Hi there. I was recently told by my long-time family doctor that he suspects I might have late stage lyme disease. He's been treating me for a variety of things after I became very ill with flu-like symptoms 2 years ago. It started with headaches, dizziness, stiff neck, achiness and a broad rash up both arms (but no bullseye). After a couple of days and worsening symptoms, I had my husband take me to the emergency room and could barely stand by the time we arrived. My blood pressure was extremely low and I was severely dehydrated. To make a long story short, I was there 4 days while they did a battery of tests including a spinal tap, a lyme test and a number of blood, hormone, liver and enzyme tests. The tests showed my liver enzymes were high, my spleen was enlarged and my white blood cell count was low, but they couldn't diagnose anything specific saying only that they suspected some kind of viral infection and then discharged me. After following up with my regular doctor, he did a mononuclueosis test which came back positive, although he said if I'd ever had mono (Epstein Barr virus) it would always test positive so it may not have been the real culprit. Since then, I've been extremely tired and have developed severe joint pain, insomnia, neck stiffness, constant headaches, sensitivity to light, heel and ankle pain, brain fog, digestive problems and nearly everything else on the lyme symptoms list.
I've continued to be tested for everything imaginable with no findings. Since we live in a heavily wooded area in the Maryland suburbs and I've pick lots of ticks off myself over the years, my doctor is suggesting that it may be late stage lyme that's beginning to manifest itself neurologically. He's recommending that receive 1 month of antibiotics (Ciproflaxin) via an IV picc. Although I've always trusted his judgment, I feel that I should thoroughly research this and possibly see an lyme specialist before doing something this drastic. On the other hand, after reading so much about LD now and hearing so many stories from people who fought way too many years with debilitating symptoms just to get a doctor to finally diagnose and treat them for lyme -- maybe I should be thankful that it only took me this long and take my chances that he's right and can actually help me get better.
That all being said, I wondered if there were are some veterans out there that could give me some sound advice:
- Should I get another lyme test and make sure it's the 2 tier Western blot vs. the less sensitive Elisa? I'm not even sure what was done in the first place, only that it was negative. - Should I seek out a lyme specialist in Maryland for a 2nd opinion? If so, could someone send me a private email with some recommended doctors or tell me where I can find names? - Has anyone heard of the antibiotic Cipro being administered via IV for the treatment of LD? Based on my research, it doesn't seem to be the drug of choice. - Should I go ahead and receive the treatment although it may not even be LD, or are the potential side effects not worth the risk?
As a 40 year old mom with 3 young boys, I am desperate to restore my health and get my energy back. Thank you to anyone that can offer me some advice based on their knowledge and/or experience.
Thanks!
Posted by Lymetoo (Member # 743) on :
You're right, Cipro is not the drug of choice for Lyme. It may help you since you could have bartonella, but I would go with getting tested through a QUALITY lab above all else.
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
The following signs/symptoms may be present in those infected with Babesiosis: Fatigue Arthralgias Myalgia Drenching sweats Headaches Emotional lability Depression Dark urine Splenomegaly Dizziness Nausea and vomiting Cough Dyspnea Fever Chills Hepatosplenomegaly Jaundice Malaise Shortness of breath Bleeding tendencies, bruising Thrombocytopenia Hemoglobinuria Hyperesthesia Pulmonary edema Encephalopathy Low to normal range leukocyte counts Possible elevated levels of dehydrogenase, bilirubin, transaminase* Anorexia Approximately 25%- 66% of Babesia patients are known to be co-infected with Lyme disease. These symptoms may continue for long periods of time, decrease, then return. A low Babesiosis titer (IgG) often indicates a chronic infection. An acute or current infection may show a higher reading on the IgM test initially. There are over 100 species of Babesia in the United States but only ONE or TWO species are currently checked by commercial labs.
BRAIN: Encephalopathy may occur 1-6 weeks after the initial infection and is fairly common in patients with Bartonella. Note: Approximately 50 percent of patients who develop Encephalopathy can be affected by seizures (from focal to generalized, and from brief and self-limited to status epilepticus). Headaches, Cognitive Dysfunction, and CNS Lesions may be evident.
RASH AND LYMPHADENITIS: Erythematous papules (red splotches or slightly raised red spots) may develop. Such papules occasionally occur on the lower limbs but are more common on the upper limbs, the head, and neck. The papules may appear on the skin or mucous membranes. Bartonella may also cause subcutaneous nodules, with some bone involvement possible. The nodules may show some hyperpigmentation, be tender, fester, and/or be enlarged or swollen, but not always.
EYES: Conjunctivitis, Bartonella Neuroretinitis, Loss of Vision, Flame Shaped Hemorrhages, Branch Retinal Artery Occlusion with Vision Loss, Cotton Wool Exudates, Parinaud's Oculoglandular Syndrome, and Papilledema. BONES AND MUSCLES: Osteomyelitis, Myositis, Osteolytic Lesions (softening of bone), Myelitis, Radiculitis, Transverse Myelitis, Arthritis, Chronic Demyelinating Polyneuropathy.
HEART: Endocarditis, Cardiomegaly. Possible lab findings: The following may show up during standard testing: Thrombocytopenia, pancytopenia, anemia, elevated serum alkaline phosphatase level, elevated bilirubin, abnormal liver enzymes. X-ray of the bone may show areas of lysis or poorly-defined areas of cortical destruction with periosteal reaction. Cardiomegaly may show up on a chest X-Ray.
Biopsies of lymph nodes reveal pathology often indistinguishable from sarcoidosis. Reports of biopsies strongly suggestive of lymphoma do occur. Tests occasionally show an enlarged liver with multiple hypodense areas scattered throughout the parenchyma.
Posted by Lymetoo (Member # 743) on :
PM sent
Posted by bettyg (Member # 6147) on :
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Posted by nika (Member # 6779) on :
sent pm
Posted by TF (Member # 14183) on :
I sent you a private message with the name of a good LLMD in Maryland.
