For the last 2 months I have been feeling generally unwell. I have had blood work done twice, and both times Lymes came back negative, however the second time was approximately 2 weeks after I was on antibiotics for a sinus infection. I did not feel better while I was on the antibiotics, but I felt better for 8 days afterwards and then my symptoms came back. My limbs are tingling from the knee down, and in the hands, they feel cold, and I usually wake up in the middle of the night with worse sensations. Sometimes I have knee pains, or shooting pains in my limbs, but the sensations are now there all the time. My abdomen has been bothering me also, under my left ribcage on the bottom. I feel foggy, uncoordinated with a lack of balance. My doctor has run bloodwork twice, plus I have had an MRI of my brain which was normal. This has been going on for 2 months now, and it seems to be getting worse, I have a stiff neck at times and some minor lower back pain. However, I never had a rash, and I never have a fever. Any information will be appreciated, has anyone had these symptoms without a fever?
Posted by just don (Member # 1129) on :
Time to find the BEST llmd you can get to,,,and go. It IS a sx based disease,,,tests are awful anyway!!
You can post in seeking a doc page and see who turns up for you. 99% of mainstream docs will get this all wrong! DONT be afraid to travel a long way to get to one(LLMD that is),,,MOST do exactly that!!remaining--just don--
Posted by CaliforniaLyme (Member # 7136) on :
WELCOME*)*)! !*)!*)!*)!! Yes, it COULD be Lyme, it could be another TBD, it COULD be other things not TBD related at all. Lyme has presented with JUST back pain before, it does happen, see as follows- and Lyme CAN be seronegative. I would suggest going to the Seeking Doctors column and seeing a Lyme doc in your area. Notice that in the following abstract both patients had NO tick bite or rash that they remember!! Just like you-!! Best wishes, Sarah 1: Presse Med. 2007 Jan;36(1 Pt 1):61-3.
Back pain without radiculitis as an initial manifestation of Lyme disease: two cases
Chanier S, Lauxerois M, Rieu V. Service de M�decine, Centre Hospitalier, Thiers. [email protected]
INTRODUCTION: The most frequent neurological expression of Lyme disease (borreliosis) during its secondary phase is meningoradiculitis, but atypical presentations occur.
Lyme disease must be considered especially in endemic areas and during the summer (May-October).
CASES: We report cases of two patients with unusual clinical presentations of neuroborreliosis.
Both had acute inflammatory back pain, resistant to the usual analgesic treatment.
Both patients responded negatively to questions about tick bites and erythema migrans.
Laboratory tests revealed an inflammatory process in only one patient. Lyme disease was confirmed by lymphocytic meningitis and serological tests positive for Borrelia in blood (both cases) and cerebrospinal fluid (one case).
Antibiotic treatment led to the disappearance of pain and the normalization of laboratory tests.
DISCUSSION: Inflammatory back pain, even without radiculitis, may be related to Lyme disease in endemic areas.
PMID: 17261450
Posted by Lymetoo (Member # 743) on :
Ask your doctor to test you one more time. This time use Igenex Lab in CA. To further ensure that the test result will be more accurate, ask him/her for 3 wks of doxycycline 400mg a day and then go off for two weeks.....then test.
Or better yet.....Do as don and CALyme said.....Find an LLMD and be properly evaluated. Most LLMD's are great diagnosticians.
Lyme Disease Symptoms List 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
Dr. Bransfield's Reason's for Seronegativity the reasons why you can test negative and still have Lyme disease.
1. Recent infection before immune response 2. Antibodies are in immune complexes 3. Spirochete encapsulated by host tissue (i.e.: lymphocytic cell walls) 4. Spirochete is deep in host tissue (i.e.: fibroblasts, neurons, etc.) 5. Blebs in body fluid, no whole organisms needed for PCR 6. No spirochetes in body fluid on day of test 7. Genetic heterogeneity (300 strains, 100 in U.S.) 8. Antigenic variability 9. Surface antigens change with temperature 10. Utilization of host protease instead of microbial protease 11. Spirochete in dormancy phase (L-form) with no cell walls 12. Recent antibiotic treatment 13. Recent anti-inflammatory treatment 14. Concomitant infection with babesia may cause immunosuppression 15. Other causes of immunosuppression 16. Lab with poor technical capability for Lyme disease 17. Lab tests not standardized for late stage disease 18. Lab tests labeled "for investigational use only" 19. CDC criteria is epidemiological not a diagnostic criteria 20. Lack of standardized control 21. Most controls use only a few strains as reference point 22. Few organisms are sometimes present 23. Encapsulated by glycoprotein "S-layer" which impairs immune recognition 24. "S"- layer binds to IgM 25. Immune deficiency 26. Possible down regulation of immune system by cytokines 27. Revised W.B. criteria fails to include most significant antigens Posted by Lymetoo (Member # 743) on :
^^
Posted by AliG (Member # 9734) on :
I believe that I may have had the neurological symptoms without a fever. If memory serves me correctly (which it often doesn't), I believe that I had unexplained fevers for quite a while.
I had a normal MRI of the brain with contrast. The fever resolved but the symptoms progressed. I believe it's possible that my immune system had just become overwhelmed & gave up.
If that is the case that would explain negative testing. The testing is based on the antibodies you are producing.
It took me a year of treating with oral ABX and Txing Babesia to start converting a Western Blot to positive. The Babesia takes out your immune system, so it interferes with testing. It can also produce heavier neurological symptoms.
There are other co-infections which can cause these problems, as well. Have you been tested for Babesiosis, ehrlichiosis, anaplasmosis, bartonella, mycoplasmas or other co-infections?
Did you ever have a tick-bite that you are aware of? Are you living in an area that's considered endemic for Lyme and/or any co-infections?
In my non-professional opinion, I would say that a Lyme-Literate physician would be your best bet. Especially one who is versed in co-infections.
Best wishes in your quest for wellness & welcome aboard!
Ali
Posted by F0rbin (Member # 13792) on :
I grew up on a farm in northern NJ, and was an avid hunter. I have personally pulled 4 ticks off of me during that time. The last one being 8 years ago however, I still occasionally enter parks with my dog. How long can LD stay dormant? I don't remembering having a tick attached, or getting bit in the past 7 years.
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