Hi! New to the page... But have been reading for a LONG time! Seems after 18+ years I have been "Diagnosed" (Used loosley) as having Lyme Disease.... (which I have been saying for a long time now)
I would like to give a short list of my symptoms and see what anyone might think....
Oh I was prescribed Doxy 2x/day for 3 weeks.. Ha! Not going to treat CLD! But OK Its a start....
Nausea Sudden Senurineural Hearing Loss - with severe imbalance, LOUD ringing in right ear happened on 9-16-08 Still have loud ringing, dizziness resolved (hearing 100% GONE out of no where will never get it bakc they tell me!) (i'm only 29!) - Blood work for antichochlear anti bodies )HSP70 Test found in Lyme patients)positive - CT Scan and MRI both normal.
Right sided Bell's Palsy 4-5 times - 90's, 01, 03, 06 and started again with this episode all lasting about 4 weeks each. One time was left sided Bells' Palsy. Bit by tick in 90's which we think cause first episode of Bell's Palsy.
Right sided facial swelling 6-10 times in lat 2 years or so.
Weak and tired allot, Very cranky, sore muscles, VERY TIRED, no energy to do anything feel hung over. Wake up every day with SPLITTING headache! Shooting pains on face from right ear over. Severe back pain and right leg pain. Stomach Ulcer Severe Knee pain Always Cold Muscles Twitch. Headaches Extreme Fatigue Son born at 24 weeks with lots of medical complications.
Swollen Glands all the time. Severe hip pain. Heart palpitations, sometimes feels like heart is coming out of chet. I have MVP.
And thats the short version! I am suffering so bad, and I know all of you are too! If anyone has any advice or thoughts on this I would appreciate it.
Seeing LLMD 2/13/09 (friday the 13th) EEEKK!
Posted by bettyg (Member # 6147) on :
welcome deaf.... glad you found us and you FINALLY have a diagnosis!!
"Son born at 24 weeks with lots of medical complications" ... this concerns me since your baby could have been born with CONGENITAL lyme since you've had it a long time.
please go to my newbie package link or top of medical and click on my newbie link there; read down thru table of contents, and then look for GENEAL'S KIDS SYMPTOMS LIST! check your child for any of these, and address this to the llmd you will be seeing in feb. ok!!
look over the other adult symptoms lists as your symptoms show up there and CO-INFECTION lists are there as well.
best wishes to you.
i'm not sure if i've sent you my welcome letter or not, so will include that, and you'll find other good info there too ok! read some of those top links now so you can prepare for your 1st llmd appt. ok.
Welcome; i'm so glad you found us!! You've come to the right place for education and support!
Dr. Burrascano's most recent "Diagnostic Hints and 2008 Treatment Guidelines for Lyme and Other Tick Borne Illnesses" @
DebAZ's 12.08 comparison of 05 to 08 new guidelines:
Differences in newest Guidelines compared to 2005 Guidelines
Page 25 26 and 27 Added section "Sorting out the co infections"
Page 28 New info given to get supplements from additional places
In all areas of Supplements there has been various changes and additions to each description and i advice people to re read the full supplement section as well the following additions to the whole supplement section:
Basic Daily Regimin NT Factor Added
Alternative Treatments CITICHOLINE Added
Immune Support Transfor factor Added
For Fatigue Took out "For Fatiuge" section
Other Optional Vitamin D Added
Page 31 "Lyme Disease Rehabilitaion" is rewitten and added to
He mentions Flexcreme (Flex Cream) by Pharmanex as great for body pain
. suggests that you discuss with your doctor continuing treatment until you are symptom free for 2 months.
please see BettyG's newbie package info on the link below; click on link at bottom of my package. Check it out as time permits for you! @ http://tinyurl.com/58eyou
sorry, link takes you to END vs. beginning, so just use UP ARROW and go to the TOP for detailed info! thanks!
Fyi: we have over 1000 viewers daily; 200 - 400 posting/replying; so specific titles get our time/replies. non-specific ones, i sob, scroll on by!
Also, please be very specific in the subject line what you will be discussing so more people will be able to assist you.
please go to my newbie links, copy the entire thing, and then print this off....
financial burdens compiled by melanie reber pages 74 - 92; outstanding info there.
also in my table of contents, for FINANCIAL BURDENS, i believe there are a few more general comments there without links!! print that off too as it's newer info from members thru their own personal, tragic experiences. thoughts and prayers headed your way..
