I'm scheduling an appointment with a LLMD, but meanwhile I'm seeing a new neurologist (yes, I know, they are not good at it... But it might not be Lyme, so it's better cover from all sides...). Anyway, just got some of the results and all were negative, included Lyme. I know, probably they did an ELISA... Anyway, I'm waiting for a second MRI to see if it isn't MS, and I'll keep my appointment with the LLMD.
My big question is: how can I know that I really have Lyme?? If I take antibiotics and don't get better, and don't get a positive result (WB), how can I know? As I see here many people with Lyme are taking meds for over an year and didn't improve at all... So how about if I take meds and don't get better and don't get a positive exam?? I'm terrified with all this...
posted
If you take antibiotics and have Lyme, you will herx. That means that you will feel absolutely horrid. That is the meds working on the destroying the spirochettes.
You should have a Western Blot done by a reputable lab, preferably Igenex. Remember, Lyme is a CLINICAL diagnosis.
-------------------- "Few of us can do great things, but all of us can do small things with great love". Mother Theresa
Aniek
Frequent Contributor (1K+ posts)
Member # 5374
posted
I just knew. Granted, I had the EM rash around a bug bite when I was 12 and symptoms started 18 months later. So that was a hint.
Part of it is a gut feeling. Part of it is trusting your doctor. Part of it is seeing where the treatment takes you.
I noticed a difference on abx. I herxed. I also saw an improvement after about 6 months. People suddenly told me I was healthy looking. I never really I wasn't before
-------------------- "When there is pain, there are no words." - Toni Morrison Posts: 4711 | From Washington, DC | Registered: Mar 2004
| IP: Logged |
quote:Originally posted by hurtingramma: If you take antibiotics and have Lyme, you will herx. That means that you will feel absolutely horrid. That is the meds working on the destroying the spirochettes.
You should have a Western Blot done by a reputable lab, preferably Igenex. Remember, Lyme is a CLINICAL diagnosis.
I agree...and I DO think you'll know, as most people DO herx.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
| IP: Logged |
david1097
Frequent Contributor (1K+ posts)
Member # 3662
posted
It is a question of what can be done to try to aleviate the symtoms or at least the symtom progression. This is the point that many do not understand.
If all other options are exhausted, there are two approaches to the problem....
One. Let the patient suffer and degrade then hope for the best....
Two. Use your best CLINICAL judgement and with the patients consent do a trial treatment.
Option Two requires a much more brave Dr and are commonly found but in many last resort cases does result in improvement.
The testing for Lyme is far from perfect, the symptoms from lyme are far from definative so in some cases, lyme or lyme like diagnosis may be a somewhat fuzzy conclusion. If it is Lyme then antibiotic treatment WILL caus an improvement, perhaps it may re-occur after treatment is stopped but an improvement none the less.
All of this being said, you must also remember that there are LOTS of other hard to detect diseases that can cause neurological symptoms that do reposnd to antibiotics. To a large degree I myself beleive that this fact accounts for a lot of patients that do not present with "classical" lyme symtoms. I personally know some people who have severe neurlogical disease but did not have the classical lyme symtoms. They all responded well to anti biotics and moved on to a full recovery.
ON THE OTHER HAND.... There are also LOTS of diseases that do not respond to antibiotics,ie,autoimmunue, viruses and protozoal infections. I also believe that this accounts for some of the lyme population that do not respond to antibiotic treatment. Obvioulsy, in these cases, antibiotics are effectively useless except as a prophlatic meaure aginst more common infections that can allow to occur as a result of neurological impairment.
On the THIRD HAND(????) there are those that are infected with LYME + one of the above.... In these cases, it has been proven that the symptoms are worse than the lyme and other infection alone. In this case, the best approach is again antibiotics since at a minimun the lyme will be knocked down and at best the drug will affect both infections.
With ths simple model, there is a population (the second case) that is not helped by antibiotics AT ALL. Still unless it is tried this conclusion can not be reached. In this group I am sorry to say that the treatment has no effect and that they should move on to trying symptomatic treatment. I am sure that some people on lymenet are in this boat.
In the end, if there is some evidence, clinical or otherwise to suggest that antibiotics will help, then why not try it?
As a final note, if one is trying to figure out if it is a auto immunue disorder (MS like etc.) or an infection, steroids will cause short term improvement with both conditions but will result in the auto immunue getting better allowing one to stop taking them *BUT* in the case of infection the infection WILL GET WORSE with the need for ever increasing follow up dosage of steroid to effect a symptom resolution. If the later result is the case, one should perhaps look at the three infectious modalities (bacteria, virus and parasite) and try treatments for each in a controlled fashion to try to figure out the cause. Sad to say but the tests for many infections are poor to non-existent.
This is what I would do, and in fact is what I did.
I hope it my scriblings are decipherable and are of some help.
Posts: 1184 | From north america | Registered: Feb 2003
| IP: Logged |
posted
I think most of us have been in your shoes. Us folks out here in the West have a really hard time getting a diagnosis and help. So, we have had to figure out things ourselves without much help.
It is wise to cover all your bases and check out different things. I figured out it was lyme because I had most of the symptoms on the checklist and I had a terrible illness with fevers and chills like mono for months. So I knew it had started with an infectious disease. No rash though.
