posted
Can someone help us decipher our daughter's test results from IGeneX...
In February 2008 our now 14 year old daughter got ``the flu'' with symptoms of high fever, headaches, muscle aches, sore throat, fatigue, etc. and lost 5 lbs in 10 days. She has been loosing weight since then and is down to 85 labs.
She developed GI symptoms (pain, bloating, cronic constipation); she had a three day span that she again had fatigue and headaches and lost 4 lbs. in three days. She was hospitalized for a week. After many, many tests, they could not find anything except a small lymphangioma on her intestines that was removed. They said that it was not the problem and was probably secondary (but to what they could not say).
She tested negative to Celiac but would experience pain whenever she ate gluten. As she was a dancer and 14, they evaluated her for a eating disorder. She was cleared of all eating disorders by doctors and psyciatrists. (This kid loves food!) She had two regular Lyme tests and they were negative. She started having pain in one of her knees, her feet and one of her toes goes into spasms frequently.
At the request of her pediatrician, we started seeing a GI specialist who felt that all of her symptoms were post-infectious to "the flu" she had in Feb of 08 and gave more a wait-and-see attitude.
After completing a Lyme checklist we found online, we asked her doctor to send her for bloodwork for the IGeneX test (which the doctor thought was a waste of time). She did request it however and we now have the results back. Her doctor did agree to treat our daughter for one round (30 days) with Doxy but that she did not feel in any way our daughter has Lyme but that she could have been exposed to it somewhere along the way. Our yard (in Massachusetts) is completely surrounded by woods and we have a major tick problem.
We have an appoint with a doctor at Boston Children's in a few weeks to review these results and examine our daughter as well. She has gone from a muscular, strong, vibrant dancer to a very thin, frustrated young lady. Her doctor does not feel it is safe for her to dance any longer. Despite all our efforts we cannot seem to control whatever this is. Anyway, here are her results. Please help!
IFA, B Burgdorferi G/M/A 1:80 titer
HME Panel (monocytic) E. Chaffeensis IgG 1:320 titer (ehrlichiosis)
HGE Panel (granulocytic) A. phagocytophilum IgG 1:160 titer (ehrlichiosis)
Western Blot IgM 31 IND 39 IND 41 +++
Western Blot IgG 34 IND 39 IND 41 +++ 58 + 83-93 IND
posted
I'm so sorry your daughter is going through this! But good for you for pushing for the Igenex test.
If you look at the "sticky" threads in Medical Questions, there is one labeled "Dr. C's Western Blot Explanation." It is very helpful, and contains detailed explanations of what each band means.
That being said- I would say that the test does point to Lyme. Many LLMD's consider an "IND" to be a weak positive. The test, combined with your daughter's symtpoms, is more than enough to get an LLMD to agree to treat her.
I see you are trying to find an LLMD- this is good. 30 days of Doxy will not be enough. Have you posted in the "Seeking a doctr" section?
Lyme is tough- but at least now you can be doing something about it. Best wishes for your daughter!
Edit: Ooops. I had Dr. B instead of Dr. C
Posts: 503 | From Alberta, Canada | Registered: Jun 2009
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Pinelady
Frequent Contributor (5K+ posts)
Member # 18524
posted
I would say you are a very wise mom. So sorry it
took so long to get a real diagnosis. Please
seek a LLMD ASAP. There will most likely be a
delay,(they are very busy), but that will give
you time to research what you can do. In Lyme
disease the immune system gets shut off and there
are many things you can do to help the body fight
this infection. You will find many helpful
people here who can help you get her well. The
best part is now that can begin. She will most
likely get worse on the antibiotics as it kills
the bad guys that are inside the cells it will
make her sicker. It is expected. That is why you
need a good LLMD. If he did not give a script for
diflucan I would request one now. You did not
state the doxy dosage? If there is any one thing
I can tell you to help her that would be-she is
probably a lot sicker than she appears.
-------------------- 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 Posts: 5850 | From Kentucky | Registered: Dec 2008
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posted
Well, her test results show that she has clearly been exposed to a couple different infections that are given off by ticks. Unfortunately, the tests that are currently available are not always reliable. Determining whether she is currently infected or not isn't always clear and sometimes can only be determined by a differential diagnosis and response to treatment.
Given her obvious exposure to lyme/erlichia in the past AND continued symptoms AND lack of another medical diagnosis, I think you are absolutely doing the right thing having her treated for lyme.
Not sure where in Ma you live....I'm in North Andover. Feel free to send me a PM....
