I have been having almost every symptom on the Lyme list, starting around 2000. But back then they were just what I call the "annoyance" symptoms like ringing in my ears and floaters, various roaming sore patches on my body that come and go. As they started to get worse around summer 2005 (shortness of breath, tingling and pin pricks in my hands and feet, heart palpitations, electrical sensation in my arms and head, sunburn sensation - I went to my primary care doc and requested a lyme test. It came back positive for the acute but not the latent, so he put me on 4 weeks of Doxcycline. This did nothing but make me feel worse...When the symptoms started getting even more scary (extreme weakness in arms/legs (mostly left), random twitching pretty much everywhere, sore hips, shoulders, back, arms, etc. I requested to see a specialist who was a Rheumatologist. He gave me the same explanation as to why he does not believe I have Lymes - the latent test would have shown it, especially since I had symptoms from back in 2000. So he's running all the auto-immune disorder blood tests as we speak. For me, the bottom line is that I want to know what's wrong with me. I'll gladly submit to all these tests and hope they're negative. Because if they are at least I can rule out SOME bad things. But after this long-winded explanation, I just want to better understand whether my doctor's interpretation of the test results holds true...He told me that the tests are EXTREMELY reliable. Thanks for your input!
Posts: 22 | From Philadelphia, PA | Registered: May 2006
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treepatrol
Honored Contributor (10K+ posts)
Member # 4117
posted
I went to my primary care doc and requested a lyme test. It came back positive for the acute but not the latent,
What hes saying is IGG or IGM.
If your possitive on either you have LYME not Lymes no s.
Borrelia burgdorferi
You need a LLMD badly. You can post for one in the Dr section.
-------------------- Do unto others as you would have them do unto you. Remember Iam not a Doctor Just someone struggling like you with Tick Borne Diseases.
AliG
Frequent Contributor (1K+ posts)
Member # 9734
posted
You should ask how many people have been told that these tests are extremely reliable (How many times?), only to be told later that they've had it for 15-20 years.
Post in the seeking drs. section, with the area in the subject line, that you need an LLMD.
Get an LLMD and get tested right, by a specialized lab. You could also have co-infections which haven't been tested for.
I'm making an assumption here, sorry. What lab was used? This just sounds too familiar.
-------------------- Note: I'm NOT a medical professional. The information I share is from my own personal research and experience. Please do not construe anything I share as medical advice, which should only be obtained from a licensed medical practitioner. Posts: 4881 | From Middlesex County, NJ | Registered: Jul 2006
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posted
"It came back positive for the acute but not the latent, so he put me on 4 weeks of Doxcycline. This did nothing but make me feel worse...When the symptoms started getting even more scary (extreme weakness in arms/legs (mostly left), random twitching pretty much everywhere, sore hips, shoulders, back, arms, etc."
That, in my opinion, was a major herx. It is confirmatory for Lyme.
Your next test for Lyme needs to be from Igenex labs in CA.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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bettyg
Unregistered
posted
quote:Originally posted by Emmaleen0722: Hello everyone,
I have been having almost every symptom on the Lyme list, starting around 2000.
But back then they were just what I call the "annoyance" symptoms:
like ringing in my ears and floaters, various roaming sore patches on my body that come and go.
As they started to get worse around summer 2005 (shortness of breath, tingling and pin pricks in my hands and feet, heart palpitations, electrical sensation in my arms and head, sunburn sensation -
I went to my primary care doc and requested a lyme test. It came back positive for the acute but not the latent, so he put me on 4 weeks of Doxcycline.
This did nothing but make me feel worse...When the symptoms started getting even more scary
(extreme weakness in arms/legs (mostly left), random twitching pretty much everywhere, sore hips, shoulders, back, arms, etc. I requested to see a specialist who was a Rheumatologist.
He gave me the same explanation as to why he does not believe I have Lymes - the latent test would have shown it, especially since I had symptoms from back in 2000.
