Nefferdun Neurological Lyme

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Crystalmarie77
Regular Member


Date Joined Apr 2008
Total Posts : 50
   Posted 12/5/2008 12:23 PM (GMT -7)   
Hi I saw your reply to a post that said you suffered mostly nuerological symtoms from your lyme. I never knew being bitten close to the head was a contributer. I was bitten behind my ear and mostly have nuerological symptoms...including, numbness, tingling, i feel like my foot is dead sometimes, nightmares, anxiety...and i have had trouble breathing as of late and chest pains which my llmd thinks is just muscular but we are having checked out by a cardiologist next week to be safe : ) I was wondering if you could tell me what treatment you are getting for your nuero lyme and if you ever expierence a slightly labored breathing? Any info we can share would be very helpful and uplifting to me at this point. How long have you been treating? How long have you been ill? Thank you for your time and help.

rileydog
Regular Member


Date Joined Jul 2008
Total Posts : 49
   Posted 12/5/2008 12:29 PM (GMT -7)   
Wow, I never knew this. Mine was on my head and my neurological symptoms are by far the most difficult to deal with. I would love to know the treatment for that also.

Crystalmarie77
Regular Member


Date Joined Apr 2008
Total Posts : 50
   Posted 12/5/2008 12:33 PM (GMT -7)   

I never knew this either, rileydog. Can you tell me a little about your symptoms and treatment?

 


rileydog
Regular Member


Date Joined Jul 2008
Total Posts : 49
   Posted 12/5/2008 12:44 PM (GMT -7)   
Well, I was diagnosed this year and seems I've had it since 1979. As a child my symptoms (that no one could figure out) were chest pains, bells palsey, strep throats. Symptoms changed over the years and were dealable. The past year however symptoms of confusion, bouts of severe disorientation, feeling drunk and confused, dizzy, not being able to process thoughts, or sentences, forgetting how I got places, mental exhaustion, severe fluid retention, hand swelling and numbness, numbness and 'pins and needles' in my legs, feet falling asleep for no reason, stumbling, lots of others really, but those are the ones most difficult for me to deal with.

I was treated with doxy and azithromycin at first for about 2 1/2 months but my stomach couldn't handle it. My LLMD then switched me in intramuscular steptomyacin (1 gram 2 x s per week), its a very non standard protocol but he's done years of research finding many links with mycoplasm infections and lyme, and steptomycin is the main drug for tuberculosis, a mycoplasm, so he's treating with that and isonizide. I did that for about 3 months and was doing pretty well and decided to go off ABX and do natural (supplements, acpuncture and chinese herbs). I felt great for the first month, then went downhill, fast, almost as bad as I was prior to meds at all. I'm back on the meds a month now and it's a much slower process this time. It's all very frustrating. I don't feel 100% comfortable that this is the best route for me. I have an appt at Mayo next week so we'll see if anything comes of it or if they decide to treat differently. I really feel I need IV ABX, but my LLMD does not accept insurance and I can't pay the cost out of pocket. My insurance is accepted at Mayo though so I'm hopeful that they will go that route, but I'll kinda be surprised given the issues with treatment and insurance.

What about you?

