Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
-
sheba968 - Welcome. Now, most of us here won't be able to read your post. Would you kindly edit in lots of white space by making paragraphs of just 2 sentences or so ?
You can click on the little page icon on the upper left of your post and then hit the return button twice to create paragraphs. If you have very technical information, add in an extra line of space so that eyes can easily follow.
Or, if you have a long post, that extra space is very nice.
What looks like four lines on the composing page will equal about two lines once it's posted. That works best for most of us.
Please use the links on the board to find an LLMD as soon as possible.
So many of your symptoms remind me of myself and others on this board.
More experienced members will come along tonight or tomorrow.
You do not have to have IGG and IGM positive for lyme disease.
One was enough and you need to be treated.
If you are up to it tonight try doing a few searches on the board to learn as much as you can about Lyme.
Knowledge has been so powerful for me.
I can imagine how frustrated you must feel right now.
Please don't give up. If you have Lyme or not we can help you. However, your symptoms and blood work are pretty strong.
You need to be evaluated by an LLMD and treated soon.
Again, I am not very good so hold on a few hours until another comes along. ------------------------------ Posts: 130 | From: Texas | Registered: Nov 2007 | IP: Logged
***************************************
i copied this over from a duplicate post here in medical so ALL REPLIES can be on ONE post; not 2.
welcome, so glad you found us! we'll help you. i couldn't read anything.
plese edit and the instruction are below ok!
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!
**********************
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.
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.
IP: Logged |
bettyg
Unregistered
posted
please post your POSITIVE, IND results of both your igm/igg western blot blood tests going DOWNWARD ... NOT ACROSS for easier comprehension.
fyi, miscarriages are ALSO LYME RELATED!
please look at the way keebler and i both post to give you an idea of broken up paragraphs and being easier to comprehend/read.
fyi, you've gone just the opposite, and things do NOT stand out as it is all monotone.
you'll get the hang of it, and we're trying too so we can help you to the best of our abilities ... so have patience!
lyme robs us of everything including $$$$ !!
IP: Logged |
quote:Originally posted by bettyg: please post your POSITIVE, IND results of both your igm/igg western blot blood tests going DOWNWARD ... NOT ACROSS for easier comprehension.
fyi, miscarriages are ALSO LYME RELATED!
please look at the way keebler and i both post to give you an idea of broken up paragraphs and being easier to comprehend/read.
fyi, you've gone just the opposite, and things do NOT stand out as it is all monotone.
you'll get the hang of it, and we're trying too so we can help you to the best of our abilities ... so have patience!
lyme robs us of everything including $$$$ !!
Posts: 11 | From buffalo,ny | Registered: Jun 2008
| IP: Logged |
posted
Hi! I had the Lyme Disease AB W/RFX IGG, IGM-any
thing over 1.10 is pos, my levels are 1.39. This
was followed by the Western Blot.
23 KD (IGM) REACTIVE
39 KD (IGM) REACTIVE
41 KD (IGM) REACTIVE
I had no reactivity in the IgG bands in my blood.
I subsequently had a lumbar puncture. My Lyme
titer was 1.37 in the csf fluid. the follwing
bands were also found:
23 KD (IGM) REACTIVE
58 KD (IGG) REACTIVE
Anybody who has any ideas on how these should be
interpreted, I would really like to hear from
you- and if this is not Lyme, does anyone know
what could possibly give you these type of labs
and symptoms? I don't know what to think
anymore.
Posts: 11 | From buffalo,ny | Registered: Jun 2008
| IP: Logged |
Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
-
Sheba,
Thanks for working with us so that we can read. I caught the post with some labs results - some LLMDs would say, if you have symptoms, that it would certainly be worth further evaluation.
Did you have a LLMD do these tests?
I am many time zones earlier than you are - but we are both up too late. Must be the equinox (or my snoring neighbor).
Hey, you can't rely on tests. You need a LLMD to see you, take history, etc. There are also other infections to consider.
Others will come along in the morning. I'll check in after noon your time with a few links.
Clinical Advisor Clinical Feature Issue Story From the May 2007 issue of Clinical Advisor (home page: www.clinicaladvisor.com )
CONTROVERSY CONTINUES TO FUEL THE "LYME WAR" By Virginia Savely, RN, FNP-C
***** As two medical societies battle over its diagnosis and treatment, Lyme disease remains a frequently missed illness. Here is how to spot and treat it.