Posts: 561 | From mass | Registered: Jul 2007
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Just a comment on celiac: I have been around on celiac forums and several people there said their "celiac" is pseudo-celiac, and some got well after successfully treating the lyme borreliosis. (I think six here had such a case too) Even LymeMD comments on this phenomenon, negative or weak positive celiac tests, negative biopsy, but symptoms just like celiac.
Some even say that all lyme patients better go gluten-free. Anyway, when you have this lyme-caused pseudo-celiac, it is better to strictly adhere to a gluten-free diet so the lyme treatments work better. (and low-carb of course, there should be info here about eating and lyme) sugar actually lowers your immune system. (the postings about lyme and celiac I found on the forum at celiac.com) nora
Posts: 366 | From Europe | Registered: Nov 2008
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Dekrator48
Frequent Contributor (5K+ posts)
Member # 18239
posted
The others are right.
Your daughter needs evaluated by a good LLMD for lyme and for coinfections Human monocytic ehrlichiosis and human granulocytic ehrlichiosis according to those results.
A good LLMD will also evaluate for other possible tick borne diseases such as babesia and bartonella, etc.
Treatment is complex and addresses many issues.
A little bit of doxy will not resolve all of this.
As others have said, please post for a Dr on the Seeking a doctor board for a 14 year old in MA.
Symptom checklist p 9-11, coinfection info p 22-27.
My LLMD says that an IND result on a lyme specific band, such as she has on bands 31, 39 and 83-93 are like a fingerprint.
It may not be a dark fingerprint, but it is still the same fingerprint.
Congratulations for being relentless in the search for the cause of your daughter's illness!
High quality refrigerated probiotics with at least 50 billion cultures of strains starting in "bifido" and "lacto" are one of the most important supplements she should take while on antibiotics (that is what my LLMD told me for an adult...others here have kids with lyme and can help)....take at least 2-3 hrs after an antibiotic dose.
Good luck, and keep posting!
-------------------- The fibromyalgia I've had for 32 years was an undiagnosed Lyme symptom.
"For I know the plans I have for you", declares the Lord, "plans to prosper you and not to harm you, plans to give you hope and a future". -Jeremiah 29:11 Posts: 6076 | From Pennsylvania, USA | Registered: Nov 2008
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posted
Thank you all for your input - keep it coming! I have become research junkie trying to be an advocate for our daughter! It has been like nailing Jell-O to the wall! At least we don't feel alone anymore.
Posts: 12 | From Massachusetts | Registered: May 2009
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Leelee
Frequent Contributor (1K+ posts)
Member # 19112
posted
Hi cmkly,
I am so very sorry for your daughter's deteriorating health. The sadness goes even deeper because she has had to sacrifice her dancing. I, too, was a dancer (even though I am 53) and had to leave the studio last fall due to Lyme. My heart breaks for her.
I think you are on the right track in suspecting Lyme. I think even more so having read the Igenex results. Her test results indicate exposure to the disease. Sometimes the "IND's" can turn into "+'s" after abx treatment.
Everyone before me has given you excellent advice. Unfortunately we all have way too much experience with this disease. Your daughter needs to be seen by an LLMD (Lyme Literate Medical Doctor). The 30 days of abx she was given will not even begin to touch this infection.
You can ask for a referral to an LLMD in "Seeking a Doctor". Someone will help you there.
As for Celiac's Disease....in the last few years my stomach issues worsened along with the Lyme (undiagnosed until March 2009). I had no idea I was gluten-sensitive until a test given to me by my LLMD revealed this. I was told that 50%-60% of the patients in the practice have gluten sensitivities. I don't know if there is a connection to Lyme, but nothing surprises me.
Eliminating all gluten from my diet has helped tremendously. A person can be terribly sick from wheat and gluten and not have Celiac's. That may explain her negative Celiac's test.
I wish her the best of luck. You are on the road to finding the answer to her failing health. I have a strong suspicion that Lyme fits into the picture. Please continue to pursue this diagnosis.
-------------------- The ultimate measure of a man is not where he stands in moments of comfort and convenience, but where he stands at times of challenge and controversy. Martin Luther King,Jr Posts: 1573 | From Maryland | Registered: Feb 2009
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nenet
Frequent Contributor (1K+ posts)
Member # 13174
posted
Everyone has already given you a lot of great advice. I will just try to make the research a bit easier on you by providing some direct links to things already mentioned:
Dr C's Western Blot Explanation (a must-read, very helpful)
I'll make another post with some more info - it's kind of long.
I wish you and your daughter the best. The more research you do, the better tools you have, so you are well on the path to getting her better. There are tons of great scientific research and medical articles on Lyme and other tick-brone disease (co-infections) now, so Google Scholar and Pubmed are your friends.
nenet
Frequent Contributor (1K+ posts)
Member # 13174
posted
I am so sorry for your daughter and you. You are doing the right thing investigating this angle.
