|Don't Be Afraid Be Informed - Message from TALD creator
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|Author:||Cog1st [ Mon Feb 18, 2008 7:31 pm ]|
|Post subject:||Don't Be Afraid Be Informed - Message from TALD creator|
A NOTE FROM THE CREATOR OF TALD:
I am the creator of this website, I am a Lyme sufferer and I hope to address common questions you may have about the course & treatment of LD. I am not a doctor, I am a patient that can share everything I have learned this far.
When I was diagnosed with Lyme Disease the first thing I did was find an online support forum. Talking with other LD patients can be comforting and helpful. But the one thing I didn't want was for anyone to "sugar coat" the answers to my questions, I wanted the truth, plain and simple. As I learned that truth, it was much uglier than I could have ever imagined. If you don't want to know the truth, read no further.
This website is called Truth About Lyme Disease, so I will not "sugar coat" anything, I promise you the truth, scary or not, I believe it is important for you to understand everything about the disease you may be fighting. Knowledge is power.
Many get well quickly and then there are many who do not, some may be well in month or two others may battle decades. Reasons vary, you may have other tick borne co-infections, viral co-infections or various other reasons you can discuss with your LLMD. A small percentage may never get well, about 5%-25% it is estimated. For some the worst outcome of all, the bacteria creating other major issues, such as ALS or MS. But about 70% will get well. Odds are much higher, closer to 95% if you catch the disease early and it is treated right after being bitten.
Lyme Disease can be a very scary diagnosis, the uncertainty of your future or "getting your life back" we can't help but wonder about. For some of us this will take time, time and more time. I learned too late to be grateful for the days I wasn't sick. It took being sick to appreciate all the well days of the past.
Many of us once diagnosed wtih LD may be "happy" simply because we have finally been diagnosed with something, having gone months or years knowing something was very wrong, but having all test results from Md's returning normal can make you feel like you are crazy. But you aren't.
The classic "diagnosis" many of us have encountered in our search for answers from mainstream Md's is "anxeity" or "depression". I have come to believe Md's diagnosis these, number one because they are actual "symptoms" of LD we are displaying because we truly are anxious about our failing health and have no answers is frustrating, scary & depressing. Secondly, they have no idea what is wrong, so they name your illness with a "symptom" you obviously have. All symptoms have a cause, in many cases Lyme Disease is the cause. Same goes for Fibromyalgia and Chronic Fatigue Syndrome, Ms and many more.
I grew to understand that bacteria in the body can be dangerous and create many symptoms. Usually people with LD have a multitude of symptoms. Some of the symptoms we feel cannot be put into words that a well person would understand. They can be so strange feeling or painful there are no words to describe it. I once tried to explain a neuro symptom to my LLMD in a way he could relate, but I just couldn't, I told him a "Lyme language" needed to be created in order for me to describe in words what I was feeling in my body.
If you have been diagnosed with LD or think you may have LD, it is of the utmost importance to find a Lyme Literate MD (LLMD) if you haven't already. If Lyme is not treated aggressively (in most cases) long term with high dose antibiotics, it can be dangerous. Lyme can create many problems in the body, after all there is a wicked bacteria loose that can wreak havoc anywhere in your body, nerves, muscles, organs, etc. LD can kill in rare cases they say. But truthfully, I wonder how many deaths are related to Lyme. For instance if it invades the heart they may call it cardiomyopathy now. If it invades the nervous system it may be called MS or Lou Gehrig's Disease (ALS) and on and on. I don't think anyone knows for certain what started as Lyme and ended as something else.
