I've been thru the ALS ringer....and want to know some of your stories, how are you doing now, did you recover from lyme, how do you feel.
I want to know if i will get better. My life is supposed to be great and i just feel like crap, my muscles are in overdrive, loosing muscle, etc. My story is below.
I wanted to know what your story is, how are you doing now?
I have had unexplianed issus for 8 - 10 years. I have had throat issues (closing, hurting) on and off, dizzyness relating back a really long time. Lymphadnopathy, so much so that i saw a hematologist, GERD, left neck and eye pain, eye swelling and dark circles for years. REally back left neck and eye pain for years, really bad!!!!
Then, about a year ago, muscle twitches started, of course, i paniced, ALS???? Then, muscles started shriking, i lost weight. MY tongue scalloped and started reallly really hurting really badly, really badly. My left face / jaw has wasted a little, it pops and hurts really badly, My hands have shrunk, my feet have shrunk..
I have seen 5 nueros. I settled with the ALS specalist ath HOuston methodist, one of the best ALS spec in the countyr. She has with 110% certain, including a muscle biopsy from my left bicep whcih was one of the "smaller" muscles. The biopsy was completely normal...completely.
I've had 3 emg.s all mostly normal. ONe showed Nerve conduction afterdischarges.
In short, ALS was ruled out.
I've had two lyme test by IGENEX, first was ELISA and PCR negative. The WB's were both neg, but alot of IND's and +'s, almost for a postiive result.
I did 4 weeks of abx 200 mg /day doxy, then retested. ELISA came back +, WB's came back more negative, PCR's neg????
I'm puzzled.
I'm seeing the LLMD in Lousiana wednesday.
How was your issues, has it affected your muscles and how are you today?
Posted by Visual Afterimage Man (Member # 10435) on :
Jamiet,
Hello there! Glad to hear that ALS has been ruled out. It's a strange thing to say to yourself, "Good, I've only got Lyme", but if you are like me... you said it!!!!!!!!!!
I was very close to getting a diagnosis of MS which put me into an emotional tailspin. How could I have MS when I just became a new father?? OH MY GOD!
ALS must have had you spinning out of control too! Take a deep breath... Lyme is a good diagnosis opposed to ALS.
I believe that Lyme is a disease of exclusion. Thats why it takes so long for us to get proper diagnosis. The medical community tests for everything else that Lyme mimics. Some of the unfortnuate ones actually get MS diagnosis and start on immuno-suppresents. Which will make someone with Lyme much worse. I feel sick to my stomach for those folks who are being mistreated.
So your in the same boat as I... I have tested for everything else under the sun. I had a weak positive WB from Igenix.
Sorry, but I forgot in your post if you said you had an LLMD.. If not.. find one.. and get a consult. It could be the start of recovery for you!
Welcome to the board... This board is a huge factor for my recovery. Use it!!!
Posted by Visual Afterimage Man (Member # 10435) on :
By the way: 200 mg doxy isn't much of a dose. Did you feel a herx at that low of a dose???
I was on 400 mg per day.
And I'm not a doctor, but from what I've researched.. if you had a positive ELISA at anytime, you probably have Lyme.
Posted by Jamiet (Member # 11601) on :
Thanks,
Yes, i see Dr. F in Louisiana on Wednesday.
I'm just reading the sleep post. I feel like i've never slept when i wake up...hmm.
do you all have bad mornings?
I've also been sweating alot and i sweat very easily.
Posted by sixgoofykids (Member # 11141) on :
If you post your IGeneX results here, there are many who have a good understanding of what they mean. Most LLMD's consider having on Lyme specific band to be indicative of Lyme (in the presence of symptoms).
I agree that 200 mg of doxy isn't enough for Lyme ... I was taking 400 when I was on that abx. I'm glad you are getting to see an LLMD. You will feel much better after your appt.
I was about 15% of normal back in January when I started treatment. I've had Lyme for 35 years, with the last 4 being the worst as far as symptoms go.
I was the one who finally figured out it was Lyme. I was diagnosed with leaky gut, candida, lingering flu, dehydration, Somatization Disorder, fibromyalgia ... I even had one doctor back in college tell me the fatigue was from drinking too much. My most recent doctor told me it was Somatization Disorder even after my Lyme test came back CDC positive!!!
After six months of treatment, I am now about 75% on a good day and about 50% on a bad day ... so my bad days are better than my good days used to be.
My LLMD says 6-12 more months of abx, then we'll do some herbal stuff ... if needed we'll go back on abx after that.
Hang in there. Treatment is no walk in the park, but it's worth it!
Posted by Jamiet (Member # 11601) on :
1st test atIGENEX -
ELISA Titer - <1:40 - Negative WB's IGG - 30+, 34 IND, 41++, 66+ IGM - 31 IND, 39 IND All DNA PCR's neg
2nd test after 4 wks of 200 mg /day doxy and 2 week wait after
ELISA Titer - 1:80 - Positive WB's IGM - 41 IND IGG - 34 IND, 41+ All DNA PCR's Negative
thx
Jamie
Posted by Geneal (Member # 10375) on :
Dear Jamie,
I am so glad your ALS test was negative.
Wish you were going tomorrow to see LLMD.
That is when I am going.
Maybe one day soon, our paths will cross there.
Don't worry. Our LLMD will take the best care of you.
Post and let us know how your visit went.
Hugs,
Geneal
Posted by Visual Afterimage Man (Member # 10435) on :
The fact that your 41 band went from IGG (old infection) positive to a IGM (active infection)postive after a small dose of abx is good evidence that you have a lyme infection hiding in your tissues.
Stick with it... I think your are on the right track. Wait till they give you a higher dose of abx and you have your first herx. You'll be certain then.
Posted by sixgoofykids (Member # 11141) on :
Band 30 is specific for Lyme ... I'm sure your LLMD will tell you that you have it. Keep us posted! Things will get better, hang in there.
Posted by mojo (Member # 9309) on :
I also think your LLMD will diagnose you with Lyme. You have sypmtoms and the tests are very conclusive.
I've been in treatment for a year and a half and doing much better. When you've had it for a long time it takes a long time to treat but we need to be patient and get well.
Posted by Jamiet (Member # 11601) on :
THanks yall,
I just want to get better. I'm sick, and this is before any abx.
I have a good boss and job, thank god. I've already warned them, i will miss work when the herx hits.
tc
jamie
Posted by Lymetoo (Member # 743) on :
Welcome....You have plenty of lyme-specific bands and the IND's are VERY important. Did you read this?? Read it all the way down...even the reponses to the original post.