# RE: A spouses point of view



## Guest (May 10, 2001)

To All you good people, from Laura, Mike and family.MyFamily1st###aol.com Please go to view full message Thank you all for the prayers and the kind responses to my post, it really helps me to read them. I spend a lot of time on the computer reading but not a lot of time writing. I think that this is my way of getting time to myself. But I would like for you all to know what brought me to right the article (From a spouse's point of view). I am always reading the posts from the 16 message boards that I so often visit. I have never seen a post from a spouse asking questions on his wifeï¿½s behalf or his own. But I do read way too many posts about family, friend and doctors that donï¿½t understand what is going on. Some seem to think that it is all in your head or you are just getting lazy. This really bothers me knowing that there are still people out there that have not yet opened their eyes to these invisible and very debilitating illnesses. Yet all they need to do is stop and think from the heart with an open mind. I am sure they can see that you donï¿½t feel good but they need to stop thinking to there selfï¿½s, ï¿½How can you feel that bad?ï¿½ (you look ok). Just because a doctor said that there is nothing wrong with them, other than they need to lose a little weight; start exercising and quit smoking doesnï¿½t mean anything this is only the opinion a true physician want to be. And believe me this can happen, I will never forget the time that my wife came home from a doctorï¿½s appointment crying because the doctor was not thinking from the heart when he said those words to her. Now I know why some doctors respond with those words, it is because they donï¿½t have a clue to what they are talking about. Because if they have ever really read any of the medical info on these illnesses and I mean really read it with an open mind, then I think they would be on there way to becoming a real Physician. But I believe that knowledge alone does make a good doctor, if they can not listen with there Hearts then they will never truly master the profession that have chosen. This has got to be the reason why some doctors just donï¿½t get it, because when someone comes to them with the complaints of constant pain, Fatigue, and also having memory problems along with all the other symptoms that come and go. How can they dismiss these Health Problems that have totally taken over their patientï¿½s lives for example; missing work, bills getting harder to pay, less time spent with family and friends and more time in bed. All the things that they love to do just hurts to bad to do any more. Well I know that all the pain and all of the never-ending new symptoms that are continuously changing from day to day can be so very debilitating. My wife and all of you are good people with great minds and yet there are to many out there that just donï¿½t listen from the heart, and I would hope that some day they will realize this. But unfortunately I think that there may also be other reasons for their responses and there total inattention to what people are telling them and how the pain and symptoms are making it impossible to function on a daily bases. This may be due to the fact that some doctors are not putting enough time and effort in to their on going education. Maybe they have out smarted there selfï¿½s. Or it may be because you just can't teach an old dog new tricks. I can just look into any of my family memberï¿½s eyes and see that they donï¿½t feel good and there coming down with something. Know you would think that a good Physician should also be able to see the true pain in peopleï¿½s eyes. As a spouse and a friend I think that no one should ever ignore a Loved one when it comes to their health. Does anyone really think that their Loved one or friend is over exaggerating when they tell you that they have all of these symptoms and that the pain and fatigue is unbearable at times? Well, you know these good people and you know this is not like them. I can easily understand a so-called doctor doing this but not a family member. Well I see that I have vented just a bit with the first part of why I put down my point of view on paper. But the next reason came after I had started posting the info that I had on these illnesses along with my wifeï¿½s symptoms. I had received some e-mail from a few spouses and 1 soon to be. They where asking how I have been able to deal with all of my wifeï¿½s symptoms. But as I was reading them I noticed that they were looking for the same answers that I was when this had all started for me. I could feel what they where saying because I have been there. I know that it is not easy for some men to speak what they are truly thinking. So I sat done and wrote from my heart, in the hopes that other families and friends out there would read it and see that they are not alone. Now I know that there are spouses out there that are trying to get more educated with all three of these illnesses because I have received e-mail from these gentlemen. And I am praying that these family members and friends keep up the search for knowledge and a better understanding of what these invisible but very real illness can do. And as you learn about the medical aspects of these illness and especially the symptoms, it would be a good idea to get involved in the treatment and try to attend as many of there doctor appointments as possible. But if you are unable to do this due to work then have another family member or a good friend go with her. There is so much mental fog at times that there needs to be someone else in the room that is able to think more clearly and can help explain the symptoms in more detail. This way the doctor is able to understand that their health is really going down hill and this is not like them. There should always be someone going to the appointments with her to help screen the doctors or should I say to weed out the bad ones. Treatment is also something that we need to get involved in (remember the brain fog can be very bad at times) so we need to make sure that the meds are taken on time. You can also help with judging all the different meds that they usually prescribe, by setting down and talking about the