posted
I went to my pcp because I pulled a deer Tic off me. No rash but after 3 weeks stiff neck began. At week four I Had an elisa done. My result was <.91. Doc says it is negative. It's week five now and every joint in my body hurts. Doc gave 2 weeks of doxy at 100mg twice a day. He says this is the standard treatment for lyme. I say baloney! I asked him if I was in the equivocal range and if I was shouldn't I have a western blot. He said I in the negative range. Please help me understand if this is indeed negative.
I also want to add. In 1998 I had lyme. Went undiagnosed for almost 2 years. Finally, a dr. treated me on symptoms alone with 2 weeks of doxy.. The next year suffered with 11 different doctors. Finally, found a LLMD who did PCR. Put on I.V. Meds off and on for two years and have felt great for the past eight years. My LLMD is no longer practicing. I never had an Elisa, so I have no idea how to read one.
I am terrified that I am sick again. I wound up in the hospital with lyme menegitis 10 years ago. I can not go through this again. However, I used my G.P. in New Jersey first because this time I MUST use insurance. I am now a single mother of three and can not afford to pay out of pocket this time.
[ 06-07-2013, 05:38 PM: Message edited by: Col86 ]
Posts: 22 | From Mount Laurel New Jersey | Registered: May 2013
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posted
Sorry for the typos. Using my cell phone!
Posts: 22 | From Mount Laurel New Jersey | Registered: May 2013
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Keebler
Honored Contributor (25K+ posts)
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posted
- I need to look up the "less than" & "greater than" symbols as I'm rather dyslexic with all that. But my search at Google just overwhelmed me and am too dizzy to figure that out.
Still, you need to see a lyme literate doctor ASAP. This doctor is not one, clearly.
It certainly sounds as is you could have lyme and if ANY number appears on your ELISA, that says something. Still, an ELISA is not a good test, it misses alot. But when it shows something, that is very important. It can't show something that is not there.
The recent bite, your symptoms speak volumes. Other tick-borne infections also need to be considered.
As all the information coming to you may be overwhelming, take it one step at at time, with finding a good LLMD the first step.
As you are addressing this early, you have an excellent chance of success. Still, it may take a while so hold on. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
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WHY you need an ILADS "educated" or "minded" Lyme Literate doctor (whether MD or ND, or both) - starting with assessment / evaluation.
Medical "models" explained here, as to differences in the ISDA & ILADS models of assessment & treatment - and exactly why it is so very important to know the differences. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
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posted
- I am so sorry to add this yet I think it's extremely important detail. Combination treatment is vital.
How taking just doxycycline can cause Chronic Lyme - so you need to find a real LLMD and get a proper assessment & (if determined) a proper combination / rotation protocol:
Topic: replication within cystic forms of lyme -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
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posted
- As lyme (which is highly likely in your case) is a very toxic infection and any antibiotic can be a bit hard on the liver, it's important to add some liver support.
posted
Thank you for all the great info. I'm still confused if my elisa is negative or equivocal.
Posts: 22 | From Mount Laurel New Jersey | Registered: May 2013
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Keebler
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posted
- Equivocal IS positive. Just not by CDC standards. If it shows ANYTHING, it's "seeing" something.
Even a negative score is often not negative at all. Or it can be a negative TEST but the test method is terribly inferior and inaccurate.
The magic number at which the CDC declares a positive ELISA means very little. They pretty much try to talk everyone with a positive ELISA into the "false positive" lie, anyway.
Still, I do hope someone comes along you can tell you what the code means on your test. I can't believe that I just can't figure out which direction a simple sign points but it literally flips around in my brain.
Still, you know that you still need to find a real lyme literate doctor ASAP. The test score will not change that fact. Your symptoms, timeline, are classic for lyme.
I wish you the best. I see that you have posted to find a LLMD. Hope that goes very well. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
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posted
- Oh, you say your neck hurts. Be sure to NEVER let any practitioner suddenly twist your neck. That's a huge "never" with lyme as the spinal cord is very often so swollen and it can cause damage in various ways and make neuro-lyme worse.
IF you have any body work, gentle is the key. UPLEDGER or FELDENKRAIS are two safe gentle styles. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
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posted
- Many with lyme are deficient in the mineral, magnesium. Lyme sort of "steals" it so our body is left without. That can cause a lot of pain and other symptoms. To help relieve pain (while also addressing lyme), most with lyme are instructed to supplement with magnesium.
It can make a wonderful difference in overall comfort level.
Topic: MAGNESIUM LINKS sets -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
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posted
- For other posters:
" . . . still confused if my elisa is negative or equivocal . . . ." with score of: <.91
? -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
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posted
- It's coming back to me. And I finally found a website I can read, thank you, Wiki.
The direction of that arrow means "less than" than the magic number required of .91 -
It would appear to be a negative test, accoring to the parameters of that test and the CDC (which are filled with errors). -
Posts: 48021 | From Tree House | Registered: Jul 2007
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posted
Thank you!
