posted
Well I did see my internist today just to catch him up on things. Since I have mostly been seeing a rheumy for positive ANA and Sjorgrens antibodies. Well I bring to his attention of the lyme test. He says, no way, you can't have lyme in Florida. Have you been playing with the Florida Keys deer? Well, immediately I show him the test and since the IGM is positive and not the IGG he says this means you would have contracted it in the last 12 months and you have not been anywhere like the Keys. So basically, I am not sure to think do I have Lyme or not? It is so confusing. So many opinions. I mean nobody is saying I have it or not. My internist is, believe it or not, a very open minded physician, even though I am telling you this opinion he had. So how do you ever know what is right, and what treatment or direction or protocol to follow. He thinks I have Sjogrens of the brain. And then I read Lyme can act like this as well. Any insight? I am no further ahead than a year and a half ago. He suggests I go on Cellept instead of cancer causing plaquenil.
Posts: 25 | From south Florida | Registered: Feb 2010
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D Bergy
Frequent Contributor (1K+ posts)
Member # 9984
posted
If he is basing his opinion on the fact you are in a certain region that does not have Lyme, I would reject that foolish idea.
There is so many flaws in that logic I cannot even begin to list them all.
I will be going to Florida soon from the heart of tick country, and I cannot absolutely guarantee I will not transport a tick or two in the process.
Millions do the same every year, not to mention birds, mice in transported goods etc, etc. Lyme is everywhere because nothing is static in the U.S.
I do not know what you have, but because you live here or there does not rule anything in or out. The doctor needs to base his diagnosis on the evidence, and not geography.
Good luck
Dan
Posts: 2924 | From Minnesota | Registered: Aug 2006
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Haley
Frequent Contributor (1K+ posts)
Member # 22008
posted
Doctors in the ER laughed at me when I told them I wanted a Lyme test. I'm in Southern CA. They said there was no possible way that I had Lyme. We forced them to take the test. It came back positive.
I also was diagnosed with sjogren's.
What types of symtoms do you have?
Posts: 2232 | From USA | Registered: Aug 2009
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posted
Thanks for responding. Hope you don't mind the PM. My symptoms are lesions in white matter, brain fog, neck and back pain, numbness and tingling hands and legs, positive ANA and Sjogrens antibodies, chest pain, shortness of breath, to name a few. Had thorough testing done at Johns Hopkins and they came up with probably Sjogrens. Even though lip biopsy was negative and all EMG and small nerve testing. I guess anything is possible at this point. Just how do I know what I have and how to treat it? Igenex test is postive in IGM only and 31 band negative. Lyme or no Lyme? How did you go from Sjogrens to Lyme diagnosis? Just the ER test alone.
Posts: 25 | From south Florida | Registered: Feb 2010
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- A positive in IGM only is very common for chronic lyme. With symptoms such as yours, and that test, this could very well be lyme.
However, you need to have a proper clinical evaluation by a ILADS-educated LLMD who will also assess you for other tick-borne infections.
Your internist is wrong on so many points. I'd ask for your money back as it's obvious he knows nothing about lyme disease.
Can you get to a LLMD ? -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
"With most infections, your immune system first forms IgM antibodies, then in about 2 to 4 weeks, you see IgG antibodies. In some infections, IgG antibodies may be detectable for years.
Because Borrelia burgdorferi is a chronic persistent infection that may last for decades, you would think patients with chronic symptoms would have positive IgG Western blots.
But actually, more IgM blots are positive in chronic borreliosis than IgG. Every time Borrelia burgdorferi reproduces itself, it may stimulate the immune system to form new IgM antibodies.
Some patients have both IgG and IgM blots positive. But if either the IgG or IgM blot is positive, overall it is a positive result.
Response to antibiotics is the same if either is positive, or both. Some antibodies against the borrelia are given more significance if they are IgG versus IgM, or vice versa.
Since this is a chronic persistent infection, this does not make a lot of sense to me. A newly formed Borrelia burgdorferi should have the same antigen parts as the previous bacteria that produced it.
But anyway, from my clinical experience, these borrelia associated bands usually predict a clinical change in symptoms with antibiotics, regardless of whether they are IgG or IgM."
. . . . =====================
This explains WHY you need an ILADS-educated or ILADS-member LLMD:
CONTROVERSY CONTINUES TO FUEL THE "LYME WAR" - By Virginia Savely, RN, FNP-C May 18, 2007
Excerpts:
[in speaking of acute cases of just lyme, diagnosed and treated early] " . . .To treat Lyme disease for a comparable number of life cycles, treatment would need to last 30 weeks. . . ."
". . .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. . ."
An Interview with Dr. Kerry Clark, MPH, PhD, University of North Florida, Jacksonville, FL
Q: What is Lyme Disease?
A: Lyme disease (LD) is the most commonly reported arthropod-borne infection in the United States , with an average number of approximately 19,000-20,000 cases reported each year. Surveys of doctors have revealed that the actual number of cases may be as many as 10x that reported. The infection is caused by a spiral shaped bacteria known as a spirochete, and transmitted by several species of ticks.