Crystalmarie77
Regular Member


Date Joined Apr 2008
Total Posts : 50
   Posted 12/5/2008 1:11 PM (GMT -7)   
I was bitten twenty years ago as well when i was eight behind my right ear. I remember my mother trying to burn the tick out and it burrowing deaper into my head and having to have it removed at the emergency room..she wasnt too smart..lol..Looking back i have had things throughout the years...thought to have mono when 13 but never could get the blood work..strep throats..modd swings..etc..but remained fairly healthy thanks to always been active and a good diet i think.  When I was 26 I went through a divorce and began to not treat myself well. Drinking and going out and not sleeping enough and crying all the time..that lasted well over a year..Last January i started having this numbness in my foot..really annoying by Febuary spread to my arm and then to my face..i finally went to urgent care and then to the emergency room. They did alot of tests and told me it was probable MS..i waited for my nuerologist appt for almost two months at the local hospital..in the mean time i rapidly started having insomia, nightmares, numbness, stumbling, memory loss, chills, pain in my hands and knees, floater in my vision...As i looked these up i did run across MS alot but i also came across lyme and remembered my bite..The doctors had never asked approached this possiblility i called and made them test me and i was positive..i started treatment in June i started with Doxy for ten days then biaxin 250 mg twice a day and bicillian intramuscular shots two times a week for four months the shots alone were 400 dollars a month. This helped alot but i couldnt afford it and since have slipped a little downhill. I was on Cfuroxime 500 mg twice a day and Biaxin 500 mg twice a day for a month and just switched to cefuroxime 500 mg tice a day and azithromycin 250 mg once a day.. I feel like i am worse than ever so i dont know what i can say about the meds...my doctor has been talking IV i wish to avoid it due to cost and harm on my body...ive always been a natural based person as well but have had no luck with every treatment ive tried my llmd is the only in oregon and she is a naturopathic doctor and acupuncturist as well...Her bed side manner is lacking though...lol

rileydog
Regular Member


Date Joined Jul 2008
Total Posts : 49
   Posted 12/5/2008 1:22 PM (GMT -7)   
Wow, where are you? You sound like my twin! After the problems as a child I was always fairly healthy too. Bouts every couple of years, but nothing I couldn't deal with. Then in 2005 I got a divorce after 12 years of marriage. Started having horrible anxiety attacks. Horrible ones. I had never had them, thought it was just the divorce. Then I started going out all the time, drinking, not taking care of myself... having more fun and energy than I had in years. Working 80 hours a week, traveling all the time, then last fall it hit me like a ton of bricks. All that you described. I too feel worse since I've began ABX than prior. I had more physical symptoms then, but they would wax and wain and I had more good days than bad. Now, my bad days far outway the good and same here, the shots alone I get are $400.00 a month, which is one reason I wanted to try the natural route. I'm such at a loss.

I also read in one of your other post that you've gained 20 lbs. Me too! This is the most I've weighed in my life and I hate it. I've always been very fit. What I've also notice is horrible water retention, and really badly in my face. And on the days I have that, my face is bloated, I've noticed my symptoms as a whole are worse.. dizziness, upset stomach, fatigue.. it's weird. Have you noticed that at all?

Crystalmarie77
Regular Member


Date Joined Apr 2008
Total Posts : 50
   Posted 12/5/2008 1:38 PM (GMT -7)   
Yes. I think we are twins! I live in Portland, Oregon now. But was bit in the south I believe in Florida or Virgina those are two places I lived when i was little. My mother passed away when i was 11 so I dont have many details just the memory and the scar. I cant beleive this hid so well in my body for so long. I often think something else must be wrong with me..how could it come on so fast..I too felt greta when i was going out all the time now i cant even have one drink for fear of the hangover that begins after the first sip..lol..Yes the weight gain was sudden within a few months..some is attributed to not being as active but it still shoulnt have came on the way it did..so im thinking that is a symptom or a side effect...they did have to put me on ativan for several months for the anxiety, nightmares, and muscle spasms and twitching...Wow I'm crying as i write this at work..we do have alot in common..it is nice to have someone to talk to. I have read that sometimes a large emotional event (like our divorce) along with not taking care of ourselves probably led to the bacteria to get growing rapidly in our body

rileydog
Regular Member


Date Joined Jul 2008
Total Posts : 49
   Posted 12/5/2008 1:43 PM (GMT -7)   
That is wild. Yes, I was put on ativan for a while for my attacks as well. And I too think there must be something more wrong with me. I question the lyme all the time... how did I live with it all these years and it turn me into a different person in the course of a year?... It's horribly depressing. Feel free to email me if you'd like. Funny, I lived in Virginia and in GA on the border of FL too, but my tick bite was on our cross country camping trip from NC to Canada when I was 9.