Posts: 22 | From Mount Laurel New Jersey | Registered: May 2013
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t9im
Frequent Contributor (1K+ posts)
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posted
Hi Col86:
Unfortunately you are entering the world of the Lyme controversy. The controversy starts with the diagnosis and then goes into the treatment.
You are in the early stages of the diagnosis controversy. The CDC and IDSA set up a two tier structure with the Elisa as the first step. The Elisa provides a known 35%+ false negative reading (especially if given during the 1st 6 weeks when the body may not have produced the antigens) so it is a terrible screening test.
You really need the Western Blot and request the band readings up front when the blood is being drawn.
The 2 weeks is the standard treatment but it should be more like 8 at this point with double the doxy dose.
Problem with doxy this time of year is the sun. Avoid it or you will get 3rd degree chemical burns.
-------------------- Tim Posts: 1111 | From Glastonbury, CT | Registered: Apr 2010
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t9im
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posted
You have classic symptoms but your PCP is running into the IDSA guidelines which are strictly adhered to by most MD's.
They don't realize the CDC was concerned with over diagnosis and over treatment (Steere's 1993 paper) so a process has been set up for under diagnosis and under treatment (the 1994 CDC Dearborn conference).
They know they will run into insurance reimbursement and liability issues if the stray from the guidelines.
-------------------- Tim Posts: 1111 | From Glastonbury, CT | Registered: Apr 2010
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posted
Thank you for all the great info. I edited my post. I hope the information is more helpful.
Posts: 22 | From Mount Laurel New Jersey | Registered: May 2013
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Keebler
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posted
- Bottom line: There is NO test that is 100% accurate.
Lyme diagnosis should never rely on tests. It requires a CLINICAL diagnosis.
Exposure if known (bite, not limited to ticks but also often not noticed), history of symptoms as reported to lyme literate doctor who will then simply assess your "clinical presentation".
It's what doctors used to do to diagnose: use their eyes, ears, brain.
They will pay attention to how you move in space, manage stimuli and complex thought . . . how you speak . . . your endurance . . . your body . . . .
There are certain signs that are simply classic for lyme and some that are mere hints but also extremely important to the diagnostic process.
Of course, some tests can be a good guide and, if it shows anything, that's for real. But tests can fail to "see" so that's why expert lyme doctors must use all their senses and their sense.
The timeline and the symptoms you describe are classic for lyme. I hope you find a LLMD soon. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
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posted
- I just went back up to reread your post. I failed to see some key points the first time (although you may have added those later).
I know we all say you must find a LLMD and I see that you say you MUST find a doctor who uses your insurance plan.
Now, I also see that you have a history of lyme and treatment with a LLMD.
I understand your fears, completely. I've never been able to access proper treatment for a variety of reasons so I've found other ways to do what I can.
See the "How to find a LL ND" thread below. In that set are various articles and books - and other ways that this might be addessed if you cannot find a LLMD.
You may still be able to find one who just might take your insurance, so keep trying. Ask ALL the area lyme support groups within a reasonable radius to you. -
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Keebler
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posted
- Might you know someone with a rife machine? Talk to your area lyme support groups. Some folks will be able to help you brainstorm. There is hope. Really. Always.
LL Naturopathic links here, too, with many articles and books. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Marz
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posted
My non-lyme literate PCP gave me doxy when I tested borderline at .9 on the ELISA many years ago.
Only problem was I was given too little and too late.
Be sure you get treated long term.
Posts: 1297 | From USA | Registered: Dec 2002
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poppy
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posted
The other problem is that if you have another antibody test after starting antibiotics, it may affect the result adversely.
Contact support groups in NJ, see if you can find a lyme doc who takes insurance. Do it quickly. There is a window of opportunity here, miss it and your treatment may become a whole lot longer and more expensive.
Get as much Rx as you can from current doc, tell him symptoms, and then move to someone more educated about lyme.
Posts: 2888 | From USA | Registered: Mar 2004
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posted
I second finding an llmd due to stiff neck alone with the tick bite. We know our bodies. Wish i would have sooner.
Keebler, sometimes my neck gets so out of alignment...my c2 is moving left, that i have to get chiro to move it. It will get so out that my head feels crooked and i can hardly walk.
It was my chiro who said...wait! Something is going on here. Noone should be this stiff. He recommended a full neuro work up and said then we have to look at infectious disease. When i got my lyme test he called an llmd for me. I have been wondering now if the adjustments are hurting my ligaments. PT can not move it when it happens. It is so unstable, that it doesnt take much for it to go.. Lately though with treatment of abx, i didnt need the adjustments. Except yesterday it happened again with aggressive stretching. I am wondering if i need the adjustment, i should ask them to use the activator.