Q: What are the Signs and Symptoms of LD?
A: Most patients experience general ``flu-like'' symptoms of fever, headache, body aches, and fatigue. Sometimes, but not always, a skin rash is present at or near the tick bite site. This rash is often round or oval shaped, and sometimes has a lighter area in the center (which can resemble a bullseye). This is called an erythema migrans or EM lesion. It is reportedly recognized in approximately 50--60% of cases. If not treated early, the infection can spread to joints, the heart, and the nervous system. Patients who develop late stage infection often experience neurological symptoms including chronic headache, fatigue, stiff neck, memory lapses, tingling sensations in the arms or legs, and vision problems.
Q: How is LD Diagnosed?
A: LD is diagnosed based on signs and symptoms (e.g., EM rash, flu-like symptoms, recurrent or relapsing arthritis), combined with the possibility of exposure to ticks. Current laboratory tests for LD are not very sensitive; thus, it is very difficult to get a positive result for LD with most lab tests available today. On the other hand, in my experience false positive lab test results for LD are rare. Laboratory testing may be helpful for confirming infection, and for diagnosis during the later stages of disease, but it is not necessary and generally not recommended for diagnosis of patients with EM lesion and a history of tick bite or tick exposure. In many cases, the patients do not remember being bitten by a tick.
Q: How is LD Treated?
A: Most cases of LD can be treated successfully with several weeks of antibiotics if recognized and treated early. Doxycycline is most commonly prescribed for early stage infection, and taken orally for 3-4 weeks duration. The success rate for treatment of later stages of illness is less certain, and may require long term, intravenous antibiotic therapy. Thus, early recognition and treatment are critical.
Q: Where does LD occur?
A: LD occurs worldwide, and cases have been reported from every state in the continental U.S.
Q: Does LD Occur in Florida ?
A: Yes , it does. The same tick species (the blacklegged or ``deer'' tick) that we know transmits LD in the northeastern U.S. is very common in Florida . Plus, there is evidence that another tick species (the lone star tick) may also be transmitting the infection in southern states. Published research has shown that the bacteria is established in wild animals and ticks, and recent findings (as-yet-unpublished) document infection in humans in Florida . Patients often say that their doctors tell them that we don't have LD in Florida , or that we don't even have the tick vector for LD here. This is absolutely false. There is no doubt that people are acquiring LD infections from tick bites in Florida .
Q: How Much LD Occurs in Florida ?
A: At this time, we do not have accurate estimates of the true incidence in Florida . In the southern U.S. , the disease is likely still significantly under-recognized due to lack of awareness, and misdiagnosis. The poor sensitivity of clinical diagnostic tests exacerbates this problem.
Q: Who is at risk for LD?
A: Practically anyone who spends time outdoors in grassy, brushy, or wooded areas or who has contact with pet animals who frequent such areas, could come into contact with an infected tick. Ticks infected with the LD bacteria have been collected at dozens of sites throughout Florida . LD infection can be acquired in national forests, state parks, and literally in our own backyards. The bottom line is that it doesn't matter where someone lived previously, where he/she has traveled, or where he/she lives today. When a person sees a doctor here in Florida , and that person has signs or symptoms consistent with LD any time of the year, that person could have LD.
Q: When are people at risk for LD?
A: People are at risk for LD in Florida year round. The climate in Florida allows some human biting species of ticks to be active throughout the year.
Q: What should you do if you get bitten by a tick?
A: You should remove the tick as soon as possible. Do not burn it, cover it with finger nail polish or petroleum jelly, or use other folk methods to remove it. Instead, use tweezers to grasp the tick as close to the skin as possible, and pull it out with firm, steady pressure. Clean the bite site with soap and water. Very importantly, SAVE THE TICK! Put the tick in a plastic ziplock type bag. Include a notecard or small piece of paper that records the date and where you believe you picked up the tick. If you wish to have the tick identified, send it to my lab at UNF. We may also test the tick for LD or other disease organisms.
Q: What should you do if you think you might have LD?
A: See your health care provider. If you saved the tick that bit you, take it to show your doctor (but don't throw it away). If your doctor thinks you might have LD, and you are willing, he/she may agree to collect and send a blood sample to the UNF lab for research testing. (Note: test results may not be used for patient diagnosis; the testing is for research purposes only.) You can obtain more information about the research study by contacting me (Dr. Clark) or the Northeast Florida Lyme Association (NEFLA).
Q: How can you reduce your risk for LD or other Tick Transmitted Infections?
- Avoid areas infested by ticks
- Apply repellents such as those that contain DEET or permethrin ( always follow label directions )
- Wear light colored clothing that makes it easier to see ticks on you
- Check yourself and your children for ticks often during outdoor activities in tick-infested areas
Q: Is anyone else conducting research on LD in Florida ?
A: I am one of very few people studying LD in Florida at this time. Unfortunately, funding for research on LD or other tickborne diseases is limited, especially for research in the southern U.S. I believe that LD is significantly under-recognized and underreported in Florida and some other southern states. Because awareness is so low, cases are often misdiagnosed, or diagnosis is delayed, which leads to patients developing complications from late stage infections that are then much more difficult to treat.
