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Post by Admin/ Traveler on Aug 27, 2017 20:53:57 GMT
(this thread will be under construction for a while as I gather the information I believe needs to be presented quickly) I'm not sure why, but the links in this post are not working, so until I can get this figured out, please copy and paste the links into another tab to see content. So sorry!!!! For the most part, Lyme is only the beginning for most of us as we often end up with multiple infections of different types, not to mention the "co-infections" of Bartonella (bacterial infection), Babesia (protozoan infection), Rocky Mountain Spotted Fever (bacterial infection), Anaplasmosis (bacterial infection), Ehrlichia (bacterial infection). We must also consider things like viral, fungal and yeast infections of all types. Lyme starts the process by lowering the immune system, then either other infections join in, or viruses get reactivated, and we end up a toxic soup mix. Testing is poor for all of these infections, especially if Lyme is involved unless they use a test that looks directly for the bacteria/virus/whatever infection. Antibody testing is not going to help.....because you MUST have a well functioning immune system to have an immune system response such as antibody production. abcnews.go.com/GMA/video/cdc-advises-multiple-lyme-disease-tests-tick-bite-48364357" - CDC states that more than one test may be needed WHAT TESTS ARE AVAILABLE? A variety of tests is available. Many doctors who are unfamiliar with Lyme disease just use the Lyme test available in their local laboratory. This is usually the Lyme ELISA. This tests measure a patient’s antibody, IgM and/or IgG, in response to exposure to the Lyme bacteria. By today’s standards, these tests are not very sensitive. IGeneX, Inc. will only perform the ELISA test in conjuction with Western Blots. The Lyme IFA (performed as part of a Lyme Panel) detects IgG, IgM and IgA antibodies against B. burgdorferi. The WESTERN BLOT tests (IgG and/or IgM) can visualize the exact antibodies you are making to the Lyme bacteria. In some cases the laboratory may be able to say that your “picture of Lyme antibodies” is consistent with early disease or with persistent/recurrent disease. Not all patients have antibodies at all times when tested. Antibodies are more commonly detected within the first couple of weeks of infection. The LYME DOT BLOT ASSAY (LDA) looks for the presence of pieces of the Lyme bacteria in urine. When compared to the Western Blot, , they both had similar sensitivities; however, the immunodot assay was more specific and had greater positive predictive value than the Western blot assay. The results obtained indicate that the immunodot assay performs as well as or better than the Western blot assay for diagnosing Lyme borreliosis. The PCR (Polymerase Chain Reaction) Test, detects the presence of the DNA of the Lyme bacteria. The PCR test is often the only marker that is positive in all stages of Lyme disease. The test can be performed on blood, serum, urine, CSF and miscellaneous fluids/tissues. Unfortunately, Lyme bacteria like to “hide” in the body, therefore, PCR can often be negative. Studies performed on different sample types suggest that performing PCR on multiple sample types improves assay sensitivity. Lyme Disease is very complicated to diagnose because: Lyme bacteria are not always detectable in the whole blood, even in active disease. The bacteria like to hide in joints, teeth, the heart, and the brain. Every patient responds differently to an infection. Antibodies may only be present for a short time. A few of the symptoms list/charts out now: www.anapsid.org/cnd/diagnosis/mastersymptoms.html - Lyme Master Symptom listwww.lyme-symptoms.com/LymeCoinfectionChart.html - Lyme and co-infection symptom list www.prohealth.com/library/showarticle.cfm?libid=29861 - A Deep Look at the Symptoms of Six Major Lyme-Related Infections To find an ILADS LLMD, you can message me, or use these links: You can go to The Lyme Disease Association and search for LLMD's 3 times in a month. You have to register first. Here is the link: www.lymediseaseassociation.org/index.php?option=com_content&view=article&id=277&Itemid=74" - Lyme Disease AssociationYou can email the Tick-Borne Disease Alliance: medicalinfo@tbdalliance.org - tbdalliance.orgILADS has their own referral system as well: ilads.org/ilads_media/physician-referral/ - ILADSAnd, the newest resource: www.LymeDoc.org - LymeDoc.org Lyme & other TBI rashes (more to come soon): get.google.com/albumarchive/103527803697265103794/album/AF1QipOfYS1ZO2IbGlB_GJEi5EH--fco2ia5xEngYswZ -- Lyme and other tick disease rashessites.google.com/site/marylandlyme/rashes--photos -- Maryland Lyme TBI picturesDetoxing is extremely important when you are using any anti-infective treatments to rid the body of the Lyme bacteria. www.tiredoflyme.com/detox-methods.html -- tiredoflyme.com/detox-methodsOne of the most popular sites lately for information on detoxing for Lyme patients, it's a wonderful listing of detoxing routines that has been built around recommendations from Lyme patients!! Herxing is when bacteria dies - it creates toxins. Plain and simple. Where do those toxins go? If a person does not detox on a daily basis, they stay in the blood, joints, tissues, colon, everywhere and cause so many problems.