I hope it's ok to post this here for you - it's kind of a summary of some of the basics, and the news segments and resource links are very informative. It looks like you have a very good handle on the issue already, but it's hard to know what you have read thus far. I would especially look at the Symptoms list from lymeinfo.net - it covers a wide range of symptoms, and gives medical and scientific citations for each one.
Below is a summary I put together of how Lyme can be contracted, what symptoms can result, testing and diagnostic issues, and links and info on how to find proper treatment.
News segments:
Linked below are two very informative and important news segments on Lyme:
**From Chronicle HD, TV 5, in Boston, MA. Originally aired Tuesday, April 21: "Ticked" (four parts - runtime 20:40 minutes)
**From Baltimore, MD ABC News Channel 2, "2 Your Health" aired May 20, 2009: "Lyme Disease" (video located at upper right of page - runtime 3:29 minutes)
Lyme is the most common and fastest-spreading vector-borne infection in the United States. Lyme is in every state of the US, even Hawaii (as well as in many other countries). You can catch Lyme, and other infections (viral, bacterial, and protozoal), from several species of ticks, not just the most publicized Deer tick.
You can contract Lyme as soon as the tick is attached, not just after the commonly publicized 24 hours. Nymphal (and adult) Deer ticks are a common transmitter of Lyme Disease, as they are so small they are very difficult to detect and remove before attachment; they are the size of the period at the end of this sentence, or a poppyseed. They have translucent bodies before feeding; after feeding they are generally a medium to dark-gray color, with a darker head. Adult Deer Ticks are not much larger, and can appear to be a speck of dirt or a dark freckle.
Some co-infections like Rocky Mountain Spotted Fever (RMSF) can be contracted from simply touching the tick or its fluids or excrement. Always handle ticks with a "tick removal kit" (like this one: http://www.lyme.org/tickkit/tickremovalkit.html ), which can be purchased in many drugstores or found online, OR with good tweezers and a steady hand, making sure to remove the head, and mouth parts, without smashing the tick. If at all possible, save the tick in an airtight container, and send it to be analyzed by a Tick-Borne-Disease specializing lab.
Below is a sample of the many possible symptoms of Lyme disease. The first symptoms can start immediately after a tick bite, or they can first appear weeks, months, and in some cases, even years later. Symptoms generally relapse and remit, meaning that they can come and go. One hour, day, week, or month, you can be feeling sick, then the next you're feeling better for a while, and so on. You can have one symptom or a spectrum of symptoms - some may not manifest until the infection spreads to particular tissues, particularly the CNS, but it is interesting to see how it can mimic other ailments (dissemination to CNS can occur in as little as 12-48 hours, as observed in some animal studies).
Lyme Disease Symptoms (Partial List):
1. Unexplained fevers, sweats, chills, or flushing 2. Flu-like symptoms or malaise 3. Fatigue, tiredness, poor stamina 4. Unexplained hair loss 5. Swollen or painful glands/lymph nodes 6. Sore throat 7. Headache 8. Rash - either bulls-eye or other forms. Can vary in form, color, and number, and appear in areas other than tick bite. Less than 50% of confirmed Lyme cases report remembering a rash. A bulls-eye rash from a tick bite is DIAGNOSTIC for Lyme Disease. Here are several photos of some types of Lyme rashes, though they do not include all possible types: http://www.lyme.org/gallery/rashes.html 9. Irritable bladder or bladder dysfunction, Interstitial Cystitis 10. Upset stomach, GERD, or acid reflux 11. Change in bowel function - constipation, diarrhea 12. "Sick all the time" - seem to catch every illness that comes around 13. Disturbed sleep - too much, too little, early awakening, odd change in sleep schedule 14. Cranial nerve disturbance (facial numbness, pain, tingling, palsy or optic neuritis, Bell's Palsy) 15. Lightheadedness, wooziness, syncope 16. Increased motion sickness, vertigo, poor balance, or change in gait 17. Pain, stiffness, and/or swelling of the joints, neck, or back, traveling or localized 18. Tendon and ligament pain or stiffness 19. Neck creeks and cracks, neck stiffness, neck pain 20. Muscle pain or cramps, traveling or localized 21. Ears/Hearing: buzzing, ringing, ear pain, sound sensitivity, loss of hearing 22. Jaw pain or stiffness 23. Twitching or tics of the face or other muscles 24. Tingling, numbness, burning or stabbing sensations, shooting pains 25. Muscle spasms; limb or head jerks 26. Difficulty swallowing, tight throat 27. Tremor 28. Eyes/Vision: double, blurry, increased floaters, light sensitivity, pain, uveitis 29. Heart palpitations, chest pain, pulse skips, heart block, heart murmur, or valve prolapse 30. Shortness of breath, air hunger, cough, painful lungs 31. Chest pain or rib soreness, costochondritis 32. Unexplained menstrual irregularity or increased PMS symptoms 33. Unexplained milk production, breast pain 34. Sexual dysfunction or loss of libido 35. Testicular pain/pelvic pain 36. Unexplained weight change - loss or gain 37. Exaggerated symptoms or worse hangover from alcohol 38. New food sensitivities or allergies
