Are they going to come back different?
Posts: 13 | From MA | Registered: Dec 2010
| IP: Logged |
seekhelp
Frequent Contributor (5K+ posts)
Member # 15067
posted
Pardon my language, but who the hell orders another WB with that many positive bands? Are they insane? WOW.
What they may want is to see results with less bands and proclaim you cured already. An old IDSA trick. What type of doc ordered the re-test? Have you ever been treated for Lyme?
Tested for coinfections? I'd run, run, run if the original doc didn't treat you ASAP.
Posts: 7545 | From The 5th Dimension - The Twilight Zone | Registered: Mar 2008
| IP: Logged |
I have been on Doxy for 3 weeks now. And this is the 1st time I am on anything for lyme
I just got these results back on 11/29
I have had issues for the past 15 months. In and out of hospitals and doctors.
I am going to another doctor next week with a different facility.
Posts: 13 | From MA | Registered: Dec 2010
| IP: Logged |
seekhelp
Frequent Contributor (5K+ posts)
Member # 15067
posted
Well, it's great you have a definitive diagnosis. It's unfortunately one we don't want to see. I would run to the best LLMD you can afford and get good treatment. I wish you the best. Don't waste any valuable time going to docs you don't know will follow ILADS protocols and treat correctly.
Posts: 7545 | From The 5th Dimension - The Twilight Zone | Registered: Mar 2008
| IP: Logged |
posted
The doctor called said my WB didn't come back yet but the ELISA came back positive.
I am seeing a neurologist on Thursday.
Said I need a spinal tap. I am going to repost because I want more info on spinal taps.
Posts: 13 | From MA | Registered: Dec 2010
| IP: Logged |
sixgoofykids
Honored Contributor (10K+ posts)
Member # 11141
posted
You do NOT need a spinal tap nor a neurologist. Get yourself to a Lyme specialist!! A spinal tap is unnecessary. You know you have Lyme based on your symptoms and your Western Blot. All this additional testing is unnecessary. Lyme is a clinical diagnosis based on symptoms.
Please post in seeking a doctor. Once you get a referral, be sure you talk to a couple people who have seen that doctor so that you can find out if he's a good fit for you.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
| IP: Logged |
posted
holy jesus, let me just echo what everybody else has already said. LLMD, now!
Posts: 340 | From san francisco, ca | Registered: Nov 2010
| IP: Logged |
karenl
Frequent Contributor (1K+ posts)
Member # 17753
posted
Stacey,
please listen to sixgoofykids, she is very experienced. I had a spinal tap, never would do it again. It can do harm.
You need only a LLMD. It is not complicated for a LLMD.
Posts: 1834 | From US | Registered: Oct 2008
| IP: Logged |
seekhelp
Frequent Contributor (5K+ posts)
Member # 15067
posted
Yep, this is playing out exactly as suspected. They will do ANYTHING to disprove Lyme so they don't have to treat you with insufficient protocols anyway. Most people it's easy to get a non CDC-positive test. It appears you're the rarity and they need to work harder to find this result. What a bunch of jerks. The more I read things like this, the more upsetting it is.
You know you're ill. You have a positive test. I would have other tests ran for viral, bacterial and other main issues to rule out / add other protocols while treating what you know.
Posts: 7545 | From The 5th Dimension - The Twilight Zone | Registered: Mar 2008
| IP: Logged |
posted
NO NO NO!! Get a REAL doctor ASAP! They are trying to prove you don't have lyme even though your current testing says YES YOU DO!
Why would any sane dr want to order a spinal tap?? OH.. maybe so they can say.. LOOK, it came back negative!! (20% chance it will come back positive, by the way)
Please post in seeking a doctor. Once you get a referral, be sure you talk to a couple people who have seen that doctor so that you can find out if he's a good fit for you.
posted
please please please run from these dr.'s, i know you might think they are nice and seem like thier helping.....from my exp. their not. get a llmd fast and dont look back, and no to the spinal. worthless, your already positive----thats that!!!! you dont need to look any further!!!
-------------------- 3 months Doxy 8 months of Tetra 7 months of Biaxin/Plaq. 4 months Doxy/Biaxin/Plaq. 5 months Biaxin/Plaq. Back on Doxy/Biax/Plaq On the road to recovery. Trying to make people Lyme Aware....... Posts: 289 | From R.I. | Registered: Jun 2009
| IP: Logged |
TerryK
Frequent Contributor (5K+ posts)
Member # 8552
posted
Yes, the test results can be different due to antigenic variability. The bug changes it's outer surface protiens in order to evade the immune system. As others have said, with a test result like that, you don't need more testing, you need an ILADS LLMD.
ILADS is a group of physicians who specialize in treating chronic lyme disease. You will often hear them referred to as LLMD's (Lyme Literate Medical Doctors) http://www.ilads.org/
just to fill you in a little: Most doctors who are NOT members of ILADS (International Lyme and Associated Diseases Society) use the IDSA guidelines to diagnose (or not) and treat Lyme Disease. Many who end up at lymenet with chronic lyme disease are the result of the IDSA guidelines.
