posted
I'm so ticked off, my results were 1.13 for the Elisa so I called to see if she would order the next one, (the Western blot) since it is equivocal and the nurse apparently had stated my result was negative.
BS! I'm so sick of all of this, I just want to get a DX. I know I don't have ALS and I am certain its Lyme,
I had a steroid and an inflammatory shot a week prior, which might have affected the result but it was still NOT negative.
She doesn't know WTH shes talking about, I'm going insane. Seriously losing it.
I just want to rip her head off.
..........................................
(breaking up the post for easier reading for many here)
[ 02-03-2016, 12:51 AM: Message edited by: Robin123 ]
Posts: 27 | From Nor Cal | Registered: Jan 2016
| IP: Logged |
TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
The way to get diagnosed with lyme disease is to go to a lyme specialist. That is the only doctor who knows how to do it.
He will know what tests to order and he will know how to interpret the results.
Here is how the most famous lyme doctor in the world says the diagnosis is made:
"Lyme Borreliosis (LB) is diagnosed clinically, as no currently available test, no matter the source or type, is definitive in ruling in or ruling out infection with these pathogens, or whether these infections are responsible for the patient's symptoms.
The entire clinical picture must be taken into account, including a search for concurrent conditions and alternate diagnoses, and other reasons for some of the presenting complaints.
Often, much of the diagnostic process in late, disseminated Lyme involves ruling out other illnesses and defining the extent of damage that might require separate evaluation and treatment.
Consideration should be given to tick exposure, rashes (even atypical ones), evolution of typical symptoms in a previously asymptomatic individual, and results of tests for tick-borne pathogens.
Another very important factor is response to treatment- presence or absence of Jarisch Herxheimer-like reactions, the classic four-week cycle of waxing and waning of symptoms, and improvement with therapy." page 7
Notice the last sentence: An important factor in making the diagnosis is how you respond to a course of treatment for lyme.
You will experience nothing but frustration until you get to a lyme specialist. What has happened to you has happened to us all.
You see, the doctors in this country have been mis-educated about lyme disease by the Infectious Diseases Society of America (IDSA). So, that is why you will have problems as long as you see them.
You have to go to doctors who know the IDSA is wrong about everything regarding lyme. Such doctors often belong to the ILADS (International Lyme and Associated Diseases Society).
These are the 2 camps: IDSA and ILADS. Cross over to the ILADS camp and you won't get ticked off anymore. You will be talking to a doctor who KNOWS how to diagnose lyme (not by any test) and knows how to treat it. These docs are expensive, but they are well worth it. You will no longer go insane.
As Burrascano says, the diagnosis is made by the clinician (the doctor) after listening to your symptoms, taking your medical history, and looking at appropriate test results.
Then, you are given a trial course of lyme treatment (antibiotics) and your reaction is observed/recorded.
This is how lyme disease and its associated coinfections have to be diagnosed. None of the current tests are 100% accurate.
So, go to "Seeking a Doctor" and ask for lyme specialists in your area. Go to one. You will think you died and went to heaven.
Study the Burrascano Lyme Treatment Guidelines to get your education on this disease. This way, you will understand what the doc is talking about, understand about testing,
understand his proposed treatment plan, and understand what is happening when the treatment makes you sick! Yes, sick! The dreaded herxheimer reaction.
A Boston TV station did a show on the lyme disease controversy a few years ago. Here is the Boston Chronicle video on YouTube:
I suggest you watch this video a few times. It explains the lyme disease controversy and the role the IDSA plays in making it difficult for a person to get good lyme treatment.
Glad you found LYmeNet. We will help you here all we can.
............................................
(breaking up the post for easier reading for many here)
LymeDisease.org (based in your state) - to help locate a doctor -
Posts: 48021 | From Tree House | Registered: Jul 2007
| IP: Logged |
WPinVA
Frequent Contributor (1K+ posts)
Member # 33581
posted
Good for you to insist on the Western Blot.
My ELISA was equivocal too. Thankfully they did the Western Blot and it was a raging CDC positive. I never would have known in that early stage to insist on the WB, like you are.
Agree with the others that you really do need to find an LLMD though. Even if you convince your current doc to do the right test, they aren't going to know how to treat.
Also, you need to be evaluated for co-infections... another reason you need to see an LLMD.
Posts: 1737 | From Virginia | Registered: Aug 2011
| IP: Logged |
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
| IP: Logged |
Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- oatez,
there is no reason for a repeat Elisa for your wife. Once positive, that's clear - especially with symptoms. Repeat Elisa will likely be false negative since, even with very active lyme, they can often miss seeing it.
You say you know the Elisa is not reliable - it's just that I'm puzzled as to why it was even repeated - unless a regular doctor insisted - &/or maybe you were just hoping for that so some treatment might be available.
It seems very unusual for any LLMD to do a follow up ELISA.
I hope your wife is able to see a real ILADS educated lyme literate doctor.
