Hi, I’m from England. People here are really hit and miss as to whether they believe in Lyme disease. I was bitten when I was 14 on the leg and a week later I developed a ‘bulls eye’ rash at the site of the bite, accompanied by flu like symptoms. My mum didn’t know about Lyme disease and just told me it was coincidental that I felt ill at the same time as having a rash from a bite. I have been ill ever since, and I’m now 30. I’ve had a host of horrible symptoms but struggle to get anyone to take me seriously. I’ve been diagnosed with Chronic Fatigue Syndrome and Irritable bowel syndrome. However these diagnoses don’t explain all my symptoms, such as irregular heart beat and tinnitus.
I recently went to the doctor to ask to be tested for Lyme Disease. He agreed and the test came back today. The doctor told me the test came back with a weak positive and because it was so long ago that I had the bite (16 years) he isn’t prepared to treat me for Lyme.
I’m now feeling really upset as hopeless. I know I had a bulls eye rash and all the symptoms of Lyme. I’ve been so ill ever since. There is little doubt in my mind that I have Lyme disease. I just don’t understand why the doctor is in willing to at least try and treat me. He said I just need to except that I have a life long debilitating condition (chronic fatigue syndrome) and learn to deal with it. However, I’m not ready to just except that diagnosis, especially given my history and ‘weak positive’ Lyme test, so I am now trying to find another doctor.
@mummymj123
Welcome to the community!
Sorry for the late response, I’m a fellow newbie as well :). After reading your profile and post, I really do feel for you and wish I could do more, but the Mod Team and I are here to talk if you’d like. With regards to the site, I highly encourage you to read over the “FAQ” or “Guide” tabs to get a feel for the site and how to use it. The “Forum” tab hosts a number of discussions about Lyme disease and you could browse through to pick whichever topic may be relevant to you (which I see you’ve already done!). Feel free to post anything on the Forums and don’t be afraid to reach out to other members. While this site is a bit quieter than our other sites, I assure you someone will get in touch eventually. Again, welcome to the community and remember: we’re here for you!
Paolo
Hey Mummy,
I have a different approach to my chronic lymes that i’ve also had for decades. i think you would benefit from some of the insights i’ve realized the hard way. first, don’t expect people, even doctors to understand or help. medicine has never fixed this in me, and may have made it worse ( i’m pretty sure it has actually). We are indoctrinated to look to medicine to solve these kinds of problems, but as many discover, it’s a wasted avenue. so here’s the best i’ve got:
First, i am not a doctor, and you may wish to apply skepticism to my advice. however, i have lived with this damned disease and managed to sustain a functional (mostly) career for a long time, without insurance or treatment for much of that time. first, nutrition. research and apply. this is the best medicine i’ve discovered. intestinal health, use of fiber, and good fats as well as reducing sugar to almost nil provides me with a good period of relief from many symptoms, especially arthritis and migraines. support your emotional health with a good supplement. have a handy means of mitigating the effects of reduced mental efficiency like memory fog and lack of focus with good old fashioned note taking. keep a notebook or journal handy and use it for everything. i’ve got stacks in the closet, and i also use art for the same thing, although they are more for the short term, i can’t bear to part with them. i digress, but it’s an emotional thing which is my next point anyway. you must defend against the depression. out of your thirties, things get a lot harder. people don’t give a rats tail what your problems are, they’ve got their own and to them, you’re a hypochondriac. i am a dude with a family, and it may be even worse for us, because in the states your job is to shut up and keep the bucks rolling in. don’t be proud, see a therapist, and expect the downturns. you will see better days, as sure as you will see the worst ones. in the dark of night, when all your life screams at once for an audience in your sleepless head, and you feel the most alone and rejected, you will be very very glad for the tools a professional will have provided you. lastly, you may have to grow acquainted with the possibility that at times persisting is the best you can hope for. the faintest light can be taken for granted by healthy people, and grumbled over. to people like us, it is at times the warmest and most uplifting thing imaginable. i wish you strength and hope, and health. if you need me, i am here, a loving stranger in the dark.
@mummymj123
I personally don’t think you should be giving up. Everything happens for a reason. I have Lyme disease too, and every doctor, including holistic doctors that say they can cure Lyme, have not been able to help me either. Everyone’s body is different. Don’t waste your money on testing and specialists, they’ll more than likely want to pump you up with antibiotics which is a terrible route to go, not to mention it’s better to spend money on supplements and things that are worth it. Antibiotics will destroy your gut and 80% of our immune system is in our gut ( we need that to fight the Lyme). My suggestion (I’m not a doctor but I do know what’s worked and what hasn’t) would be to start yourself with a lowfodmap Paleo diet or AIP diet which is an autoimmune disease diet, both take out all foods that cause inflammation. Make sure you are supplementing with a good product multi vitamin and be sure to get a really good probiotic (I like inner eco or kombucha) but not sure what you guys have in England. I’m from the US, products may be different. With this diet absolutely no sugar, no carbs, no gluten, no dairy, instead focus on organic eating. I know I said earlier not to waste time with doctors, but If you do choose to see a doctor I would ask them to check all of your vitamin levels, we tend to have deficiencies over a period of time. And make sure to supplement as needed. Anti-inflammatory supplements- garlic, tumeric, stevia, organic coconut oil, organic apple cider vinegar (works as a natural antibiotic if you mix it with water a few times a day). Just be careful with herx reactions. And don’t give up!!!
Other than that, I would put your money towards remedies and supplements. At the end of the day, we don’t have a cure so doctors can’t supplement each person with the same thing and expect it to work. That’s why I said everyone is different trial and errors are to be expected.