posted
I'm not sure if this is the best place to put this (maybe it belongs in medical questions), but it's really more for my mental well-being than anything else, so hopefully it won't be a problem.
About 2 months ago, in late May or early June, I got bit by 2 ticks in less than a week. Not too long afterward, I started feeling migratory weakness and pain in my limbs, feverish, tired, congested, coughing and generally crappy. I went to see the doctor a little over a week after being bitten the last time, and they sent off a blood sample for testing and started me on antibiotics just in case. The test came back negative, and they told me that I probably had a virus, since I had no sign of a bulls'-eye rash, and that I could stop taking the medication.
I had been in the middle of switching to a new general physician, so about a week later, I still had the symptoms and I went to see him. He came to the same conclusion, and my symptoms shortly disappeared. This lasted for about 2 weeks, and then they came back worse than before. I experienced increasing limb pain and weakness, more coughing and congestion, and I started feeling twitchy, tingly and itchy all over. I'm a pretty anxious person, and I started worrying a lot about this, as my GP had mentioned MS as a worst-case scenario. Of course, I started looking up my symptoms on the internet, and I came across so many horrifying neurological disorders that I worked myself up into a frenzy, which probably only made matters worse and ultimately resulted in panic attack.
I went to see my GP again, and by that time, I had serious limb pain, some numbness, joint pain, more tingling, genuine muscle weakness which had localized in my left arm and leg (mostly in the knee and calf). Being the anxious person I am, it's hard to tell where the real symptoms end and crazy made-up ones begin, but I've also felt difficulty breathing, swallowing, and talking. I saw my GP once again, but I was out of insurance coverage at the time, so we agreed to wait until my new coverage kicked in to start any real tests. My next appointment is in a few days.
In the meantime, I've been bouncing between completely freaked-out and some degree of calm brought on by my repeated attachment to relatively mundane causes for my symptoms. I had slight issue with walking now, as my left leg feels weak at the knee, and hurts in the calf and thigh. I've noticed that I've had difficulty typing because my left hand has been clumsy lately. I still feel like I have trouble swallowing, and speaking is a little more difficult as I tend to trip over words or to forget them altogether.
For some reason earlier tonight, I started looking into Lyme disease a little more, and it seemed to fit so well, especially given that I had been bitten by ticks shortly before these things started happening. I guess now I'm just wondering whether this seems like a feasible progression for the disease, considering that I've only had it over a 2-month period. I know for a fact that some of my symptoms are made worse when I stress out, and that I could possibly be conjuring up some of them myself with my excessive worrying.
Obviously, I don't expect a diagnosis or anything, but could anyone give me some insight as to whether this sounds Lyme-ish? And maybe some advice on how to talk to my doctor about this? Having seen him a few times now, I think that he's very engaged and seems to genuinely want to help, but I'm not sure how difficult it would be for him to take Lyme disease seriously as a possible diagnosis given the negative test results. (He's actually a resident at a medical center on a university campus, so I'm hoping he's still got some youthful open-mindedness).
Thanks for your time and thoughts.
Posts: 4 | From NC | Registered: Jul 2010
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onbam
Unregistered
posted
Please post in seeking a doctor and find one known to us to be Lyme-literate, as there is a coverup in medicine about this and most doctors thus have no idea how to treat it.
Check out underourskin.com lymecryme.com undertheightball.com
You need to do WHATEVER IT TAKES in order enable yourself to take 400mg doxycycline/day for 3 months past the point at which all symptoms resolve. The alternative is an incurable, contagious brain infection. You may still be cured at this point with proper treatment. multiple drugs--a cell-wall inhibitor, an intracellular drug, and an anti-spore agent will probably be needed. If you've had a bullseye rash or any sort of positive test--that is definitive proof. Don't believe a negative, as the tests that we've been all)owed to have are only 30-50% sensitive (as described on lymecryme, good tests get withheld from us.) www.lymeinfo.net/medical/LDSeronegativity.pdf
in addition, i might treat with these herbs, or at least banderol. (another researcher martin sievers, concluded that samento made things worse).
Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
Welcome to Lyme Net!
So sorry you are feeling so poorly, but glad you are trying to learn about Lye and trying to help yourself.
After reading your post it seems like Lyme could be an avenue to pursue. It can cause these type symptoms. Anxiety (or an increase in your normal anxiety levels) can also be a part of the Lyme picture.
Many of us are also guilty of writing off symptoms and thinking it could be this or that. It is so common in fact, we refer to it as Lyme denial.
Please know.... Johns Hopkins did a study that indicated 75% of those with Lyme are missed with the current tests being used.
50 percent or less of Lyme patients with known tick bites remember having any rash at all.
In NC you have another strain of Lyme (over 300 known strains) called STARI or Master's disease. It is not detected on the current standard tests... but acts like the more well-known strain, Borrelia burgdorferi.
There are also a number of known and unknown infections that can be passed along by ticks. Breathing difficulties (often feeling like a panic reaction) can be one of the symptoms of Babesiosis.
I can't say you do or don't have Lyme or coinfections, but I can say it would be important to educate yourself and find a doctor who is open to the possibility.
There are many symptoms that are associated with Lyme, you could have some or many of them. One common thread is they often migrate, disappear, return and move around more. That is very unusual of most other diseases.
t9im
Frequent Contributor (1K+ posts)
Member # 25489
posted
Hi Incend:
Welcome to the Lyme controversy, unfortunately this is both in the diagnosis and treatment. The good news is 2 months is still early (although not early enought for just doxy treatment).
My daughter also failed the Elisa blood test (which produces a 30 to 45% false negative rate depending on the study) and did not have the EM rash.
After 8 MD's, 3 Children's Hosipitals, 8 Months, a failed Western Blot test she was clincially diagnosed with Lyme and Babesia.
With a subsequent Western Blot she had 4 positive bands to confirm the Lyme.
The problem you are now and will be running into is the Infectioius Disease Society relys on the Elisa and even if you go to the Lab sites they reference it may take two months b/4 anti bodies are produced (i.e. when the test is taken the anti bodies may not be there or in a strong enough amount to register for the elisa reading).
I suggest you read Dr. B's advanced topics in Lyme as YOU will have to take control of this and not rely on MD's.
Without the early treatment co infections may also have taken route which will hinder treatment.
Have your MD order the Western Blot (know that the normal lab's exclude certain Lyme specific bands) and make sure he requests the band at the time of ordering.
Many times the early WB only shows band 41 which is for flagella (not lyme bacteria specific) but does indicate a spirochete bacteria.
Good luck.
-------------------- Tim Posts: 1111 | From Glastonbury, CT | Registered: Apr 2010
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