symptoms together you will be able to rule out the meds that are not working. If the doctor has changed a med and it has not changed the severity of the symptom itï¿½s suppose to be helping then its time to move on. What works for one usually doesnï¿½t work for the next person so this leaves no option but to keep looking for what works the best for you. With so many different meds and magic elixirs on the market it can be hard for anyone to find what works for them on their own. And when you finely find one that makes a noticeable change it is some times only short lived, because your body will start building up an immunity to it. This is basically just a continuing quest for what will mask the symptomï¿½s ï¿½because thatï¿½s all there is for nowï¿½. Now for how my son Michael and wife Laura are doing. My son 11 is making some headway; he is not coming home from school and going to bed or lying around like he was doing so I thank that the fatigue is better. He says that the severe headaches have also got better and I can see it in his eyes. But the knee, ankle and rib pain is still there, along with the concentration and memory problems but I believe there are more good days then bad. I am not picking him up from school as much, but the mourning are still the worst for him. His knees hurt till he gets moving around but there are some days he just cant do it, so he will stay home and hang out with me and mom. Now to were Laura is at, I am going to add the post with my wife symptoms that the other spouses had responded to. But before I do that, there are a few more things that I like to add. First; there needs to be more symptoms added to her list, she has done nothing but gone down hill sense I had written it. Her cane is only good from the bed to the bathroom, every thing else she needs the wheel chair because her knees, ankles and shoulder just hurt to bad and there is also the problem with more dizziness. I am not going to get into the memory and mental thinking processes but they have also gone down hill. She is not responding very well to the treatment like my son is. Now I know that all of the never ending symptoms and the pain makes it almost unbearable at times and I think that is important to keep a positive out look on the future and your health but yet to live every day one at a time. Do just what you are able to do, never go over board because you will pay for it. But the tough part of these illnesses is the depression and the stress and if you get involved in the traetment and become more under standing this will help tramendsly. Knowing that they are not alone with the treatment and that there is a loved one standing with them, can make the struggle for more good days much easier. Understanding and help can ease the stress and thus the depression. I can relate to what you are going threw but not 100% of it but I can relate. And I can not began to count the times that I have just broke down and cried with the wife I know that she is in so much pain and I cant make it go away, so I just help her threw it best I can. So I know the pain you are going threw and you are not alone. My wife was diagnosisd in January with Lyme Disease and has been on IV Claforan 2 grams every 8 hours at home through a pick line. (Update she is know on IV vancomycin 1400 millagrmes in 250 cc of saline once a day) Do to the HERX that you get when being treated for Lyme Disease she has had to stop and start them many times. Sense they have started the IV treatment I have to take her to the hospital once a week to have blood work drawn for a CBC, MCP, Vancomycin troth and a UA. The first time we went, I get her a wheel chair at the front door and take her to the fifth floor which is the oncology floor (cancer pt.). We go into a room and they have her just stay in the wheel chair in front of the desk, with a pick line in it only takes about 10 min. As we are waiting I am looking around the room at the eight reclining chairs that are all full. I find my self taking a very close look at these people and they all have a machine hooked up to them. I look to a lady maybe in her late fifties, she is knitting what looked like a scarf I watched her for only about 30 sec. When she moved her arm I could see that there was a hose running into her chest where her right breast use to be. Then I glance to the other side of the room at a lady who is maybe in her early forties, she is sleeping and has a blue handkerchief tied around her head you could tell she did not have any hair. She looked like she weighed maybe 80 pounds, as I looked at her sleeping face the expression was that of pain, worries, suffering even in sleep. As I continue to look around the room I find my self-looking only at the faces. Two women setting next to each other were talking I could quickly tell that some of the smiles where very hard to put on, one of the women was also on oxygen and it would take her a little long to respond but she always finished it with a smile, they where talking about there wigs. And then I look over at my wife, the nurse is drawing blood out of her pick line and they are talking, the nurse then said something to make my wife smile. At this point I headed for the hallway if not I would have completely broke down in front of all those people. I'm not sure exactly what I was feeling at that moment, I think part of it was that I have already been through so much pain and suffering and did not want to see anymore and the other part was that these good people have much more to go through then we do. We have been going to give blood for the last 17 weeks and the chairs are always full and I have not seen the same face twice. The first few times that I went in there I would try not to look around much. But now when I go in there I will strike up a conversation with anyone even their spouses whom have brought them for treatment. And I am not in rush to get in and out like the first few times and if I bring the wife in around lunch time it gives me more time to talk lol, because the nurses are passing trays and I think this is also helpful for the wife to see that we are not alone. I do not mean so much as the physical part of the illness; I am talking more about the mental part and how they are able to keep smiling. To talk with these good people and listen to their conversations seems to give Laura and I a better understanding. This room is full of some of best people you will ever meet and every time I leave there with more insight and understanding then when I walked in. I have to got to add this, there is a TV in the room and it is usually on CNN and it sure can start some good conversation. I just love to here there comments or should I say there point of views on all of issues. Now donï¿½t thank that they are always talking about there illness, they do in way but not directly.