Intro and questions~

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limberlostgirl
New Member


Date Joined Nov 2008
Total Posts : 17
   Posted 11/5/2008 10:24 PM (GMT -6)   

My story starts in spring of 2001 when I found a large unusual rash on the back of my leg. My husband and i thought it must have been a bug bite, although it did not present itself like a usual bite and it stayed for a long time. A short time after the bite I ended up in the hospital with what the Dr's were calling menengitis. From there I slowly became a different person, physically and mentally. I spent the next 5 years trying to find a Dr. who could tell me what was happening. I finally was diagnosed by a neurologist as having a very progressive form of MS, although he could not figure out why some of my symptoms did not "match" MS, he told me I would be in a wheel chair within months. Making a long story shorter.....I was talking to someone about my symptoms and she said I think you need to go see this Dr. before you start any treatment for MS, and gave me the info. for a LLMD. I was more desperate than anything, feeling that the nerologist was wrong but not believing anyone could help me figure out what was happenig to me. I made an appointment with the LLMD. My symptoms at the time of that visit in October 2006,with the LLMD were~

legs heavy like weights; deep muscle ache down into the bone, I had to think about every step I took, they would give out sometimes and I had fallen a few times by this point, felt like bugs were crawling under my skin on legs (arms too) hives on both legs, hives on my back and arms (looked like open sores and itched)
I could not walk a straight line no matter how hard I tried- I would veer off. I was unsteady and needed to walk close to walls to keep me from the occasional fall, i needed a cane to keep me steady~but was too proud at that time to use one (the time would come when i had no other choice), I had unbelievable fatigue that would hit so hard all I could do was lay down and fall asleep, I could fall asleep sitting up! My arms ached the same deep muscle ache my legs had, I was dropping things, my left side of my face would "freeze" and it stung like pins and needles being shoved into it, my left eye was also "freezing" causing me a lot of trouble seeing/reading, my hands would shake, my concentration and memory were gone and I often times felt confused about details. My rash/hives itched all the time and when I was having an awful day I would stutter, lose words and not be able to complete a thought. I had dizzy spells and the back of my head felt like it was holding a brick, pleurisy and trouble breathing plaqued me.

At that first appointment, the LLMD asked about any previous bites or flu like symptoms, she smiled, hugged me and told me she knew what was happening and she was going to help me connect all the dots. From there I was tested for Lyme Disease and it came back positive with several co-infections. I started treatment on October 31 of 2006.

After 1 1/2 years on a variety of antibiotics, I had come to a great place this past summer where I had 2 months of little to no symptoms, then I had a big setback and was in a giant flare. I was told that I had babesia treatment failure. So now I am back to good days and horrid days with the occasional good week, although never getting back to what I was before 2001!

right now I am on~ Flagyl, Sufa/Trimeth, Malrone, Fluconazole and Bicilin injections. I am supposed to add Clarithomycin but I am not taking any probiotics right now so I am afraid to add another antibiotic. I could really use any suggestions to a couple of the most important, inexpesive supplements that any of you might suggest so I can add the Clarithomycin (although i am fearful of another herx) As a precaution, this past summer, my husband was tested for lymes although at the time was not having symptoms his tests came back positive! He started treatment right away. He has recently taken himself off antibiotics until we can find a reasonable supplement.

So this brings me to some Q's~

1. Does anyone know of anybody who has beaten this thing?

2. Does anyone have any ideas for probiotics that don't cost a lot of $$$ ?

3. What does it mean when someone says "they died from complications from Lyme Disease" ? I did not know that that could happen....what type of complications?

4. Has anyone else had experience with antibiotics for so long, with no "end date" in site? I guess I just want to know that I am not alone, choosing this route and that there is hope.

Thank you for taking the time to read part of my story. I am so happy to have found this site!! I feel like I still have so much to learn. I think for a long time I thought if I did not talk about it or ask questions and just took my medicine it would all go away! Yet here I am still fighting!!!