=========================
The Institute for Molecular Medicine
A nonprofit institute dedicated to discovering new diagnostic and therapeutic solutions for chronic mycoplasma infections.
For chronic illnesses (CFS, FMS, RA, among other illnesses) that could have an infectious component, The Institute for Molecular Medicine suggests the following lab tests (codes are CPT codes):
1. MycoplasmaTest Panel (CPT: 87798x3, 87581)--Mycoplasma species panel of 4 pathogenic mycoplasmas (M. fermentans, M. penumoniae, M. hominis, M. penetrans) by PCR.
Alternatively, a Mycoplasma general (all species) test by Qualitative PCR can be substituted.
Continued at link.
This is good for EVERYONE to look at.
Other tests are discussed, too, such as Cpn, HHV-6, etc.
===================================
This is why ILADS' doctors - LLMD's are best for evaluation. As discussed in the Savely article - above - the IDSA member doctors have discounted much of importance.
Attorney General Richard Blumenthal today announced that his antitrust investigation has uncovered serious flaws in the Infectious Diseases Society of America's (IDSA) process for writing its 2006 Lyme disease guidelines and the IDSA has agreed to reassess them with the assistance of an outside arbiter.
Thanks for working with us so that we can read. I caught the post with some labs results - some LLMDs would say, if you have symptoms, that it would certainly be worth further evaluation.
Did you have a LLMD do these tests?
I am many time zones earlier than you are - but we are both up too late. Must be the equinox (or my snoring neighbor).
Hey, you can't rely on tests. You need a LLMD to see you, take history, etc. There are also other infections to consider.
Others will come along in the morning. I'll check in after noon your time with a few links.
Clinical Advisor Clinical Feature Issue Story From the May 2007 issue of Clinical Advisor (home page: www.clinicaladvisor.com )
CONTROVERSY CONTINUES TO FUEL THE "LYME WAR" By Virginia Savely, RN, FNP-C
***** As two medical societies battle over its diagnosis and treatment, Lyme disease remains a frequently missed illness. Here is how to spot and treat it.
=========================
The Institute for Molecular Medicine
A nonprofit institute dedicated to discovering new diagnostic and therapeutic solutions for chronic mycoplasma infections.
For chronic illnesses (CFS, FMS, RA, among other illnesses) that could have an infectious component, The Institute for Molecular Medicine suggests the following lab tests (codes are CPT codes):
1. MycoplasmaTest Panel (CPT: 87798x3, 87581)--Mycoplasma species panel of 4 pathogenic mycoplasmas (M. fermentans, M. penumoniae, M. hominis, M. penetrans) by PCR.
Alternatively, a Mycoplasma general (all species) test by Qualitative PCR can be substituted.
Continued at link.
This is good for EVERYONE to look at.
Other tests are discussed, too, such as Cpn, HHV-6, etc.
===================================
This is why ILADS' doctors - LLMD's are best for evaluation. As discussed in the Savely article - above - the IDSA member doctors have discounted much of importance.
Attorney General Richard Blumenthal today announced that his antitrust investigation has uncovered serious flaws in the Infectious Diseases Society of America's (IDSA) process for writing its 2006 Lyme disease guidelines and the IDSA has agreed to reassess them with the assistance of an outside arbiter.
Thanks for working with us so that we can read. I caught the post with some labs results - some LLMDs would say, if you have symptoms, that it would certainly be worth further evaluation.
Did you have a LLMD do these tests?
I am many time zones earlier than you are - but we are both up too late. Must be the equinox (or my snoring neighbor).
Hey, you can't rely on tests. You need a LLMD to see you, take history, etc. There are also other infections to consider.
Others will come along in the morning. I'll check in after noon your time with a few links.
Clinical Advisor Clinical Feature Issue Story From the May 2007 issue of Clinical Advisor (home page: www.clinicaladvisor.com )
CONTROVERSY CONTINUES TO FUEL THE "LYME WAR" By Virginia Savely, RN, FNP-C
***** As two medical societies battle over its diagnosis and treatment, Lyme disease remains a frequently missed illness. Here is how to spot and treat it.
=========================
The Institute for Molecular Medicine
A nonprofit institute dedicated to discovering new diagnostic and therapeutic solutions for chronic mycoplasma infections.