(The Ladies talking about there wigs and the other things that I saw that day and then my reaction to it all.) ï¿½Well I am still learningï¿½ In my opinion when I wheel my wife in to give blood I have some time to learn from some of the best people there are and just to talk with them you can feel it. I was talking with an older couple, her husband had pulled up a chair next to hers, as I was talking to them about our kids I noticed how they would keep touching hands and smiling at each other ï¿½True Loveï¿½. When I am in there conversations change quickly and someone always has a positive but honest response. They are so upbeat, outgoing, good hearted and can speak with such wisdom and knowledge that only comes from living lifeï¿½s ups and downs with a heart of gold and a will to conquer. There are so many people who are suffering from different illnesses and the one thing you need to remember is that you are not alone. We must all keep are heads up, this is the only way to keep GOD and his wisdom in sight. NEVER GIVE UP!! No matter what.Ok now I am going to add the info that the spouses responded to. I have posted this letter hoping that it might answer some of your questions. When it comes to chronic illness, we cannot afford to pass up any knowledge or ideas that may help us or others. When we work together and exchange knowledge, it can give us new ideas and questions for us to ask our doctors. I know what these illness can do to a family; my Mom had to take an early retirement shortly after her Fibromyalgia dx in 1994 and is still fighting for SS. But my mom had some good doctors, they ruled out all infectious illness that they could test for before they gave her the dx.There are some days she can't even get out of bed. This from a woman that went up to 10 years straight, with out taking a sick day. But my wife's doctor did not test for all of these illness before he gave the fibro dx. In 1998 and the CFS dx in late 1999. He left one out because it was "not in are area." My wife, who is an RN, works out of our home doing Case Management for workmen's comp insurance had to quit her job because she just can not think clearly enough to write reports. She has severe brain fog, severe short-term memory loss, inability to concentrate, ringing in ears, light sensitivity, sore tight feeling throat, pain all over; feet, ankles, left shoulder, chest, neck, and hands you name it. Also other symptoms such as heart palpitations, nausea, dizziness, verbal dyslexia, spastic colon, irritable bowl, night sweats, mood swings, eye problems, blurred vision, eyes twitching and numbness in the right side of her face, hair loss, muscle spasms, weight changes, panic attacks, sever fatigue all the time, sinus infections, and can't sleep. She is always crying from the depression and the pain, some times she even has to crawl up the stairs at home because her knees hurt so badly. And she had also tested positive for the Epstein Barr virus. I am now taking care of my wife and 4 kids full time. Back in early August she had gotten to the point were she would for get to take her meds. Sometimes she would not eat, this was do in part to either she would forget or just could not get out of bed to get something. At this time I decided to quit my job. What we had in are savings account I can always replace. And all of this before her new diagnosis in Jan. 2001. I now do all the cooking, cleaning etc. with a little help from the kids LOL. It's not easy, but I will continue to take care of her. For richer for poorer in sickness and health, this I vowed to her and promised her. But this I do know, some people with fibromyalgia and CFS also have an underlying illness that triggered these symptoms or mimic these symptoms. But Fibromyalgia and CFS can also be triggered by an injury do to a car wreck, trauma due to a death in the family or even excessive stress, ect. But if it is a disease that triggered the symptoms then it can be treated, and help with the Fibro and CFS symptoms. My wife's Fibromyalgia and CFS dx 2 years ago was wrong. She had an underlying illness. The illness my wife has that actually trigged the Fibro symptoms or should I say mimicked the symptoms, is widely over looked by the medical community around the world. Is there Fibro and CFS "(((yes)))". Are all of the diagnosis of Fibro and CFS correct? In the last 10 months I have spent countless hours researching these illness. I have amassed so many web sites pertaining to them. And some of these sights are from the U.S. Department of Health, NIAID, U.S. ARMY, CDC and more. Please read them carefully especially where they talk about conditions that rule out Fibro and CFS, what causes Fibro and the conditions that do not exclude a diagnosis of CFS. You will find one disease that keeps coming up over and over again. Any info that you may have on Fibro and CFS may also have the disease that I am talking about. Or they may say other diseases; it's the same thing. The CDC says this disease is in 49 states in the U.S. and that a county in which this disease is endemic is one in which at least two confirmed cases have been previously acquired or in which established populations of a known tick vector are infected with B burgdorferi. We have 113 counties in the state of Missouri. The CDC count as of early 1998 is 1,025 confirmed cases in our state. And the total for the U.S. is 115,181 and climbing as doctors here and around the world are becoming more aware of it. The first web site is the. The largest CFS and FM site on the web.Scroll down to the infectious agent's column its about 2/3 of the way down, it says and I quote. It appears likely, however, that infectious agents, among other stressors, can precipitate the syndrome. The best evidence comes from carefully studied cases of new infection with B. burgdorferi, in which CFS was triggered following apparent resolution of the bacterial infection. B. burgdorferi is Lyme Disease But you may want to read the hole article. http://www.immunesupport.com/library/cfsdi...181#readarticle http://www.mayoclinic.com/home?id=5.1.1.6.5 http://www.nih.gov/niams/healthinfo/fibrofs.htm Questions and Answers About Fibromyalgia http://my.webmd.com/content/article/1680.51255 WebMD - What Other Conditions Show the Same Symptoms as Fibromyalgia? http://www.healthy.net/asp/templates/artic...