posted
I was referred to this forum from another forum saying i could have Lyme despite having a negative blood test. I'll tell my story and see if anyone on here has an opinion either way.
I didn't start feeling sick all the sudden, it happened over a course of years. I'm 20 now, and the earliest I can remember definite symptoms was when I was 15, the summer before my sophomore year of high school. I used to live in Rhode Island and have always been outside a lot, so I could have gotten tick bites even though I never noticed one and certainly never got a bulls eye rash.
I started noticing occasionally I would have these episodes where I would get these tingling, burning, and itching feelings, often simultaneously feeling hot and cold. These episodes would often happen after warming up quckly, when exercising enough to sweat, or in stressful situations. I also noticed that my body temperature was sometimes off, being either unusually warm or cold, and other things like occasionally not being able to concentrate, getting chills or sweating for no reason, and some days I'd be unusually tired for no reason. I had always been thin, but I suddenly stopped gaining any weight when I was 150 pounds (and 6 foot 4), and have been lucky when I've weighed that much since then. Overall, they were only an annoyance at that time however, they would come and go at certain times of year, and I could pretty much ignore them and live a pretty much typical life for several years.
That changed in the fall of 2004 when I went to college. Very soon after starting, I started to feel worse and had many symptoms like heart palpitations, shortness of breath, abdominal bloating, sore legs, feeling unusually cold more often than before, being unusually thirsty, and the tiredness. I also had mental problems such as being unable to concentrate. I couldn't ignore them anymore but I still didn't think it was too big a deal and attributed it all to the cafeteria food (because I felt worse after eating), not getting enough sleep, and the normal not so healthy college life, even though I was still living more healthy lifestyle than most college students. My suspicions were partially true because when I went back home for Christmas last year, many but not all of the symptoms abated.
When I went back to school for the spring semester, I felt as I had before, even slightly better because I was getting more sleep, until March that is. In March it suddenly got much worse and I had to face it. It wasn't so much new symptoms as the ones I had intensifying. I had a tereible time concentrating in class and formerly occasional attacks of tingling, burning, and itching sensations became common. I attributed it all to the food and found out about MSG sensitivity and all the hidden forms of MSG, and just barely made it through the semester believing that once I got home the situation would be only a memory when I eliminated all the bad foods.
I was right about having an MSG sensitivity and felt somewhat better when home in the summer, but still noticably sick. I had many medical tests but they were all fairly normal except for one that said I was deficient in IGA antibodies, but they made no big deal over that one,and basically said I was normal, although I didn't feel normal and felt worse throug the summer, when I developed an irritable bowel and more fatigue. My ears started ringing a lot as well, as well as my legs and knees getting more stiff and sore and even occassionally my shoulders.
Despite all this I could still get by and went back to school in August against my better judgement. I joined an eating coop so I wouldn't have to eat in the cafeteria, but still felt much worse. Nearly all the time I wasn't doing something I had to do, I would be in bed and doing horrible in classes. My short term memory was bad and I talked slow. The school nurse wasn't al all helpful and just said I needed to see a psychiatrist. I finally dropped out on medical withdrawal at the beginning of October.
I was back home and still thought it all had to be from something in the food because some of it had been. I have found since certain other food sensitivities and ways to eat that make me feel better, most importantly severely limiting sugar and to a lesser extent starches. However I've come to regard the food sensitivities as a symptom rather than a cause. Another thing I fould that really helped is taking vitamin b12 supplements, which helped a lot with the burning and tingling sensations, although I still get another kind of tingling in my legs and feet. I've tried various multivatamins and all have given me adverse reactions, so I've stuck with just the b12 and getting the rest through food. I had a few more medical tests in the fall including the negative lyme test I mentioned before. It was the IGG and IGM lyme tests if that helps you.
About a month ago I started going to an acupuncure and chinese herbalist, which has helped significantly, making me feel better than I have in a year some days, but others have still been pretty bad, but overall I was feeling good enough to start looking for part time jobs a few weeks ago.
My current episode that is the cause of this and other posts on other forums recently is that starting last Thursday I have had an episode where my symptoms intensified in a major way including ones I haven't had for a while like the burning tingling, clogged ears, simultaneous hot and cold, lack of concentration and even a nauseous feeling that has never been a normal symptom before, although never gotten to the point of vomiting. Actually, I feel significantly better today but still this episode puzzles me.
