It's had been quite some time since the last time I posted here. To give a quick background on my history, I was bitten by a tick, had a typical EM rash on my forearm, and then it went away. 10 years later, immemdiatelly following a car accident, I had most of the Lyme symptoms develop. Ended up at the emergency room, and they thought I had Spinal Meningentis. When the spinal tap came back negative, they sent me home with doxy, and said that I must have Rocky Mountain Spotted Fever. Started taking the abx, and all my symptoms multiplied 100x. Did some searching online on RMFS, found information on Lyme, and saw a picture of a rash identical to the one I had on my arm shortly after my tick bite. I found an LLMD, would always test equivocal on Lyme, and positive on Erlichia. A SPECT Scan did show a positive result for Lyme. I was treated for Erlichia until test came back negative, and treatment continued longer (several years under different abx's) for Lyme. I was trickled off of the abx, and stopped seeing my LLMD (I doubted the integrity of my llmd).
Now fast forward to today (2 years later). Started with my lymph nodes under one armpit. It went away. Then the other armpit. Then both at the same time. Then, muscle twitches all over, all over malaise, muscle pain, fatigue, etc (you know the drill). Then my gallbladder acted up and after a CCK Hidda and CT Scan, my ejection fraction is 19% (removal is recommended). One thing I don't understand is that my lymph nodes have stopped swelling up and being extremely painful, I feel no lumps in my armpits, yet I still have a sensation that the whole area is swollen, and sometimes I even have a burning sensation in this area. Has anyone else felt this?
Guess it's back to finding a new LLMD. I never had any luck here in NC, so if you are reading this and know a good doc in NC (aside from Dr. J), I'd appreciate the information.
-------------------- Nelson
It is generally agreed that Hello is an appropriate greeting because if you entered a room and said Goodbye, it could confuse a lot of people. Posts: 58 | From Morrisville, NC | Registered: Nov 2000
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posted
You need to be checked for bartonella. See symptoms below.
I'll send you a PM on dr info. Welcome back!!! BARTONELLA SYMPTOMS
GENERAL: Fatigue, Restlessness, Combative behavior, Myalgias, Malaise, Liver and/or Spleen involvement, Abdominal pain, Infectious Mononucleosis-like Syndrome, Granulomatous Hepatitis 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.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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quote:Originally posted by Lymetoo: PS....Bartonella is a coinfection of lyme and can be transmitted by ticks.
Thanks TuTu. I believe I was tested for Bartonella. I have faxed my old LLMD to get the results.
So I called Igenex and asked them to send me a kit to have my gallbladder tested for Lyme. They will send this out to me on Monday. Now getting my surgeon to agree is a little harder. He is asking me for information on this, and I can't find any articles online that show or talk about BB living in your gallbladder, and that tests done on a biopsy of the gallbladder are recommended. Is there such information out there? I don't think they will take LymeNet posts unfortunately.
It is generally agreed that Hello is an appropriate greeting because if you entered a room and said Goodbye, it could confuse a lot of people. Posts: 58 | From Morrisville, NC | Registered: Nov 2000
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TerryK
Frequent Contributor (5K+ posts)
Member # 8552
posted
You may need to contact the site owner and get more info but I think she is known to ILADS. Also, it looks like IgeneX *may* have already done a gallbladder test for borrelia.
http://www.thehumansideoflyme.net/viewarticle.php?aid=62 OFTEN UNSUSPECTED PRESENTATIONS OF GI TRACT LYME--DIAGNOSTIC USEFULNESS OF PCR TESTS ON SPECIMENS HARVESTED FROM ENDOSCOPY/COLONOSCOPY BIOPSIES (WITH ILLUSTRATIVE CASES) One of the blessings of modern medical investigation is a positive PCR (A direct test--polymerase chain reaction-- capable of pinpointing an offending microbe's DNA). This test can be performed on specimens from the patient's blood, serum, plasma, CSF, urine, mothers' milk, and all biopsy tissues. PCRs can play a vital role in diagnosing tick-borne diseases especially those affecting any organs or associated tissues. "Lyme disease is usually diagnosed and treated based on clinical manifestations. However, laboratory testing is useful for patients with confusing presentations and for validation of disease in clinical studies" (29).
DNA tests are especially handy because they can be utilized by way of biopsies harvested from inside the gut during otherwise routine colonoscopies and endoscopies in cases where the diagnosis is uncertain. PCR's are highly specific although they are less than ideally sensitive so that a positive test is a reliable indicator of Bb infection while a negative test simply does not exclude Lyme and does not indicate a lack of infection (30).