=Article&ID=587 HealthWorld Online - Fibromyalgia - Fibromyalgia: The Muscle Pain Epidemic http://www.cfids.org/cfids.html An Introduction to CFIDS. Information on Diagnosis, Treatment, & Research http://www.lifelines.com/cfstxt.html http://aolsvc.health.cbshealthwatch.aol.co...%20Type=Library CBSHealthWatch- Library - Fibromyalgia: Finally, a Diagnosis http://www.immed.org/illness/fatigue_illness_research.html Fatigue Illness Research http://www.cdc.gov/ncidod/diseases/cfs/defined/defined3.htm CDC - Chronic Fatigue Syndrome http://www.aafp.org/edu/guide/rep276.html Rheumatic Conditions -- Recommended Curriculum Guidelines for Family Practice R http://www.noah-health.org/english/illness...cfs.html#Causes Chronic Fatigue and Fibromyalgia: Ask NOAH http://www.niaid.nih.gov/factsheets/cfs.htm Chronic Fatigue Syndrome, NIAID Fact Sheet http://www.silcom.com/~sblc/fibro.html Fibromyalgia and Chronic Fatigue http://www.cfids-me.org/ CFIDS, M.E., and Chronic Fatigue Syndrome Information Index http://maelstrom.stjohns.edu/CGI/wa.exe?A2...ews&F=&S=&P=200 CFS-NEWS archives -- September 2000 (#2) http://www.cfids.org/medical/index.html#sleep Diagnosis & Treatment of Chronic Fatigue Syndrome MedicineNet.com - Alpha Index - MedicationsUnderstanding CFIDS (CFIDS Assoc. of America) My wife tested positive the first time around on the western blot and met the CDC requirements for Lyme disease and babesioses and are 11-year-old son did on the 2nd Blot, after a round of antibiotics. Thank God we caught his early. The CDC says to get an ELISA first and then follow up to confirm the ELISA with the Western Blot. However it has come to my attention that most Lyme Dr. go straight to the Western Blot because the ELISA's are so inaccurate. Many times the ELISA has to be multiple times to even show anything. We had always wondered why, when she took some antibiotics they made her sicker, we thought she was becoming allergic to them. But some of the antibiotics she was on were actually starting to kill off the B burgdorferi virus. She was getting sicker because as the disease was being killed off it released toxins in her body, witch in turn made the Fibro and CFS symptoms a lot worse and sometimes would creat new ones, she would also get a rash some times. Not all antibiotics will cause this, just some. Please do not let your doctor tell you that lyme disease is not in your area because it is, and its not only in the U.S.. Do you go camping, vacation out of your state, have family visit from out of town ECT? Also an infected tick can be as small as the head of a needle, it can attach fill up and give you B burgdorferi bacteria, and drop off in 24 hours with you never knowing it was there. Did you know that a tick lies on his back on a blade of grass with his legs outstretched so that when someone, or something walks by, he can attach. Only 40 to 60% of people will get the rash and most don't even recall being bitten by a tick. If you would like more on any of these diseases please send me an e-mail at MyFamily1st###aol.com and if you don't mind also add the state you live in now or the one you lived in when it all started. And please remember that just because your Dr. says it is not in your area, he may not be correct. We have found that there are multitudes of people in our area that indeed have Lyme disease and contracted it here in our Midwest State. However, the Dr.'s here are not aware of it. Just are Veterinarians are. Before a diagnosis of CFS, FMS, or CFIDS, a doctor should include a routine laboratory panel with a CBC; a T3, T4, and thyroid-stimulating hormone test; an ESR for evidence of any inflammatory conditions; blood chemistries for indications of diabetes mellitus or kidney, gallbladder, or liver problems; and a urinalysis. A chest x-ray is also appropriate and, if you are aged 40 or older, an ECG. Many experts also recommend, in endemic geographic areas of the country, a Lyme disease test and, in the presence of risk factors, a test, for HIV infection. Additional tests depend on the findings of the history and physical examination. If, for example, there are reports of any joint symptoms, consider ordering tests for rheumatoid factor and antinuclear antibodies. Similarly, muscular symptoms warrant a test for creatine kinase levels. Check for focal neurologic deficits in a fatigued person who complains of having cognitive problems. Brain MRI may be required to rule out early-onset, multiple sclerosis. To meet the CDC criteria for having Lyme disease they have you do the ELISA and the Western Blot. To be thorough, both assays should be used, even though the Western Blot is more sensitive. The increased sensitivity of the Western Blot is analogous to a mountain where the base is a Western Blot and the summit is an ELISA. The Western blot has considerably more sensitivity because it provides detection before the peak of the response. The Western Blot is a qualitative assay based upon the individual visualization of a patient's unique antibody response against the various Borrelia antigens. This type of assay is not restricted by the sensitivity and specificity concerns as the ELISA. An ELISA assay with a quantitative cut-off, and which is not necessarily specific to only the most unique antigens of B. burgdorferi, needs to consider population aspects of false positives (specificity) and false negatives (Sensitivity.) A positive or equivocal ELISA must always be followed with the corresponding (IgM and IgG) Western Blot. http://www.igenex.com/lymeset1.htm IGeneX, Inc. - Lyme Disease Overview The right test to