posted
I had 4 weeks IV antibiotics last summer for Neuro Lyme. Was tested at the end of Sept by LabCorp: all tests were negative, no bands seen. A recent MRI shows no brain lesions.
Yet my symptoms have persisted. Loss of balance, poor gait, stuttering, blurred/double vision, trouble comprehending print, difficulty retrieving words & organizing thoughts, poor coordination. Constant headaches, body aches and sleep disturbances have remained a part of my life.
My neurology and infectious disease docs say the negative tests indicate that it's emotional stress. I'm so confused. Can it still be Lyme despite all the negative tests?
Posts: 151 | From Kingston NY | Registered: Nov 2008
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adamm
Unregistered
posted
It is still Lyme--no question. There's not been one study demonstrating that the disseminated disease can be cured, and a symptom-free state is generally only attained with very long courses of treatment. For some reason, however, corrupt public health officers have been misinforming the medical community about the disease since its emergence and persecuting the doctors who treat it properly. For the real scoop on Lyme, you should check out these links:
Geneal
Frequent Contributor (5K+ posts)
Member # 10375
posted
Unfortunately, usually an ID doc under treats Lyme.
Four weeks of IV antibiotics may have helped with symptoms.
However, what about co-infections such as babesia or bartonella?
You need to see a Lyme Literate Medical Doctor.
Please post in Seeking a Doctor with your city and state.
Four weeks of antibiotics is not enough to "cure" anything.
Lab Corp testing isn't very reliable either.
Hugs,
Geneal
Posts: 6250 | From Louisiana | Registered: Oct 2006
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TerryK
Frequent Contributor (5K+ posts)
Member # 8552
posted
Lyme testing is notoriously inadequate at detecting persistent infection. LabCorp is not a great lab for lyme testing, particularly for chronic lyme disease. Most LLMD's (Lyme Literate Medical Doctors) use IgeneX. They specialize in testing Tick-Borne Infections.
This is the website of ILAD's. International Lyme And Associated Disease. You can read papers written by medical doctors who treat Chronic Lyme Disease there. www.ilads.org
Please find an ILAD doctor so that you can be properly evaluated for lyme disease and co-infections. Ticks often pass more than just borrelia (the bacteria that causes lyme disease). Most doctor's do not check for co-infections and treatment for a number of them is different than treatment for lyme disease itself.
There is a medical battle going on regarding the proper diagnosis and treatment of lyme disease. The IDSA (Infectious Disease Society of America) do not believe in persistent infection despite 70+ medical studies that prove otherwise. They were investigated and found to have a flawed process in choosing the members who wrote the medical guidelines that many doctors use to treat lyme disease. They were shown to have numerous conflicts of interest.
Many lyme victims have been told that they are cured with short term abx. If symptoms peristed, they are told that they have Chronic Fatigue syndrome, Fibromyalgia, MS and a slew of other illnesses with no known cause.
For detailed information about the history, politics and science of chronic lyme disease, read the book "Cure Unknown". Written by a respected science journalist who is currently senior editor for Discover Magazine. It is a jaw dropper and will make it clear that many people are being told exactly the same thing that you have been told at great risk to their health.
Terry
Posts: 6286 | From Oregon | Registered: Jan 2006
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
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TerryK's links are the best place to start. Ones I list below are for further study. I'll try to go through and delete the repeats but may miss a couple.
---------------
Four weeks' treatment is not enough. According to one article below, a MINIMUM of 30 weeks is required, sometimes longer.
Most labs do not do the full range of bands for the Western Blot - or worse - settle for an ELISA test.
You also need to be assessed for co-infections.
Some of these articles explain why you need a special kind of doctor and why it is so very important to stay with treatment.
It's great that the MRI found no lesions but your symptoms are still very classic and troubling. My guess is that if you were to see a lyme literature otoneurologist (ear-neuro) doctor that you would fall off some of their charts.
As others suggest above, please find a ILADS-trained LLMD (lyme literate medical doctor).
Articles below will explain more about the sad state of the environment and why only this kind of doctor is educated and experienced enough.
I suggest not hiring the other doctors anymore. Remember, you are the client. They are not qualified to give you the expertise that you require. I would keep it low key as they will fight you and it's best not to tell them where you will now go, but it's clear they are inadequate.
Emotional stress, my *** - Yes, this can be stressful but they are blantantly ignoring this. And that is what 99.9% of both neurologists and ID doctors DO. Stay far away.
Good luck. You will find answers - and improvement.
CONTROVERSY CONTINUES TO FUEL THE "LYME WAR" -(author's details at link)
As two medical societies battle over its diagnosis and treatment, Lyme disease remains a frequently missed illness. Here is how to spot and treat it.
Excerpts:
Meet the players
The opponents in the battle over the diagnosis and treatment of Lyme disease are the Infectious Diseases Society of America (IDSA), the largest national organization of general infectious disease specialists, (and)
and the International Lyme and Associated Diseases Society (ILADS), an organization made up of physicians from many specialties. ( www.ilads.org )
ILADS, by contrast, asserts that the illness is much more common than reported, underdiagnosed, easier to contract than previously believed, difficult to diagnose through commercial blood tests, and difficult to treat, (especially)
especially when treatment is delayed because of commonly encountered diagnostic difficulties ( http://www.ilads.org/guidelines.html - Accessed April 6, 2007).
