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» LymeNet Flash » Questions and Discussion » Medical Questions » Help. I don't know what I've got

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Author Topic: Help. I don't know what I've got
DenisePas
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Hi everyone. My name is Denise and I'm from Toronto, Canada. My situation is this:

I had an car accident involving a deer on June 12. Since then I have developed all the symptoms of lyme disease. My doctor tested me for it and it came back positive. The test that was positive was Lyme IgG EIA. Then underneath it the Western Blot results are negative for Lyme IgG Western Blot and IgM Western Blot. My doctor then had me tested for Borrelia Burgdorferi and that has come back negative today. All my blood work is normal except for CRP which is 16.9 and the normal level should be uner 8. This indicates inflammation somewhere. My question is can I test negative for all of this and have one of these co-infections - babiosa or bartonella. Im so confused right now. Is it possible that I have lyme and have tested negative on most of the tests? Thanks for any light you can shed on this. Its all new and all greek to me at this point. Denise

Posts: 9 | From Toronto, ON | Registered: Sep 2009  |  IP: Logged | Report this post to a Moderator
Keebler
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-
Is your doctor your regular GP/PCP, and ID doctor (infectious disease specialist using IDSA or CDC criteria) or an ILADS-educated LLMD (lyme literate MD)?

Lyme tests are not that reliable but there are rarely false positives. That first positive may be correct. A negative test does not mean absence of the infection.

Some labs don't test all the bands that they should for the Western Blots - and - besides - were ANY bands positive. Overall, the test may be declared "negative" but it could still be a clue of you have some positive bands.

You need to get a copy of the actual test for your personal records.

I don't know if, in Canada, the test would be under the CDC criteria - the CDC criteria for a positive Western Blot is ridiculous.

Do you recall having had a tick on you? Oh, many people don't remember and I'm assuming that you had contact with that deer?

If you are experiencing symptoms (flu-like stuff), and you had exposure, you would do best seeing a specialist an ILADS-educated LLMD. The high inflammation could still be from the accident, but also could be from some infection.

I see that you posted on Sept. 18 in "Seeking a doctor" and that you got a couple replies and some good links. Were you able to schedule with a LLMD?

I'm really toast right now. Others will be along soon with help. See the NEWBIE thread at the top of medical forum - by Treepatrol.

Good luck.
-------

www.ilads.org

ILADS
-

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Keebler
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-

http://tinyurl.com/2dmvs2

From the May 2007 issue of Clinical Advisor (home page: www.clinicaladvisor.com )

CONTROVERSY CONTINUES TO FUEL THE "LYME WAR"
By Virginia Savely, RN, FNP-C

*****

As two medical societies battle over its diagnosis and treatment, Lyme disease remains a frequently missed illness. Here is how to spot and treat it.

Excerpts:


" . . .To treat Lyme disease for a comparable number of life cycles, treatment would need to last 30 weeks. . . ."


`` . . .Patients with Lyme disease almost always have negative results on standard blood screening tests and have no remarkable findings on physical exam, so they are frequently referred to mental-health professionals for evaluation.


"...If all cases were detected and treated in the early stages of Lyme disease, the debate over the diagnosis and treatment of late-stage disease would not be an issue, and devastating rheumatologic, neurologic, and cardiac complications could be avoided..."


. . . * Clinicians do not realize that the CDC has gone on record as saying the commercial Lyme tests are designed for epidemiologic rather than diagnostic purposes, and a diagnosis should be based on clinical presentation rather than serologic results.


- FULL ARTICLE AT LINK ABOVE.


Co-infections (other tick-borne infections or TBD - tick-borne disease) are not discussed in the Savely article due to space limits. Still, any LLMD you would see would know how to assess/treat if others are present.

====================


http://cassia.org/essay.htm

When to Suspect Lyme Disease by John D. Bleiweiss, M.D.

=====================

TESTING

You should also be evaluated for coinfections. Not all tests are great in that regard, either, but a good LLMD can evaluate you and then guide you in testing. One of the top labs is:

www.igenex.com

IGENEX

-------

Fry Labs also is said to be good for certain tests.

==================

www.ilads.org

ILADS

The International Lyme and Associated Diseases Society (ILADS) provides a forum for health science professionals to share their wealth of knowledge regarding the management of Lyme and associated diseases.


You can download GUIDELINES here from ILADS and from Dr. Burrancano - be sure to see both sets and read them all the way through:

http://www.ilads.org/lyme_disease/treatment_guidelines.html


===================

I'd advise you to purchase a DVD of the documentary "UNDER OUR SKIN" as soon as you can - or borrow a copy. It would be best if you could watch this BEFORE your doctor's appointment.

http://underourskin.com/

UNDER OUR SKIN

---

http://underourskin.com/store_home.html

To purchase DVD for home use.