So he's running all the auto-immune disorder blood tests as we speak . For me, the bottom line is that I want to know what's wrong with me.
I'll gladly submit to all these tests and hope they're negative. Because if they are, at least I can rule out SOME bad things.
But after this long-winded explanation, I just want to better understand whether my doctor's interpretation of the test results holds true...He told me that the tests are EXTREMELY reliable. Thanks for your input!
Follow LYMETOO's advise; and get COPIES OF ALL TESTINGS/MEDICAL NOTES/LABS/X-RAYS for your personal files ok!
What lab did your testing? elisa or western blot igm & igg ????
I don't know what the details are of the test that was positive, or where it was sent. But the Rheumatologist hinted the other day that there were "other" labs that people used which were not standard, or somehow outside the recognized standard testing labs...His tone was negative.
Another thing that frustrates me about this is that I thought he would also take into account my risk factor. I was raised in a small town in the adirondacks and have visited there every year since I moved away. Plus two of my children have been treated for the bulleye rash, one as recently as last year. My primary care doctor told me it was a "really good thing that I wasn't going directly to a Lyme doctor" because they often drain people's wallets (don't accept insurance) and give false hope to people who have other very real health issues.
He also said that I would ALWAYS test positive for Lyme from now on since I've been exposed, so there was no need to run any more Lyme tests.
How are we as patients supposed to be able to get tested through these specialized labs?
Maybe I should join a support group.
Posts: 22 | From Philadelphia, PA | Registered: May 2006
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treepatrol
Honored Contributor (10K+ posts)
Member # 4117
posted
I think you need to think for yourself read the Newbie Links and when your through Get a LLMD and get the heck away from these Dr's that told you you didnt have lyme even though you had a positive test next they will tell you it was a false possitive test.
Get a Lyme Literite Medical Dr one that has treated tons of Lyme patients and knows all the idiosincracies that lyme can present.
Good Luck
Heres a link to a Pdf File that will show you what your up against.
TRhe sooner you begin treatment the better. Besides Lyme should be diagnosed clinicaly by symptoms and reactions and if you are near a tick area which really is getting to the point that living or visiting tick infested areas dosent matter they have found {{{Borrelia ie lyme}} in mosquitos,fleas,sandflies,black flies,mites.
The longer you wait to get treated correctly the worse it will be to rid yourself of Lyme.
-------------------- Do unto others as you would have them do unto you. Remember Iam not a Doctor Just someone struggling like you with Tick Borne Diseases.
posted
Same problem here. Positive IGM, negative IGG. Primary doesn't think it's lyme because of it.
Spoke with 2 other doctors since, both told me that my doctor doesn't understand autoantibodies, in some people and some bacteria, the ONLY antibodies that will be positive after a while are the active infection antibodies.
I believe that another example of this is paro-virus (sp?)
I no longer live in the US, but am flying in to consult an llmd, I just don't see how it will be possible to get treated properly otherwise.
One other thing, if the doctor wants to give you a trial of steroids to "cover" the autoimmune avenue, I would refuse. Steroids are bad for lyme. I came off of them with paralyzed toes and possible encephalitis.
Posts: 169 | From former Philadelphian | Registered: Jun 2006
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Aniek
Frequent Contributor (1K+ posts)
Member # 5374
posted
If you post in the seeking doctors section, you will find a doctor who really understands and treats chronic Lyme.
We use the term LLMD, which means Lyme Literate Medical Doctor. It's not an official term, but used in the Lyme community.
This is they type of doctor your rheumatologist was "warning" you about. There are many, many doctors who do not believe in chronic Lyme and will stear you away from that diagnosis.
My LLMD takes insurance. I pay $10 for every visit. There are some who do not take insurance, sometimes because they do a lot of alernative and integratie medicine which is not covered.
Also, Lyme is a clinical diagnosis. According to the CDC, which many doctors rely on to tell people they don't have Lyme, prior exposure to ticks should be taken into consideration in diagnosis.
You are from an endemic area, have had a positive test and have symptoms. Find a doctor through this site and see what that doc says.
