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Old 07-31-2013, 01:43 PM   #1
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Possible Lyme? Confused.

So, long story and symptoms over last 5 months....
(And I am 30 and a female)
March: left side of face went numb, no stroke. Next day, left side of body went numb-ish. Could still feel touch, but like coming off Novocain. Went away after week. Dr. Ordered PT. then I had a week of intense chest wall pressure. Back to Dr. No heart problems. Pressure went away.

April: intense pain in back that would seem to move around. Hard to sleep. Inflammation in back. Joint pain especially in left knee and hands. Cracking bones and intense muscle/skeletal fatigue and pain. Intense headaches that come and go. Tingling in arms and legs.

May: sent to Rheumatologist. All blood work came back normal. MRI showed a slight degeneration of my L5, but nothing else. Ruled out MS and Lupus. They diagnosed me with Fibromyalgia and gave me Vicodin and muscle relaxers. Still having muscle fatigue, back pain, and headaches.

June: pain in back and shooting pain down left leg. Swollen left side, esp ankle, foot, and knee. Muscle spasms all over. Swollen throat. Fevers off and on. Loss of appetite. Fatigue. Swollen fingers. Depression and anxiety. Insomnia. Veins popping out of hands and feet and swelling a ton. When I go out in hot weather it is worse. I feel like I have the flu.

July: Epstein-Barr virus came back positive. Levels very high. Lyme disease (western blot) came back negative. Blood pressure really low for me at 118/64. Blurry vision, dental pain, very depressed, and waves of fatigue.

So, I know all that sounds bizarre, but those are my symptoms. I keep getting told by Dr.'s that I live in Colorado and it is not a tick disease state. I lovingly tell them that I go to Iowa every year and I bet that even in Colorado there are cases of Lyme. After reading other posts on Lyme, I am wondering if it is what I have. I would appreciate any and all insight anyone has.

Thank you,
Jane

 
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Old 07-31-2013, 07:04 PM   #2
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Re: Possible Lyme? Confused.

Jane:
It really sounds like you have lyme disease. There is a company in California called Igenix. they are the best lyme lab out there. Call them. They will send you a kit with instructions. You get your blood drawn by your dr or you get a script and go to a lab with the kit. Then you send it back to them. All the other labs are no good. Try it. Good luck and feel better. Lala

 
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Old 08-01-2013, 02:31 PM   #3
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Re: Possible Lyme? Confused.

Thanks LaLa, I appreciate your insight. I have an appointment with a LLMD in Oct., but I am first on waiting list for a cancellation. Do you think I should go ahead and get the kit from Igenex now or wait until I get tested by the LLMD?Apparently they use that same lab.

 
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Old 08-01-2013, 06:33 PM   #4
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Re: Possible Lyme? Confused.

Jane: It is up to you. If I were you I would be anxious to get results. Do you have a dr that would write the script? You will have to pay the same amount of money for the testing whether it be through your LLMD or not. It probably would be better to have the results when you see the dr. If he wants to tests for co-infection he can do that later. The basic test costs about $200. That is my opinion. lala

 
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Old 08-03-2013, 07:19 PM   #5
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Re: Possible Lyme? Confused.

Yes, I am anxious to get the results. I went ahead and looked at Igenex's website. I am a bit confused about co-infections. Do people have to first have Lyme before any other co-infection is detected? Does that make sense? I mean can you just have babesia without having Lyme? Also, do you know if Lyme is secreted through breast milk? My 1 year old daughter is exhibiting signs of Lyme too and I think she either got it from nursing or, if I have had it this long, from being in the womb. This is all getting so crazy, but I really feel like I am finally on the right track with this knowledge of Lyme. I so appreciate your insight and comments LaLa.

 
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Old 08-05-2013, 09:45 PM   #6
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Thumbs up Re: Possible Lyme? Confused.

I have most of the symptoms you speak of and have been going through them for the last 3 years, but at a much slower rate. I was diagnosed with Lyme last week. I suspect that I might have a co-infection too, but I am waiting to see my doctor on Wednesday for further blood work to find out. I know with all my research in the last few days that you can pass on the Lyme in utero to your baby before it's born, but I don't know about through breast milk. I would definitely get yourself and the baby tested. My doctor's did the same thing to me in January that yours did in the month of May. Rheumatologist diagnosed me with fibromyalgia and osteoarthritis and gave me meds. I kept having new symptoms tho that really didn't fit with fibro, so I went to a neurologist a few weeks ago (7 months after fibro diagnosis) and he did a Lyme test, which was positive. I have heard of people not testing positive the first time, so definitely get retested. Can't hurt. They say the same thing about where I live, in the State of Alabama, that it's not a Lyme Disease state, yet I have heard of lots of people that live here that have had it, or have it. We all travel and can get it somewhere else, not just where we live. Not to mention that infected ticks can be transported on animals and end up in other states as well. There isn't a state that doesn't have cases of Lyme from what my research has taught me. It's just that they don't want to admit it. Good luck!
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Old 08-07-2013, 02:59 PM   #7
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Re: Possible Lyme? Confused.

Al Lymie,
Thanks for your thoughts. It is encouraging to hear that you have had similar symptoms. It is nice to feel like I am not really going crazy or that it is not, as the doctors say, "just stress and anxiety." I just got a call from the LLMD and they can get me in in 2 weeks! I am so thankful. I asked them on the phone if Lyme can be transmitted through breast milk and they said yes. So, that is concerning. I was also reading more about co-infections and saw that the Epstein-Barr virus is a common co-infection. My blood test revealed that I have had the EBV in the last 3 to 12 months. So....it is probable that I got bitten within that time frame. I tell you this, just cause it might help you with your co-infection questions. I am sorry that you had been having symptoms for 3 years! What did it do for you mentally to just have a diagnosis? Are you on meds now? Feeling better?
Thanks,
Jane

 
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Old 08-13-2013, 06:36 AM   #8
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Re: Possible Lyme? Confused.

