Thursday, 9 January 2014

10 Things To Know When Someone In Your Life Has Lyme

So someone you know is sick with Lyme disease. It could be a friend, a family member, a significant other, or even just an acquaintance. Whoever it is, you've got some questions.  Or maybe you don't, but you want to get a better idea of what is going on. I wrote this piece to hopefully provide some insight into what life is like when you are dealing with an invisible, chronic illness. Though every person's situation is unique, these points likely apply to many illnesses, not just those I have personal experience with (Lyme and POTS).


1. Lyme disease is an invisible illness.

What does this mean? It means that when someone with Lyme is feeling absolutely horrible, they are likely looking no different on the outside than they do on one of their "really good days". This disease (usually) doesn't present itself with blatantly obvious visible symptoms. Normally you won't see a Lyme patient with their legs wrapped up in casts or with huge bleeding gashes on their bodies. Our symptoms tend to be more internal. Things like extreme fatigue/weakness, joint and muscle pain, dizziness, nausea, anxiety, and brain fog aren't necessarily easily detected just by looking at a person. It can be hard to understand how a person can be feeling so horrible when they look "fine". Often times, they even seem to be acting fine! Which brings us to point number 2.

2. Lyme patients quickly become amazing actors

Let me explain. When you're sick with a cold or a flu for a few days, maybe even a week, you likely spend that whole time in bed or on the couch, maybe complaining about how miserable you feel,  definitely not venturing out in public, and likely not even leaving your bedroom. You probably tell your friends and family you'll see them when you're feeling better. You feel too horrible for company right now. Simple tasks like food preparation and household chores are put on hold. Basically, life is put on hold. Which is acceptable when it only happens for a week at a time, probably once or twice a year. Everyone gets sick, it's fine, it happens, it sucks, but life goes on.

When you have a chronic illness, you often wake up everyday feeling like you have a horrible flu and the worst hangover of your life all rolled into one dreadfully uncomfortable package. As easy as it would be to stay in bed and not talk to anyone or do anything, you know these symptoms aren't going to just disappear tomorrow or even next week. This means you try to push yourself as much as you can to do normal things. Some days you might not be able to push much more than making yourself dinner, if that. Other days you might venture out to the store or to see a friend. Your friend might tell you how great you look. "You must be feeling better! You're out and about!" You're conversing and laughing and you look like you're feeling fine! Unfortunately a lot of the time, it's all an act. When you're chronically sick, you learn pretty quickly that wallowing and complaining about symptoms and refusing company leads to a very lonely and isolated life. People quickly get tired of hearing you complain about how horrible you're feeling, and you quickly get tired of being stuck in bed with no company. So when you can, you get up, you go out, and you put on a show. You smile and you laugh and you act like you aren't feeling any pain or discomfort at all. It is difficult and heartbreaking to have to live your life "pretending". It's also extremely exhausting, and sometimes in the middle of this act symptoms get worse and you find it harder to appear normal. This often leads to point number 3.


3. Symptoms can come on slowly at times, but other times quickly and suddenly.

Sometimes, we are feeling okay and all of a sudden it seems like the floor has been ripped out from under us. We might need to sit or lie down immediately. We might even pass out. This can be confusing for people that aren't sick. Just a second ago we were okay. What happened? At times, symptoms really do come on very quickly. It's the nature of Lyme. It happens. Other times the person wasn't feeling well at all to begin with but was doing a pretty good job of acting fine (see point number 2). They might have been feeling pretty horrible, but not SO horrible that they couldn't fake feeling okay. Then, their symptoms got worse and it seems like they went from 0-10 in a few minutes. A lot of the time though, what is likely happening is they are going from a 7-8 out of 10 to a 10 out of 10 in pain/discomfort. They have just learned to hide the 7/10 well. 10/10 is much harder to hide, and quite frankly when you're in this much discomfort, acting fine takes a back seat to getting yourself and your body stabilized.


4. Lyme treatment requires a special diet.

When in treatment for Lyme disease there will likely be a laundry list of foods you need to avoid. If you've ever eaten with someone with Lyme, you've probably seen this first hand. Most of the time we need to adhere to a very strict, very healthy diet in order to limit inflammation and toxins in our bodies. We have enough of these to go around already from the Lyme and co-infections! Normally our diets consist of avoiding gluten, dairy, and sugar. Often times we have other sensitivities to add to the mix like soy, corn, eggs and nightshades. If it's annoying for you, take a moment to imagine how much more annoying it would be if you had to stick to this boring diet 24/7. Everyday. And be feeling like complete crap while doing it. Be thankful you're able to eat what you want and feel fine for the most part.

