Hi everyone. I just joined the site because I have a strong feeling that I may have lyme disease, although I have not been diagnosed yet. I also did not recall getting bitten by a tic nor having a rash, but i know many people do not have a rash or maybe do not notice it if it's in an inconspicuous area.
I was in the woods about 2 and a half months ago in France and was poorly dressed for the occasion. I was also in the countryside in france a couple of times, laying on the grass, etc. Mostly likely if i have it, i would have gotten it then..but i also live in New york and go to school in new jersey which are both high risk areas, so i suppose i could have gotten it there too.
I got a lyme test shortly after my symptoms appeared and it came back negative, but i know early on the test is not reliable. I would like to present my symptoms on the forum to get your advice on if you think what I have is Lyme.
My very first symptoms started with a daily persistent headache, followed by feelings of fatigue and sore throat. Went to the doctor, she suggested mono and i got tested but that turned out to be negative.
Now about a week and a half since the onset of symptoms and I still have a persistent headache but one morning I woke up and noticed that the right side of my face looked flush and a little puffy, including my eye. It seemed as though the sides of my face were slightly asymmetrical, although there was no drooping like in Bell's palsy. It felt a little funny, too.
Then, the next morning I woke up and the whole left side of my body was slightly numb and now my headache similarly seemed to be isolated to the left side of my head. I went to the ER because i was extremely frightened that it might be a stroke.
Got a CT scan, an EKG, many different blood tests, and an MRI. Everything was negative, except my MRI showed what the doctor described as "a minute irritation on the left(?) optic tract." He said it was extremely small and that anyone suffering from chronic headache could have something like that on their MRI, but he told me to watch my symptoms. Now, i became scared about possible MS.
After this point, i started suffering from extreme anxiety and bouts of depression as well because nobody had a clue as to what was going on with me. My symptoms worsened a bit because then i started to feel extreme pain behind my eyes and extreme sensitivity to light for a few days...but no visual disturbances (I even got an eye check up and i have 20/20 vision).
The numbness stayed on the left side for a couple of weeks (although from time to time it would switch to the right side for a few mins, then go back, strangely).
Then when the numbness subsided, my body began to feel very achy, including my joints. Especially my knees, in fact they almost looked swollen for a time. I also forgot to mention i was waking up with stiff neck almost every day.
This stiffness/muscle aching went on for about a week when lo and behold my numbness came back but this time in both my right and left side. This would be especially bad at night in bed, and sometimes even my whole head felt like it was numb. This went on for a few days until eventually it felt like the numbness was isolated on the right side mostly.
Then, the numbness eventually completely dissipated only to be replaced by more muscle aches and joint stiffness..this time affecting more than just my knees, but also my neck, back, ribs, fingers, toes, wrists and shoulders.
I also have chest pain and shortness of breath on occasion. Might i also add that i have had a minor sore throat throughout all of this and have of late developed chest congestion and a cough. And also, of course, daily fatigue ( no matter how much sleep i get or coffee i drink). Also, I get this "fog head" almost every day, where it feels like I'm not really here. My headaches have improved, however (thank goodness).
I know i've written a lot, but I am feeling alot! I want to try and give the most accurate portrayal possible. All of my symptoms sound like Lyme symptoms, more so than MS because as far as i know MS is much more slowly progressive than what i've described and usually affects individual areas as opposed to the whole body at once, i did not have any lesions in my MRI, and my illness began with flu-like symptoms.
I would really appreciate feedback on this. This illness has taken over my life and ruined my summer..it is all i think about, i dont even sleep well anymore.
I am currently awaiting the results of a second lyme test (western blot). If this again comes back negative would you suggest my pressing the doctor for a trial of antibiotics just in case? Is there any harm in taking the antibiotics if you dont have the disease?
Thanks so much for your input!
[ 13. August 2006, 02:19 PM: Message edited by: smacchia ]
Posted by Hail (Member # 9671) on :
Welcome...Sorry to hear you are feeling yuck!!
I have some of the same things going on.. Though not actually dx lyme. I do remember having the rash and being bit this isnt enough for my doc
I just wanted to welcome you there is lots of information on here some people will send yo newbie links..They are great..
Again Welcome
Hail
Posted by HEATHERKISS (Member # 6789) on :
SYMPTOM CHECK LIST
This is not meant to be used as a diagnostic scheme, but is provided to streamline the office interview. Note the format- complaints referable to specific organ systems are clustered to better display multisystem involvement.