. . .
*** " . . .To treat Lyme disease for a comparable number of life cycles, treatment would need to last 30 weeks. . . ."
`` . . .Patients with Lyme disease almost always have negative results on standard blood screening tests and have no remarkable findings on physical exam, so they are frequently referred to mental-health professionals for evaluation.
"...If all cases were detected and treated in the early stages of Lyme disease, the debate over the diagnosis and treatment of late-stage disease would not be an issue, and devastating rheumatologic, neurologic, and cardiac complications could be avoided..."
. . . * Clinicians do not realize that the CDC has gone on record as saying the commercial Lyme tests are designed for epidemiologic rather than diagnostic purposes, and a diagnosis should be based on clinical presentation rather than serologic results.
- Full article at link above, containing MUCH more detailed information.
-===
Co-infections (other tick-borne infections or TBD - tick-borne disease) are not discussed in the Savely article due to space limits. Still, any LLMD you would see would know how to assess/treat if others are present.
==========================
Not to frighten but to illuminate the importance of treatment:
May 2008 Volume 39 Number 5 LABMEDICINE www.labmedicine.com - American Society for Clinical Pathology
CHRONIC BACTERIAL AND VIRAL INFECTIONS IN NEURODEGENERATIVE AND NEUROBEHAVIORAL DISEASES
- by Garth Nicolson, Ph.D.
===========================
AFTER reading the articles above this will make more sense and, sadly, shows the state of treatment (and - with the new committee gathered, it is still a horrible situation for there are no real experts on the new panel):
Attorney General Richard Blumenthal today announced that his antitrust investigation has uncovered serious flaws in the Infectious Diseases Society of America's (IDSA) process for writing its 2006 Lyme disease guidelines and the IDSA has agreed to reassess them with the assistance of an outside arbiter.
-- this should be ordered by your LLMD. It needs a seasoned professional to be able to evaluate tests, along with a clinical evaluation.
You should also be evaluated for coinfections. Not all tests are great in that regard, either, but a good LLMD can evaluate you and then guide you in testing. One of the top labs is:
There are a couple other good labs for certain tests: Fry; Clognen; Focus. Your LLMD will know. Some say MDL does good work (but I don't know if they test all the bands).
posted
YIKES!!! PLEASE get tested thru Igenex lab in CA. www.igenex.com Ask for test kit #188 and 189. It will cost you about $200.
Better than that, find an LLMD who can evaluate you for Lyme and all coinfections. You may have picked up more than one infection, which MIGHT be why your test is negative.
Most of the time, it's because the lab your dr used is less than sensitive for Lyme testing. You need a lab that tests for ALL of the possible bands. Igenex does that.
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.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96223 | From Texas | Registered: Feb 2001
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posted
For what it is worth, my son usually has to stay on a particular abx 4 weeks just to assess if it is helping or not. 4 weeks of treatment in not enough in most cases, and almost never enough with neuroborreliosis.
You live within a short distance of at least 6 individuals in two practices treating chronic Lyme, so that is a good thing - many patients travel across state lines for treatment. PM me for details about the doctors if you would like more info.
Posts: 263 | From Capital Region, NY, USA | Registered: Jun 2008
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I also forgot to list going into atrial fibrillation as one of the effects of the Lyme. Emotional stress?
Posts: 151 | From Kingston NY | Registered: Nov 2008
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posted
If you were tested right after completing a round of antibiotics, most of the spirochetes have been cleared from your blood and so have the antibodies. That might explain a negative test. 2 mos. later, and the antibodies start showing up in your blood again as the spirochetes come out of hiding in your tissues and brain.
I am not a doctor, but your symptoms to me scream ongoing infection that was not eradicated with a short round of abx.
-------------------- Sick since at least age 6, now 67. Decades of misdiagnosis. Numerous arthritic, neuro, psych, vision, cardiac symptoms. Been treating for 7 years, incl 8 mos on IV. Bart was missed so now treating that. Posts: 765 | From nw ct | Registered: Sep 2008
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
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Gerifrog,
Magnesium often helps normalize irregular heartbeat but, yes, the surge of stress hormones can take a toll on the heart.
Remember that emotional stress IS physical stress. The body in lyme has some very harsh changes to the HPA axis - the pathway to handle stress.
Anything to help gently support adrenal function is good.
posted
Got antibiotics Aug 13-Sept 8, first (positive) tests were Aug 6-7, second (negative) tests were done Sept 29.
Initial A-fib occurred Aug 16, have had several bouts since then. At that time I know I was very stressed as I am allergic to many antibiotics and they were giving me benadryl shots to ease the itching. I barely slept because benadryl and the pain meds for the explosive headache made me hyper. If I didn't take them, the pain kept me awake. Took a lot of short naps, still do.
Posts: 151 | From Kingston NY | Registered: Nov 2008
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