5. Lyme treatment causes something known as a "herxheimer reaction". 

Or a "herx" for short. Similar to how chemo makes a cancer patient feel worse, when someone with Lyme disease takes antibiotics, anti-microbials or anti parasitics that cause a large amount of die off, this releases a huge amount of toxins into the body. This basically results in all of our regular symptoms being amplified as our bodies become burdened with trying to effectively eliminate these newly circulating toxins. Often times our bodies are so overburdened that they are not efficient at detoxing these toxins well, so it's a difficult process, and definitely not an easy one to endure at all. Unfortunately, it is often necessary to push through this uncomfortable period in order to make improvements.

6. Many Lyme patients are not well enough to go to school or work.

This doesn't make them lazy or unmotivated. When you are so sick that even simple tasks like showering and preparing meals is extremely difficult, school and work is out of the question. This is something I've dealt with personally, and even more so in the last year. I have had so many people tell me "You are so lucky! I wish I could stay home all day and sleep in and not go to work or school!" This literally makes me want to scream. I promise anyone who thinks it would be "fun" to be stuck at home chronically sick, without any obligations, is completely and totally wrong. Sure, maybe if you were feeling nothing more than a little under the weather, the first few weeks it would be nice to relax a bit. Then you'd probably go a little stir crazy. You'd be tired of boring daytime TV and hearing about everyone's eventful days out in the real world. You'd want social interaction. You'd want to leave your house! Now pile on top of that the fact that most of the time when someone with Lyme is stuck at home they aren't just feeling "slightly under the weather". They are feeling like death. Sometimes, the simple task of breathing feels impossible. This is honestly not an exaggeration. This kind of sick doesn't feel the same as a simple cold or flu. It feels like torture. Please do not minimize our suffering by calling us "lucky". Nothing could be further from the truth.

7. There is no "magic bullet" or quick fix for late stage Lyme disease.

You might be wondering why your loved one with chronic Lyme is STILL sick. I mean, it's been months, years even! Why isn't the treatment working? Shouldn't they be cured by now? The truth is there is no quick fix for those of us who have late stage Lyme. Things might have been much different for us had we been diagnosed and given proper treatment at the beginning of our illness, but the Lyme has now had months or years to run rampant throughout our bodies and it has no intention of leaving quietly or without a fight. I personally was sick for 8 years before I was diagnosed with late stage Lyme. I have been in treatment for about 9 months and have only seen minor improvements. But looking at the big picture, 9 months isn't such a long time when it took my body years to get to this state. Another thing that comes into play here is no one treatment will work for everyone. Each Lyme case is unique and will respond differently to different treatment options. Often times a Lyme patient will need to try several treatments, even several doctors or practitioners before they find one that allows them to make considerable gains. This process most definitely tests our patience. It might be testing yours, too. Again, it's important to remember that however frustrated you are getting with the lack of progress a friend or family member has had, your loved one is likely feeling 100 times more frustrated, and even disappointed in themselves for "not being better yet". Try to be patient and reassuring, as staying hopeful and persevering when nothing seems to be working is difficult, but absolutely necessary.

8. Lyme disease treatment is extremely expensive, and likely not covered by insurance.

The problem with Lyme disease, is that standard treatment options are geared towards those that catch it within the first few weeks of symptoms. In most of these cases, a few weeks or few months of antibiotics are all that is needed to regain health. These short term treatments are usually covered by insurance. When Lyme disease becomes late stage however, treatment is much more complicated. A few weeks of antibiotics will not even come close to curing the patient. Furthermore there will likely also need to be adjunctive treatments added to the patient's protocol like vitamins, supplements and herbal remedies. When it comes to late stage Lyme we have to pull out all the stops to get better. Sometimes this means traveling to doctors on the other side of the continent, maybe even the world. Or trying new cutting edge treatment options that are pricey and paid for out of pocket. This is a bit of a nightmare for us, as we already have the huge burden of failing health to carry, and don't need the added stress of coming up with enough money to get better. If you want to help your friend, offer to host a bake sale or fundraiser to help raise money for their treatments. It will probably mean more to them than you know.