Jane, it has been an up and down emotional roller coaster to find out. I was happy to have something concrete to explain my symptoms and made me feel better and that I wasn't crazy, and hopeful that I can get treatment and be "cured" ... but after doing research on it I see that there may not be any "cure" for me. Since it appears I have had it a long time it may mean that I never get rid of it and the long term treatment I am in favor of might put us in a financial bind because insurance may not cover all that I need. I am having a hard time finding a doctor to treat me and am going to have to drive 3 hrs to a specialist who will treat me. So I see a lot of expenses in our future that stresses me, and stress only makes me feel worse. So I am not on meds yet, was just diagnosed a few weeks ago and want to let a specialist LLMD start my meds. Hopefully that will be soon, but not soon enough.
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Old 08-13-2013, 08:42 AM   #9
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Re: Possible Lyme? Confused.

Al
I feel the same way as you. i have already spent thousands of dollars just to find out years later that i have lyme. And even at that, I am not 100% sure. My testing from Igenix was not a positive test. I had 4 IND's and 2 positives. In the lyme world that is a positive. I went to a LLMD dr that was about 1 1/2 hours away from me because his rates were cheaper then the ones closer. I was being treated for several months. Felt slightly better, maybe. Then i had another hardship and i stopped treatment. I was getting cortisone injections on my left foot for a neuroma. After 7 injections, the podiatrist said, "ok this is not working" let try and alcohol injection (which is supposed to deaden the nerve), no guarantee. I developed an infection on the top of the 2nd and 3rd toes. It is so bad, it became a big wound. I needed wound care and infectious disease drs to treat this. Nothing has helped so far. It is now an infection in the tendon and bursa. I might need to have intravenous abx now. Going to ID dr. today. Also it was recommended that i do the hyperbaric chamber. The hyperbaric chamber sometimes can help lyme. My insurance covers it but I have to pay a co-pay of $75 per visit. The protocol is 5 days a week for at least 3 weeks. If not 4 weeks. It is going to cost a small fortune and take up a lot of my time. I wonder if this infection did not heal because of Lyme Disease. So the nightmare continues. This is making me extremely depressed. Also, this was a result of a podiatrist who gave me too many cortisone shots in too short of a time. He gave me 7 shots in a three months period. I found out later that this is a no no. So the saga continues. This LD has ruined my life. I am functional, but the quality of life is not the same as it was. I am probably a little off subject here, but i am just venting. I can go on and on but for the moment i will stop now.
Al; It is good that you have a result. You can do some of the natural protocols and get all the herbs and supplements through mail order. That is another option.
Emma; keep us posted on your results. Also, yes, your baby might very well have lyme. I am so sorry. That poor little thing. You must get your child tested. Good luck. LaLa

 
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Old 08-14-2013, 07:49 AM   #10
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Re: Possible Lyme? Confused.

Yes you can pass Borrelia (Lyme) and any other infection in your body to your babies, in utero and breast feeding. It is also said that this is the New STD. also blood transfusions we can get any of this from. Any insect that bites draws blood and goes host to host.

One thing that we all must do, is to be our own advocates. Knowledge is power, so read read read. You really have to look out side the box with all of this.
Short course of antibiotics is not going to do it. Maybe if you caught it right on the first day. but other than that it just keeps multiplying in you.

When you get the test kit from Igenex, call them. Tell them where you live and places you have visited. They use to help guide on what you should be tested for.
But then they also don't test for all strains of Borrelia,(lyme) there are 300 around the world. And with many people traveling, birds migrating, ect the strains are being scattered.

A LLMD will go solely on your symptoms. These test are not full proof, as Lala stated. I had many negatives, until 12 years of treatment, and FINALLY got a positive from Igenex standards.
But my doctor knew this, so just went on the bands that pulled up. I was dying..under 100 pounds, losing use of arms, mentally out there. Using a cane...you definatly don't want to go untreated for this. I now have it chronically, as many others that I know.
I have only heard of a few that have gotten it into remission. The LLMD's say to treat 3 to 4 months after symptoms go away.

Also the test always showed I had borderline babesia and never pulled up Bartonella. I had them both. Which there are many strains for the both of them too.

So the main reason to go to a Lyme specialist. Get going on the proper treatment plan.
some do alternative and have great results, I have had to do both.

Your baby shows signs, get her to a LLMD along with you, my suggestion.

Take care

Jodie


 
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Old 08-20-2013, 09:51 PM   #11
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Re: Possible Lyme? Confused.

Thanks everyone for posting. I appreciate all your comments through this challenging time. I am so sorry JoJo that you have had such a rough time. I will pray for you. You too, Al. This is a tough disease.
As an update: I went to a Lyme Dr. today. My appt was scheduled for Oct, but they got me in early due to a cancellation. Praise God!
So, it was a 2 hr appt and she clinically diagnosed me with Lyme disease. I am getting retested for Lyme and other co-infections thru Igenex, but am starting anti-biotic treatment tomorrow. Dr. said average recovery time is 2 years. wow, but i am hopeful. My daughter is also getting tested through Igenex. I will let you know what, if anything, they find. Please keep me updated on how you all are doing too!

 
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Old 08-21-2013, 06:21 PM   #12
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Re: Possible Lyme? Confused.

Glad you have found out what you have. Now you can start being treated the proper way. Everyone is different in treatment. I have been on antibiotics for 12 years this last year off and on.

Remember testing even through the best lyme labs, can still have negative results. Thank goodness you are with a LLMD now!

And prayers to you and your baby!

Jodie

 
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