 

 


bablymers
Veteran Member


Date Joined Oct 2006
Total Posts : 1458
   Posted 11/5/2008 11:00 PM (GMT -6)   

Hi limberlostgirl!   Welcome to the forum!  I am glad you found this site because you will find it very helpful and supportive.  I do not want to overwhelm you with information, but to encourage you to continue learning at a pace that is comfortable for you.  I am so proud of you for the progress you have made and the fact that you are still fighting!!!  Congratulations!

At the top of the first page of this forum, there is a topic entitled "Newbies, Check this out".  It will have some info to get you started.  There is a lot of info on the internet, and you can read through old posts on this forum.

I will attempt to briefly give you my own opinion regarding your questions.  I am not a doctor, though.  I am sure you will learn a lot as you go along.

1) I know several people who seem to have beaten lyme---they were all treated soon after they were bitten, and their symptoms seemed to respond well to treatment.  There are others on this forum that used Dr Jernigans protocol and became well even though they had the disease for a long time.  Hopefully, they will tell you their story.  There are actually many success stories.

2) Look for probiotics that have at least 8 strains of bacteria, and as many billions (cfu's) as you can find.  Then you only have to take one pill a day instead of several.  Sometimes this makes the better brands actually turn out to be less expensive per day.  Ask around, or your doc, what brands they like.

3) Difficult subject to talk about without scaring people, but I'll try. Lyme and the coinfections can damage any tissue in the body and therefor cause many malfunctions and "issues".  Everyone's body is so different, and their response to treatments is also different, that it is hard to predict what symptoms and complications can occur--organ damage, "secondary infections", etc.  Fortunately, I think it is much more likely one will live and not die.

4)  You are not alone in this experience.  Nobody knows how long they will be in treatment.  Some think they are done, only to relapse and start again.  Just keep fighting and try to stay positive, and do what you have to do as long as it takes!  There are no "sure things" with this crazy group of illnesses----except a guarantee you will see all the extremes, a wide array of possibilities in symptoms, treatments, etc. etc.!!

I hope your return to health comes quickly and completely!!  Again, Welcome and Best wishes.   bablymers mom

 


limberlostgirl
New Member


Date Joined Nov 2008
Total Posts : 17
   Posted 11/6/2008 9:05 PM (GMT -6)   
bablymers~
thank you for the welcome and for taking time to answer my questions. It seems the longer that I have this the more
questions i have. I am so happy to find this place where there are other people like me that I can "talk" to and ask the nagging quesitons that have been following me. I appreciate your encouragement! ~limberlostgirl

king1234
Regular Member


Date Joined Nov 2006
Total Posts : 491
   Posted 11/6/2008 11:15 PM (GMT -6)   
First off sorry you are going through this. I am in limbo land and do not know whats wrong with me. Whatever is wrong its effecting my muscle, joints and nerves.
 
Secondly, that neuro was an IDIOT. Why would he think your hives/rash were part of MS?
 
Glad you got to the right dr!
----------------------------------------------------------------------
33 yr old female
 
GERD dx March 2007
Migraines with Aura
IBS
Currently no dx for:  migratory joint/bone pain, extreme joint cracking, feet buzzing/vibrating, right eye pain,mid spine soreness (like a constant bruise) fatigue and dizzy spells, bumps and indents on nails. New as of Aug-muscle twitching throughout my body. 
 
New as of Oct- DX with mild to moderate c spine stenosis and compression on spinal cord .
 
TESTS-BloodCBC,ANA,Sed rate,Lupus,RA, Vit D,Anti nuc,Calcium.TSH (seems to flucuate alot),T3 -Too many to list -all CLEAR
 
Scans/xraysUltra sound of stomach organs,Sig/colonoscopy (mid way through),MRI of head and spine, full body bone scan-ALL CLEAR
 
 
 
 
 
 

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