lyme's Disease. It's very frustrating.
Posts: 7 | From Pennsylvania | Registered: Feb 2015
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posted
Ditto what Poppy's saying - best to remove your real name from your byline, where you signed up.
Lyme tests often come back negative. That's why Lyme doctors treat clinically.
Sounds like Lyme to me. You're not crazy! People just haven't been educated properly about what's going on.
Lyme affects every system in the body. For example, your treating Lyme doctor can test your thyroid and put you on thyroid. I tested low in T3, went on Armour thyroid and felt present again. My doctor also puts people on Naturethroid.
You can ask for referrals to Lyme-treating doctors in PA in the Seeking A Doctor section.
Lot of info in the stickies at the top of Medical Questions. You can also use the Search function at the top of the page and type any word or phrase and archived threads will come up. Just remember that we're all different in terms of what we're dealing with and how we respond to treatment.
Treatment for Lyme falls in three categories: kill/deter the organisms, detox, and fortify the body. Just be patient with the learning curve, as it will become a new lifestyle, to treat.
Posts: 13116 | From San Francisco | Registered: May 2006
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posted
Thanks, and yes, the pain can be very sharp at times. Other times it's dull, and it jumps around in location. It's hard to describe, because there's so much variation. I have currently located a few neurologists who are Lyme literate. I'm hoping they can help me figure out what is going on!
Posts: 7 | From Pennsylvania | Registered: Feb 2015
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droid1226
Frequent Contributor (1K+ posts)
Member # 34930
posted
When I first started getting sick, I could still run miles and bike forever....It was a slowwww decline over a few yrs. Endurance can still be there for a while. I know people who still train through lyme treatment, most avoided babesia(a co infection of lyme). Your discipline will help you through any autoimmune/neurological condition like lyme.
Sounds like if it is lyme, you are at a critical time now. It disseminates through the body over yrs. Then burrows in tissues. You'll wish you'd taken care of it.
May not be lyme, but it sure sounds like it. Hypothyroidism, nerve pain in the face, chronic sinus infections, twitching, and you've been exposed.... Couldn't sound more like lyme or some type of infection to me.
Please get your results asap and post, for your own good. I wish someone would have told me when it first started coming on in the first year to take care of it AT ALL COSTS.
Wow, your symptoms are identical to the way my Lyme started out. I mean, no joint issues at first. I was aggressively tested & scanned to rule out any potential brain issues. I was told I had a deviated septum- but who doesn't (ha ha). So I had that sinus surgery.
The vibrations were SO unpleasant! My teeth felt like they were "vibrating". What a wired sensation. Often, the vibration sensation caused the light headless to worsen and then I would vomit. Again, so wired! Other Lyme & co-infection symptoms gradually developed over the years.
And, by the way, after 10 years of $$$$, Lyme-specific testing, I still have no positive results on paper. But, my llmd's over the years made a clinical diagnosis of Lyme.
Well, good luck to you! So glad u found this group.
Posts: 82 | From New York | Registered: Aug 2012
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droid1226
Frequent Contributor (1K+ posts)
Member # 34930
posted
No. Do not see a conventional infectious disease Dr. They are the reason a lot of us are here. Infectious disease Dr's have to toe the line of "lyme cannot persist" I saw 2 ID Dr's early on and I had 2 positive Elisa's AND a western blot. They both prescribed a week or 10 days of antibiotics when at the time I needed a few months at least.
Neuro's are pretty much useless as well. The whole problem is two fold. Getting better requires a longer term antibiotic regimen than they are legally allowed to prescribe & also, they never learned about this new disease in school.
Med schools still a do not include lyme treatment in their curriculum. Most lyme Dr's have learned about the disease because it's affected them or someone in their family.
It's probably a lot to take in now. Don't worry about it, just post your results here. Generally, there are red flags on a western blot like a 31 or a 39 band that pops up that normally wouldn't on a non infected person.
Do you have any stomach/digestive issues? That's pretty common with lyme.
posted
If I shouldnt see a neurologist or ID doctor, what options are left? Haha. No, I do not have any stomach or digestive issues. Just some weird neuro stuff going on.
Posts: 7 | From Pennsylvania | Registered: Feb 2015
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