-------------------- "When there is pain, there are no words." - Toni Morrison Posts: 4711 | From Washington, DC | Registered: Mar 2004
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shazdancer
Frequent Contributor (1K+ posts)
Member # 1436
posted
You say you have most of the symptoms on the Lyme list. They are in all different categories (breathing, heart, nerves, jonts). I would suspect Lyme disease.
You tested positive on the Western Blot for an acute infection, but not a latent one. This is not unusual -- Lyme can fool the immune system in different ways, so patients test negative. Then the bacteria come out of hiding and the antibodies recognize them -- so you can test negative for a latent infection, and positive for a recent one, even though you have had Lyme for awhile. I would suspect Lyme based on your positive test.
Your rheumatologist doesn't want you to use Igenex, because he read that Igenex "tests everyone positive." It doesn't. It gets more positives because it uses 2 different strains for comparison, while most labs use only one strain. Igenex has undergone rigorous inspections by the state of CA because of such accusations. They passed with flying colors.
BTW, since you already have a positive test, I wouldn't recommend testing again, unless your doctor sees a good reason to.
Your rheumatologist spoke about Lyme doctors costing a lot of money, and not taking insurance. Sadly, that is often the case. They don't take insurance because the insurance companies will not pay for the long-term antibiotic treatments that might be necessary to get better.
Hope that helps you. So sorry to hear you are in such distress, and not getting the help you need.
Regards, Shaz
Posts: 1558 | From the Berkshires | Registered: Jul 2001
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TerryK
Frequent Contributor (5K+ posts)
Member # 8552
posted
There is a huge political battle going on regarding lyme disease. Most in the medical profession follow the IDSA (Infectious Disease Society of America) because that is who they would normally follow when it comes to these types of diseases.
The lyme leaders in the IDSA camp have insurance company ties, conflicts of interest regarding their own and the CDC employee patents for lyme testing in addition to their own personal and political reasons for publishing the guidelines that they do regarding diagnosis and treatment of lyme disease. Most doctor's do not have a clue about this and simply rely on the group that they would normally follow for these types of diseases.
Several States have had to pass laws in order to allow LLMD's to treat chronic lyme patients without fear of losing their license.
Those of us who are infected with this complex, underfunded and misunderstood illness are left without diagnosis and treatment while insurance companies and others who have a financial interests are allowed to dictate policy based on little to no science while ignoring much of the studies that do exist.
Most LLMD's do not take insurance because they are told by insurance companies, including medicare, how they must treat lyme disease if they are to be reimbursed. Needless to say, their enforcement of how lyme should be treated is not in the best interest of the patient.
LLMD's are often harassed by insurance companies, even annonymously turned into medical boards where they are threatened with the loss of their medical license. Hard to believe that this is actually happening and that people are suffering and dieing because of a few selfish individuals who have power, but it is true.
This is over a decade old but unfortunately still holds true today. There have been many other speeches before congress since then that are in a similar vein but this one say's it all so well. BTW - this doctor was hauled up before the medical board within 2 months of giving this congressional testimony. http://www.jersey.net/~joebur/conspire.htm
It is in your best interest to research this issue and decide for yourself. Terry
[ 30. August 2006, 06:01 PM: Message edited by: TerryK ]
Posts: 6286 | From Oregon | Registered: Jan 2006
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valymemom
Frequent Contributor (1K+ posts)
Member # 7076
posted
Em
Everyone above has given you sound advice based on the combined experiences of all of us who have found this great net.....lymenet.
Hard to believe that a doctor/specialist could be wrong and ignorant of the complexities of this disease that causes chronic, varying symptoms. My son went to Johns Hopkins and area neurologists. No one ever connected the dots or suggested a lyme test....a psychiatrist was suggested, though.
Yes, contact the PA support group.....look at the lymepa site and canlyme site along with the newbie threads.
Keep us posted.
Posts: 1240 | From Centreville,VA | Registered: Mar 2005
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