I am 23 years old and was diagnosed almost 3 years ago with idiopathic transverse myelitis. While in the hospital paralyzed from the shoulders down, I was treated with IV antibiotics and steroids for the inflammation in my spinal cord, I and was tested for everything, including Lyme, but no cause was ever found.
Before becoming ill, I was a completely healthy college student. Now I am numb on most of the left side of my body, and I have chronic fatigue. Anxiety is a daily battle, I have random shooting pains in different parts of my body (mostly upper abdomen) and I have muscle spasms in my legs and arms. I also have to take medicine for over active bladder. I feel like a 23 year old senior citizen (no offense to the older members!)
I would be content with diagnosis if it was not for my experience with Lyme as a child. I was treated for Lyme when I was 9 years old. After a vacation in Arkansas where I was bitten by a tick on the shoulder, I developed a lot of the early symptoms of the disease. My pediatrician tested me for Lyme, but the test was negative. I was treated with antibiotics just in case and eventually got better. I never thought about Lyme Disease again until this mysterious disorder, TM, entered my life.
I was just wondering if this could possibly be Lyme even though I've tested negative twice, 11 years apart.
Posts: 13 | From Texas | Registered: Jun 2009
| IP: Logged |
bettyg
Unregistered
posted
welcome meri! yes, it can be LYME!
please copy your post and post in MEDICAL
subject: newbie; dx w/idiopathic transverse myelitis; could it be lyme?
paste your wonderfully, detailed post in text area.
if you are needing a lyme literate md, LLMD, post in seeking dr.
copy your post again and paste there in a NEW post you started in small black/white box at top.
TEXAS llmd needed is subject line.
you've got 1 good one in north texas! nighty night ....
go to lower left hand corner and mark box to receive all replies ok.
now delete this post since 75% plus stay in medical and don't go outside of it.
click on pencil, 3rd box to right of your name in top post. go to top left corner click delete post; hit enter, and it's gone.
ignore moderator's comments; you can delete your post anytime. thanks!
my welcome letter ....
Welcome; i'm so glad you found us!! You've come to the right place for education and support!
Betty's suggested POSTING GUIDELINES . 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 ``TWICE`` after each paragraph; we need that space for comprehension.
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. ------------------------------------------------------
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. *******************************************
This explains the medical politics around lyme WHY you need an ILADS-educated or ILADS-member LLMD (and there are also some ILADS-member LL NDs (naturopathic doctors):
You should also be evaluated for coinfections. Not all tests are great in that regard, either, but a good LLMD can evaluate you and then guide you in testing. One of the top labs is:
"With most infections, your immune system first forms IgM antibodies, then in about 2 to 4 weeks, you see IgG antibodies. In some infections, IgG antibodies may be detectable for years.
Because Borrelia burgdorferi is a chronic persistent infection that may last for decades, you would think patients with chronic symptoms would have positive IgG Western blots.
But actually, more IgM blots are positive in chronic borreliosis than IgG. Every time Borrelia burgdorferi reproduces itself, it may stimulate the immune system to form new IgM antibodies.
Some patients have both IgG and IgM blots positive. But if either the IgG or IgM blot is positive, overall it is a positive result.
Response to antibiotics is the same if either is positive, or both. Some antibodies against the borrelia are given more significance if they are IgG versus IgM, or vice versa.
Since this is a chronic persistent infection, this does not make a lot of sense to me. A newly formed Borrelia burgdorferi should have the same antigen parts as the previous bacteria that produced it.
But anyway, from my clinical experience, these borrelia associated bands usually predict a clinical change in symptoms with antibiotics, regardless of whether they are IgG or IgM." ===========
ILADS The International Lyme and Associated Diseases Society (ILADS) provides a forum for health science professionals to share their wealth of knowledge regarding the management of Lyme and associated diseases.
Leelee
Frequent Contributor (1K+ posts)
Member # 19112
posted
Hi Meridia,
Unfortunately, you may have Lyme. For some of us it hides and then flares back up stronger than ever.
I would suggest being seen by a LLMD (Lyme Literate Doctor). It may also be helpful to read anything and everything you can about Lyme and co-infections while waiting for your appointment.
Lymenet is a great place to start.
-------------------- The ultimate measure of a man is not where he stands in moments of comfort and convenience, but where he stands at times of challenge and controversy. Martin Luther King,Jr Posts: 1573 | From Maryland | Registered: Feb 2009
| IP: Logged |
posted
If the tests are semi-worthless, how in the world do you get a diagnosis without wasting hundreds of dollars??
I asked my neurologist to order another Western Blot test, but seeing as how I've already been tested twice (both negative when I was 9 and 20), I feel like I'm just going in circles.
My only reasoning for continuing with the testing is that Lyme disease is the only logical explanation for my developing transverse myelitis out of the blue and becoming completely paralyzed. There is no other explanation for why this happened to me, and I refuse to believe that it came from nowhere!
Ahh I'm so frustrated!
Posts: 13 | From Texas | Registered: Jun 2009
| IP: Logged |
Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
-
The test should be done by Igenex. Most other labs do not test all the bands.
And, your WB may not have actually been negative. It may have been determined to be negative by CDC criteria but that is not accurate.
Dr C's Western Blot explanation is discussed here:
But you really need to see an ILADS-educated LLMD who has treated hundreds and thousands of lyme patients. You also need to be assessed for other tick borne infections.
Most neurologists are very uneducated about they clinical complexity of tick-borne disease.
I do hope you can find a good LLMD.
You might take a look at this other current thread. I just posted a lot of links there that may interest you:
posted
I'm new. My son (13) was bitten in central PA, deer tick was well embedded and engorged, for approx 1 - 2 days. I sent it to IGeneX in CA - tick tested Pos for Lyme.
Our ped. doesn't think antibiotics are needed. How likely is it he has the Bb in him? How likely is it he (healthy) will kill Bb off himself?
Any thoughts appreciated.
Posts: 1 | From Central Maryland | Registered: Jun 2009
| IP: Logged |
Ocean
Frequent Contributor (1K+ posts)
Member # 3496
posted
I tested negative on an Elisa 12 years apart. They are not accurate. You need a Western Blot test from Igenex.
Please find a LLMD to help you, it sounds like Lyme to me.
Ocean
Frequent Contributor (1K+ posts)
Member # 3496
posted
Daisy,
You may want to post this as a separate topic. I would be worried if the tick tested positive. How long ago was he bitten? Does he have symptoms? ANY symptoms, even irritability can be one.
Most doctors..99% of them know Nothing about Lyme Disease, so it doesn't surprise me one bit that your pediatrician thinks your son will be fine.
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)
thanks!![[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. ![[sleepy]](graemlins/sleepy.gif)
Printer-friendly view of this topic