RISK PROFILE (PLEASE CHECK) Tick infested area__ Frequent outdoor activities__ Hiking__ Fishing ___ Camping ___ Gardening ___ Hunting ___ Ticks noted on pets ___ Do you remember being bitten by a tick? No__ Yes__ When? _________ Do you remember having the "bull's eye rash"? No__ Yes__ Any other rash? No__ Yes__ Have you had any of the following? (CIRCLE ALL YES ANSWERS) 1. Unexplained fevers, sweats, chills, or flushing 2. Unexplained weight change--loss or gain 3. Fatigue, tiredness, poor stamina 4. Unexplained hair loss 5. Swollen glands: list areas_______________________________ 6. Sore throat 7. Testicular pain/pelvic pain 8. Unexplained menstrual irregularity 9. Unexplained milk production: breast pain 10.Irritable bladder or bladder dysfunction 11.Sexual dysfunction or loss of libido 12.Upset stomach 13.Change in bowel function-constipation, diarrhea 14.Chest pain or rib soreness 15.Shortness of breath, cough 16.Heart palpitations, pulse skips, heart block 17.Any history of a heart murmur or valve prolapse? 18.Joint pain or swelling: list joints________________________ 19.Stiffness of the joints, neck, or back 20.Muscle pain or cramps 21.Twitching of the face or other muscles 22.Headache 23.Neck creeks and cracks, neck stiffness, neck pain 24.Tingling, numbness, burning or stabbing sensations, shooting pains 25.Facial paralysis (Bell's Palsy) 26.Eyes/Vision: double, blurry, increased floaters, light sensitivity 27.Ears/Hearing: buzzing, ringing, ear pain, sound sensitivity 28.lncreased motion sickness, vertigo, poor balance 29.Lightheadedness, wooziness 30.Tremor 31.Confusion, difficulty in thinking 32.Diffculty with concentration, reading 33.Forgetfuiness, poor short term memory 34.Disorientation: getting lost, going to wrong places 35.Difficulty with speech or writing 36.Mood swings, irritability, depression 37.Disturbed sleep-too much, too little, early awakening 38.Exaggerated symptoms or worse hangover from alcohol
Posted by tabbytamer (Member # 3159) on :
Hi Smacchia,
Welcome
Hmm. I could see why you would suspect Lyme. And the neck stiffness--that was a real problem for me in the beginning and now every once in a while. But I've also recently discovered I have Babesia WA-1 along with the Lyme.
May I ask which lab you had your Western Blot test sent off to?
Sorry you're not feeling well. If it's Lyme related, many here can help you in the right direction.
[ 14. August 2006, 01:53 AM: Message edited by: tabbytamer ]
Posted by Michelle M (Member # 7200) on :
Symptoms sure sound lyme-ish!
Of course, we can't diagnose you.
But, an LLMD could!
You might get "lucky" with the western blot -- the only wonder is that the doctor ordered one with a negative ELISA. Amazing!
However, an IGeneX test would've been SO much better, as it reads ALL the bands, not just SOME of them, giving a much better diagnostic picture.
I'd be finding an LLMD fer shure!
Hope you have some relief soon. Hang in there.
Michelle
Posted by smacchia (Member # 9827) on :
Thanks for the responses everyone. I am looking into getting an LLMD in NYC. I am getting the western blot done in Enzo labs in Astoria, NY. I should be getting the results tomorrow, hopefully. At this point, I am ready to just start the antiobiotic whether this test comes out positive or not. I'm getting desperate!
Posted by just don (Member # 1129) on :
yes,,,Get thee to the best LLMD regardless of the distance of miles, you can possibly afford.
IF you can get a hold of ANY abx in the mean time, think I would.
maybe IF you could talk to your regular physician and he was willing for a 'trial' course of something to see if you react.
IF he is a duck who 'quacks' try any other means of getting some abx. You will then have a leg up and a head start into a LLMD's symptom based diagnosis.
And if you dont(but chances are great you will) so be it!!!You can report that to LLMD too!!And know what NOT to take!! Invent a toothache IF you have too. I dont know how available black market abx's are!!
Either that or show your doc your teenage acne you might still have. They give abx for THAT automaticly!!