I looked through a symptom list of lyme and I have or have had about three quarters of them but am skeptical especially since a few months ago I was convinced I must have celiac disease and ended up not having it. I would be greatful for any input either way if anyone has any.
Posts: 10 | From Minnesota | Registered: Dec 2005
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David95928
Frequent Contributor (1K+ posts)
Member # 3521
posted
Hey, welcome to Lymenet but sorry you need it.
What you describe is strikingly similar to the progression of symptoms I had. So clinically, it seems like a definite possibility.
A lot of people with Lyme have negative tests due to their immune systems being compromized by Lyme. The tests measure immune response, not presence of the organism.
There are two mainstream tests. One is called the ELISA (worthless) and the other is the Western Blot (less worthless). If you had a Western Blot, and I suspect you did, the lab report may list the various bands and the degree of reactivity. If you can get a copy of the lab report, it could tell you something as the labs use a high threshold for declaring a test to be positive. If you get those results, you can post them here and people more expert than I can give you feedback.
Also, there are other diseases spread by ticks and one, or more of them, could be contributing.
Often, it is very, very difficult to get mainstream physicians to consider a lyme hypothesis, not to mention getting adequate treatment. Many here see doctors who specialize in Lyme and they are referred to as Lyme Litereate Medical Doctors (LLMD). You can post on the "Seeking a Doctor" board on this site and people may be able to offer you some recommedations. Also, you may be able to get a local support group contact off of this site. Often they have the lowdown on local non- specialists who nevertheless are knowledgeable and treat aggressively. That's what I found and it worked out great.
Other will be along to post some (many!) very useful links. You need to start reading because few of us have gotten treated without advocating for ourselves. If you can enlist the support of your parents in this sage, it might help.
Welcome aboard and good luck.
-------------------- Dave Posts: 2034 | From CA | Registered: Jan 2003
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You will learn that Lyme disease is just one infection among many that you may have from some kind of bite. Minimally you should get tested at a lab called IGENEX. www.igenex.com
Do you have any joint pains?
Does the severity of the symptoms migrate... from one being dominant and then another?
Posts: 294 | From nevada | Registered: Sep 2005
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posted
David, Thanks for the reply. I don't know if I had the Elisa or Western Blot, I'll see if I can find out. The weird thing was that I didn't even get an official results paper back, only a card from my doctor saying my results were normal, while when I had other blood tests I would always get results sheets back with numbers and everything.
Before i take any further action, I would like to know if you or anyone else here know if there are any specific symptoms that distinguish lyme (or other tick diseases) from other things, even though the symptom list matches pretty well what i have felt, I am still worried that I am on the wrong track considering my previous experience being "sure" I had celiac when I didn't.
welcome,
I do sometimes get pain in my knees, but it's muscle pain and weakness that are much more of the problem for me than joints. What I have noticed in my joints is increased tendency toward crackling noises when moving them certain ways.
The severity of the symptoms definately changes and migrates. Today I feel much better than I did just a few days ago. One example of the symptoms changing is the bloating feeling I sometimes get after eating, I get it for about two days and then not for about a week and then get it again, I have tried so hard to figure out what I was eating that was causing that, until i finally realized that I could get it real bad one day and then eat the exact same things a few days later and not get it. Feeling cold or hot is also something that changes from day to day and even hour to hour, although recently I've been feeling cold a lot more than hot but that has been different in the past. Many other symptoms just appear for a while and then disappear only to reappear at some later time when I haven't been thinking of them.
Posts: 10 | From Minnesota | Registered: Dec 2005
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posted
I forgot to mention that as far as symptoms fluctuating, energy level is a huge one, especially since starting the chinese medicine I have had some days where I feel like I have energy, although it often turns out to be "nervous" energy that dissipates fairly soon after starting to actually do something. Other times I feel so tired I just can't seem to keep my head up, luckily I have enough control that I can often delay those episodes until I have nothing I need to do.
Posts: 10 | From Minnesota | Registered: Dec 2005
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For your age and geographical background, I would seriously suspect tick born diseases. Hopefully there is a Lyme Literate Medical Doctor close to you. If you tell them your symptoms, they can diagnose based on that alone.
