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Lyme Disease/I Think I may Have Lyme.

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QUESTION: Hello, I would like to tell my story as brief as possible. I live in West Tennessee which is considered to not be a "lyme infested state".
9/2010 I scratched a tick off of my neck. It was unlike the normal ticks we have around here. Tiny tick. I have always heard that the tiny ticks are what makes you get Lyme. A couple of days went by and felt bad and also the bite site was swelling. I went to the doctor. She said I had the 'bulls eye rash' and gave me antibiotics for a couple of weeks. This tick bite was in my hairline in back of my neck. Before the two weeks were up, I scratched another tick off (same kind) of the back of my knee. At this time I was riding my horses quite a bit, out and about in the barn etc. Anyway, I did not go to the doctor and thought that the antibiotics would take care of that tick bite too.

I will say that the original bite has not bothered me since then. But the bite at the back of my knee will itch and swell like a mosquito bite maybe two or three times a month since I received the bite.

I am 59 so really, I can't tell you when the first symptom appeared. When you go through menopause, all kinds of weird aches and pains arise. Also mood swings and every thing else.

About this past Thanksgiving, I woke up with a pain in my neck and thought I had slept on it wrong and got a 'crick' in my neck. Next morning it was gone. The next morning, I had a pain in my hip and leg. I couldn't raise my leg more than a couple of inches. The pain was the same as what was in my neck. It too went away by the next morning. A day or two passed and the pain went into my shoulder. Could not move my arm very much. It too went away the next morning. Then a day or two later, it was in my hand. Terrible pain. Advil wouldn't touch it. It took about two days to get rid of that. A day went by and the pain went back into my shoulder, same shoulder. Next morning it was gone. Day or two later, back in my hand and wrist. Same hand. A couple of days later it was gone and it went back into my shoulder. Back in my hand. A couple of good weeks went back and it would hit different places but the pain was not bad, but I could tell it was there. Another week went by and Now it is back in my shoulder again.

IN the meantime, Back about last spring, I had problems with my ear. I went to two doctors. Both said I had fluid in my ears. The last doctor put a tube in it and it is better. I had gotten so bad I couldn't hear out of it. I can now hear out of it, but it still isn't right, Rings, hurts, a few times a little dizzy for a second or two.

Also, I keep a slight sore throat all the time. I figured it was the cigarette gum I chew all the time. (I quit smoking about two years ago and I still chew the gum) I have also had a steady weight gain, which I blamed on quitting smoking. But I watch what I eat and it still a slow gain.

I went to the doctor and he took blood tests. They said I tested extremely high on Rheumatoid Arthritis and also a c REactive Protein Cardiac test. I have pressure in my heart area especially when I excercise. It feels kind of like a cold type pressure, like when you have a chest cold. Not sure what that is. They say I am at high risk for heart disease. Also a Western Blot showed that I didn't have Lyme.This is what I read on my test results: Lyme IgG/IgM Ab Lyme Ab Interp.. EIA Lyme Disease Ab. Quaint, IgM .


I ordered a test kit from a lab called Igenex. I have been reading up on Lyme. I thougt I would get tested for that. In the meantime, I have an appointment with an Arthritis doctor.

What do these symptoms sound like to you? I know it sounds like Lyme to me.

My symptoms do not sound as bad as some of the others I have read about. And since my location is not considered a Lyme locale, it makes me wonder if I do have Lyme. And I am not sure about many of the other symptoms I have had that could be related. Menopause is a bad time to figure out which symptoms would be normal menopausal symptoms and which ones aren't.
I would appreciate any comments or suggestions.

Sincerely,
Carol

ANSWER: Dear Carol, first I would like to give you my sincerest apologies for the delay in writing you back. The trouble with being in my position of answering letters about Lyme is that I have to deal with my own symptoms sometimes and if I experience a "flare up" of my own, it seems like everything gets pushed back and I have to struggle against falling behind so much! But the thing is, with most people who HAVE Lyme, they completely understand what that's like - we live it all the time, so usually most people understand when I have to cancel my plans, reschedule, etc etc, even my "non Lyme" friends have gotten used to it but they understand which is the most important part!

So, on to your symptoms. Every single symptom that you mentioned is one that I have dealt with. And in addition, you sound EXACTLY like some of the thousands of letters and stories I've heard from other people who have been infected with borrelia burgdorferi, the bacteria transmitted by ticks (baby aka "nympth stage" ticks as well as adult). The problem though, is that in just the last few days, they have clinically confirmed the existence of a new STRAIN of a Tick Borne Disease which has all the symptoms of Lyme. (See: http://www.underourskin.com/news/discovery-new-lyme-strains-invalidates-current-)
In fact there have already been numerous strains of Lyme in the United States, so when they say that there is "No Lyme in certain areas of the country" well, they might be right that there is not borrelia burgdorferi, however, the tests aren't designed to test you for other strains of Lyme, and we haven't even mentioned the co-infections that ticks harbor along with the other bacteria: Bartonella, Babesia, Ehrlichia, etc. It can get quite confusing and now you can see why going to a local doctor and having them do the basic Western Blot with outdated information is most likely going to give you a false negative.