If you have not found an LLMD, the best way to do this is to join a support forum and ask other Lyme patients if they may know of an LLMD in your area. Also, you can email me (from the main website contact link) and I can help direct you to someone who will likely help you find a doctor. Please do not believe that Infectious Disease MD's are Lyme literate or any other "specialist" for that matter. If you are looking in your area, ask the MD if they are a member of ILADS or have training through Turn the Corner Foundation. If not, be aware the MD most likely has not been trained in recognizing/treatment of Lyme Disease and likely uses outdated protocols. You might get lucky and have a doctor open to the aggressive treatment necessary, if so I would print and give him Dr.Burrascano Treatement Guidelines, as this is excellent resource for him/her to follow: http://www.ilads.org/files/burrascano_0905.pdf
There are stories of people who have brought the tick with them into the doctors office and showed the MD the tick and the classic "bulls eye rash" and the doctor saying things like, "Don't worry about it, you won't get Lyme". Don't be fooled by MD illiteracy, this is your life! Most people don't remember being bitten and most people never get the bulls eye rash! In fact the rash can appear in many shapes and sizes and even be misdiagnosed as ringworm or some other skin disorder. If you are one of the few that knows you have been bitten and/or display a rash, your MD should start treatment without even ordering a blood test! Sadly, many don't. Most recently, my husbands primary Md's office manager told me a guy came in, tick still attached and the doctor prescribed 2 doxycyline as a preventative!! What?? I asked her where the tick was and to send it to Igenex for testing. She said she didn't know what the doctor did with it, but even she (who knows nothing about LD except what she has learned from me) was very worried. I told her if he comes back send him my way, send him to this website. It may happen right away, months or years from now, but that poor man could end up very sick and not know why, like many of us.
That is the problem. By the time most of us find out we have LD we are already "chronic". I know of no one that has found the tick on them and started treatment and gotten well in a few weeks. I have talked with thousands of people, no one has told me a story like this. Because of illiteracy of people and Md's, we are diagnosed when we are chronically ill. One woman I know thought she was an early case. She found the tick attached and started aggressive treatment immediately. In treatment (like me) over a year now and she is still not well, her LLMD told her he doubted that was the first tick bite and she likely was infected prior to that particular bite, the tick she found attached to her was the tick "that broke the camels back" so to speak and a cascade of symptoms began.
I believe my case may not have been a tick bite, it could have been I certainly have been exposed to ticks as I was into animal rescue. I do remember being bitten hundreds of times by fleas. Fleas are carriers as well (more on this below).
Infectious Disease Md's will tell you, unless LD is caught in the first month and treated, you will never get well! Baloney! Most of us figured out we had LD many months or years after being infected. Even if you find a tick on you and are treated, it is VERY likely you have been infected before and don't know it. There is a mountain of evidence that chronic lyme patients can and do get well, but the IDSA won't look through the evidence! Why? I don't know.
Ticks are not the only way to get Lyme Disease. LD is believed to be carried by fleas, mosquitoes, many other flying/biting insects, blood transfusions, organ donations, sexually, saliva to even bringing live Christmas trees into your home, that are insect infested. This list leaves out few people, it goes to show you this is a common infection and Md's just don't buy it. In some people LD may never 'activate' it can may lie dormant and they can be carriers their whole life without ever becoming sick. Many aren't so lucky and for some reason something goes haywire in our immune system and we become sick.
I think I was most surprised at how small a tick can be. Before having LD, I had heard of it, I certainly didn't think it was life threatening and assumed I would notice a tick attached to me and if I did, well antibiotics would clear up any infection. Yeah right! I would like to at this point thank my local government officials for warning me about tick borne disease ha!ha! The media blitz of West Nile had me running from mosquitoes, but since they carry LD, I will keeep running! I certainly knew everything about West Nile and nothing about LD.
I learned a tick could be the size of a poppy seed or the period at the end of this sentence, I was amazed. But I was shocked to learn that Lyme Disease enters the CNS (central nervous system) within 24 hours of being bitten and could send me down a road in a fight for my sanity and life. I read somewhere you are 10 times more likely to get Lyme Disease than West Nile, I find that hard to believe, I would be willing to bet you are a hundred times more likely to get LD than West Nile.