One of the symptoms that you have that clued me in is ringing in the ears. I don't know of any other disease that causes all the other stuff you've got plus ringing ears (aka tinitus). I had that for so long plus waxing and waning energy. It sometimes takes extra stress for the symptoms to really flare.
Another thing that may have caused you more trouble at school than at home is mold or toxins in the environment at school. Many chronic Lyme patients end up being very susceptible to toxins.
I definitely think that it would be worth looking in to the possiblity of having 1 or more tick born diseases. There are many and they are not only spread by deer ticks.
Take care and good luck,
Corgilla
-------------------- "I'll never forget good old Whatsisname." Posts: 694 | From PA | Registered: Jun 2003
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David95928
Frequent Contributor (1K+ posts)
Member # 3521
posted
Asking for a copy of a lb report is perfectly reasonable. In most states, it is actualy your property. If the doctor won't allow it or even gives you a lot of trouble to get it, you will have learned something very important about your doctor.
-------------------- Dave Posts: 2034 | From CA | Registered: Jan 2003
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posted
welcome to this board, Thundersnow. from all your symptoms,i'd say "yup, you got it!", even if i'm not a doc. you know what they say "if it walks like a duck,quacks like a duck,then there's a mighty good chance that it's actually a duck!" that tinnitus thing you mentioned,among many others, has been one of my most annoying sx.i've also had a lot of the hot/cold and tingling stuff going on. don't worry about the test results being 'normal'--i've had lab work done when i felt horrible, and nothing abnormal showed up. good luck in finding a LLMD nearby, so you can start getting well. take charge of your health!
-------------------- ~*~ Carole ~*~ Young at Heart Grandmother of 4 Posts: 140 | From Morristown, NJ, USA | Registered: Jan 2004
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NP40
Frequent Contributor (1K+ posts)
Member # 6711
posted
You certainly exhibit strong symptoms of lyme. There are a couple of qualified LLMD's in your area. Send me a PM and I'll be glad to pass on the info.
Posts: 1632 | From Northern Wisconsin | Registered: Jan 2005
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Sorry to hear about what you've been going thru but I too can relate to the slow progression of symptoms. It always seemed to be something, panic attacks, vertigo graduating to joint pain and memory problems. Yup, I had alot of symptoms but after 4 years of treatment I am doing very well. You do sound like a classic lyme case.
Testing is essential to get it right. I've had two WB's and a PCR, all were negative for lyme. Finally The Bowen QRIBb test gave me my answer. Positive for lyme AND babesia. No wonder I had the hot malaria sweats! To me this is the most sensitive test because it also catches both the cyst form of lyme. Igenex is a great test too but it does not catch the cyst form and most late stage lymeis have the cyst form.
Igenex has a possibility of being covered by insurance, the Bowen is a donation of $250 that is tax deductable. For my money I like the Bowen, it is more accurate.
Good luck!
Posts: 982 | From Florida | Registered: Feb 2002
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posted
Thanks for the replies, I left a message for my doctor to see my actual test results from back in October, she won't be in until next week. I still don't know if it was an Elisa or Western Blot, if it was a western blot I'll post it here. I'll see where that gets me and then think about contacting an LLMD, I've already asked about ones in my area.
Thanks for the symptom list, tequeslady, but I can't seem to get to any actual list, an image just pops up when I click on the symptoms list that doesn't say any actual symptoms. I guess it must be something weird on my computer. I found the symptoms list at http://www.canlyme.com/patsymptoms.html and i have or have had 50 of the 75 symptoms listed.
I've done more reading on other people's stories and realize that assuming I do actually have lyme, I'm actually pretty lucky because of how I've been feeling significantly better since September despite not knowing then root cause of my problems, by just my diet changes, acupuncture and chinese herbs, except for my recent flare-up that lasted for a few days I feel halfway better this month than I did in September, especially in amount of energy although my energy often happens in bursts at weird times. In September I would never have been able to concentrate well enough for enough time to write coherent posts as long as I have on this thread. The flare-up happened a few days after my acupuncturist sitched my herb formula, so when I see her tomorrow I will tell of my recent experiences and hopefully change herbs.
