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rasputin26
Regular Member


Date Joined Aug 2010
Total Posts : 30
   Posted 8/11/2010 8:57 AM (GMT -7)   
Hi, My name is Kayla and I am new to this group. I was recently diagnosed clinically (still waiting on test results) diagnosed to have lyme. It started when me and my family was hiking in the forest area known around here as "Bankhead". I was a local photographer. I had started making money, my pictures was being published in magazines and being used for marketing in the area as well as the usual portrait work. On Fathers Day 2008 we went for a hike and we ended up being in a "nest". We were covered in ticks. They was dropping out of trees, from the brush, etc. We had about 20-30 each. To make it worse we kinda got lost in the middle of the path we went down. Needless to say at that time I was very misinformed about ticks and what they could do. At the end of 2008 I started having really bad neck problems. I went to a spine and nero and was told they could find nothing. Gave me muscle relaxers that I couldn't take because they made me drowsy and I had two kids that I couldn't sleep all day. Not long after this I started having REALLy bad fatigue, muscle pain, eye and muscle twitching, light sensitivity, sleep disturbances, excessive crying, stiff left knee and pain etc and my regular physician said it was probably the kids, depression, being 20lbs overweight, etc. This went on for about 9 months and she refereed me to a Rhematologist who immediately said "Fibromyalgia". I did the medication and new something wasn't right. I did some research and everything kept coming to Lyme. It made sense. I went back to my regular physician and did the Elsa and it was negative. I kept complaining and she ordered an MRI, chest X-ray, ultrasound of my ovaries, EchoCardiogram on top of testing for Lupus, Mono, arthritis etc and sent me to have my eyes tested. I have photo phobia in both eyes and couldn't find anything else. I called her office again and said "I'm not getting any better on any of these medicines. Can you order me a Western Blot because I think I have Lyme." Well, they didn't like this and said "Your symptoms are up to your Rhematologist to treat!" So I contacted LDA and they told me about a Dr in TN. It took 2 1/2 months to get into see him. I had recently went back to my regular physician for blood work because I have high cholesterol. Before I was ever seen by her, she set up an appt to a neuro. Finally, I seen my LLMD in TN and told me I had all the signs and symptoms and was started on: Doxycycline 200 mg and after 2 weeks go to 400mg, 4 doses of nystatin daily along with natural supplements. I had my blood taken and sent to IGeneX and I don't go back till September 3. My Dr. said even if the test came back negative he still felt very comfortably diagnosing me with Lyme.

I still have a hard time with family, friends and Dr's around here that Lyme doesn't exist in Alabama. People make me feel like something is wrong with me like I am crazy.

I would love to hear your stories about how you was diagnosed, your symptoms and how you are being medicated. I have been on my medicine for a week and 2 days and I'm very nervous about what is yet to come. The neck pain is already coming back along with severe fatigue. The muscle twitching has increased and is about to drive me crazy. All day all over my body. It really bothers me when it happens to my left eye. Anyone else have this?

Thank you very much for reading this long message and can't wait to hear all of your stories as well.

Kayla

GWB
Veteran Member


Date Joined Jul 2005
Total Posts : 570
   Posted 8/11/2010 9:56 AM (GMT -7)   
Kaylan,

So sorry to hear about your unfortunate encounter with ticks. I would venture to say you do indeed have Lyme Disease. I don't have much time so I'm only going to say the most important thing I have time to tell you right now. First of all, doctors in almost every state will tell you lyme doesn't exist in their state. It's hogwash. They're ignorant, in denial, or both.

Here's my advice, see a LLMD immediately. No one else is going to be able to adequately diagnose or treat you other than a LLMD (or LLND). Two weeks of abx, or even a few weeks of abx, isn't going to cut it. This is a disease, that if treated promptly, and from experienced LLMD', you can recover from. Sadly, too many people waste time with their GP or other "specialists" who tell them it's not lyme, it's not in our state, it's easily treatable, etc.