Because Lyme can lie dormant in your body for years. It may "percolate" coming out one symptom at a time. I didn't know doctor's were unable to diagnose it. I didn't know that it is possible to pass to your unborn baby (my son has tested positive for LD as well as my husband). I didn't know I could have been born with it and lived a lifetime with it in my body! 10 years ago I suddenly started getting migraines. Not long after I had a horrible case of Vertigo. I had body aches and pains now and then, that were all "blown off" by Md's as nothing to worry about. Amazingly, my mother over the course of her life had many of the same symptoms. I thought I just inherited some of these stange things my mom had. I may have "inherited" Lyme and so may have my sister, as she has now tested positive as well.
Instead I had great trust in the doctor's I had seen over the years, because I didn't know any better. Well, I know better now and I have no trust any Md now, except my LLMD. I will make an exception to an MD who can admit he has no knowledge of LD but is willing to learn, not many of those though.
It took a very deep seering pain to get my full attention and a cortisone shot by an Md who misdiagnosed a "pulled muscle" that (felt like a grenade went off internally) disseminating the bacteria body-wide and along with it reactivating dormant viruses, before I had to find help or die. (To read my story click here: http://www.truthaboutlymedisease.com/about.html )
Doctors, what is their problem? They rely on blood tests and xrays, not on your word! If the problem doesn't show up in one of their infallible tests they do not believe you! I wonder if all that is needed to get an Md these days is to know how to order a test. It tends to make one bitter toward the CDC and the medical community. I picture in my mind that most of these Md's go to college read a few books, attend way too many frat parties and are taught "If in ain't found in the blood, it'll be found in the patients head!" They are only good for ordering tests, that they put all of their trust in, rather than putting trust into what the patient is telling them. I have no problem in admitting I don't like and don't trust most doctor's. What a world of difference to finally sit down with an (LLMD) doctor that believes everything you are telling him/her, it is such an amazing wonderful feeling to just be understood and believed. LLMD's will believe you, they listen and know it is not all in your head.
I have gained so much knowledge I can talk circles around mainstream Md's about Lyme. Not long ago I left a mainstreamn NP speechless in his argument against Lyme being at "epidemic" proportions when I asked him to explain the recent admission of the CDC, that 20,000 cases of LD in the U.S. were reported in 2006 (this is bad enough! (compare to W. Nile Virus last year with 1000 cases nationwide in 2006!) but the report by the CDC continued.....they believe their numbers are incorrect and that more than 200,000 cases of LD went unreported in 2006! See video here: http://www.cbsnews.com/sections/i_video ... d=2940713n
I have been very lucky in the sense that I have 3 LLMD's all within a 200 mile range of me. I have had the pick of some of the best and seen 2 of the 3. It is amazing how even they disagree in their use of certain antibiotics and so on. Having seen 2 LLMD's I can say can be confusing, I do appreciate both opinions, yet even I don't always agree with their choice of antibiotics, because I know my body and when it feels like something is working, I want to be left alone for awhile. One of my LLMD's wants to change antibiotics every 90 days or so, some agree this is necessary as the bacteria can grow resistant. Others can tell you they remained on the same antibiotics all throughout treatment.
I think is is also important if you are suffering in pain, that you have a pain management Md. If your LLMD is not treating "the whole person" and just the disease and you are in pain, ask to be referred to a pain management specialist. Under no circumstance, I mean never, take any cortisteroids to alleviate pain or triggger point injections. I cannot stress this enough. In any case, I have been extremely lucky to have one mainstream Md, a pain management specialist (who believe it or not is also an Infectious Disease Md) treat me with all that was necessary to live day to day in the pain I have suffered. I believe at least 2 of these Md's is very concerned for my emotional, mental and physical well being. I am thankful for them.
Don't be a hero! By this I mean, don't try to make it through without pain medicine or anti-depressants if they help! It is a fact that pain everyday is not good and can weaken the immune system (for more on this: http://www.truthaboutlymedisease.com/fo ... .php?t=468 ) I really am so sick of this society and its view of people who take pain medicine! I don't tell other's they should not take their blood pressure medication or cholesterol medication! But for some reason people want to tell those on pain meds not to be! What is the stigma related to this? It is about addiciton. Please read in our Everything You Need To Know about TBD's section, about pain management.
