posted
Hi All, I was on the boards some time ago as marblenose. I'm back as just jan. I have been on IV roc twice since then and a many other anbx to no avail. I am getting worse. I was in hospital for heart problem a month ago. One duck said it had nothing to do with Lyme the one who did the procedure was more educated and knew what Lyme can so to our tender hearts. I have always done alternative ie accupressue, cranial sacral, zero balancing and many supplemnets and herbs. I am feeling defeated these days. The pain is intensifying and I am on some major pain meds. Sorry to be such a downer. I realized I need to be connected to others going through what I am. Thanks for reading. Blessings, just jan
-------------------- I used to be marblenose but my lymebrain could not remember what email account I used to sign in so now I am just jan... bit in 1994 diagnosed in 2004 I have tried every anbx and alternative known to personkind.
NICENESS COUNTS!! Posts: 61 | From orange county new york | Registered: Jul 2008
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bettyg
Unregistered
posted
welcome back just jan!
would you edit your post breaking it up for us neuro lymies to comprehend and read please? instructions are below..... thanks!
WELCOME, would you like a FREE copy of my newbie package of 124 pages info galore sent by LYMENET'S PRIVATE MESSAGE system here; includes TREEPATROL'S LINK of his archive of over 1000 links of good lyme info?
I've been completely REORGANIZING it; NOT DONE YET; but up to page 60 since I have now created a TABLE OF CONTENTS WITHOUT PAGE NUMBERS since it changes DAILY! The part NOT organized yet is the last 30 pages of SSDI, ss disability insurance benefits tips/forms!
also, please go to TREEPATROL'S NEWBIE INFO IN MEDICAL; at top being features; mark it as a favorite! over 1000 links of good lyme info. He/I have some duplicates.
most of mine is very DETAILED info on certain things: SSDI/ss diability insurance benefits; FINANCIAL BURDENS; about IGENEX blood testing, symptoms lists for the basic types, NOIR/no infrared SUNGLASSES, etc. and how to use this board!
If you would like my newbie package, please send me a PRIVATE MESSAGE. PMs are the 2 people standing together icon to right of your name. Just ask me to send you lyme package, and I'll get it to you promptly. Thank you! ******************************
we recommend 6-12 WEEKS of doxycycline antibiotics; 2 months symptom FREE before stopping antibiotics. *******************************************
Also, please be VERY SPECIFIC in subject line what you will be discussing.
Examples: on doxy and biaxin; need feedback:
My western blot igm/igg blood tests from ....lab; list them going DOWNWARD not across.
18 + 41 ++++ 54 ind
Fyi: we have over 1000 viewers daily; 200 - 400 posting/replying so we all must manage our time well; so specific titles get our time/replies. NON-SPECIFIC ONES, I SOB, SCROLL ON BY!
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. I'm also in the early stages of losing my eyesight from diabetes retinopathy. *******************
please go to dr. burrascano's 05 lyme treatment guidelines and print out pages 17-18 ,,, where it talks about dosages for KIDS and adults!! ********************************************
People seeking doctors in certain states might be able to get help from their state online information and support group. Over 1500 people belong to these state groups. Many of the groups are small but quite a few have 20 or more people on them.
Type your state name and lyme as one word, e.g. newyorklyme
For SC, SD, ND and WY, put a hyphen between the statename and lyme, e.g. northdakota-lyme
The groups are moderated so you have to apply, and we 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. ***************
I want to make sure we have whoever on our NATIONWIDE LLMD list, which I have also with 12 other folks.
If you call any of the names where we do NOT have complete info, please ask the following and furnish me when you are done so we can add it to our nationwide llmd lists!! THANK YOU!
if you end up calling any above WITHOUT COMPLETE INFO, would you get the following IF possible from them??
we need full name SPECIALTY street addy city, state
phone no. fax no. web site or email if possible
cost per hour for 1st visit cost for followups
do they take insurance? what kind? treat by IV or ORAL?
thanks for helping us add to our drs. of around 300 nationwide who are LLMD!
Melanie Reber
Frequent Contributor (5K+ posts)
Member # 3707
posted
Hi Jan,
I'm so sorry you are not doing too well. Yes, it can be very exasperating when anyone, especially with medical authority, makes a blanket statement re: illness w/out doing research.
It only takes a couple of minutes to find numerous published studies on TBDs and their ill-effect on the cardiovascular systems.
Hopefully, you were able to obtain the help you needed, and are continuing treatment.
My best, Melanie
Posts: 7052 | From Colorado | Registered: Mar 2003
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I met with my LLMD on Friday and I've been bitten again!!!
I started amox and mepron.
Any and all feedback regarding wither one is appreciated.
I ordered a copy of Under our Skin.
I hope I posted correctly.
Blessings, just jan
-------------------- I used to be marblenose but my lymebrain could not remember what email account I used to sign in so now I am just jan... bit in 1994 diagnosed in 2004 I have tried every anbx and alternative known to personkind.
NICENESS COUNTS!! Posts: 61 | From orange county new york | Registered: Jul 2008
| IP: Logged |
bettyg
Unregistered
posted
jan,
posting was great! so sorry to learn of being bitten AGAIN!!!
jan, if you UPDATE MY PROFILE, you could show your FORMER name in your signature line ... fyi only in case you were unaware of this!
-------------------- I used to be marblenose but my lymebrain could not remember what email account I used to sign in so now I am just jan... bit in 1994 diagnosed in 2004 I have tried every anbx and alternative known to personkind.
NICENESS COUNTS!! Posts: 61 | From orange county new york | Registered: Jul 2008
| IP: Logged |
bettyg
Unregistered
posted
yippee; you succeeeded in showing your previous name!
IP: Logged |
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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. I'm also in the early stages of losing my eyesight from diabetes retinopathy. ![[Frown]](frown.gif)
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