Corgilla, interesting theory about the mold and toxins at school making it worse, I already knew that the school food made it a lot worse, but I hadn't considered other toxins. It makes sense, they use a lot of toxic chemicals at schools, I went to school in North Carolina where there's more mold and the air quality's much worse than Minnesota, and I already know that I'm sensitive to many things, I mentioned MSG but also caffeine I'm so sensitive to that even a fairly small piece of chocolate can give me adrenaline rushes, fake energy that doesn't amount to much but nervousness, and worsen my heart palpitations and nervous symptoms, so I have to avoid it pretty much entirely, which is a change from just four or five years ago when I could drink much caffeine in the evening and go to sleep just like normal. I also can quickly go from feeling pretty good to bad from many sorts of fumes. I even think maybe things like the electromagnetic fields might be an issue because I can be stiing at the computer and feel sudden anxiety which dissipates quickly if I move just a few feet away.
Posts: 10 | From Minnesota | Registered: Dec 2005
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posted
Also, another quick question, can lyme cause a heart murmur? When I moved to Minnesota when I was 16, 4 years ago, and got a new doctor which is the same one I currently have now, she found I had a heart murmur that I didn't ever know about before, it's small and not a real problem so maybe ny previous doctors just didn't notice it, but I thought it weird.
Posts: 10 | From Minnesota | Registered: Dec 2005
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David95928
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Member # 3521
posted
As I became more ill, I developed an intolerance for caffeine and sun exposure. I had brigh red facial flushing, almost purple under flourescent light. It may not be gone, but since being treated for Lyme, doctors can no longer hear my heart murmur.
-------------------- Dave Posts: 2034 | From CA | Registered: Jan 2003
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posted
Okay, my acupuncturist and herbalist put me back on the herbs that I was on up until two weeks ago that helped so much, the chinese formula xiao chai hu tang, even after just taking the first dose this afternoon i feel significantly better, those herbs seem to help my neuro symptoms like burning and tingling a lot as well as palpitations, and also evens out so not as many mood swings and "fake" energy. I mentioned the possibility of having lyme to my acupuncturist and she confirmed I do fit the pattern and should be checked out for it. I'll get back to this board when I get my earlier actual lab results next week when my doctor gets back.
Posts: 10 | From Minnesota | Registered: Dec 2005
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Andie333
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Member # 7370
posted
I initially tested negative for Lyme, despite having a lot of the symptoms (many of which you mentioned).
It was actually my acupuncturist who suggested something systemic and encouraged me to look into this further. Like you, acupuncture treatments and Chinese herbs did help, but I was also continuing to get worse in general.
Also like you, my symptoms vacillated over the course of about 6 or 7 years. The last year prior to dx was definitely the worst.
By the time I found an LLMD and got an appointment, I tested CDC positive for Lyme. I've now been on antibiotics for almost 7 months. I'm getting better but I still have very rough times.
Please check back in once you get more information. Let us know how you're doing, okay?
Andie
Posts: 2549 | From never never land | Registered: May 2005
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posted
Andie, I don't quite get what you mean by your acupuncture and herbs helped but you were also getting worse? Do you mean some symptoms were better while others were worse, or are you meaning it went back and forth, I just don't get how you could be both getting better and worse at the same time?
Posts: 10 | From Minnesota | Registered: Dec 2005
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Andie333
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Thunder...sorry, I wasn't clear.
What I meant is that the acupuncturist was able to begin addressing some of the very specific problems that began to surface, like unilateral arthritis (especially in my knee). But whenever she would get one thing a bit better, something else would come up (like brain fog or sensory distortion).
And the exhaustion continued to worsen.
I guess (though we've never had this specific conversation) she was able to surmise this was very systemic and not symptom limited (which was how I'd been dealing with it).
Since starting abx in June, I've continued to see the acupuncturist weekly and continue to take the Chinese herbs (all in concert with what LLMD has been doing).
About a month ago, I absolutely could not get warm, no matter what I tried. My acupuncturist did several treatments aimed at that one thing, then also gave me new herbs. I'm no longer feeling that intense bone-cold...
I hope this is more clear. And, again, I wish you much success in figuring all this out and getting the right treatment.
In the meantime, I'm glad you're here!
Andie
Posts: 2549 | From never never land | Registered: May 2005
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