Let me tell you this, pain medication save lives, pure and simple. Without my pain medication I may have taken a swan dive off a bridge long ago. I don't feel guilty taking my antiboitics and I surely do not feel guilty taking pain medications that get me through the day. Society treats chronic pain patients like we are weak and should "suck it up" endure the pain, when there are medications available that will help you!
To feel better is a blessing! I say to those who brag about having lived without pain medication, "Good for you, you must not know pain, pain so intense you'd rather die than live. If one were to truly know this pain, you would be seeking and taking any pain medication offered and gladly taking it. Never tell me what I should and should not take to live my life as comfortable as possible! Addiction is my last worry right now and extremely rare and not anyone elses concern but those on pain medications. The pain of this disease can be intolerable, find a good pain management MD who understands exactly what you need to live through each day. Believe me there are pain illiterate Md's as well, seek out good pain literate Md's. Start by looking up anesthesiologist's, many have pain management practices.
When I was in a quest for answers, I studied the internet a lot. I literally had to diagnose myself and then find help. When I learned that the standard Lyme test at all conventional labs and hospitals was not reliable (devised by the CDC (Center for Disease Control) and that they admit on their website their test is not to be used to diagnose LD) I eventually found a symptoms list and was amazed every single one of my 35+ symptoms was on the list. I then learned that Tick Borne Specialty labs existed. The most well known being IgeneX. After I learned this, I called them and asked if they knew of an LLMD near me or what MD's in my area used them for testing.
Ultimately, this was not how I found my LLMD, but it may not be a bad idea if you have reached a dead end. Make sure that any MD you see sends your blood to Igenex and that it is tested for LD and all the tick borne co-infections. Lyme will not resolve if you also have co-infections (over 60% of us do) unless they are treated as well. Always remember no test is 100% reliable. It is very possible to have a negative test (from any lab) and still have Lyme Disease. The reliability of the standard test is approx. 30%, Igenex is approx. 70%. LD is and always has been meant to be a "clinical diagnosis". An LLMD will know by your symptoms alone whether or not you have Lyme Disease and/or co-infections. Don't be "disappointed" by a negative test - it happens to many. Start treatment if your LLMD recommends to do so and get retested down the road. Sometimes it takes treatment and your immune system to actually become stronger to show a positive result!
Lyme is not easily "cured" with a short course of antibiotics like most infections. You are now dealing with a very different, smart bacteria. Lyme bacteria can sense a hostile environment, in this case antibiotics and "hide". It can enter into a healthy cel unnoticed by our immune system and float on by. I picture in my mind our immune system as the soldiers of our bodies, they are there to guard and protect our bodies from foreign invaders. But if an invader were to dress up to look like a soldier itself, it would go unnoticed and not be attacked.
Lyme can form cysts and hide. When the coast is clear (antibitoics stopped) they can come out of those cysts and you can relapse. Lyme bacteria called borrelia burgdorfi, is spiral shaped and travels better in tissue than blood. These are just examples for you to be aware of how tricky and ugly this bacteria is and that is exactly why you need the best Lyme literate MD you can find.
