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Lyme Disease/Lyme Sufferer...please help

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QUESTION: I am from WI and contracted Lyme Disease about 3 years ago.  My symptoms are getting progressively worse and making it very hard for me to work on a scheduled basis.  There are days that I want to cry from the muscular and joint pain, and have to work very hard to remember things long enough to function at my job.  I have strobing lights that come and go in my eyes, and even though I used to be able to type 80 words a minute with no mistakes I now have to practically type one letter at a time.  My mom says that I should "retire" and go on disability (as she and my fiance worry about me commuting 30 minutes to work, and I am simply running myself to the ground physically and mentally).  Is Lyme Disease something that it is even possible to go on disability for?  Not that I am looking for a free ride...I recently enrolled in an interior design course...but it is getting harder and harder to hold a regular job with all my twitches, brain fogs, joint pain, memory problems....what do you suggest I do? The doctors in my area are sooo not LLMD's and it is very hard to find one that will take me seriously!

Please help...Tina

ANSWER: Dear Tina, my letters usually start with "I'm so sorry it's taken me so long to get back to you. . ." and this is no exception! That's the downside to being a "Lyme Expert" on AllExperts.com and also HAVING Lyme Disease! I just went through a period of 2 and 1/2 months of feeling MUCH better due to switching to a different antibiotic which targets Bartonella, one of my co-infections, and I made the mistake of pushing myself way over the limit, resulting in a total crash. I feel like I'm 10 steps behind again. Sigh....the rollercoaster that is Lyme!

Anyway, I'm SO glad you wrote to me because I've talked with a few people in Wisconsin before who also had Lyme and were unaware that Wisconsin is one of the FASTEST growing states in the country who are reporting cases of Tick Borne Diseases (TBDs). Who would have thought?! There is so much attention given to areas such as New York and Connecticut that there are STILL Medical Doctors who tell their patients that there is no Lyme in ". . . .Insert name of state here. . . " It's quite unbelievable. All they have to do is look at the CDC reports and the evidence is there!

I have a few questions for you if you don't mind, can you tell me what your very first symptoms were and were you ever treated AT ALL with antibiotics? It's unclear when you were diagnosed and if you had received any treatment.

As far as your symptoms go, they are classic symptoms of Lyme. The muscle and joint pain, the memory/concentration issues at your job, the strobing lights in your eyes, twitches, brain fog, etc. Every single one of those are shared by millions of other Lyme sufferers.

I can understand your reluctance to go on disability. When you've lived your whole life as a healthy person with a job and normal life, the word "DISABLED" can make you feel like you're not "contributing to society" anymore. I know that I felt that way when I first realized that I HAD to apply for disability, that my illness was NOT going to go away anytime soon. I used to have a WONDERFUL job, I was a documentary filmmaker, had just gotten my Masters Degree and was the pinnacle of health. I was VERY active, and used to love taking hikes and running with my dog. I had just finished a film and went back to Virginia to take a vacation before moving to Los Angeles and "starting my career" in film. Well, funny how life just throws you a MAJOR curve ball. I was constantly in the woods, despite being in a Lyme endemic area, I just didn't know the dangers back then. I came home to California and within 2 weeks, I came down with a bad flu and everything just went downhill from there. Every symptom you mentioned, I had, and THEN some. I was working and realized that I couldn't remember certain functions of the software I'd used for 8 years. I couldn't concentrate on my projects and was forced to quit. It was DEVASTATING.

I went to about a dozen doctors over the next 8 months trying to find out what was wrong with me and all the while, I kept feeling like people thought I was just a "malingerer" or just wanted to get a "free ride" as you stated. It was pretty awful. I FINALLY got another Lyme test 8 months into the illness and found that I was positive for Lyme. I was SO happy to FINALLY find out what was causing all these strange, debiliating symptoms, and thought (very naively) that "Aha! Now I can go to the doctor and get well again!" Unfortunately, as I found out, it's just not that easy.