screen for borreliosis is the Western blot Other screening tests such , as the IFA,EIA,ELISA, and PCR DNA probe are often negitive when the Western blot is positive! Doctors who diagnose and treat borrelisis patients, go straight to the Western blot as their screening test. There for regardless of what IFA,EIA,ELISA, and PCR DNA probe test show you should all ways follow with a Western blot. But the Western blot needs to be done at the "right laboratory" one that specializes in borreliosis testing. IgeneX is one that specializes in borreliosis testing and typically found borrelia-associated antibodies, that the regular laboratories missed. The right way to process the Western blot specimen is for the blood to be drawn and express mailed early in week. Research shows the borrelia antibodies have the potential to clump together, resulting in false negitive test results. So far unclumping has not been practical for laboratories to do. The fresher the specimen, the more accurate the test results. This way, express shipping will assure that the specimen does not spend the weekend sitting at the post office. This is the right way to test and ship borriliosis specimens.Western blots look for antibodies. These antibodies are made by your immune system. In this case, the antibodies are made to fight against different parts of Lyme bacteria, which is called Borrelia burgdorferi, and other Borrelia species. In other words, your immune system dose not make one big antibody against the whole bacteria.Some times when the Western Blot shows negative, antibiotics can help convert the test to a pos. What may happen when people are given two weeks of tetracycline(or other antibiotics) is that some of the bacteria die. When Borrelia burgdoferi dies, it is less efficient at avoiding the immune system. That's antibodies may be formed against Borrelia burgdorferi, converting the negitive or eqivocal Western blot to positive, in about 36% of cases. When the Lyme borrelia are alive, they are geniuses at avoiding the immune system. They may do things like go inside white blood cells, and come out enclosed by the cell membrane of your own white blood cells! This may partly explain why antibodies against Borrelia burgdorferi are often not found when patients are tested. Every body has different symptoms over the course of the illness, I have got e-mail from people that has had it for 22 1/2 years in these cases the symptoms came slowly and then there are others that where totally ate up in 2 years like my wife. The out come is always same, it all depends on the person and how strong there immune system is.This is the test that doctors use the most.My wife had a neg ELISA but the Western Blot was pos.And there are some doctors that call the ELISA the BB test.ELISA The Enzyme-Linked Immunosorbant Serum Assay, is the simplest, least expensive, easiest to perform, and most common Lyme test ordered. It is a test based on detecting the antibodies that our bodies make in response to being exposed to Borrelia burgdorferi (Bb). It is a preferred test by laboratories, not because it is more accurate than other Lyme tests, but because it is automated. Many different patient samples can be performed by a single machine simultaneously. This allows for a faster turnover, less costs, and theoretically, standardized test results that are consistent from lab to lab. We are told by manufacturers, health departments and clinics that the Lyme ELISA tests are good, useful tests, but in two blinded studies that tested laboratories for accuracy, they failed miserably. Lorie Bakken, MS/MPH, showed in her studies that there was not only inaccuracy and inconsistency between competing laboratories, but also between identical triple samples sent to the same lab. In other words, identical samples often resulted in different results! In the first study, forty-five labs correctly identified the samples only 55% of the time. In the latest study by the College of American Pathologists, 516 labs were tested. The overall result was terrible! There were almost equal numbers of false positives as false negatives. Overall, the labs were 55% inaccurate. The labs could only give a correct result 45% of the time. You are actually better off to flip a coin! The basis of the ELISA test is that it can be primed to be very specific for particular antibodies. This is done by taking a laboratory sample of the Lyme bacteria and breaking the sample down into fragments. These fragments, or antigens, are then embedded on the side of a reagent vessel like a test tube. Then the patient's serum is added, and any free (non-complexed) antibodies specific for the test strain will then bind to the antigens, which are linked to special enzymes that will change color when antibodies are present. The sample is continually diluted until the reaction no longer occurs and no color change can be detected. The sample is then reported as a dilution ratio, such as one part serum to 256 parts water, or 1:256. The ELISA test sounds simple and straight forward, but it has a couple of major flaws. Borrelia species are some of the most polymorphic bacteria known to exist. In other words, most Borrelia species can significantly change its surface proteins enough during cell division as to evade our immune system, and may differ from laboratory strains enough to result in negative tests, even if antiBb antibodies are present! In Europe, this problem is intensified because they have recognized three species of Borrelia that cause Lyme disease, and so they have available three separate ELISA tests. The questions in America are: 1) Have we recognized all the strains and species of Borrelia that cause Lyme disease symptoms, and 2) are we incorporating them into our tests? The answer is no. Convenience and expedience has chosen that we don't prime our ELISA tests withwild strains, but use a laboratory strain. W hen a lab reports that their ELISA test has had high specificity and high sensitivity, it is usually interpreted by doctors as being a more accurate test, but the doctors don't know what the lab is actually measuring. One of the hidden problems of serologic Lyme tests is the fact that the tests must be primed with a source of bacteria to create the reactions with