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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posted
Your test only a week after the tick bite was too early to show anything. Antibodies will not show up on tests until 4-8 weeks after exposure.
You were bitten by ticks, and shortly afterwards developed symptoms. It was in May or June, which is a common time for people to get Lyme and not a common time to get viruses.
I got bit on May 25 last year and got symptoms 10 days later. I had two episodes of fever and flu-like stuff that finally sent me to my doctor 2 months after the bite. I never got a rash even though I was looking for it.
I am not a medical person and can't give you medical advice or anything, but all your symptoms sound like ones that can be caused by Lyme and/or other tickborne diseases. The pain on the left side of the body is typical of Lyme. Mine tends to be on the right side.
The tests are inaccurate. If they show that you have Lyme, then you definitely have it. False positives are very rare, but since you got tick bites and then Lyme-like symptoms, a positive test would confirm that that's what it is.
False negatives are very common in people who DO have Lyme. They frequently go on to have positive Lyme tests later on, and they may have had tick bites, bullseye rashes, and other obvious indicators for Lyme from the beginning. A negative test means nothing.
You need to be diagnosed by an expert in Lyme, according to your history and symptoms. An LLMD will have the experience to tell whether you have Lyme or not, and if you do, will treat you whether you have a positive test or not.
An open-minded regular doctor may be persuaded to give you some doxycycline while you wait for an appointment with an LLMD. Look at the ILADS website for research information that you can show to your doctor, to justify asking for antibiotics for longer than the 2-4 weeks you will probably be offered.
Read the book Cure Unknown by Pamela Weintraub to understand a lot more about the science and politics of Lyme disease. The DVD Under Our Skin is an excellent summary of the same topic, and useful to show to friends and relatives if you have Lyme and are seeking their emotional support and understanding. You can get it from www.underourskin.com.
Please note, anxiety and panic attacks are possible symptoms of Lyme or a coinfection. Your symptoms are not in your head, and you are not making them up, imagining them or causing them yourself.
I heard the same suggestion from a relative--that I should stop worrying so much and "making myself sick." I explained to her that FIRST I got sick, and THEN I got worried. It is bad enough if you have to suffer from a disease from bacteria you got from a tick bite, but it just makes it harder if you start to doubt yourself because people around you tell you things like that. Most of us on this board have heard similar things from our doctors and loved ones at some point (that our illness was all in our heads), and yet have gotten better mostly with antibiotics and not psychiatry (broadly speaking).
The quicker you get treated, the better chance you have to get well and stay that way, and the faster it can happen, so please don't give up until you can see an LLMD. If an LLMD really thinks you don't have Lyme, they can help you figure out what else it could be. Based on other people's experiences, Infectious Disease specialists, neurologists and rheumatologists are unlikely to be very helpful in most cases of Lyme disease.
Regarding insurance, most LLMDs do not take insurance anyway, due to the unfortunate political situation explained in Cure Unknown and Under Our Skin, so you don't have to wait until you're covered in order to see an LLMD. You may have to travel out of state as well. It is worth it, though, to get good medical advice and help for the cause of your illness, rather than get the runaround and a lot of expensive, useless tests that come out normal, and at best some drugs to mask your symptoms for a while.
My blood tests were negative for Lyme and coinfections, but I am gradually getting better with oral antibiotics.
Good luck to you, and don't give up. You can beat this.
-------------------- Don't forget to laugh! And when you're going through hell, keep going!
Bitten 5/25/2009 in Perry County, Indiana. Diagnosed by LLMD 12/2/2009. Posts: 756 | From Inside the tunnel | Registered: Jan 2010
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Carol in PA
Frequent Contributor (5K+ posts)
Member # 5338
posted
quote:Originally posted by LightAtTheEnd: Please note, anxiety and panic attacks are possible symptoms of Lyme or a coinfection.
The reason that anxiety and panic attacks are symptoms of Lyme, is that they are caused by low magnesium.
The Lyme bacteria use up the magnesium in our cells, which causes lots of problems.
You can supplement with a good magnesium, NOT mag oxide.
Carol
Posts: 6947 | From Lancaster, PA | Registered: Feb 2004
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Carol in PA
Frequent Contributor (5K+ posts)
Member # 5338
posted
You don't need a physician to supplement magnesium. The blood tests for magnesium test for the amount in the bloodstream, which does not show how much is in the cells of the muscles and nerves.
This is something you can do for yourself. You will probably notice that some of your symptoms will begin to diminish within a week or two.
Carol
Posts: 6947 | From Lancaster, PA | Registered: Feb 2004
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posted
Thanks everyone. I appreciate your input on this. It's comforting to hear that I'm not crazy, and very helpful to have some more information on what I can actually do about this.
Posts: 4 | From NC | Registered: Jul 2010
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troutscout
Frequent Contributor (5K+ posts)
Member # 3121
posted
get to a Lyme Doctor before you are outside of the window for a full recovery
Sorry...I'm not diagnosing you.
I'm also not afraid to tell you the truth.
I'm not a Doctor.
But I am a compassionate person that has seen too many people end up on here...permanently, because they kept listening to ignorant Doctor's.
Go now...go quickly.
The best thing here....is that you found this website.
You also can make up your own mind....
But let me point one thing out to you here; What those tests and doctors aren't telling you...is that they are using tests that are incapable of being accurate during early infection...and a Lyme Literate Doctor knows that.
I would rather suffer sunburns from too much Doxycycline for 4 month's than put up with Lyme Disease for the rest of my Life.
So here's the choice I would make....
Turn this race into a Sprint and get it over with as fast as possible...
Or get ready for a marathon by waiting too long.
Trout
PS....You''l be fine...just find a Professional that can give you good answers...one that Knows Lyme.
-------------------- Now is the time in your life to find the "tiger" within. Let the claws be bared, and Lyme BEWARE!!! www.iowalymedisease.com [/URL] Posts: 5262 | From North East Iowa | Registered: Sep 2002
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