Read the threads here from people like you who came here one or two years ago and then came back two or three years later and said they wish they had listened to us. Once this disease starts spreading in your body, it's war. It's one of the most difficult diseases to get rid of when it's not treated immediately by a qualified LLMD. The ramifications of not getting appropriate and immediate treatment can be devastating.

To get an idea of what I'm talking about, go read this recent thread as all of the answers to your questions apply to you as much as they do Eric, who started the thread. http://www.healingwell.com/community/default.aspx?f=30&m=1872492

You've come to the right place. We are here to help and support you. Your doctors mean well, but they really don't have the qualifications or experience to treat this disease. Please, for the sake of your health, and your family--see and LLMD asap!

Gotta run!

Gary

fluffylizard
New Member


Date Joined Aug 2010
Total Posts : 10
   Posted 8/11/2010 9:58 AM (GMT -7)   
Oh yeah. Been there done ALL of that. Unfortunately the general medical community does not treat Lyme as a serious disease, and even if you do test positive, the standard round of three weeks of doxy won't do much of anything if you've had it for a while. In my personal opinion, Fibromyalgia is just a cop out doctors (especially rheumatologists) use when they can't figure out what's really wrong with you. And when test after test shows up negative, most doctors, instead of trying to find the real cause of the pain, will just say that you are faking for attention, or that the pain is all in your head. I'm glad you've found a good Lyme doc, and I hope that your recovery is speedy.
Good luck,
Jenn
Infected: 4/08
Diagnosed: 10/08
Cured: Ummmm...

Simela
Veteran Member


Date Joined Aug 2010
Total Posts : 552
   Posted 8/11/2010 10:09 AM (GMT -7)   
Sorry you have to be here! Did you ever get the rash? If you did, that is enough proof you have Lyme disease. Start here: read

"New To Lyme?.......Start here!" on this forum--the very first topic.

You will find a lot of info there that will help you. Our stories, are all over the forum! I started abx yesterday, and I started a new thread here about it. Gary, Denise, and Rhonda, and many others, are great, they have great advice, so you can read what they've said. There is a lot of good info here. Also, you can read up on lymenet.com
Here is a link to an article posted there:

http://www2.lymenet.org/domino/file.nsf/UID/guidelines

A lot of people are posting very good info and links, I know it is hard, but read as much as you can.

Good luck and keep us posted!

Willowrose
Veteran Member


Date Joined Oct 2009
Total Posts : 699
   Posted 8/11/2010 10:20 AM (GMT -7)   
Hi Rasputin and welcome. Your journey through, and battle with, the medical community is not an uncommon occurrance for people who have Lyme and coinfections. I am glad you found a LLMD and that you are in the process of being tested and treated. Although I do not have the twitching, my symptoms are similar to yours. I, too, was diagnosed with fibromyalgia (and a litany of other things) before finally being diagnosed correctly with Lyme and two coinfections. If your LLMD has not already done so, once your WB test results are back, and if your symptoms warrant, s/he will probably want to test for other infections that can be transmitted by ticks. Most everyone I know and know of with Lyme also has at least one of these. It is important to have the coinfections treated because their existence impedes successful Lyme treatment.

Waiting is so difficult, I know. I hope you are feeling better soon and wish you luck with your doctor's visit on September 3. Maybe, if the test results come in before that, you will be able to get the results. That's what happened for me. That allowed my LLMD to start me on treatment for one of the coinfections before my next visit. If you are interested in getting things going as quickly as possible, you might want to call your LLMD's office to see if that is possible.

Rose
I have Lyme; it doesn't have me.

Traveler
Forum Moderator


Date Joined May 2007
Total Posts : 35855
   Posted 8/11/2010 10:50 AM (GMT -7)   
Hi rasputin26!!
Welcome to our forum!!!! I am really sorry that you have need to be here, but you've come to a good place!! I'm sure you will find the people here to be compassionate, caring & helpful.