the patient's antibodies. To do this, virtually all labs rely on a laboratory strain of Bb known as strain B-31.Taking purified antigens from strain B-31 and injecting them into mice, they then can extract a monoclonal antibody to each antigen, or a polyvalent antibody soup. This antibody is concentrated and purified, and then added to the ELISA test to test the efficacy and performance of the test. Unlike the wild strains, B-31 grows well in culture, and this makes it a perfect choice as a consistent and inexpensive source of Bb. But the affinity the mouse monoclonal antibody has to B-31 antigen is quite different from the affinity the patients' antibodies have to the same antigen. This means the test may register as negative because the test cannot detect the slightly different antibody profile that a wild strain of Bb can produce. In other words, the labs are really comparing apples to oranges! This is why, when the American College of Pathologists used human sera to test the accuracy of 516 different laboratories ELISA tests nation wide, the overall accuracy was only 45%. In the quest for specificity, most ELISA tests have become so specific that the test may fail to detect antibodies from related strains of Borrelia. This would include different genospecies that cause Lyme disease, as well as different Borrelia species that cause Tickborne Relapsing Fever. Would a cross reaction to the Borrelia species that cause Tick-borne Relapsing Fever be so bad? The real Achilles' Heal of an ELISA Test is that it can only detect free antibody. It cannot detect any antibody that has become complexed with antigen. The ELISA test depends on the active, free antibodies to attach to the free antigens that have been embedded on the walls of the test tube. If the antibodies in the serum being tested are already attached to antigens, then the enzyme reaction cannot take place. If we think of antibodies as sort of keys that fit into locks, and that on the surface of the bacteria are specific locks we now call antigens, you can see that once a key is inserted into a lock, the key is no longer available to open any other locks. What makes this test so misleading is that many doctors accept high readings as an indication that the patient must really be sick. This logic is exactly backwards. If a patient is really infected with lots of bacteria, that means they have a lot of bacterial antigens floating around in the blood that are complexing free antibodies. So, as free antigen increases, free antibody decreases. Since the ELISA test detects only free antibody, a negative test might actually indicate a more serious infection. Many times, I have seen totally asymptotic patients with ELISA titers over 1000 be treated as though they were on death's doorstep simply because they had a high titer, while patients with borderline titers who are practically disabled are ignored, because a low titer is perceived as meaning less infected! These conclusions are erroneous and actually opposite to the truth, which is that a high titer means greater natural immunity. This phenomena can actually be observed by using vaccines. If a patient has been vaccinated for a disease like tetanus, they will carry a high titer of free antibodies. If you try to measure those antibodies an hour after a booster shot is given, they will test negative. This is because the injected tetanus antigen complexes all available free antibody before the body can make more, so the measurable free antibody level drops. The nature of all antibody is to seek out the proper antigen. The level of free antibody available is variable and often inadequate for the amount of antigen available. As antigen increases (i.e. The bacteria are dividing faster than the immune system can handle), free antibody drops. What a high ELISA test may be a better indicator of is what level of immunity is the patient capable of mounting against this infection? A high titer is the same thing as saying the patient has a high natural immunity, and a low can mean that the patient may be overwhelmed by infection. In one year-long study by Dr. Sam Donta, MD, done on chronic Lyme patients, the initial ELISA tests proved to be more than 66+% inaccurate (1996 LDF Conference lecture). Other researchers have also found the ELISA tests to be inaccurate. Using a 45-panel diagnostic testing protocol from the NIH for testing the efficacy of the ELISA and Western Blot, researchers found the accuracy of the Lyme ELISA varied from about 5075%, and were routinely inconsistent. The CDC's ELISA test did no better on average than any other ELISA. It is the CDC ELISA test which is used for surveillance of emerging Lyme disease in the United States, yet the test was correct only about two out every three tests. Too often, a single negative ELISA test can prevent a sick patient from getting treatment, even despite having serious symptoms! In my opinion, the ELISA test is worthless as a diagnostic tool in Lyme disease. It is inconsistent and inaccurate, and should be discontinued as a tool to diagnose Lyme. If the NIH and CDC truly believe, as they've stated, that the diagnosis of Lyme disease is to be made on the basis of symptoms, then these tests should be temporarily banned until each manufacturer can prove efficacy using human serum. On are first visit with the new doctor they drew blood to test for Lyme disease and babesioses, then he had told us about the antibiotics and how some of them can make you sick. (This was in the first post.) And while we were there he gave her a prescription for an antibiotic called Tetracycline, after 5 days on this she became much much worse. At this point we knew she had Lyme disease before her blood test came back positive, this reaction to the antibiotics is called a Herxheimer Reaction, known to Lyme patients as a "HERX." Remember not all antibiotics will have the same effect, some may make you feel a little better when you are taking them. But then when you stop, they may make the symptoms worse or you may have more of them. There is some info on this below from Dr. Lapp and Diedra Buchwald, they are both on the board of directors for Immune Support.com The first web sight is the Lyme Disease Risk Assessment that was done by the US ARMY, 