There is no test that can prove lyme is absent or gone. Symptoms matter most.
A LLMD is one who has treated Lyme disease and the co-infections which come with it for many years and has gotten patients well. A good one will follow Dr. B's Guidelines, the "gold standard" for Lyme treatment.
I know you are still trying to getting a diagnosis for Lyme, but please read the following from Dr. B's Guidelines regarding steroids:
"More severe illness also results from other causes of weakened defenses, such as from severe stress, immunosuppressant medications, and severe intercurrent illnesses.
This is why steroids and other immunosuppressive medications are absolutely contraindicated in Lyme. This also includes intra-articular steroids."
Posts: 8981 | From Illinois | Registered: May 2006
| IP: Logged |
there is no reason for a repeat Elisa for your wife. Once positive, that's clear - especially with symptoms. Repeat Elisa will likely be false negative since, even with very active lyme, they can often miss seeing it.
You say you know the Elisa is not reliable - it's just that I'm puzzled as to why it was even repeated - unless a regular doctor insisted - &/or maybe you were just hoping for that so some treatment might be available.
It seems very unusual for any LLMD to do a follow up ELISA.
I hope your wife is able to see a real ILADS educated lyme literate doctor.
There is no test that can prove lyme is absent or gone. Symptoms matter most.
Keebler - My wife is being treated by lymemd. Her symptoms are joint pains which spread all over between Apr - Aug 2015. Pain is persistent. Saw a rheumatologist back then who could not find any abnormalities, except for the positive Elisa back in July. The rheumy said it was false positive due to negative reflex WB thru LabCorp. No bands reactive. I know LabCorp isn't good for lyme, hence more extensive testing in ensuing months.
We saw two llmd's and both have been very cautious with diagnosing lyme. Lymemd is a top-notch doc so we've stuck with him.
My wife has been on abx since Sept, herbs since Oct, and hasn't reacted in ways usually associated with treating lyme. Hence the repeat in testing.
Lymemd also conducted WB thru MDL and in early Nov 2015 showed bands IGM 41, and very minimal reactivity to 34 and 23. Can barely see the lines, but MDL noted it. Zero IGG. The repeat WB thru MDL in late Jan 2016 now show zero IGM bands reactive. Zero IGG.
C6 in early Nov 2015 showed 0.11 (negative). C6 in late Jan 2016 shows 0.10 (negative).
Negative blood smear thru lymemd.
Igenex in Oct 2015 showed IGM 41++, 34 IND and 39 IND. IGG 41 IND an 31 IND. Have not done a repeat on Igenex. I know some of these bands are specific to BB.
My wife just did an EMG per lymemd's orders, and he stated if she comes back with nerve abnormalities, it will support his lyme diagnosis. I am awaiting the results.
Multiple negatives on RF and ANA, IGG EBV, IGG myco pneumonia and negative for many other viruses and bacterial infections thru other docs.
All co-infections thru Igenex negative. Co-infections thru MDL negative.
It's very puzzling and I suspect lymemd might be considering an alternative diagnosis. We'll be meeting with lymemd at the end of the month to go over these new results. In tandem we've also lined up a rheumatologist just in-case lymemd no longer feels we're dealing with lyme.
Sorry for getting offtrack from SwissPiggy's original post... I guess the point I'm trying to make is SwissPiggy should definitely pursue more testing, preferably thru an LLMD, and maybe even trial abx or herbal, but I'm just stating what my wife's blood work has shown.
[ 02-04-2016, 07:05 AM: Message edited by: oatez ]
Posts: 6 | From DC | Registered: Oct 2015
| IP: Logged |
posted
Update: so, I saw my PCP yesterday and since he is originally from New York he is LL. He questioned why the nurse ordered the Elisa to begin with since it's usually not accurate and, he questioned why she wouldn't do the blot to begin with since I had a tick bite two years ago. He did talk about getting me all fixed up after we get the results, as well as any results I get from the motor neuron specialist, which I hope won't be necessary if I do have Lyme,
He also stated "did anyone go over your results with you?" And I'm like what results? The test showed 1.13 which is unequivocal is there more? We then ended up not going over whatever "more" there was because we got off on another topic. Ugh. I winder what those results were?? ] Does anyone know what more there is besides the level in the Elisa? (1.13 in my case)
He ordered the Blot and he ordered co infection tests for B and E. He did say the progesterone would have affected the Elisa result, so I think that means it would've lowered the anti bodies? which if that is the case, then maybe my level would have been higher?
My blood work was also done again yesterday so it's been done three times in the past month. My lymphocytes and WBc are still low, but strangely now I have zero monocytes, and high reactive Lymphs. I am still waiting on my CRP which was high a week ago. My ALT A/G remain low. My SED rate is high.
It would be nice if I have a definite DX of Lyme before my disability paperwork gets submitted.
Posts: 27 | From Nor Cal | Registered: Jan 2016
| 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!
Printer-friendly view of this topic