An illustrative case history is that of "Mr. F," a mature man thought to have been mentally retarded most of his life. His father had ascribed his youth's sudden headaches, stiff neck, and cognitive losses to the will of God. No further evaluation or treatment was allowed. They lived in endemic tick territory at the time. Decades later the patient realized that his symptoms back then followed a series of bites by minute ticks). Now an adult, the patient's chronic "ulcerative colitis" and depression kept him from his job as a school janitor. (Antidepressant medication had mostly just helped his anxiety) When a colonoscopy was needed, a generous gastroenterologist biopsied Mr. F's luminal tissues, which the referring doctor then sent for testing to a reference lab specializing in tick-borne diseases. Specimen analysis returned as PCR positive for etiologies of 3 diseases that infected his colon: Borrelia burgdorferi (Lyme disease), Mycoplasma fermentans (suspected of causing GI injury via proinflammatory cytokines) (25), and B. henselae (bartonel bartonellosis). Each disease required its own unique treatment, all of which were successful and the patient's GI symptoms resolved. Mr. F's depression also cleared and in its place there was a kind of chronic good cheer, off and on resembling mild hypomania.
The case of "Mrs. M" illustrates another important method of detecting the presence of an active Lyme infection as well as uncovering a possible contributing cause of cholecystitis. Gall bladder (GB) tissue was tested for Bb spirochetal DNA following a cholecystectomy on this seronegative patient: A middle-aged woman with a known diagnosis of pre-existing, asymptomatic gallstones, experienced episodes of allergies, severe headaches and extreme chronic fatigue. She was treated for 2 tick-borne diseases--- LYD and babesiosis, having had symptoms of both and a positive PCR blood test for babesiosis. The LYD was treated with oral antibiotics and then 3 months of IV ceftriaxone (Rocephin) following which she showed improvement.
About a year later, Mrs. M, again fatigued, developed right shoulder blade pain and afebrile nausea after eating greasy foods. Surgery to remove her diseased gallbladder was scheduled. Treatment (doxycycline) for suspected but unproven persistent Lyme was begun. The family physician asked that biopsy specimens of the removed gall bladder be tested in a reference laboratory specializing in tick-borne diseases (31). The resultant PCR test on her gall bladder tissue was positive for DNA of the causative Bb spirochete of Lyme disease. This PCR biopsy confirmation of a seronegative patient's Lyme diagnosis illustrates that, while Western Blot and PCR blood sample testing, especially for active late stage LYD, may not show a positive antibody response, a tissue PCR analysis may confirm the diagnosis, even when the patient has previously been treated. PCR's done on blood are less satisfactory since Bb prefers an in-tissue environment. Treatment of Lyme disease by IV Rocephin can lead to gall bladder sludging. In this case the GB stones were considered to have predated the IV treatment. Of interest, a similar spirochetal disease (leptospirosis) has been reported as simulating symptoms of cholecystitis (32). This may be the first confirmation of a diagnosis of Lyme disease performed on GB tissue to be published--its write-up has been submitted for publication. (Case and personal correspondence from Sabra Bellovin, M.D., Portsmouth, VA)
In another instance, "Mrs. E" was evaluated in a psychiatrist's office for severe depression, anxiety, and fatigue some months following successful removal of a colonic polyp. She mentioned that she had been experiencing chronic, depleting, diarrhea and severe insomnia. Biopsy tissue was then obtained from a repeat colonoscopy by a cooperating gastroenterologist. The specimen was PCR positive for an unspecified Mycoplasma. M. Pneumoniae is a known gut epithelial lining pathogen (33) and M. fermentans has been found in inflamed gastro-enteric linings (19). Both potentially pathogenic mycoplasmas have been documented as carried by ticks. In addition, Mrs. E's blood tests revealed the presence of high antibody titers for ehrlichiosis (Human Anaplasmosis--HA) as well as positive Western Blot (WB) tests for Lyme disease, indicating active cases of both when tested in a related specialty laboratory (34). Interestingly, Mrs. E's family physician in Pennsylvania was willing to treat the ehrlichiosis but unlike some more southerly PCP's (35) she thought Lyme was confined to New England and was unwilling to treat her patient's borreliosis.
Treatment of active Lyme disease is often denied to very sick patients with or without the presence of positive test findings. Serologic testing for Lyme disease as routinely performed by local laboratories is well known for insensitivity. The CDC surveillance case definition excludes, for example, as many as 78% for IgG of known positive cases (36,37). More modern guidelines are currently available for diagnosis and treatment of tick-borne diseases (38,39).
Because the recommended first-use enzyme-linked immunosorbent assay (ELISA) test tends to miss at least 50 % of authentically positive Lyme cases, it is less likely to be relied on (29,40). ELISA tests were not performed in any of the cases presented here.
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