Welcome aboard the lyme train for now , sounds like you need us for support, if nothing else, till you sort this all out and that might be awhile. Sit back, kick off your shoes and start reading and learning!!! My bet is you will know where you stand after a few 'days' of reading.
Posted by 5dana8 (Member # 7935) on :
I am not a doctor,just a patient struggling with lyme disease.
Posted by HaplyCarlessdave (Member # 413) on :
quote:.... did not have any lesions in my MRI, and my illness began with flu-like symptoms.
I would really appreciate feedback on this. This illness has taken over my life and ruined my summer..it is all i think about, i dont even sleep well anymore.
I am currently awaiting the results of a second lyme test (western blot). If this again comes back negative would you suggest my pressing the doctor for a trial of antibiotics just in case? Is there any harm in taking the antibiotics if you dont have the disease?
Thanks so much for your input! [/QB]
I would say your symptoms are suspicious enough that you should get on treatment for "Lyme etc." asap. It is probably a good idea to have blood drawn and sent to Igenex, prior to treatment, too, but as your infection(s) are new, time is of the essence. Also, beware of "co-infections" you might have along with Lyme. Babesiosis is a coinfection that does not respond to the normal antibiotics. You might have that along with Lyme, and that can screw up the tests, as well as complicate treatment. I had ...'negative'... tests for quite awhile, so the 'ordinary docs' were slow to prescribe a strong enough treatment, causing a big nightmare for me with Lyme etc..
Here is my esperience, which may relate. I should have gotten a longer, stronger treatment at first!
Good luck! DaveS
Posted by shazdancer (Member # 1436) on :
Hi, smacchia, sorry you are feeling so poorly.
Yes, it sounds like Lyme to me. I have heard of partial numbness without full Bell's palsy in Lyme patients before, and your quick onset of symptoms in so many different categories is a red flag for Lyme.
You asked about taking antibiotics. There is a slight risk, particularly if you are allergic to a particular class of antibiotic but don't know it. Also, some non-Lyme doctors have expressed concern that taking long-term antibiotics promotes the flourishing of antibiotic-resistant bacteria, such as C. difficile.
However, long-term antibiotics (some of the same that are given for Lyme) are given for other reasons, such as for tuberculosis, and for acne! If it were me, I would consider that the potential risk is far outweighed by the potential benefit.
And oh gee, it was me, as my symptoms were very similar to yours. And I got better on long-term oral antibiotics.
Find a Lyme specialist who follows the ILADS guidelines. They know which combos of meds work best on which symptomology. And elt us know how you're doing, we care.
Regards, Shaz
Posted by smacchia (Member # 9827) on :
So it's kinda funny...my wisdom teeth have started to bother me again and then i realized i still had a bottle of unused Ampicillin that the dentist had prescribed me earlier in the year for my toothache. I had never used it because shortly after my teeth stopped hurting on their own, so i figured why bother.
Anyway, so now the question is...should i take the ampicillin now to help my toothache AND as a test for lyme disease?? (I'm still awaiting the western blot results and my symptoms are persisting). I dont know how effective ampicillin would be; as far as i know it's not used to cure lyme, but i know it's very similar to amoxicillin which is used to cure lyme..so maybe it would help a bit (or id herx) and then i'd know i have lyme?
What do you think? Any hurt in trying?
Posted by LostCityAgent (Member # 9050) on :
Hello, Your symptoms are non-specific but are very suspicious. LD is very interesting because it is one of the few diseases that can produce such a combinatory effect. It could very well be LD among other things. You should be seen by either an infectious disease physician or a specialist dealing with your specific deficits to start off with. Not everything is LD.
Good Luck! Jmcc.
Posted by Lymetoo (Member # 743) on :
I vote NO on the infectious disease dr...unless you find one who BELIEVES in long term treatment for Lyme disease....most DON'T and they don't use Igenex labs either.
It wouldn't hurt to try the ampicillin, but how much do you have? If it's only a few pills, you might not herx.
Begin your search for a real LLMD so you can get properly evaluated.
Sounds somewhat similar to the beginning of my lyme experience. I was eventually diagnosed with lyme by a very good llmd here in NJ and i tested positive through igenex. I haven't had good experiences with I.D. docs.
As far as the abx that you already have, (and this is just my opinion) the dosage that the dentist gave you will probably be way too low and wont work well.....Good luck
I haven't been on this site for a little while but it's nice to see that it's still filled with wonderful helpful people..........
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