1983-1996. Go look at the risk factors for the military installations in and around your state. Keep in mind that some of these risk assessments haven't been updated for many years and now are a lot higher. http://www.utech.net/users/10766/lyme.htm#Missouri Lyme Disease Risk Assessments - Done by U.S. Army, 1983-1996 The 2nd sight is also from the ARMY, go down to where it says, and I quote. The importance of these studies, if you live in an area local to one of the facilities that has a risk for Lyme disease, is that your doctor is not correct when he says, "You could not possibly have Lyme disease, there is no Lyme disease in the area. http://www.utech.net/users/10766/sumstate.txt US ARMY AND LYME - WHAT YOUR DOCTOR MAY SAYWhen my wife was first DX with Fibro. I was thinking to my self; now I know another person with this illness. And then came the CFS DX. Do you know someone that also has FMS or CFS, or do they know some one with it? I believe that Fibro and CFS is out there, but is it really this wide spread? That is why I have been sending e-mails and posting in rooms. If you are thinking of being tested and your doctor tells you that you don't have Lyme disease and that you cannot get Lyme disease because it is not in this area.Then ask him to put that statement in his doctor's notes and give you a copy of it. Then you may want to find a LLD Lyme Literate Doctor or an internist or at the least another family doctor for a 2nd opinion. But make sure they follow the CDC criteria for testing and diagnosing the Lyme disease. The western blot is not 100% accurate, but it's the most effective test being used to diagnosis lyme disease, you have to be off antibiotics for at least 15 days before having the test done because they may cause a false negative. Lyme disease is very slow growing, it has three different stages and in some people it can take many years to progress to stage three. The Lyme disease, Borrelia burgdorferi is a type of bacteria called a spirochete that is able to move around the body through the bloodstream and between tissue. It can also invade tissue, replicate, and leave the cell - destroying the cell as it emerges. Sometimes as the bacteria emerges, the cell wall collapses around the bacteria forming a "cloaking device." This action may aid the bacteria's ability to hide from the immune system. When Lyme disease is diagnosed, there is some controversy among doctors. They agree on what antibiotics work best, but not on how long they need to be prescribed. Some say 4 to 6 weeks others say 6 months to a year, but after reading research papers and personal Lyme story's, most are saying 6 months to a year have worked best for them. When Lyme disease is treated with the right antibiotics and period of time, the disease will go into remission but can flare up at any time. The severity of the symptoms and the damage after treatment depends on how long it's been there. The CDC MEDIA Relations Fact sheets say, and I quote. "What are the long-term effects of Lyme disease. ((Relapse and incomplete treatment responses occur. Complications of untreated early-stage disease include: 40%-60% joint disease; 15%-20% neurologic disease; 8% carditis; and 10% or more are hospitalized, some with chronic debilitating conditions))" Worldwide, there are about 850 tick species and 30 major tick-borne diseases. The U.S. alone has 82 species of ticks collectively causing 9 major diseases, Lyme disease, Babesiosis, Ehrlichiosis (HGE form), Ehrlichiosis (HME form), Tularemia, Tick-borne Relapsing Fever, Tick Paralysis, Rocky Mountain Spotted Fever and Colorado Tick Fever. Lyme Disease has been found in 49 states and in most Canadian provinces. In Ontario, the lyme disease bacteria has been found in ticks from as far south as Point Pelee to as far north as Thunder Bay and Kenora. It is found in at least 40 countries across 6 continents. Infected ticks have been found on 71 species of birds and a large variety of mammals: deer, cattle, dogs, cats, rabbits, raccoons, chipmunks, squirrels, and even rodents such as mice, also on lizards.Lyme disease can also be transmitted by a blood transfusion. And in some cases during a pregnancy the bacteria can be passed from the mother to the fetus across the placenta. The symptoms of Fibromyalga, Chronic Fatigue Syndrome, Chronic Fatigue Immune Dysfunction Syndrome (CFIDS) and Lyme Disease are very similar. Including the severe neurological problems, which are caused by the growth of the lyme spirochete that inter the brain through the blood stream, and can also cause the server pressure headaches and sometimes eye problems, blurred vision, floaters and facile numbness or paralysis. And just when you think that you can not possibly have another new symptom arise, here comes one. This in part may be due the fact that the lyme disease is traveling throw your body, slowly destroying the cells over a period of time, causing more damage and intern more symptoms. My wife was misdiagnosed for more than 2 years with Fibro and CFS. Over the 2-year period we had more doctor visits and phone conversations then I am going to try to count. Her file, which is setting in front of me, is 3 ï¿½ inches thick. The print out from our pharmacy has 122 medications that were filled during this time frame; some of these were refills, but most where the try this try that. And the list does not include all the samples from the doctor's office or the over the counter meds. Here are some of the tests that was ran on my wife, for comparison they may or may not be of any interest to you. MRI x 2, Colonoscopy, EGD, Thyroid, Hepatitis A, B and C virus, Influenza, Tuberculosis, Epstein Barr Virus (positive), Ultra sound of Gallbladder, HIDA scan = (Radiographic scan of the Gallbladder) x 2, the 2nd test was borderline so they removed her gallbladder. However, the pain and severe nausea was still there. Blood cultures that were out of the normal range, C-reactive Protein Quant 7.2 High, Glucose Serum x 2 high 119 and 115, Hematocrit 44.2 high, Monocytes 3 low, A/B ratio 1.0 low. http://www.geocities.com/HotSprings/Oasis/...eral-links.html Federal Government (United States) on Lyme Disease http://www.mayoclinic.com/home?id=5.1.1.12.4 MayoClinic.com - Lyme Disease CBSHealthWatch- Library - Fibromyalgia: Finally, a Diagnosis http://www.nurseweek.com/features/99-11/spread.html NurseWeek|HealthWeek Small World: Global spread of disease has experts worried http://www.geocities.com/HotSprings/Oasis/...lyme-links.html Lots Of Links On Lyme Disease - Over 9,000 Categorized Links on Lyme Dis http://encarta.msn.com/find/Concise.asp?z=...