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Post by Admin/ Traveler on Sept 9, 2017 17:06:49 GMT
The Spoon Theory - this is such an important concept for all Lyme patients that it should be a mandatory handout in every doctors office, in my opinion! The Spoon Theory, by Christine Miserandino"My best friend and I were in the diner, talking. As usual, it was very late and we were eating French fries with gravy. Like normal girls our age, we spent a lot of time in the diner while in college, and most of the time we spent talking about boys, music or trivial things, that seemed very important at the time. We never got serious about anything in particular and spent most of our time laughing. As I went to take some of my medicine with a snack as I usually did, she watched me with an awkward kind of stare, instead of continuing the conversation. She then asked me out of the blue what it felt like to have Lupus and be sick. I was shocked not only because she asked the random question, but also because I assumed she knew all there was to know about Lupus. She came to doctors with me, she saw me walk with a cane, and throw up in the bathroom. She had seen me cry in pain, what else was there to know? I started to ramble on about pills, and aches and pains, but she kept pursuing, and didn’t seem satisfied with my answers. I was a little surprised as being my roommate in college and friend for years; I thought she already knew the medical definition of Lupus. Then she looked at me with a face every sick person knows well, the face of pure curiosity about something no one healthy can truly understand. She asked what it felt like, not physically, but what it felt like to be me, to be sick. As I tried to gain my composure, I glanced around the table for help or guidance, or at least stall for time to think. I was trying to find the right words. How do I answer a question I never was able to answer for myself? How do I explain every detail of every day being effected, and give the emotions a sick person goes through with clarity. I could have given up, cracked a joke like I usually do, and changed the subject, but I remember thinking if I don’t try to explain this, how could I ever expect her to understand. If I can’t explain this to my best friend, how could I explain my world to anyone else? I had to at least try. At that moment, the spoon theory was born......" This has a copyright on it, so I can't post the whole article, that was to encourage you to go read it though - it's worth the time!!!!
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Post by DJ on Sept 11, 2017 15:58:52 GMT
That was the best story every wrote for a lymie! I have it saved somewhere on this computer LOL
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Post by Admin/ Traveler on Sept 11, 2017 16:17:25 GMT
It has been a life saver for me to remember that I MUST count my spoons daily!!! Then, I must follow through and remember to save enough spoons for each activity that I need to do each day.
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Post by Admin/ Traveler on Oct 20, 2017 18:14:58 GMT
So, I was considering starting a different thread for different infections, but then thought it might be best to keep them all together. Anyone have thoughts to share on this??? Please message me! So, some have discovered that their iron levels are okay, but their ferritin levels are quite low and that's what I wanted to share information on today. Seems this really baffles doctors, even LLMD's don't know what's causing it or how to correct it. Hopefully this will be of help to those that find themselves in this situation: Babesia - Dr. Susan Mara "Babesia infection is transmitted through a tick bite or contaminated blood products, where sporozoites directly enter the bloodstream and infect red blood cells that contain a heme structure, where an iron molecule resides for oxygen binding purposes. Babesia interferes with red blood cell function, giving rise to common symptoms of: night sweats, air hunger, shortness of breath, severe headaches and often anemia of chronic disease. Serologically, low hemoglobin, hematocit and/or red blood cell count, as well as low ferritin and transferrin, may accompany this disease. Additionally, there are two confirmed human cases of maternal transplacental transmission in humans." And this article is from one doctor that actually knows how to address this, I believe. As always, do your own research and don't assume that everything is okay if you feel it isn't. Double checking with your LLMD or doing your own research if you believe something is not right is the only way we will find our way out of this mess. 7 REASONS TO TREAT LOW FERRITIN LEVELS + STEP-BY-STEP TREATMENT GUIDE, Dr. Weston Childs"Can you have low ferritin with normal iron? Yes, it is entirely possible to have low ferritin levels with normal serum iron studies. This has to do with how iron is stored in the body. Low iron studies patient case study Your body used ferritin as the marker for the amount of iron in "storage". This should be compared to the serum iron which is readily available for use. Your ferritin measures this "store" of iron, so low levels of ferritin indicates that your storage is low. So it's possible to have low storage of iron, but adequate serum/blood levels of iron floating around. But here's the catch: Adequate ferritin is still required for proper cellular function including proper thyroid function. This means that low ferritin levels but normal iron levels should still be treated. What about high ferritin but low iron? This part can be somewhat confusing so let me explain: Ferritin is a marker of iron stores in the body, so it would follow that high ferritin would mean you also have high iron in the body, right? Well that is one potential cause of high ferritin, but it's not the whole story. It turns out that ferritin is also an acute phase reactant. That means ferritin may rise in the setting of inflammation. So a high ferritin doesn't always mean high iron levels. This is how some patients may have high ferritin (due to inflammation) but low serum iron levels (due to deficiency of some cause). That's why it's always important to be evaluated with a full comprehensive set of labs that includes all iron studies, ferritin levels and inflammatory markers (including ESR & CRP).