Going to the LDA & getting a referral was a really great choice!!! As others here have already said, there are a lot of docs out there who don't have a clue about how prevalent tick-borne diseases really are, mush less what to do, or even what tests to order, should a patient of theirs contract these illnesses. My gp, who actually believes in chronic Lyme, has no clue as to what to do about it!

I live in a small town (less than 1400 people) in Ar & get the same type of response from people as you describe. Unfortunately, people will believe a docs opinion about something like this rather than someone who is actually speaking the truth. I have gotten to the point that, although I will not shy away from the subject of tick-borne illnesses, I also try not to bring it up.

Over the years I have had twitching of about everything - even gave myself a black eye - twice, because of muscle spasms while I was asleep. Fortunately, both hubby & I have a pretty goofy sense of humor & we both got a good laugh over that!!! I do have to agree with you though about the eye twitching!! It can really get on my nerves as well. One of the best things I did to help reduce the muscle twitching was to start taking Magnesium Oxide supplements & to start taking detox baths & detox foot baths.

You might want to check with your LLMD before you start any supplements, but the detox baths are a pretty important part of reducing the number &/or severity of your symptoms from the die-off of bacteria. A lot of us "Lymies" need to help our bodies detox, because we usually have such of an overload of them. You probably already have everything you need to do a detox bath or foot bath in your home. You can find complete instructions in the thread at the top of the forum titled "New to Lyme?....Start here" - as well as a whole lot of other info!

You will also need to read as much as you can about these tick-borne infections, because you need to become your own health advocate even though you are seeing a LLMD already. From what I have seen, each person's treatment needs to be as unique as they are, as each body has it's own set of issues/weaknesses to deal with along with ridding the body of the tick-borne diseases.

I do hope you find peace along your journey to health.
Even the mightiest oak tree was once a little nut who held it's ground!!!
May we all find peace along the journey to find healing.
"Absence of proof is not proof of absence" - Dr. Edwin Masters, great LLMD & researcher -RIP
Trav

rasputin26
Regular Member


Date Joined Aug 2010
Total Posts : 30
   Posted 8/11/2010 11:03 AM (GMT -7)   
Thank you all for the information and comments.

Gary, Yes, I am very happy about finding a LLMD. He seems very knowledgeable and I think he will help make me better.

Fluffylizard, I also believe that they just threw fibro out there to give me a name of something. My Dr. has written a 3 month prescription for Doxy and Nystatin so it will be a long term treatment Plan. He also has me on LymPlus, adrenal support, b complex, and co-q-10.

Simela, I never got a rash or ring that I remember. I did have something crazy happening in my scalp that made it turn red, itchy and painful but because I have so much hair, you really couldn't tell anything. Thank you for the links, I'll be checking them out.

Willowrose, I called Igenex because the nurse said to call the number and gave me a test code. I called yesterday and they said it still had another week of testing left. He did mention that probably on the next visit in Sept that he would order the co-infections test. He said it would run about $700. Anyone know a reason why insurance wouldn't pay for this? The Dr. Office does have what they call a "Patient Portal" so you can see any labs that are pending. I am waiting on my CD-57 test and Mycoplasma pneumoniae test results to show.

Again, thank you all for your replies.

rasputin26
Regular Member


Date Joined Aug 2010
Total Posts : 30
   Posted 8/11/2010 11:10 AM (GMT -7)   
Traveler, thank you. I will be asking the Dr. about the Magnesium. I am currently reading "The Lyme Disease Solution" by Kenneth B. Singleton M.D. M.P.H. It has alot of useful info that its really making me more aware of things even the LLMD didn't mention.

Traveler
Forum Moderator


Date Joined May 2007
Total Posts : 35855
   Posted 8/11/2010 11:16 AM (GMT -7)   
You're welcome rasputin! Insurance companies don't like to pay for a whole lot of things that Lymies need, but it does depend on the company you deal with & which plan you have as to just how much they will pay for.
Even the mightiest oak tree was once a little nut who held it's ground!!!
May we all find peace along the journey to find healing.
"Absence of proof is not proof of absence" - Dr. Edwin Masters, great LLMD & researcher -RIP
Trav
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