For chronic illnesses (CFS, FMS, RA, among other illnesses) that could have an infectious component, The Institute for Molecular Medicine suggests the following lab tests (codes are CPT codes):
1. MycoplasmaTest Panel (CPT: 87798x3, 87581)--Mycoplasma species panel of 4 pathogenic mycoplasmas (M. fermentans, M. penumoniae, M. hominis, M. penetrans) by PCR.
Alternatively, a Mycoplasma general (all species) test by Qualitative PCR can be substituted.
Continued at link.
This is good for EVERYONE to look at.
Other tests are discussed, too, such as Cpn, HHV-6, etc.
===================================
This is why ILADS' doctors - LLMD's are best for evaluation. As discussed in the Savely article - above - the IDSA member doctors have discounted much of importance.
Attorney General Richard Blumenthal today announced that his antitrust investigation has uncovered serious flaws in the Infectious Diseases Society of America's (IDSA) process for writing its 2006 Lyme disease guidelines and the IDSA has agreed to reassess them with the assistance of an outside arbiter.
posted
This is the normal reaction, unfortunately, from the medical field. It's sad. Very sad. Many of us suffer because of this.
I had to change my ob/gyn of 17 years because of his attitude towards Lyme.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
| IP: Logged |
Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
-
Sheeba,
my eyes still have trouble reading these posts, so I'll just leave one more reply.
Oh, thanks for your work in adjusting your typing style. There is no need to go to all the work to copy, paste, bold and repeat entire posts - sometimes a phrase or two, but bolding large blocks of print is very hard to read and looses emphasis.
When you type, it's best to carry out the line in the natural order across the page. that would help many here tract the sentences better and, therefore, answer you. The poetry block is very hard to track. ( Other than for test results, of course. the block style works for that sort of thing.)
Ohhh - I just figured out. You are spacing after every sentence. but, while composing, that's just about 1/3 of a line after it gets posting. Next time, try - while composing - typing 3-4 lines and then a space bar or two. that will then carry the words across the page.
====================
As for the reaction/reception you're getting: we've all been there and done that. As perplexed as you may be, it's best to go underground.
You cannot change this by yourself. Don't even try. Don't talk to those who don't want to hear. I'd even not talk to anyone about this right now. It's very complex and takes way too much energy. Save your energy for finding the right help.
Quietly slip away so that your chart does not get loopy labels tossed on you - it will happen and that will make further treatment harder. But, be sure to have a copy of all your tests so you can move on.
Can you find a LLMD? By now, after reading the Savely article you know why you need one.
After having read the Ct. Atty. General's press release, you know that the IDSA is a might large organization - and they think they are right on about lyme.
You will not change minds. And by being bold about trying, you can jeopardize the future of the real doctors. Yes, it happens all the time. They have had their medical licenses pulled in some cases, from the IDSA pressure and ignorance.
Still, you must find those who are educated . . . find out what is going on . . . get better and THEN, you can show by example.
You don't have the time and energy to spend with those who can offer you no answers. Seek out wisdom.
I do hope you can find the care - and answers - that you need - It's not easy - it's like a grad course in college to learn all this.
Start with Singleton's book "The Lyme Disease Solution" while you wait for an appointment with someone who is an excellent diagnostician in this field.
In the meantime, be sure you don't have any aspartame/Nutrasweet/Equal or MSG in your diet. None. All that - any of that - can causes some serious reactions.
It's best to eat good, natural foods. the Singleton book goes into that in detail.
Others will come by with more suggestions. Find a local support group if you can. And take really good care of yourself.
this can get better.
Good luck.
- -
[ 21. June 2008, 01:15 PM: Message edited by: Keebler ]
Posts: 48021 | From Tree House | Registered: Jul 2007
| IP: Logged |
Dawnee
Unregistered
posted
Your neuro doesn't know what the heck he is talking about! You have Lyme Disease!
I have the same symptoms as you (the L'Hermittes sign, Babinski's Sign, Hyperreflexia, clonus in ankles, weakness in extremities... I have them all and more! I suspected MS first)
The Lyme Disease Network is a non-profit organization funded by individual donations. If you would like to support the Network and the LymeNet system of Web services, please send your donations to:
The
Lyme Disease Network of New Jersey 907 Pebble Creek Court,
Pennington,
NJ08534USA http://www.lymenet.org/
UBBFriend: Email this page to someone!
![[Smile]](smile.gif)
![[Wink]](wink.gif)
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)
![[shake]](graemlins/shake.gif)
Printer-friendly view of this topic