9. Lyme disease can be extremely isolating.

When you're chronically sick, you often miss out on a whole lot. Little things like parties and get togethers. Big things like graduation and vacations. It's hard, it's heartbreaking, and it's difficult not to feel extremely alone at times. If you have someone with Lyme in your life you've likely witnessed them canceling plans because they were too sick to attend. This might have been annoying to you, but I can assure you they felt completely horrible about it and wish more than anything they didn't have to cancel on you. If your friend with Lyme is struggling to get out, offer to go over and visit them, or to pick up some groceries or Lyme-friendly take-out for them. You could even go over and cook a few meals to make the next week easier. Another way to show your support is to help them advocate for better awareness, so it's not such a struggle living with a disease so many know nothing about. Reach out to them. Tell them you're there and want to help. Chronic illness is uncomfortable and difficult for all involved, even messy at times. Sometimes people don't know what to say, and so they say nothing at all. I can almost guarantee that the sick person in your life would rather receive an awkwardly worded message from you telling them you're thinking of them, rather than nothing at all. Try to put yourself in their position. If you found yourself sick, would you find it easier to have friends who at least tried to understand, or who just ignored your situation completely? Maybe you've decided you'll just wait to see or talk to them until they're feeling better. Unfortunately, it could be a while. Make an effort to make it happen sooner rather than later. I promise, it will be appreciated, and it will show them that you are one of the few who doesn't abandon your loved ones when times get tough. That makes you a fantastic friend and an amazing person. Hold that title proudly!

10. We are just regular people too, this can happen to anyone. Get informed and be compassionate.

Before I got sick, I completely took my health for granted. It just wasn't something I ever gave a second thought to. Sure, you hear about people getting cancer, getting scary rare diseases, going through tragedy etc. etc. But that kind of stuff just always happens to other people. Never to you, right? The truth is Lyme disease (and any chronic illness for that matter) can happen to anyone. No one is immune. Sometimes it's easier to just put this kind of stuff to the back of your mind and not think about it. That way you don't have to deal with it. But what happens if one day you find yourself or someone close to you suffering from chronic illness? Would you not want people to at least try to take the time to get informed, understand to the best of their ability, and do what they can to make it easier on you? Practice patience, compassion, and empathy not just when it comes to dealing with the person you know that has Lyme, but in all aspects of your life. These traits are so important and when you have them you become an invaluable friend and person in people's lives.


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49 comments:

  1. I am a mother of a beautiful girl with chronic lyme. It is so horrible. Many times I have felt so helpless. I mean moms are suppose to be there to make everything better but with lyme we are defeated. All you can do is be there try to encourage them and try to give them strength. It kills me to watch this happening to her. I look up to her and admire her for her strength and desire to beat this. I always smile when we are together but cry for her when I am alone. To all who have this disease I look up to you for being stronger than I could ever be and believe you all and hate those who say its all in your head. Forgive their ignorance. I pray for you all every day and my heart does break for anyone with Lyme. Stay strong please and God bless.

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    1. Thank you so much. I hope your daughter is able to recover from this. I know it's such a difficult thing to live with, for all parties involved. <3

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    2. I'm there in the same boat with you Lucy. It's a hell on earth for families of the poor victims who are SO discriminated against.

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    3. I'm there in the same boat with you Lucy. It's a hell on earth for families of the poor victims who are SO discriminated against.

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  2. You nailed it! Everything I'm feeling you described. Took 11 years to diagnose me and now into my 5th month of treatment! Thank you for verbalizing how we feel.

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  3. This is excellent. I wish every loved one of a person with Lyme would read and understand this. Just to read it helps me feel a little better, since it makes me feel validated. Thank you for writing this!

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    1. Thanks so much for your comment, I'm glad you enjoyed it :)

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  4. Thank you for sharing. I was diagnosed with stage 3 Lymes disease when they finally figured out what was going on. I am truly blessed to be able to function daily and try to keep a positive attitude. I appreciate you sharing this and letting people understand from all aspects and gain compassion for those of us suffering from this disease. May you have an amazing and blessed day.

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    1. So glad you are able to function! And positive attitude is definitely important (and also hard haha) as well! xxo

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  5. A great explanation that all people in relation to a Lyme victim should read.

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  6. Great article. Everyone needs to send emails to congressional leaders, healthcare providers, journalists, the CDC and NIH leadership.

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  7. Sharing this with my family. Thanks for speaking so clearly for me, and for all of us!

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  8. Thank you for such a clear, articulate explanation! As the mother of a daughter with chronic Lyme, I can say your words describe our life perfectly. Fight on!