Betty's POSTING GUIDELINES
When you post or reply, please break up your solid, continuous block text welcome to the board! many of us have neuro lyme where we can NOT read long solid block text and be able to comprehend and read it as is.
please edit your post by CLICKING PAPER/PENCIL ICON to right of your name. that opens up BOTH subject line and body text.
now please break up your WORDY SENTENCES into one sentence paragraphs. Then hit ENTER KEY ``THREE`` after each paragraph; we need that space for comprehension.
if you are NOT a wordy person, you can do 2 or 3 total ok. do this for your entire post.
NOTE: you do NOT have to use "", just show the name of person you are responding to, and then type your comment.
IF you need to use "", PLEASE DELETE "BOLD" CODES so it's regular type text we read vs. the DARK, HARSH/PAINFUL BOLDING.
specifically, delete the first 4 characters of 2ND LINE of a ""
[QB] just delete these 4 characters, and BOLDING is GONE! my eyes will really appreciate that; it's one very bad side effect of my having lyme for 38.5 years!! xox
then go to left hand corner and mark box to receive ALL REPLIES, and click EDIT SEND
we thank you for helping us; otherwise, we will SOB, SCROLL ON BY, since we can't read to help you. If I see posts like this, I SOB them; to hard on me.
LYMETOO'S DR. C'S EXPLANATION OF WESTERN BLOT TESTING!
PRINT THIS OFF the full explanation, and then CIRCLE the numbers that coincide with your positives, IND! That will explain your no. results! ------------------------------------------------------
People seeking doctors might be able to get help from their state online information and support group. Nearly 3,400 people belong to state groups. Some of the groups are small but more than 20 of them have 50 or more people and seven have over 100.
The groups are moderated and you have to apply. Most don't allow doctor names, but once on the group, you can ask for doctors in a certain area and ask people to email you privately. *******************************************
Posted by DeafFromLyme (Member # 18795) on :
Thanks! I will look into the info on kids, I didn't realize he could be affected by my Lyme.
I know my Lyme probably caused his premature birth.. I am so thankful to have found this site, I have learned allot just from reading others stories and all the info that is available here!
Posted by DeafFromLyme (Member # 18795) on :
Just saw your PM thanks for the advice! I updated everything like you said.
I guess I was a little anxious to get on the site...
Posted by sandiet (Member # 15916) on :
Hi Erika, You just described my symptoms to a tee, I am CDC positive for Lyme.
I have been treating now for 1.5 years with non stop high dose ABXS.
I've made improvements overall, but not recovered yet, still very hopeful to get my life back.
Good luck on this long crazy journey of Lyme Disease!Take care, Sandie
Posted by islandgirl136 (Member # 16696) on :
I am on round two of my doxy. 100mg/twice a day. I tested positive about 7 mths ago. Felt like I was hit by a Mack truck.First treament of doxy helped a bit. Got tested 3 weeks after my first treament. It was negative. Now 7 months later, some achs and pains, tired, restless legs really bad. My left arm is starting to get numb again. Went back to get tested, Positive again. Was going to wait to take my meds so I could see the way lyme really effects my body, but I as so darn tired today I figured what would it hurt. Now I can see how my body goes crazy with the doxy. Either way its not to fun.
Posted by Starfall1969 (Member # 17353) on :
I had to laugh at your one statement--about the dr. appt. on Friday the 13th.
My LLMD appt. is on Friday March 13th, and that was the first thought I had when they called with the date.
Thank God for putting His hand over my mouth, or I might have said, "Don't you have a better date?"
I already had to wait 6 months, I don't want to wait another 6 months!
But anyway, I've had a lot of weird symptoms too:
Started off with severe neck/bak pain Numbness/weakness in arms and legs Fever/chills that come and go Chest pain Shortness of breath Visual disturbances
Lately I've had a lot of stomach issues--nausea, pain, diarrhea, weight loss.
I've been told it;s all in my head and I just need a psychiatrist.
I'm hoping the LLMD finds something.
Posted by DeafFromLyme (Member # 18795) on :
Glad to hear I'm not the only one a little nervous about Friday the 13th but it is pretty creepy, and like you I have waited a LONG time for my appt so NO way was I asking for a different date.
My luck it would have been 6 months from now and STILL on a Friday the 13th!
Best of luck to you on your appt. It will be interesting to see what we find out!