Lyme is a political illness. A great book that you can read that helps to understand the situation with lyme disease is "Cure Unknown". Written by a Science Journalist who is senior editor for Discover Magazine. She and her whole family faced lyme disease. The book covers a lot, history, science and her personal story and a few others personal stories.
Good luck,
Terry
Posts: 6286 | From Oregon | Registered: Jan 2006
| IP: Logged |
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
| IP: Logged |
Pinelady
Frequent Contributor (5K+ posts)
Member # 18524
posted
Well I hope not to the neurologist....
-------------------- Suspected Lyme 07 Test neg One band migrating in IgG region unable to identify.Igenex Jan.09IFA titer 1:40 IND IgM neg pos 31 +++ 34 IND 39 IND 41 IND 83-93 + DX:Neuroborreliosis Posts: 5850 | From Kentucky | Registered: Dec 2008
| IP: Logged |
posted
I am here. I changed my account. I mistakenly used my nickname.....
When I spoke to the doctor yesterday he is saying that I am most likely going to need IV treatment?
Isn't that what a ILAD doc would do? Or would they be doing something in addition?
Are LLMD's the same as ILAD's?
Sorry again that I changed but I realized after having my nickname is not good...!
Can find me under here going forward.
I am suppose to go to the neurologist on Thursday.
The doctor said they want to do the spinal tap to see how bad the lyme has effected my CNS. Is that right?
He does not seem to be denying that I have lyme and need treatment. It seems like he does not want to be the one and that is why he is sending me to the neuro.
I spoke to the neuro's secretary a few times and she is leading me to believe that I am going to get the treatment.
I am seeing this neuro because my father inlaw has huntingtons and see's 1 himself and she recommended him because she knows my story.
She said he will take care of me. So I am not sure, very confused.
I never expected to ever have this kind of disease. I already have heart disease and broke my neck.
Makes me wonder sometimes.
So should I not go? Should I go and see if he is going to treat me like I am suppose to be treated?
Does it make a difference that he speacilizes in HIV and Lyme?
I am so confused. This is all new to me.
-------------------- Diagnosed 11/29/10 10 bands reactive IGG 3 bands reactive IGM Posts: 46 | From Mass | Registered: Dec 2010
| IP: Logged |
sixgoofykids
Honored Contributor (10K+ posts)
Member # 11141
posted
Wait, HIV and Lyme? Is this doctor in DC? If it's Dr. J in DC, yes, go.
Otherwise, you likely won't be treated long enough by a regular doctor. They will treat with IV but usually for only 28 days or so.
If you go to www.ilads.org there are treatment guidelines that you should read. They explain a lot about diagnosing Lyme.
None of us expected to have this kind of disease. But you can get better, hang in there.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
| IP: Logged |
posted
I just sent an email to ILADS.org to get a listing of doctors in my area.
A few of you have sent me PM's with a lot of info! thank you so much!
I really am hoping to find someone that takes insurance.
The doctor is not in DC he is in MA. I will PM you
-------------------- Diagnosed 11/29/10 10 bands reactive IGG 3 bands reactive IGM Posts: 46 | From Mass | Registered: Dec 2010
| IP: Logged |
Pinelady
Frequent Contributor (5K+ posts)
Member # 18524
posted
I would like to tell you--I do believe IV would have killed me early on....
So just be aware there is such as thing as getting your loads down before IV....
I think it could be done correctly--by replacing electrolytes, support by many means including plasma exchange, etc...
But the facts are most do not consider Lyme patients to be sick...
When in fact we are soooooo sick....
-------------------- Suspected Lyme 07 Test neg One band migrating in IgG region unable to identify.Igenex Jan.09IFA titer 1:40 IND IgM neg pos 31 +++ 34 IND 39 IND 41 IND 83-93 + DX:Neuroborreliosis Posts: 5850 | From Kentucky | Registered: Dec 2008
| IP: Logged |
posted
Since July 09 I have had 2 brain MRI's, 2 spinal MRI's, 1 CT scan, 2 24 hour EEG's, pain management, steriod spinal injections, diagnosed as migraine varient and fibromyalgia.
Put out of work 4 times in 15 months. Just lost my job this last time..
Almost did cervical surgery. I broke my neck in 03 and because of the pain I have been having in my upper back, neck, and shoulders they almost did surgery..
And FINALLY was tested for lyme Nov 2010!
And here I am now..
-------------------- Diagnosed 11/29/10 10 bands reactive IGG 3 bands reactive IGM Posts: 46 | From Mass | Registered: Dec 2010
| IP: Logged |
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)
WOW.![[Frown]](frown.gif)
(not really you) Just everything!
![[cussing]](graemlins/cussing.gif)
![[rant]](graemlins/rant.gif)
![[shake]](graemlins/shake.gif)
Printer-friendly view of this topic