An mri showed degenerative changes but nothing surgical at this time. But a yucky area at one level with borderline stenosis.
Do you know if chiro adjustments are contra indicated for lyme? I am adding that to the Dr. C list.
Posts: 66 | From Memphis | Registered: Feb 2013
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posted
I know I can't tolerate chiro adjustments anymore. You could try the activator and if you still end up in more pain afterward, forget it.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96223 | From Texas | Registered: Feb 2001
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Keebler
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- iluvrain,
Sorry to hear that aggressive stretching clobbered you yesterday.
IMO, aggressive stretching should NEVER be done, by anyone, ever. Gentle is the key. You don't have to work so hard or be so hard on your body. Just enjoy moving at a kind pace - for your body.
I wish I had the link for where I read this. It was a very reputable, LL author.
I also have personal experience and suffered months of damage - several times over several years - because I did not know I had lyme and, even after I did, I did not know that sudden neck twists can be damaging with lyme involved.
I have also read of many others with lyme who had similar "adjustment disasters" so it's nothing to take lightly.
The spinal cord is often swollen with lyme. That presents a danger during any sudden twists.
There are gentle methods, styles or techniques for adjustments.
NEVER have your neck or spine suddenly twisted. This is so very bad for anyone with lyme for so many reasons.
Find a DC or DO who does a more gentle technique that does NOT involve sudden twists. Some PT are trained in cranial sacral methods, too. Training matters greatly. Not just anyone can do this.
Google: UPLEDGER INSTITUTE to find professionals trained in that technque.
FELDENKRAIS TECHNIQUE can also be of help.
There may be other such as NUCCA but not all doctors who do NUCCA are necessarily gentle in all their approaches. I found that out the hard way.
Ask first and be very clear. Best to get a referral for any body work professionals from your LLMD.
The key is NO SUDDEN TWIST OF NECK OR SPINE if lyme is even suspected.
No yoga head or shoulder stands, either. Too much pressure on the spine & neck along the way.
Hanging upside down may be fine, if down properly and IF - IF - one's LLMD says it's okay and the exact technique & equipment is reviewed. Getting into that position is usually gradual and very controlled - if it's not, don't try that, either.
Dancing or sports - just don't turn and twist neck suddenly.
Driving - be careful. Be gentle when turning neck to see over shoulder. Try to move from waist a bit so that the neck does not take the full brunt of the move.
Google: Peggy Cappy, Yoga for the Rest of Us
Her style is excellent - I don't think she has any head or shoulder stands but, if so, just don't do those. Her sytle is very gradual.
Due to the muscle tightness and spasms that go with lyme, it may be very hard to "hold" an adjustment. The severe magnesium deficiency that often goes with lyme can also CAUSE the skeleton, tendons, fibers, muscles, etc. to be pulled in all kinds of contorted ways.
All the adjustments in the world may be of little or no help if magnesium (and maybe also taurine) are deficient.
And, sometimes, even magnesium is not enough but other liver support can make a difference.
Because, lyme itself can cause muscle to nearly turn to concrete. The toxins, the irritation of all the tissue - as long as lyme is in the picture, muscle tightness is usually there, too.
Parasites that often travel with lyme can do this, too, the muscle "arrest" sort of thing.
Many report that after appropriate and successful treament for lyme & all that goes with it, their pulled muscles, out of kilter vertebrae all behave as they should.
But, along the way, to help reduce the toxicity that interferes, liver support is also a great helper. -
[ 06-08-2013, 02:49 PM: Message edited by: Keebler ]
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Keebler
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posted
- Additional body work links are further down in this thread:
Integrative / Holistic M.D., etc. (Be aware that those in this category can have various levels of formal herbal &/or nutritional education, perhaps even just a short course. Do ask first.)
Links to many articles and books by holistic-minded LL doctors of various degrees who all have this basic approach in common:
Understanding of the importance of addressing the infection(s) fully head-on with specific measures from all corners of medicine;
knowing which supplements have direct impact, which are only support and which are both.
You can compare and contrast many approaches.
BASIC HERBAL EDUCATIONAL & SAFETY links,
BODY WORK links with safety tailored to lyme patients . . . . -
Posts: 48021 | From Tree House | Registered: Jul 2007
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posted
The issue with the neck is right, after being jolted banging into a doorway while half asleep going to bathroom, started having Pains where not before, went to chiro, he did not do sudden manipulation but worked out tight areas, 2 weeks later lyme flared up like never before and in a real viscious way. it's just as well, get them out of hiding and BLOW THE BUGS AWAY with homeopathics, antibiotics,etc. I knew it hd to be lyme when within hours of rubbing LYM over all sore areas, got very feverish and chilled. so I'm moving one from there, tough last five days w fever, 100-101, etc but am getting better now and happy the bugs have been jerked outa hiding.
Posts: 532 | From Texas | Registered: Oct 2004
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