You should keep a journal of symptoms. See the patterns that evolve. If it is an infection it will go through cycles of symptoms.
Try antibiotics and see if you herx. I herxed right away and it was BINGO! There's my answer.
All the things that crossed my mind as possible reasons for my illness were everything from brain tumor to heavy metal poisoning to solvent exposure to mold exposure. What I found was that it was always lyme that mattered the most. Taking the antibiotics always made the biggest difference.
Posts: 293 | From healdsburg, ca , sonoma | Registered: Feb 2005
| IP: Logged |
bettyg
Unregistered
posted
quote:Originally posted by rcs2: Hi there,
First I'd like to thanks everybody that has been helping me, I'm really happy I found this site.
I posted a question last month (http://flash.lymenet.org/ubb/ultimatebb.php?ubb=get_topic;f=1;t=045936),
and I'm really considering I might have Lyme.
I'm scheduling an appointment with a LLMD, but meanwhile I'm seeing a new neurologist (yes, I know, they are not good at it... But it might not be Lyme, so it's better cover from all sides...).
Anyway, just got some of the results and all were negative, included Lyme.
I know, probably they did an ELISA... Anyway, I'm waiting for a second MRI to see if it isn't MS , and I'll keep my appointment with the LLMD.
My big question is: how can I know that I really have Lyme??
If I take antibiotics and don't get better, and don't get a positive result (WB), how can I know?
As I see here many people with Lyme are taking meds for over an year and didn't improve at all...
So how about if I take meds and don't get better and don't get a positive exam?? I'm terrified with all this... Thanks again!!
I suggest you go to TREEPATROL'S NEWBIE SITES listed above. Go down thru it until you see info from ART DOUGHERTY and 300 other illnesses mimic lyme ... he did have a lot there comparing lyme vs. ms, etc.
Check it out. If you don't find it there, look at some of his other stuff .... very informative! Bettyg
Please hit your enter button more so we don't have long, continuous text. Neuro lymies like myself can not comprehend or read it the way you typed it ok. Thanks for helping us, help you!
IP: Logged |
dontlikeliver
Frequent Contributor (1K+ posts)
Member # 4749
posted
Lyme can cause lesions that look like MS, how will a Neurologist who is not Lyme literate know if it's not Lyme?
Posts: 2824 | From The Back of Beyond | Registered: Oct 2003
| IP: Logged |
posted
I also question the lyme dx. After being told for years that it was something else, including MS, it's hard to accept it might be lyme.
My tests from Igenex are not positive but I do have several positive bands and many symptoms. I am currently being treated by an LLMD.
I was treated for many years with steroids and other harmful meds. Nothing completly made me feel better. Even though I sometimes doubt my dx I continue with treatment. I figure since no one can say to me "your positive for this and we will treat you" that I have to explore different avenues for myself. If doctors want to experiment and give me harsh drugs than why not try abx.
All I know is that the abx have alleviated many of my symptoms. So, whether it is lyme or creepy crud or whatever name it wants to be called...something is working.
TheCrimeOfLyme
Frequent Contributor (1K+ posts)
Member # 4019
posted
Its a judgment call, a clinical diagnosis. Most of us who are here, have been through gammuts of testing and were told we were nuts. Or in my case, the whole problem with me was that
I was nuts/had too many kids/didn't have enough intercourse/was under stress/ and needed anti depressants. And that was after seeing a zillion doctors ( one of whom told me I had MS and needed to get my affairs in Order).
My honest advise is to try the treatment. You should feel something- whether it be a worsening of symptoms from a herx or a SLOW improvement.
I stayed on abx for 3 years straight and questioned my diagnosis all the time, and in the end, I was about 75 percent better and STILL struggling
which is when I found that tada, I did have two things non lyme related that were holding me back. I took care of them and live a pretty normal life.
I don't suggest anyone NOT see a neuro, etc. BUt I do say, if you think you have lyme, AT LEAST try the treatment. What have you got to lose? your health?
-------------------- You want your life back? Take it. Posts: 3169 | From Greensburg, Pennsylvania | Registered: Jun 2003
| IP: Logged |
posted
Thank you so much for taking your time and replying my post! All the information was really helpful, and sometimes, even if you know the answer, it makes you feel better seeing that other people thinks in the same way (and thanks God, I'm not crazy, nuts, etc... - not yet!). Will keep you all posted! Thanks!!
quote:Originally posted by kitkat32: My tests from Igenex are not positive but I do have several positive bands and many symptoms. I am currently being treated by an LLMD.
I was treated for many years with steroids and other harmful meds.
The steroids are probably the reason your WB did not come up to completely positive. Same thing happened to me.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
| IP: Logged |
posted
Please ask your doctor to show you the MRI and the exact reason on the MRI that proves to him that it is MS. Then ask him to show you the difference between that and a lyme dx from an MRI. We all would love to see the answer!
Posts: 219 | From Aubur,Al. USA | Registered: Oct 2004
| 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)
![[bonk]](graemlins/bonk.gif)
![[Big Grin]](biggrin.gif)
![[group hug]](graemlins/grouphug.gif)
Printer-friendly view of this topic