===================

www.lymediseaseassociation.org

Lyme Disease Association (You can also purchase DVDs of ILADS seminars here.)

====================

Find your local SUPPORT GROUP for help in finding a doctor, etc.

www.lymenet.org/SupportGroups/UnitedStates

====================


Post in: SEEKING A DOCTOR

http://flash.lymenet.org/ubb/ultimatebb.php?ubb=forum;f=2

=====================

This book, by an ILADS member LLMD, holds great information about pharmaceutical and complementary treatments and self-care:

http://tinyurl.com/6lq3pb (through Amazon)


THE LYME DISEASE SOLUTION (2008)

- by Kenneth B. Singleton , MD; James A. Duke. Ph.D. (Foreword)

You can read more about it here and see customer reviews.

=================================


http://tinyurl.com/5vnsjg

Healing Lyme: Natural Healing And Prevention of Lyme Borreliosis And Its Coinfections - by Stephen Harrod Buhner

Web site through: www.gaianstudies.org/lyme-updates.htm

==================================


http://tinyurl.com/5drx94

Lyme Disease and Modern Chinese Medicine - by Dr. QingCai Zhang, MD & Yale Zhang

-web site: www.sinomedresearch.org and use "clinic" and then "clinic" for the passwords or call Hepapro through www.hepapro.com

====================

http://flash.lymenet.org/scripts/ultimatebb.cgi?ubb=get_topic;f=3;t=015820

SUCCESS STORIES Thread
-

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wtl
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Did anyone suggest that you have a CT scan or an MRI just to make sure that you don't have any physical brain damage? The shock or bumping of head could cause inflammation in the brain tissue as well.

From what you mentioned, it might be more important you have that eliminated first.

It will be quite a stretch to say that a car accident can directly cause Lyme disease, but it could potentially bring it out that was already there, I suppose.

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Abxnomore
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Yes it is possible to have lyme and co infections and test negative on all tests. Testing is less than 30% accurate, thus making Lyme and co-infections a clinical diagnosis meaning based on symtoms.

It is very possible that the trauma and stress of the accident could have activated a dormant infection or exacerbated minor symptoms that, at the time, did not add up and have now come out in full force.

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bettyg
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welcome denise [Smile]

could you break up your post in shorter paragraphs and double space between each one for us severely neuro folks who can't read or comprehend as is.

then we can assist you; please use my guidelines below, and a huge thanks [Smile] hugs


Welcome to Lymenet! I'm so glad you found us! You've come to the right place for education and support!

The following is some links that may be helpful to you:

Lyme Disease and Co-Infection Symptoms
http://flash.lymenet.org/ubb/ultimatebb.php/topic/1/81386


Dr. Burrascano's most recent "Diagnostic Hints and 2008 Treatment Guidelines for Lyme and Other Tick Borne Illnesses" http://www.ilads.org/lyme_disease/treatment_guidelines.html


Pages 17-19 discuss Adult and Kids Treatments
http://flash.lymenet.org/scripts/ultimatebb.cgi/topic/1/80440?#000006


Dr. B's Supplement List
http://www.lymepa.org/Nutritional_Supplements.pdf


``Making the most of your LLMD visit''
http://flash.lymenet.org/scripts/ultimatebb.cgi?ubb=get_topic&f=1&t=020605#000005


New Member Learning links:
http://flash.lymenet.org/ubb/ultimatebb.php/topic/1/29917


Link to Turn the Corner Foundation: Good info and contacts for finding a good LLMD. http://turnthecorner.org/lyme-disease-quick-facts.htm


People seeking doctors might be able to get help from their state online information and support group. Nearly 3,400 people belong to state groups. Some of the groups are small but more than 20 of them have 50 or more people and seven have over 100.

The groups are moderated and you have to apply. Most don't allow doctor names, but once on the group, you can ask for doctors in a certain area and ask people to email you privately.

To find your state group, go to
http://health.groups.yahoo.com/group/statenamelyme

Type your state name and lyme as one word, like this -
http://health.groups.yahoo.com/group/newyorklyme

South Carolina is the only state that needs a hyphen between the statename
and lyme, e.g. http://health.groups.yahoo.com/group/southcarolina-lyme

This explains the medical politics around Lyme, and why you need an ILADS-educated or ILADS-member LLMD (and there are also some ILADS-member LL NDs (naturopathic doctors):

www.clinicaladvisor.com/Controversy-continues-to-fuel-the-Lyme-War/article/117160/


You should also be evaluated for coinfections. Not all tests are great in that regard, either, but a good LLMD can evaluate you and then guide you in testing. www.igenex.com http://www.frylabs.com/; http://www.clongen.com/; http://focusdx.com