Lyme hurts to kill. Most will find as you start Lyme treatment you will have a symptoms increase. When lyme dies it creates a toxin which may increase symptoms for hours, days, weeks or longer. These symptom increases are called "herxing". Herxing will usually lessen in severity as time passes and the bacteria is killed. I have been in treatment (as this is being written) 10 months, I still herx off and on. Antibiotic changes can also make you herx. I have learned some antibiotics create harder or easier herxing. It stinks, there just is no one course and predictable outcome for all of us to follow. Each of us will be different in every regard. My first try at antibiotics, was a horrible experience, creating pain so bad, I think I was in shock. My LLMD quickly withdrew the medication and started me on another, I herxed, but at a much more tolerable level. Different antibiotics create different, less or more severe herxing. What may create an awful herx in you, I may handle fine. Anytime I have had to switch or add antibotics, I freak out, plain and simple. I once looked at a bottle of Biaxin for 3 months before finally trying it!! When I did try it, it was no big deal and actually within a few weeks I suddenly had 2 near perfect weeks! I am the queen of fear when it comes to switching or adding, because I have suffered so much pain there are times there is no room for herxing. One thing I have learned, if you join a forum, remember not to think other people's bad report of a particular antibiotic will happen to you, we all will react differently. Later, after being on Biaxin, I read some other patients experiences, NONE of which I had. I am glad I didn't read about other experiences, or I may have never started it never progressed as far as I have. There is a link about herxing, it is not a bad example, but I disagree with the authors experience of the order of symptoms disappearing, eithter in reverse or cognitive issues lastly, my symptoms have not left in any particular order they arrive. Some have told me your first symptom will be the last to leave. Not for me, my last symptom was the first to leave and my first symptom left next, again we are all different, but check it out anyway: http://www.angelfire.com/me2/StarShar/Herx1.html
Many lyme patients detox to help alleviate these symptoms and rid the body faster of toxins. Some "recipes" for detox baths, foot baths and dry body brushing can be found here: http://truthaboutlymedisease.com/forum/ ... um.php?f=4
Lyme is not like most "regular" bacterias. There are 300 strains of LD worldwide, finding the right combination of antibiotics can take time. It is possible to be put on antibiotics and go months without progress, only to switch or add antibiotics and "hit" the right combo and things begin to change. As you get well, you will notice a good day or a good week now and then. You may think you are through the worst of it and on the road to wellness, but then herxing may begin again and it feels like you have not made any progress. The desired goal as time goes on is to slowly but steadily start having more good days than bad. You can and likely will plateau on antibiotics at which time your LLMD will re-evaluate your next antibiotic combination.
Don't make a date with wellness. What I mean by this is, when I first started LD treatment in August the year I became sick, I expected I'd be well by Halloween. When Halloween came and went and I was not well, I expected by Christmas I would be well and again that day came and went and I was not well. It disappointed and discouraged me, that wasn't meeting my "dates". A year later I still wasn't well and my tests indicated possible new exposure!! Frustrating, yes! But understand that you will be well when all problems have been addressed and it can take time, time and more time. Many are ill months or years.
All that I have written here may not be what you want to hear and it may not be what you experience at all either, it is certainly not meant to discourage you, it is my truth. I do believe I will be well one day, but I am realistic and believe it will take time, for me I truly believe it will take a few years, my body was slammed with an immunosuppressant (cortisone) and I have 3 bacterias and 3 active viruses. I am lucky to be alive after the wild dissemination. You may be well in a month or two, I hope you are. I encourage you to visit other forum subjects: http://www.truthaboutlymedisease.com/forum/
Read other LD stories and read the all the Resources available at the main website: http://www.truthaboutlymedisease.com/
If you wish to join our support group to ask a question, please register but you must follow up with an email to activate your registration in order to post.
Please make sure when you see an LLMD that he/she tests you for all the co-infections as well. He/she should run a CD-57, more on these tests can be found at the forum index, Important Health Info or by clicking here and finding more on these and other subjects: http://www.truthaboutlymedisease.com/fo ... um.php?f=4
In closing, you may be in for a wild ride with this disease or not, but no matter what you "feel" in your body, try hard to enjoy each day in some way, otherwise all these days we are given will be wasted. Don't spend your days depressed, try not to grumble, "I hate this, I can't take it another minute" I have done this and I know it weakens me further. I use to have a dance teacher who said "It is simple if you say you can't, you won't". Think positively, take it one day at a time, tomorrow could be different. Tell yourself each day as many times as possible, "I am feeling better and better everyday!" even if you aren't, say it! It is better to speak words of life to yourself than words of death. Life is a gift, be thankful for the symptoms you don't have, be thankful for the abilities you do have. Every storm passes, this "storm" will pass eventually, find joy in each day, while you get well. It may not be a bad idea to start a gratitude journal now (as Oprah suggested years ago) and write down 5 things you are grateful for each day.
You can do this, you will and you will come out better than you ever were.
Peace and prayers to all my "brothers and sisters" that share this disease out there - I wish you all a speedy recovery and peace in the midst of the storm.
Fear is only as deep as the mind allows
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