Symptoms that can be found in disseminated Lyme Disease (called Disseminated late-stage Lyme Disease, or Neuroborreliosis) can generally appear anywhere from several days after infection, to many years later:
37. Confusion, difficulty in thinking 38. Difficulty with concentration, reading 39. Forgetfulness, poor short term memory 40. Disorientation: getting lost, going to wrong places 41. Difficulty with speech or writing, difficulty with word-finding 44. Mood swings, irritability, 45. Depression, Bipolar Disorder 46. Autism, ADHD, OCD, erruptive behavior 47. MS-like Lesions in brain and/or spinal cord on MRI 48. Paralysis 49. Dementia 50. Psychosis 51. Auditory and visual hallucinations 52. Seizures
Lyme symptoms are systemic, or multi-systemic. Lyme can cause sets of symptoms that can be misdiagnosed as, or be the cause of :
If you would like to know more, please ask. If you have been bitten by a tick, please see a Lyme-knowledgeable Doctor for evaluation. Testing is not generally useful within about 6 weeks of infection, as it looks for antibodies that aren't created in easily detectable amounts until several weeks after infection. The ELISA test is very inaccurate, and even when paired with the Western Blot, it misses up to 75% of DNA-proven Lyme Disease (according to recent Johns Hopkins study), so do NOT submit to an ELISA screening test. Rather, request a kit for the Lyme Western Blot (IgG and IgM) to be sent to a Lyme Disease reference lab, such as IgeneX in California. IgeneX is considered the gold standard of Lyme testing at the moment. More on how Igenex performs a more accurate test: http://www.igenex.com/innovations3.htm
Even with the Western Blot, many proven cases of Lyme will be seronegative. There are many reasons for this, but suffice to say that Lyme testing is only meant to be used to support your Doctor's clinical positive diagnosis. The CDC states that a negative test does not rule out Lyme Disease, and that Lyme is a clinical diagnosis. In light of that, it is in your best interest to go to a Lyme Specialist to be properly evaluated, diagnosed, and treated. I would be happy to help find a Lyme Specialist near your area.
To avoid infection with Lyme and other tick-borne diseases, please find some effective tick repellent, and use it! There are many natural repellents available that are actually MORE effective than DEET. One that we use is Lewey's EcoBlends ( http://www.buzzoff.us ), and it can be found in several stores and purchased online. Whatever you buy, use it, and check for ticks frequently - especially in the hair, back of knees, and any creases, like the neck, arms, groin, etc.
posted
Thank you everyone for your help! I guess you always think it won't happen to you but here we are. We are so frustrated! You know, even our dogs get tested about once a year for Lyme and have a something we can put on them to repell ticks - why isn't there more preventive measures for humans! We have a beautiful yard and after this our family is having a hard time finding the joy in using it. We had no idea......
Posts: 12 | From Massachusetts | Registered: May 2009
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Leelee
Frequent Contributor (1K+ posts)
Member # 19112
posted
cmkly,
It's awful. I completely understand everything you just wrote. We too have dogs and cats that get the utmost in preventative care, a gorgeous piece of property and now we are terrified of stepping onto the lawn.
Never in a million years did I see this coming.
Hoping for the best for you and your family.
-------------------- The ultimate measure of a man is not where he stands in moments of comfort and convenience, but where he stands at times of challenge and controversy. Martin Luther King,Jr Posts: 1573 | From Maryland | Registered: Feb 2009
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posted
Our daughter has started the Doxy 200 mg and already isn't feeling that great. I found on another site that "Doxy is VERY potent when it comes to Lyme and it can make you very sick if you don't get rid of the toxin that the Lyme germ releases when it is killed. Detox is as important as antibiotics or whatever you chose to kill it."
She is taking a mega flora probiotic and Kefir; drinking lots of water, etc.; any other suggestons?