Dr C's Western Blot explanation is discussed here:
http://flash.lymenet.org/ubb/ultimatebb.php?ubb=get_topic;f=1;t=042077


ILADS
The International Lyme and Associated Diseases Society (ILADS) provides a forum for health science professionals to share their wealth of knowledge regarding the management of Lyme and associated diseases. www.ilads.org

Under Our Skin Lyme Disease documentary www.lymediseasefilm.com

Herxing Reactions: http://flash.lymenet.org/ubb/ultimatebb.php?ubb=get_topic;f=1;t=041517

For the Igenex Western blot IgM and IgG blood test drawn on M, T, or W. Check current $$! Oct. 2008 Price List ... info only. Prices have increased on some! Call 1-800.832.3200 for current prices.
http://flash.lymenet.org/scripts/ultimatebb.cgi/topic/1/78648?#000003

They will also send you a ``test kit'' with their required form, all the test vials, & box to ship it in. Be sure to download Igenex's required form. MD, DO, ND, AC, DC are all fine** must sign, date, and show diagnosis code on there why he's ordering the test.


Optional tests include: co-infection panel for your area of country and PCR whole blood

Igenex is pre-pay/out of network for most insurances. If you are on medicare, Igenex will file the paperwork & it's free to you.

Get copies of all of your special bloodwork.

Overseas instructions for sending to Igenex/Fry Labs (2-23-08)
http://flash.lymenet.org/ubb/ultimatebb.php?ubb=get_topic;f=1;t=063751


Betty's suggested posting guidelines: Many of members have neuro lyme, and it is hard to read long solid block text and be able to comprehend.

For easier reading, please edit your post by clicking the ``paper pencil' icon to right of your user name, which opens up the subject line and body text.

You can break up your longer paragraphs into smaller paragraphs. Please hit ``enter'' key twice after each paragraph, also.

Go to left hand corner and mark box to receive `all replies', and click edit send.

Thank you for posting in a manner that makes it easier for all to read and help others.

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Keebler
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-
Denise,

For future posts, breaking up of text will help a lot of us be able to read what you write. I'll do that with your first post above so you know what Betty means:

---------
original post:

Hi everyone. My name is Denise and I'm from Toronto, Canada. My situation is this:

I had an car accident involving a deer on June 12.

Since then I have developed all the symptoms of lyme disease. My doctor tested me for it and it came back positive. The test that was positive was Lyme IgG EIA.

Then underneath it the Western Blot results are negative for Lyme IgG Western Blot and IgM Western Blot.

My doctor then had me tested for Borrelia Burgdorferi and that has come back negative today.

All my blood work is normal except for CRP which is 16.9 and the normal level should be uner 8. This indicates inflammation somewhere.

My question is can I test negative for all of this and have one of these co-infections - babiosa or bartonella. Im so confused right now.

Is it possible that I have lyme and have tested negative on most of the tests?

Thanks for any light you can shed on this. Its all new and all greek to me at this point.

Denise
--------------

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Lymetoo
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I would definitely get a Western Blot from Igenex Lab. www.igenex.com You need test #188 and 189.

What has likely happened is that you tested positive on the ELISA, but the lab used for the WB was not sensitive enough to pick up the antibodies.

Did you have any tick bites prior to the car accident? Sometimes the Lyme will stay dormant until an accident or some other trauma.

--------------------
--Lymetutu--
Opinions, not medical advice!

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Nicole_Denise
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Hi Denise,

As most people have said, it is possible to have a negative test, but to still have other infections (most common are bartonella and babesia I think)

You can also have a negative test even if you have Lyme- the testing is very inaccurate. I would agree that you should test through Igenex- it is expensive, but worth it.

Finally- I don't THINK there are any LLMD's (lyme-literate Drs) in Canada, but I live in Western Canada, so I'm not sure.

If you go to the Canadian Lyme disease foundation's website, www.canlyme.com, and click on their "area support" link, it will give you the name and email of someone in your area, who will have more information.

Good luck!

Nicky

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DenisePas
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Wow. Thank you so much everyone for all your replies!


Regarding the deer 'accident', miraculously I wasn't injured. I felt virtually no impact.


I didn't hit it head on, it actually hit me and came through the side of my car shattering the passenger side windows.


This was on I-90 just outside of Rochester NY.


There was deer hair in my car and I was also standing at the side of the road for about an


hour waiting for help while bugs were attacking me.

I have an appointment with a LLMD Nurse Practioner in NY next Thurs.


I also saw an Infectious Disease specialist and he didn't think it was lyme and is looking into

inflammatory conditions such as lupus and rheumatoid arthritis which is causing a lot of fear right now.

I don't know much about lupus and I don't want to know at this point.

Should I wait to see the LLMD and have him order the tests?

Thanks again everyone, I can't tell you how much I appreciate your support.