Q: Can you say a little more about your research?
A: I have developed a very sensitive DNA-based test for LD, and my research testing has confirmed dozens of cases of the disease in patients from Florida and other states across the country in the past several years. Recently, we identified the presence of 2 additional species of Lyme group Borrelia in humans with Lyme-like illness in Florida and other states. Prior to this finding, only 1 species of Lyme Borrelia had been reported as pathogenic to humans in the U.S.
Q: Any Final Recommendations?
A: LD is alive and well in Florida , but awareness of the risk is very poor. Because of that, there are many, very sick people with LD in Florida , as elsewhere. We need to do a better job of recognizing the illness, we need to continue efforts to improve public awareness, and we need to do a lot more research to find out just how common LD is here, and what tick species are transmitting it.
Q: Who can I contact for more information?
- Contact NEFLA at northeastfloridalymeassociation.org OR Florida Lyme Advocacy at [email protected] or (904) 491-7617 (904) 491-7617
- Contact Dr. Clark at UNF
Posts: 6286 | From Oregon | Registered: Jan 2006
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Re: if STEROIDS are suggested, since your internist thinks you have Sjorgren's, he may suggest steroids. With a positive Lyme IgM, that could spell disaster. By the way, "Sjorgren's" has often turned out to be lyme (and your IgM does point to that). ---------
. . . We have seen literally dozens of patients with Lyme who were initially treated with steroids who reported a dramatic worsening rather than improvement as would be expected. Dr. Joseph Burrascano has coined the expression, ' Steroid Disasters, ' to describe these patients. . . .
. . . Corticosteroids can last in the body for months, usually around 6 months. In many bacterial infections such as LD, damage can be done. . . .
. . . More severe illness also results from other causes of weakened defenses, such as from severe stress, immunosuppressant medications, and severe intercurrent illnesses.
This is why steroids and other immunosuppressive medications are absolutely contraindicated in Lyme. This also includes intraarticular steroids. . . .
From page 12:
. . . More evidence has accumulated indicating the severe detrimental effects of the concurrent use of immunosuppressants including steroids in the patient with active B. burgdorferi infection.
Never give steroids or any other immunosuppressant to any patient who may even remotely be suffering from Lyme, or serious, permanent damage may result, especially if given for anything greater than a short course.
If immunosuppressive therapy is absolutely necessary, then potent antibiotic treatment should begin at least 48 hours prior to the immunosuppressants. . . .
. . . . -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Dekrator48
Frequent Contributor (5K+ posts)
Member # 18239
-------------------- The fibromyalgia I've had for 32 years was an undiagnosed Lyme symptom.
"For I know the plans I have for you", declares the Lord, "plans to prosper you and not to harm you, plans to give you hope and a future". -Jeremiah 29:11 Posts: 6076 | From Pennsylvania, USA | Registered: Nov 2008
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Pinelady
Frequent Contributor (5K+ posts)
Member # 18524
posted
I would find a LLMD to treat, for however long it takes.
-------------------- Suspected Lyme 07 Test neg One band migrating in IgG region unable to identify.Igenex Jan.09IFA titer 1:40 IND IgM neg pos 31 +++ 34 IND 39 IND 41 IND 83-93 + DX:Neuroborreliosis Posts: 5850 | From Kentucky | Registered: Dec 2008
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METALLlC BLUE
Frequent Contributor (1K+ posts)
Member # 6628
posted
All evidence points to Lyme Disease. I bet the lesions disappear with proper antibiotic therapy. A brain SPECT scan may be useful as well to accumulate further evidence.
-------------------- I am not a physician, so do your own research to confirm any ideas given and then speak with a health care provider you trust.
posted
PLEASE seek proper help and YES STAY AWAY FROM STEROIDS!!! I am one "of those" given steroids before I learned I had Lyme and it had terrible "steroid disasters" that Dr B talks about on me.
Good luck and God Bless,
Karen (:
Posts: 423 | From Virginia | Registered: Nov 2009
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posted
PLEASE seek proper help and YES STAY AWAY FROM STEROIDS!!! I am one "of those" given steroids before I learned I had Lyme and it had terrible "steroid disasters" that Dr B talks about on me.
Good luck and God Bless,
Karen (:
Posts: 423 | From Virginia | Registered: Nov 2009
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WildCondor
Unregistered
posted
Looks like the other posters have you covered on this so I just wanna say..run away from that doctor!! Sounds ignorant and uneducated.
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- We don't hire - and pay - incompetent plumbers? We don't listen to a plumber who tells us to ignore broken water pipes.
Why hire incompetent doctors? Why pay attention to their faulty advice when they are uneducated - and ignorant (purposefully ignoring facts)?
I know it's hard to find a true expert and I do hope you can do so - near you and within budget. It helps to read as much as you can from LL authors - while still trying to maintain some sort of balance. Good luck. -
[ 03-22-2010, 05:31 PM: Message edited by: Keebler ]
Posts: 48021 | From Tree House | Registered: Jul 2007
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