A year or so into my illness, I realized that this disease was draining my parents resources (here I was, an adult with a once promising career, and now my parents had to support me again. Thankfully I had an extremely supportive family! But applying for disability, although VERY humbling, was the best thing I could have ever done. It took a while, but yes, I DID qualify for disability and have been on it for about 2 and 1/2 years now? What you need is to completely focus on your RECOVERY and if that means going on disability, and quitting your job, then that might be something to think about. I personally am convinced that I WILL someday recover from this disease and finally be able to go back to work and get OFF of disability, but in the meantime, I'm just so glad that I have it. I still struggle financially, but at least I have "something".

If you could let me know a bit more about what your original symptoms were, your health before you got sick, what doctors have you seen, any treatments, etc, that would be helpful. I know that there ARE support groups and hopefully LLMDs in Wisconsin, although I'll have to look into that for you.

If you could write me back and let me know, I'll see what I can find out for you. Also if you could mark your response PRIVATE, we will be able to talk more confidentially.

I totally empathize with what you're going through, but please know that you're not alone and you'd be AMAZED at how many other Lyme patients there are in WIsconsin.

I look forward to hearing back from you!

Best, Bonni

P.S. In the meantime, I'd like to send you a link to Dr. Burrascano's Guidelines which many LLMDs base their treatments on. There is a checklist on page 9 which you should take to find out what other symptoms you've experienced that you might not have connected with a TBD. It is: http://www.lymenet.org/BurrGuide200810.pdf



---------- FOLLOW-UP ----------

QUESTION: Bonni:

I was so glad to see your response in my email today. Let me start with how this all came to be and my initial symptoms...I was bitten by a tick in my abdomin. I grew up in the Midwest and had been bitten by ticks all my life. So I pulled the tick off (the head came out along with a large chunk of skin) and I gave it no more thought. It itched and was very warm for days, then the red ring came. Classic Lyme's bullseye rash, but the tissue around it turned a very eerie white as well.  I waited another 2 weeks and finally at the prodding of my boyfriend, friends and family I went to the Doctor. The first test was negative, but they took another and that came back positive. I went through 48 days of antibiotics to treat it.  During this time I started having problems remembering things for more than a 5 sec. time frame.  I would get lost on my way to work, the grocery store or just around town and have to pull over until I could recognize my surroundings again. The joint pain started and also the sharp stabbing nerve pain. I suffered migraines before but now they were constant and much worse. I began having tremors, twitches and facial ticks. I had to go on intermittent FMLA and was finally let go from my job. I stayed home for about 6 months, struggling with symptoms and extreme chronic fatigue.  I lost my insurance and had no income. Financially I was ok - due to a loving boyfriend with a good job, but I had my own bills to pay. I started feeling better - so being a Midwest woman - taught if you can get out of bed you can work - I went back to the workforce. I noticed the more hours I worked the worse my symptoms got. I found a job I thought would be less stressful (as I noticed that when I become stressed and worn out things got progressively worse). Now I am struggling with even more muscle and joint pain, mood swings and joint and nerve pain. Some days it is so bad it makes me cry all the way to work. I need the health insurance and bit of income from work, but realize that it is just making me sicker. How long did it take you to get your disability processed? I am told if I am working I cannot apply - but I cannot quit working unless I know I will have some form of insurance and little bit of income to fall back on. I have been going to a chiropractor and she has released me from her care as she said her treatment is not making things better. What do I do? Where do I turn...I used to be healthy and active and now it takes all I have to get up in the mornings....
Tina

Answer
Hi Tina, your story sounds painfully familiar to my own story as well as hundreds of other Lyme Disease patients I've talked to. I think I can help give you some good recommendations, but I'd like to talk to you more privately. Can you send me an email to leahpuppy31 AT hotmail.com?  (Obviously use the @ sign for "AND" - I have to do this to avoid the autobots!)