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    1. Thank you! Wishing you and your daughter health and wellness xxo

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  9. Tells the story well.God bless you.

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  10. Seven years with Lyme and still sick, this is one of the best articles I have read on what it takes to live this disease. Thank you for capturing the courage and strength that Lyme sufferers demonstrate every day in your eloquent article.

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  12. I'm glad I took the effort to read your blog post - but more appreciative you took the time to share these points, Thanks.

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  13. Thank you so much for this. Every point was right on. I have been suffering with Lyme for 8 years and luckily found out 3 years ago and am feeling much better these days. I hear you and understand. We all need to stick together. Keep writing you will find your way back to health.

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    1. So glad you are feeling better! Keep fighting!

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  14. Great article. Very true. I've been fighting ignorance about lyme for 2 1/2 years since my then 7 year old daughter was first bitten by a tick and it was ignored finally diagnosed 7 months later when neurologic damage was done and she was deteriorating rapidly. School and doctors never got it. She improved dramatically only to have a major relapse when we removed meds this last December finally forcing her to be homeschooled years into her illness. The retaliation and attacks we faced from school just because they didn't believe in lyme and were bothering the teachers have been sickening. If only people understood this strange illness. You hit many important points. Thank you for an excellent article.

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    1. Why would someone not believe in lyme?

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    2. Watch the Under Our Skin Documentary, then you will understand the controversy and the fight that we are up against.... http://topdocumentaryfilms.com/under-our-skin/

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  15. Thank you for a VERY accurate description of just how evil Chronic Lyme is. NEVER give up.

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    1. dear Determined Husband.... I have been in Lyme "prison" for 20 plus years now and single the entire time, indeed literally alone for 98% of my battle so far, and so, although I was deeply touched by this article and some of the comments below it, I did not break tears until I came to these words: "DETERMINED HUSBAND". THANK YOU for stepping up like a real man and taking care of your beloved. This is rare. On behalf of all women, thank you. ps.. I have found help with EFT lately. YOu can find it by google ing or youtubing EFT tapping. and its free. ALOHA, Michelle, on Maui.

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    2. ps if you and your wife would like to share info you can find me on facebook as Jeanine Michelle Johanning ( on Maui )

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  16. Way to spell it all out for those around us!
    Best,
    Alix Mayer, co-founder of SpiroChicks

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  17. Absolutely incredible how accurately and wonderfully you expressed what each of us, suffering with Lyme, feels and goes through. I related to every word of it, especially the 'pretending' so you can have some semblance of a normal life. Thank you!

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  18. How long does it take to heal if it's been in your body for 8 years?

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    1. Emma. It really depends on what type of protocol your doctor has you on. Many people these days are going for the naturalopath doctors. It also depends on your tests, how high was the results and did you have a co-infection. If he/she is on antibiotics by mouth or IV. All doctors will continue to run blood work to see how they have come down. For example. I was on Rosephine antibiotics for 2 years by a port in my heart. And then I was on for 5 years oral antibiotics as well as medication to kill the cysts they make from die off. It's a complicated disease. Hope that helps.

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  19. Thank you for the well thought out article. And for the Kubler Ros quote. I keep meaning to read her. I guess I'm still a little bit death-averse.

    Best to you.

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  20. Wish I could meet you... I'm 19 years old, been suffering for 10 years.

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  22. There is hope for Lymes. I pray for blessings or recovery and health for such a terrible disease. http://www.raindroptraining.com/messenger/v10n3.html

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  23. Thank you for writing a very detailed and correct article. When I was finally diagnosed in 1998 after many years of being misdiagnosed, I had already had long term chronic Lyme Disease. They say I was born with it. I did have to travel 5 hours evey month for 2 years, had a nurse come 2x a week for 2 years. I had a port put in for IV antibiotics I was on Rosephine and many other medications. The problem with misdiagnosis, I was in Texas when my immune system finally gave out, but I was born in New Haven Connecticut . Texas at the time isn't a tick lyme state now it has the line star tick. But again, I didn't get mine from a tick and my sister also has Lyme. I will tell all of you this, family at first doesn't understand. While we go through our herx, I prayed God please give me CANCER it has to be better then what I am going through. I say that because the family doubts you, and makes you feel guilty and it is us who are going through this terrible disease. But I now see that I am better, the brain fogs, the leg pains, migraines, the numb feet, numb hands, weird eye tumor's, etc, it will stop, you have to keep going. Take it one day at a time. If you are like I was you probably lost a sense of time any way. This article is perfectly written. My doctor who had Lymes warned me my children had Lyme disease and he was correct. But the CDC at the time said no! But my kids, they do have lyme... Because I was infected with Lyme when they were inside of me. Dr. Harvey of Houston proved this by using me and others as research. He has since passed but because of him, I am well. I do have some pain issues, but with eating and stretching, working out I try and think positive. For you with young chikdren please keep going.... Don't stop until they have no rashes, no pain, bc if my mom would have done what your doing, I never would have had 15 years of my life in pain. I too acted like I was fine. People would say, I never new you were sick? Thanks for hitting every point so well. Good luck to you all. There are many people with this and never know because doctors do not understand the testing and diagnosis.