=2&ti=761567966 Rickettsia, an Encarta Encyclopedia Article Titled "Rickettsia" http://www.aboutarthritis.com/script/main/...?articlekey=407 AboutArthritis.com - Diseases & Conditions - Lyme Disease http://www.geocities.com/HotSprings/Oasis/...sgroup-faq.html Frequently Asked Questions for sci.med.diseases.lyme (The Lyme Disease NeMedicineNet.com - Alpha Index - Medications The family doctor that we have know also specializes in Lyme Disease and is very well known in the this field. On are first vist with him he told us that out of the 700 patients that he has seen with a diagnosis of CFS and or FMS; 80% of them tested positive for Lyme Disease. Only if I knew then what I know now. My wife is 35 and in the last two years I have watched her slowly deteriorate. She has not driven for 10 months now, can not remember to take her meds and there have been a few times that she had taking them and forgot so she would take more. Also we now have permanent disability tags for the cars and are now working on getting an electric scooter, the cane helps around the house and to get her to the scooter in walmart but she needs to out more I think it would help her depression. (Update we got the scooter) Sense I am unable to work do to my wife and sons health. I spend a lot of time on line and looking threw Medical books trying to learn as much as I can about CFS, FMS and Lyme Disease. My wife has tried to do this but cannot, she does not have the energy or the mental concentration to attempt it. So I know that there are a lot of others out there that also have a hard time looking for info to help them. That is why I put into writing some the info that I have and started to post it. I have received a lot of e-mail from people asking fo


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## moldie (Sep 25, 1999)

Thanks for reporting back in Mike. You have obviously put a lot of time and effort in both this post and your family. You really are a gem, as I stated before. There are not too many guys like you around that I know of. What you said about that older couple's "true love" obviously also fits for you and Laura.When I was nursing, I used to see many of the same nice people come back in, and used to wonder, "God why them, and not me?" I guess he answered me, huh? None of us are immune to to the many of life's altering events that can happen here on this earth. As my husband "reassured" me, "It's like my mother always said, "There is always someone out there who is worse off than you are."Like in any profession where there are a variety of humans around, coming from many different backgrounds, some are in it for the wrong reason, or perhaps they have just become calloused over the years. I once had a doctor tell me: "I'm not saying you need to see a psychiatrist or anything, but maybe if you were a happier person, you wouldn't be having these problems." Now wasn't that sensitive of him? I think they say that, when they are not sure if they can help you, how they can help you, or if they ever want to see you back again. After all, who wants a patient that they can't help. If they would only be up front and tell you, "Well, I don't have all the answers for you," and refer you to someone more knowledgeable about the illness; or admit that the medical profession hasn't figured it all out yet, and just show a little more sympathy, understanding, and encouragement - that is all we really need sometimes, so we can better accept our situation.Hang in there Mike. I am sorry I don't have the energy to search all your links now and comment on them, but I will keep them in mind for later. Thanks again. God bless you and your family.M.


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## Feisty (Aug 14, 2000)

Thanks Mike for all the time and work you've put in to give all of us a better knowledge. You are truly "one of a kind". You're care and concern and your obvious unconditional love for Laura and your family tells me that you have the biggest, kindest, most generous heart and soul of anyone I know. I, too, will have to put all your info into a folder to check into as time permits for me. I really do appreciate this.I'm sending my best to you and your wife and family. Sincerely,KarenI live in Wisconsin and we have many people that have been infected from those nasty little deer ticks. Most Physicians in the area seem "up" on that aspect, anyway. But, they sure do need to be more open-minded to Fibromyalgia and Chronic Fatigue, etc.


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## Debbielee (Jun 14, 2000)

Hi Mike,I am one of those that you sent info to.I am from wi. and was tested for Lyme pryer to my DX of FM. Indeed i tested positive on both the elisa and western blot.They believe my FM was triggered by the Lyme.The dilema i face now is if it is still active--no one agrees.The nuero wants a spinal tap before he will retreat me--it is my understanding that a tap is only 20% accurate so i have declined this.I have now put it all on hold!Debbie


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## lashes77 (Jan 16, 2001)

Mike (and all others), I have just come across a great book that I wanted to pass on to everyone. Mike, I think you'd really enjoy it, and relate very well to it (as I wish my boyfriend would. He's one that won't take the time to even do reading on Crohn's, which he has, much less on my Fibro.) So, here is the info. Read it, and share it with others. If you have read it, share with others as well."Beyond Chaos: One Man's Journey alongside his Chronically Ill Wife" by Gregg Pilburn. The ISBN# 091242320X. It is so great because the man's wife actually has fibromyalgia, so it's not exactly like reading those other books about people's family's struggling with MS or some other sort of debilitatiing illness. Anyway, that's my contribution.Aimee L.


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