Posts: 12 | From Massachusetts | Registered: May 2009
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Pinelady
Frequent Contributor (5K+ posts)
Member # 18524
posted
Sugar and caffeine are her worst enemy. When you
decide on a LLMD ask them to give you ideas on what
to supplement with to increase her bodies ability
to fight the infection and something to help with
the detox. Many suggest charcoal caps to pull
poison to bowels and eliminate. Diflucan for
yeast. Hopefully you got some ideas from other moms here.
-------------------- 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 Posts: 5850 | From Kentucky | Registered: Dec 2008
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posted
Have you heard about herx? Herxheimer's reactions? It is typical when killing spirochetes like syphilis, borrelia and some other spirochetes. It makes you feel awful and may people regard it as proof that antibiotics are working. But one does not neccessarily have to have a herx for ab's to work. Hard to explain.
Chlorella is a good thing to use to detox, there should be lots of info online and here.
Anyone know if magnesium is okay, per os, or if it is better I.V.? (those who have been to Germany got I.V. magnesium plus a lot of homeopathic detox preparations that helped immensely over there, and someone posted they took some with them to the U.S. They are not secret)
Posts: 366 | From Europe | Registered: Nov 2008
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posted
If those "IND's" were converted to positives, then there would be NO DOUBT that your daughter has Lyme. But most LLMD's would TREAT with a test result like that!!
And IND is a weak POSITIVE!
Be sure to read Dr C's WB explanation!!
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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Pinelady
Frequent Contributor (5K+ posts)
Member # 18524
posted
The foot pads are a good try. I did lots of epsom
salts soaks but it is like everything else in Lyme.
Start slow and gradually increase. Her body temp is
below normal? Then it will best be drawn by her
liking not someone else as the temp is not going
to feel the same to someone who does not have
this. The systems are already overloaded it does
not take much to stir things up. Her thyroid
levels will most likely be off also.
-------------------- 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 Posts: 5850 | From Kentucky | Registered: Dec 2008
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Jane2904
Frequent Contributor (1K+ posts)
Member # 15917
posted
Hello,
I am so sorry your daughter is not well.
Please make sure she doesn't lie down within one hour of taking the Doxy. Also be very careful with sun exposure.
Pm, me if you would like the name of a LLMD, Ped.
Glad you found this board, it is a great source of information and support.
Posts: 1357 | From Massachusetts | Registered: Jun 2008
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posted
Our Doxy instructions say not to lie down for 30 mins after taking....why is this?
Posts: 12 | From Massachusetts | Registered: May 2009
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Leelee
Frequent Contributor (1K+ posts)
Member # 19112
posted
quote:Originally posted by cmkly: Our Doxy instructions say not to lie down for 30 mins after taking....why is this?
I think it can cause burning and discomfort in the throat if it is not fully absorbed before lying down.
-------------------- The ultimate measure of a man is not where he stands in moments of comfort and convenience, but where he stands at times of challenge and controversy. Martin Luther King,Jr Posts: 1573 | From Maryland | Registered: Feb 2009
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Jane2904
Frequent Contributor (1K+ posts)
Member # 15917
posted
Yes, Leelee is right. I thought I remembered one hour. It's been awhile since taking Doxy, so I would go by your instructions.
Posts: 1357 | From Massachusetts | Registered: Jun 2008
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posted
Thank you everyone for your help! We are on day 5 of the Doxy and she is feeling awful! Her stomach hurts and as she says - "it feels like I got hit by a bus!"
With her stomach not feeling good it is hard to get her to eat as much as we would like and she can't afford to loose any more weight! She is taking probiotics and Kefir. We are trying to keep the meals pretty small and about 5-6 a day and have her taking the Doxy with food - taking it without was just too much! We are trying some detox tea too.
Is this herxing or just a reaction to the Doxy. From what I read on other boards as well, Doxy can be brutal. We are just terrified of her loosing more weight but we want her treatment to get started. We don't have an appt with a lyme doc for another 2 1/2 weeks. Needless to say, my stress and axiety level is through the roof! I cannot believe I am watching our daughter go through this! One breath at a time.....
Posts: 12 | From Massachusetts | Registered: May 2009
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nenet
Frequent Contributor (1K+ posts)
Member # 13174
posted
cmkly, If your daughter is having stomach trouble with the Doxy, please consider asking her Doctor to change the script to Doryx.
It is the same antibiotic, but buffered for the stomach. It is used a lot for children because of stomach issues.
I have a stomach tea recipe that uses easy-to-find herbs that you can buy online, if you would like to try that. It really helped when I had a stomach ulcer and reflux/GERD. It helps coat the stomach and allow it to heal.
You would want her to drink it 2 hours before her medicine, or an hour or two after her medicine, so the meds can absorb properly.
Please let me know if you want this recipe or any help.
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