Denise

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Keebler
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-
Denise,

You must have a very strong constitution to have managed that mishap. Good for you for landing on your feet. Now on to figuring out the puzzle.

The LLMD NP should be able to help you. Is this someone whose name you got from here? Someone who is and ILADS-member?

Those other conditions are often caused by an infection such as lyme - not always - but often. The fact that you were exposed to insects from the deer is a clue.

Anyway, with your appointment just a week or so away with the LLMD NP, I think they will be able to help you sort this out, regardless of what is going on.

Be sure to tell them the details of the accident. If you need help feeling more calm, there are some supplements to help support your adrenals that many LLMDs suggest for their patients.

You could still have gotten some mild to moderate brain injury, even if your head did not hit anything. The impact was still jarring - and they will need to know about that. There may be various kinds of physical therapy or calming massage that can help.

Hopefully you will have answers, and help for feeling better soon. Rest up for now and feel nurtured and warm knowing that many here wish you well. Please keep us posted and feel free to post future questions at any time.

Good luck.
-

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DenisePas
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Thank you Keebler. Yes I got the doctor off a list that was sent to me from this site. Dr. L.


I'm 99.9% sure this is an ILADS doctor.


Also I should mention, I've been on Doxy 200mg per day for 15 days now and feel much worse with new symptoms every day.

I never saw a tick on me and never got a bulls eye rash.


I don't know how anyone would see one of these bugs. They seem so tiny.

I did have scaley scabby skin peeling off the crown of my head about a week after the deer contact.

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Keebler
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-
Feeling worse is a clue but doxy can be a bit rough on the tummy.

Be sure you take some good probiotic - several hours away from the doxy itself. You might want to get some Olive Leaf Extract as that can also help prevent candida (yeast infection from doxy).

An herb, Stinging Nettle, can help lessen what is called a herxheimer reaction from the doxycycline. It will help calm inflammation. It will not react with the Rx. Nor will Olive Leaf extract.

Fish oil can help calm down your nervous system from all this, as can magnesium glycinate. Not too close to doxy, though.

Unsugared yogurt can help - but not near the Rx. The calcium can make the doxy less absorbable.

Be sure to tell the doc about your scalp. Again, good luck.
-

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DenisePas
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Thanks Keebler!
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Pinelady
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I was tested for RA and Lupus and Ana. Only Ana

positive low titer and showed smooth speckled.

Another year later I found Lyme. I

agree with everyone here on the bad tests but also

recommend Igenex. Some find after a antibiotic

challenge they will get a better response.

--------------------
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

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DenisePas
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Pinelady


Thanks, I will definitey get the Igenex test. What is an antibiotic challenge?


Thanks,

Denise

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Haley
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Denise,

I completely understood what you were saying form the beginning. Did you have a time after the incident where you developed flu like symptoms or became very ill (possibly vomiting).

That is what happened a while after I was bitten but it doesn't happen to everyone.

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DenisePas
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Hi Haley.


No nothing happened immediately after but for about 3 weeks after the contact every week I would get a sore throat


and it would feel like I was coming down with something then it would go away. The the next week it would start again.


It was then that I went to my family doctor thinking I might have a tumor or who knows what


in my throat and I had an ultrasound which revealed nothing. I happened to mention to my

doctor just in passing that I had hit a deer in June. Then when I returned to her in August when


my lymph nodes were swollen like golf balls and I was in the emergency room...it was my doctor that


had remembered I had contact with deer hair and bugs and included the test for Lyme along with all the other bloodwork.


I didn't realize it was one of the many blood tests on the form so when I got a call from her office informing me that I had tested positive for lyme I was shocked.

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Peedie
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Denise, Hi there. So sorry to hear you are not feeling so well.

Of course it is possible to have an uninvited tick take a seat beside you after it's host injected it's body through your car window!!

yes, the ticks are small, but they can move fast when they want to. Fleas and ticks KNOW when their "host" is dead or dying and guess what - they jump ship. I saw it a the vet hospital all the time.

Another possibility, as someone else pointed out - Trauma from this accident--> sounds really scarey...can also upset your own body balance which may have had Lyme subdued by an efficient (and calm)immune system.

You do - after all live in Lyme territory. You may have been infected prior to the accident.

IMO the Neurologist (unless ILADS trained) will be of no help. You may actually be led down a long road to nowhere like some of us here.

I would seek the help of the LLMD and continue treatment. If Doxy is too harsh on your stomach, a different abx like amoxicillan (sp)might be better.

Question: How do you fumigate and rid the car of ticks and such - without exposing yourself to pesticides and horrific toxins?

Feel better soon
-peedie

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Pinelady
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A challenge is a course of doxycycline or similar. Stop and wait 10-14 days and draw and ship test kit to Igenex.

--------------------
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

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