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    1. Hi. Pamela. Quick question. You said that you didn't catch lyme from a tick. I thought that was the only way to get it.

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  24. Thank you for this. I've shared it in my fb wall and tagged many family members in hopes they will read it & understand some more (they are trying already and this means so much). My 16 yr old son has late stage neuroborreliosis (Lyme in the brain) and this describes his struggles very well.

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  25. Thanks so much!!!! I was able to share this with my friends and close people in my life!!!! thanks because you explained it perfectly :)

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  26. Your post is right on! Thanks so much for posting this!

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  27. You hit the nail on the head with all of your points. I have been struggling to communicate my situation to my friends/family and I used your link to help explain to them what it is like from my perspective. Beautifully written. It can be a very lonely place to be and it's comforting to know we are not alone...

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  28. No, my doctors in Texas at the time had told me if your pregnant you can pass the lyme spirochete to your unborn child. I had been misdiagnosed since I myself was a young child, I was born in New Haven, Connericut and my sisters also showed signs. My son was tested after I had been diagnosed and he too is positive and still has a positive test. He also has Crones disease and showed signs of brain issues. I have brain damage, or memory issues with time. Yes if you look at the Cdc site it will finally say you can get Lyme from your mom if she has an active case of Lyme. I hope this helps. I don't believe I will ever truly be over the damage it did to my family. The best thing anyone can do for you, is believe your not feeling well, no matter what you know your body, Lyme is hard to treat, the symptoms are auto immune and antibiotics make you sicker but will eventually make you better. 30 days are not enough as the bacteria comes out of your tissue and I to your blood every 4-6 weeks and this is the only time you can Kill IT! But no one knows when it will be in your blood so the IV worked for me on a daily basis for 2 years and I could tell personally when the suckers were there, because my body broke out in shingles, or is have some tumor show up in my eye, body shuts down. But then it was worth it.

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  29. http://www.springboard4health.com/notebook/health_lyme_disease.html
    I don't know where anyone is located. But, my doctor has since passed, however the practice is still there. Many people traveled to him as I drove 5/12 hours myself. He saved my life, he believed me. Please do your research. Also there is a lab that I sent my sons blood too through his pediatrician. It's in New Jersey. I genex lab. I'll give you the link as well. It has SO MUCH INFO! There are so many strains of Lyme, borealis, Erichliosis and many co infections. Even doctors who specialize in immune problems don't really know Lyme. You have to find a Lyme Doctor. And might have to go out of state. I saw Hamid Moayad, D.O. and he diagnosed me in Dallas, Texas. But I was so afraid and so sick that what all he told me scared me. I found Dr. Harvey very much like this thru a chat sight on Aol back in 1999. A girl told me to get help or if get worse. I was scared, she saved me. I hope someone here will look at lymesnet.org along with this post the first link has many research Doctors and most have Lyme. Best wishes and good health.

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  30. Our 15 year old daughter we believe has lyme. Probably for the past 3 years... but it now exhausts her so much she can't even get out of bed. We are looking for doctors and treatment and praying it's not too late. Thank you for this blog... I have shared it with everyone around us. Prayers to each of you here... and my daughter, too. God Bless.

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  31. PERMANENT CURE TO LYMES DISEASE: My brother was infected by a lyme disease for 10 years, it started with Rash, Fever, Fatigue and Head ache, It then later worsened (Chronic). I have tried many treatment suggested by the Guru which include Antibiotics, and more other medicine prescribed but all to no avail. Lately I was directed to a Doctor called William, who provided solution to the problem. Do not be discourage, it is a permanent treatment/cure to Lyme Disease, Contact him with this email for more info: (drwilly37@ gmail. com)

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