I look forward to hearing from you! If you don't hear back from me via email within 5 days, please write me back here, and I'll double check to make sure I received your email. So sorry you've had to deal with this, but in your case, I DO believe that I can give you some good suggestions about how to proceed - I have a lot of experience in that area!

All my best,
Bonni  

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Bonni

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I contracted Lyme Disease while on hiking trip in Virginia almost 3 years ago. I returned to San Diego and within 3 weeks came down with a terrible "flu-like" illness. During that time, I developed some strange rashes on my fingers and the palm of my hand. I also had a giant melon size purple "bruise" on my left thigh which may or may not have been a bullseye - but I didn't even know that was back then. A week later, I went to the store and stopped right outside the entrance. I realized that I had completely forgotten WHY I was there and it was the most scary, unsettling feeling I've ever had. That was the beginning of my strange cognitive and neuro issues I would have for the next 2 and 1/2 years. I had previously been an extremely active person - running up to 4 miles a day and hiking a few times a week. All of a sudden, I was so tired I couldn't get out of bed and my legs became weaker and weaker. At first I thought I was anemic, and when I went to a clinic, they said you probably have mono even though you aren't testing positive. I began to get fevers, night sweats, sleep disturbances, abdominal pain, and horrible nausea. Within 6 months I was developing severe arthritis in every joint in my body and THEN...the worst. . . nerve pain developing in my arms and legs. It was horrific pain. It took 7 months and a dozen doctors to diagnose me with Lyme, and since then, my entire world has been turned upside down! I have had to learn everything I could about Lyme Disease since I live in San Diego and we only have FOUR Lyme Literate doctors in this city. I am a member of several Lyme support groups and have become very active in spreading awareness about Lyme Disease and helping people get the right treatment they need. I decided to join up as an Expert, since I saw there were currently no "Lyme experts" listed at this time. I can answer most questions about Lyme - most importantly, how to instruct people as to WHERE to get help, answers, resources, etc.

Experience

I have lived with Lyme Disease for almost 3 years now (in January of 2013) and have had to educate myself because of the appalling lack of (correct) information about this disease. There is so much misinformation about Lyme, that I took it upon myself to read every book, article and studies available and educate myself. I'm a member of several Lyme groups and have learned so much by listening to other patients about their experiences and treatments. Thankfully I now have a wonderful LLMD (Lyme Literate MD) and am finally getting the treatment that I need. I've worked with dozens of other Lyme patients in helping them get the proper information and providing them with the resources they need to find doctors, learn about their options for treatments and help them find local support groups in their area. It saddens me when well meaning doctors tell their patients that they should be CURED after 3 weeks of antibiotics and yet these same patients are still suffering years later because they still have large bacterial loads in their body that are causing symptoms like fatigue, brain fog, nausea, weight loss/gain, sinus issues, muscle weakness and sometimes lack of mobility, nerve pain, joint pain, etc. - the list goes on and on. We need doctors to come together and realize that the past guidelines are NOT effective and they need to take their patients seriously rather than suggest that maybe it's "all in their head" (which happens more often than you'd think!) I am now unable to walk without a cane or walker (depending on how bad my legs are!), I continue to have peripheral neuropathy in both arms and legs, brain fog and lack of focus/concentration (is maddening!), fatigue, joint pain, nausea, headaches, sinus issues. . .the list goes on. But I'm hopeful that I'm on the right track for treatment (Finally!) and am optimistic that SOMEDAY, I WILL be cured! :)

Organizations
Local and National Lyme Groups including CALDA (California Lyme Disease Association) Southern California Lyme Group MD Junction Lyme Group

Publications
I have a blog called http://sandiegolymer.blogspot.com/ which I definitely need to update since my last post, but it DOES have a LOT of useful links and information!

Education/Credentials
I have a Masters Degree in Film and Television - no medical degree here, but honestly I feel like I know more now than most (non-Lyme) doctors in the country.

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