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Post by Admin/ Traveler on Oct 24, 2017 21:24:49 GMT
*Ophthalmic manifestations of bartonella infection * Amer R, Tugal-Tutkun I. /Current Opinion in Ophthalmology/. 2017 Nov;28(6):607-612. link to articleAbstract *Purpose of review* The eye is commonly affected in disseminated cat scratch disease (CSD) caused by Bartonella species. This article reviews recently published data on epidemiology of CSD, clinical features of ocular involvement, diagnosis and treatment. *Recent findings* The annual incidence of CSD has been estimated as 4.7 per 100 000 in the United States. It occurs predominantly in the southern states, with a peak in January, and disproportionately affects children. Retinal infiltrates, neuroretinitis and branch retinal artery occlusions have been reported as common manifestations of ocular bartonellosis in recent series. The use of different antigens for serodiagnosis and new real-time PCR assays for molecular diagnosis have been described. Despite lack of a standard treatment, good visual outcomes were generally reported in patients with ocular bartonellosis. *Summary* Bartonella infections continue to be a burden worldwide and epidemiologic features may guide preventive measures in high-risk regions and populations. An increased awareness of diverse posterior segment manifestations will lead to an early diagnosis of ocular bartonellosis. Laboratory diagnostic methods continue to evolve and may be applied to the investigation of ocular fluids for a definitive diagnosis of ocular bartonellosis. Well designed clinical trials are required to establish the optimum treatment of especially sight-threatening manifestations.
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Post by alyeska on Nov 3, 2017 20:59:51 GMT
Wow! My dad was an ophthalmologist, and he would have been fascinated by this. He died before I got diagnosed. I sure wish he were here to help me now. He used to read medical journals for fun! It sounds like you do too, Trav. Thanks so much for doing all of this. Your hard work is so appreciated.
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Post by Admin/ Traveler on Nov 3, 2017 21:08:29 GMT
Thank you Alyeska! I'm so glad you are finding this information helpful! I'm so very sorry on the loss of your Dad. I lost mine when I was 17, and I was a HUGE 'Daddy's girl'. Actually, I don't 'enjoy' reading medical journals! LOL! But, they are definitely the place to go to find the level of information that I'm now looking for. With the experiences that I have had, and now my own hubby, I'm amazed at how much I understand! LOL!
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Post by Admin/ Traveler on Feb 9, 2018 22:06:31 GMT
I just discovered a site that has information that may be helpful to those that are homebound, or just have difficulties with things like grocery shopping, getting to and from Doctors appointments and so on. Lots of helpful information on this one page: "How to get on...." Another good article from the same site: How to be homebound
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Post by alyeska on Feb 10, 2018 14:58:42 GMT
I just discovered a site that has information that may be helpful to those that are homebound, or just have difficulties with things like grocery shopping, getting to and from Doctors appointments and so on. Lots of helpful information on this one page: "How to get on...." Another good article from the same site: How to be homeboundThis was really unbelievably informative, Trav! Thanks so much for posting it. One of of the things I have a questions about is this. I read the term on the “what I wish I had known” part of the site and found the definition on Wikipedia. “Post-exertional malaise (PEM) is one of the main symptoms of myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS).[1][2] PEM can be described as "a delayed and significant exacerbation of ME/CFS symptoms that always follows physical activity and often follows cognitive activity".[3] PEM is considered a cardinal symptom by a number of the different diagnostic criteria for ME/CFS, including the International Consensus Criteria.[4][5][6]” Do you have any idea why this wouldn’t include chronic Lyme disease? It only discusses it with Chronic Fatigue Syndrome, but for me this is a huge problem in my life. Isn’t this something most of us go through? I found it very curious that it only mentioned ME/CFS. I know Wikipedia isn’t always an accurate source, but I really thought this was a major symptom of CLD.