Are you happy now? From the divorce I mean? Sometimes I know people think I'm just depressed, but last year prior to getting so sick, I had not been happier in years. (Of course my divorce was in 05 and it took me until 07 to be happy, lol, but hey, I got there! )

Crystalmarie77
Regular Member


Date Joined Apr 2008
Total Posts : 50
   Posted 12/5/2008 1:53 PM (GMT -7)   
Yes I'm happy now...Thats how i know its not depression. We split up a year before my divorce too so it took me about 2 1/2 years but i was having alot of fun. It seems like the minute i settled down and felt comfortable being alone again is when i got sick. Just when life is and was the best it had been personally and career wise I'm sick. Do you have chest pains or trouble breathing ever? I've had chest pains all along..but the doctor thinks it muscular but lately i have had trouble breathing..like a panic attack but im not having a panic attack its just hard to breathe especially when i lay down. I made my doctor refer me to a cardiologist though and have an appointment next week to be safe. I was feeling better last month and exercising and it lasted for about a month weight training and using my elliptical at home and i didnt have any chest pain upon excertion. I've since stopped working out because i went down hill and can barely make it to work let alone exercise and the trouble breathing and chest pains are back..I'm so tired of all this..i just want a break...sometimes ill have a few good days and i'll think its over its finally over and then it comes back worse than ever or something new ive never had...ive never been a sick person like this..i am now

Crystalmarie77
Regular Member


Date Joined Apr 2008
Total Posts : 50
   Posted 12/5/2008 2:00 PM (GMT -7)   
I just see that you did say chest pains! We have so much in common...I thought i was going crazy. I havent talked to anyone on here..who matche my symptoms so perfectly..now you just have to have trouble breathing..lol

rileydog
Regular Member


Date Joined Jul 2008
Total Posts : 49
   Posted 12/5/2008 2:05 PM (GMT -7)   
I do! Lots of times I breathe so heavily, I feel as if I just can't get enough air. btw, my name is Christel. lol...

Crystalmarie77
Regular Member


Date Joined Apr 2008
Total Posts : 50
   Posted 12/5/2008 2:11 PM (GMT -7)   
Wow this just keeps getting stranger now doesn't it....I'm not sure I am allowed to post my email on here

Crystalmarie77
Regular Member


Date Joined Apr 2008
Total Posts : 50
   Posted 12/5/2008 2:16 PM (GMT -7)   
I made my email visible in My Profile..If you ever need to talk..Its my work email i'm there Monday-Friday 9-5 PST...Stop using up the how forum..lol

Crystalmarie77
Regular Member


Date Joined Apr 2008
Total Posts : 50
   Posted 12/5/2008 3:03 PM (GMT -7)   
I'm glad we found eachother and I hope we can be help eachother with information and support! Let me know how things go at the Mayo Clinic and of any new treatments you try. Since our symptoms are so similiar we might be of help to eachother with ideas and treatment plans. I'm so glad this forum brought me to someone who can understand my symptoms and pains so well. What a blessed day! Thanks again!

nefferdun
Veteran Member


Date Joined Feb 2008
Total Posts : 900
   Posted 12/5/2008 7:46 PM (GMT -7)   
Hi, I wish I could be helpful in your quest for the right treatment for neurological lyme but I do not even have a doctor that knows any more about the disease than I do. I read the treatment protocol for lyme and told him what to do. Started with 400 mg doxy a day for two months. Took a two week break and started to relapse so went to Ketek, which Burrascano said was the best for lyme if you can tolerate it. It helped a lot. That was 800mg for one month and then 400 for one month. I was having headaches every day which Ketek can cause so quit it and went on Chineese herbs - which worked for a while.

Something you should look into is your breathing problems which might be related to Babesia - causes shortness of breath.

My symptoms were terrible fatigue, headache, vertigo, ataxia, muscle spams, cramps, body aches, poor concentration, lost memory, apathetic depression, pain in lower legs, pins and needles. . . . .
I had a pain on the left side of my chest a few times.

Currently I have asked the MD to order the IGENEX tests for babesia and bartonella for me and am waiting for him to respond. I am taking cat's claw and huge amounts of vitamin C and magnesium which a homeopathic doctor gave me. I'll try rife. Maybe back to the big guns if I can find a doctor that knows what he is doing.
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