I'm SO glad that you are going to be tested thru Igenex - they are one of the top Lyme labs in the country and they run a much more sensitive and comprehensive test. I too tested negative TWICE in the beginning, even though I was exhibiting all the clinical signs of Lyme Disease. But because I didn't know better, I trusted the doctors and kept trying to go from doctor to doctor to figure out why I was so sick. Ironically, I was visiting my friends horse farm in Virginia where public health officials ARE considering it an epidemic and Tennessee is NOT so far away! So if anyone tells you that there is no Lyme in your area, ask them if they have checked with the local veterinarians. If you go to any vet especially in the states around New England, Maryland, Virginia, Tennessee, they will ALL tell you that they are regularly treating dogs AND horses for Lyme.

I know how frustrating it is to be at your age because we don't know if a certain symptom is related to menopause or is it Lyme. But menopause would NOT cause you to have migrating joint pain like that and the fact that you HAD a doctor tell you that you had the Bullseye is a CLEAR indicator that you HAVE been infected with the Lyme virus and possibly other co-infections that you don't know about.

I would like you to read this guide by Dr. Burrascano - one of the nations top Lyme doctors. Pay attention to page 9 and see how many symptoms you have experienced. There is a lot of really good information in this Treatment Guide and in fact, many Lyme Literate doctors throughout the country have used it as a guide. It is at:  http://www.lymenet.org/BurrGuide200810.pdf

The thing that concerns me the most is that I have many Lyme patient friends who have had Lyme carditis (where the bacteria can cause heart problems) - here is an article I just read recently which I thought was interesting (in the NY Times) http://well.blogs.nytimes.com/2012/08/10/think-like-a-doctor-a-peculiar-heartbea

I think it's GREAT that you are going to be tested thru Igenex (that's where I got my tests done as well) but you NEED a Lyme Literate Doctor in your area that you can talk to. Unfortunately I visited several rhematologists about my Lyme arthritis and a neurologist about my Lyme neuropathy but they were basically useless.

If you go to: www.lymenet.org and click on FLASH DISCUSSIONs - it will take you to a page where you can ask for any LLMDs in your area. If you still encounter difficulty, then write me back and I'll try and help you find a trained Lyme doctor.

I'd also encourage you to watch the film "Under Our Skin" - you can watch it thru Netflix and may even be able to watch it online in other places. It is all about the Lyme epidemic and will answer a LOT of questions for you. There are also a few books which I have found very helpful: One is Healing Lyme by Stephen Buhner who uses a naturopathic approach (can be combined with antibiotic therapy) and also a new book by a woman who went thru five years of trying to figure out why she was so sick - it's called "Out of the Woods" by Katina Makris and it's a very inspiring book. I could relate so much to what she wrote about.

Trust your body - that's one thing I've learned. I would have all these crazy symptoms and if a doctor said there was nothing wrong with me because the tests came up normal - well that still doesn't EXPLAIN why I'm experiencing these symptoms! Ughh - it can be so frustrating! But know that there are Millions of other people just like you who are going through the same thing and the answer is to educate yourself about Lyme as MUCH as you can.

I hope I've helped, at least for now and I wish you all the best in determining what has been causing your symptoms.
My very best,
Bonni

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

QUESTION: Hello Bonnie,
I have been on FlashLyme quite a bit lately.

I think I have found a doctor in Missouri, I hope I can mention his name...It is Dr. Charles Crist in Columbia Mo.

Bad thing is, my appointment is April 9. My symptoms are really going crazy now. They are not in one place at a time, it is now just about all over and it is muscle pain. I think my ears are part of this Lyme deal also.

I have been told about the salt/cprotocol. I have ordered it and thought that I would try it until April 9. If I don't get any relief, I have no idea what to do then.

Do you know anything about Dr. Crist?

Thank you so much for your answer!
Carol

Answer
Carol Ann - Am so glad you wrote me back. I'm happy to talk to you more, but because you mentioned your doctor's name, I'd like to ask you to go back to your original post and change it from PUBLIC to PRIVATE. I tried everything I could to do it on my end, but can't! So I think you have to do it from your end. Once you change it to PRIVATE, then we can talk in more detail! And if you could send another post when you've done this, it will alert me to check this site. Thank you so much!
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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