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Post by Admin/ Traveler on Feb 10, 2018 18:48:03 GMT
I just discovered a site that has information that may be helpful to those that are homebound, or just have difficulties with things like grocery shopping, getting to and from Doctors appointments and so on. Lots of helpful information on this one page: "How to get on...." Another good article from the same site: How to be homeboundThis was really unbelievably informative, Trav! Thanks so much for posting it. One of of the things I have a questions about is this. I read the term on the “what I wish I had known” part of the site and found the definition on Wikipedia. “Post-exertional malaise (PEM) is one of the main symptoms of myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS).[1][2] PEM can be described as "a delayed and significant exacerbation of ME/CFS symptoms that always follows physical activity and often follows cognitive activity".[3] PEM is considered a cardinal symptom by a number of the different diagnostic criteria for ME/CFS, including the International Consensus Criteria.[4][5][6]” Do you have any idea why this wouldn’t include chronic Lyme disease? It only discusses it with Chronic Fatigue Syndrome, but for me this is a huge problem in my life. Isn’t this something most of us go through? I found it very curious that it only mentioned ME/CFS. I know Wikipedia isn’t always an accurate source, but I really thought this was a major symptom of CLD. Post-exertional malaise is seen in quite a few of our infections, actually. Both bacterial and viral infections can leave a person with post-exertional malaise, although as with most of these symptoms, not everyone has this. I sure did! Even just going to get groceries for the week would require 6 days of nearly complete rest at one time! Boy, am I glad it's not that bad now! (side note - adrenal issues can also add to post-exertional malaise as well - not sure if low thyroid would as well though.) One thing to remember about that site, is that although there are many things that do apply to those with Lyme, not all will. When I first started investigating what was going on with me and why I had been so ill, I landed on ME (Myalgic Encephalopathy), but within a month or so, I had those members telling me I needed to look into Lyme disease, as my symptoms sounded more like Lyme than ME to them. I'm soooo glad I not only was on that site where members were so kind, but that I listened!!
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Post by alyeska on Nov 16, 2018 6:44:46 GMT
This was really unbelievably informative, Trav! Thanks so much for posting it. One of of the things I have a questions about is this. I read the term on the “what I wish I had known” part of the site and found the definition on Wikipedia. “Post-exertional malaise (PEM) is one of the main symptoms of myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS).[1][2] PEM can be described as "a delayed and significant exacerbation of ME/CFS symptoms that always follows physical activity and often follows cognitive activity".[3] PEM is considered a cardinal symptom by a number of the different diagnostic criteria for ME/CFS, including the International Consensus Criteria.[4][5][6]” Do you have any idea why this wouldn’t include chronic Lyme disease? It only discusses it with Chronic Fatigue Syndrome, but for me this is a huge problem in my life. Isn’t this something most of us go through? I found it very curious that it only mentioned ME/CFS. I know Wikipedia isn’t always an accurate source, but I really thought this was a major symptom of CLD. Post-exertional malaise is seen in quite a few of our infections, actually. Both bacterial and viral infections can leave a person with post-exertional malaise, although as with most of these symptoms, not everyone has this. I sure did! Even just going to get groceries for the week would require 6 days of nearly complete rest at one time! Boy, am I glad it's not that bad now! (side note - adrenal issues can also add to post-exertional malaise as well - not sure if low thyroid would as well though.) One thing to remember about that site, is that although there are many things that do apply to those with Lyme, not all will. When I first started investigating what was going on with me and why I had been so ill, I landed on ME (Myalgic Encephalopathy), but within a month or so, I had those members telling me I needed to look into Lyme disease, as my symptoms sounded more like Lyme than ME to them. I'm soooo glad I not only was on that site where members were so kind, but that I listened!! I have absolutely no idea why I haven’t seen this response until now. Weird!
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Post by Admin/ Traveler on Nov 16, 2018 16:41:39 GMT
Post-exertional malaise is seen in quite a few of our infections, actually. Both bacterial and viral infections can leave a person with post-exertional malaise, although as with most of these symptoms, not everyone has this. I sure did! Even just going to get groceries for the week would require 6 days of nearly complete rest at one time! Boy, am I glad it's not that bad now! (side note - adrenal issues can also add to post-exertional malaise as well - not sure if low thyroid would as well though.) One thing to remember about that site, is that although there are many things that do apply to those with Lyme, not all will. When I first started investigating what was going on with me and why I had been so ill, I landed on ME (Myalgic Encephalopathy), but within a month or so, I had those members telling me I needed to look into Lyme disease, as my symptoms sounded more like Lyme than ME to them. I'm soooo glad I not only was on that site where members were so kind, but that I listened!! I have absolutely no idea why I haven’t seen this response until now. Weird! 'Cause even though we have Lyme, we can still be sneaky? I've missed a post here and there until I happen to run across them as well. For some reason, not all the 'new posts' are always noted is all. Not helpful, but it's a free site, so I'm still wanting to work with it.
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Post by alyeska on Nov 19, 2018 19:47:54 GMT
I think it’s great, as you know!!! I don’t know what I’d do without this forum.
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