posted
After over a two month illness with no diagnosis and numerous diagnostic tests, I keep coming back to lyme disease. My 12 yr old daughter was bitten by tick in June.
Symptoms include stomach pain with some constipation, back and neck pain, headache, nausea, tiredness. She didn't have the bullseye rash initially, although did have some flu-like symptoms. No fever during the past 2 months.
The first test for lyme was negative. I finally got the dr. to reconsider (he was the same dr. that told me "we don't have ticks that cause lyme here in Utah") So he has written an order for the western blot test and a prescription for doxycycline? The blood test would be run through Quest. After reading various testing info, I'm unsure whether to go ahead with this plan.
How do I get accurate information in order to decide whether to pursue Lyme further? No LLMDs in the area and I would rather not go out of state unless this seems like a likely cause.
Any suggestions?
Posts: 312 | From Utah | Registered: Nov 2010
| IP: Logged |
I don't know what your daughter has, but if all of this happened after a tick bite I would strongly suspect tick-borne disease. Ticks transmit all sorts of nasty diseases whether it's a deer tick or wood tick.
If she feels much worse and/or develops new symptoms on the doxycycline (called a herx), I would suspect Lyme. If the doctor tries to say it's side effects, you can change antibiotics to see if she gets the same or similar symptoms.
I can't say if your daughter has Lyme or not, but the truth is Lyme disease is everywhere and ignorance is at an all-time high.
I think gauging antibiotic response may provide better answers for you than lab tests. However, if not caught right away, it will likely take many months and the right doctor for your daughter to notice much of a difference.
Most people with a chronic form of Lyme will relapse if they are only given doxycycline (or any other antibiotic by itself really).
Maybe a single round some Doxy will make her feel better, but don't keep your hopes up too high.
I'm not trying to be negative. just realistic.
If no answers can be found by your regular doctor, I'd follow your intuition (wherever that may lead you).
Posts: 967 | From A deserted island without internet access | Registered: Sep 2009
| IP: Logged |
posted
I'd order the test through Igenex labs, since they're more sensitive than other labs are. Maybe something would come up there. I *think* you can test for co-infections as well, though my brain doesn't allow me to remember for sure or not today.
Your dr. sounds like all the rest of them do. No Lyme in such and such state. NOT TRUE.
You're off to a great start by coming here. There's a LOT of information to absorb when dealing with Lyme, or the suspicion of it. I actually had "information overload" when I first had my suspicions. But it's in your daughter's best interest for you to gain all the knowledge you can if you even suspect you might be dealing with it.
Good luck, I wish you the best.
Posts: 624 | From Oklahoma | Registered: Jun 2010
| IP: Logged |
TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
You ask how you can get accurate information in order to decide whether to pursue lyme further. No lyme docs in your area.
Well, getting her tested by the best tick borne disease lab in the country is a start. That lab is Igenex. See their website, Igenex.com. You can order a test kit and ask your doc to sign for the lyme test (test #188 and #189--I believe it costs about $200). (They don't take insurance. You must pay up front and seek reimbursement from your insurere.)
You have to have the blood drawn on a Mon, Tue, or Wed and have it shipped immediately to Igenex. You don't want the blood sitting in a post office over the weekend.
A lyme doc's office does this routinely, but if you are going to do it yourself, then you have to be sure the one drawing the blood does it or you do it yourself. You need the express mail shipping. A regular lab or doc's office will not be used to doing it. It is essential that this be done right to get a good result.
If the blood sits around before it gets to Igenex, it will clump and make the lyme antibodies impossible to separate. Then, you will get a negative lyme test even if she has lyme disease.
Here is a quote from a doctor talking about the Western Blot test:
"Specimens for borreliosis Western blot testing should always be express-mailed to the laboratory. Antibodies against the Lyme bacteria can clump or bind together and give a false negative test result.
Express-mailing specimens lessens the time in which this could happen, which in turn increases test accuracy.
If your specimen sits around for several days (or if a screening test is ordered instead of a Western blot, or if a regular lab is used instead of a reference lab) then you might be given a false negative test result, which in turn could result in a false sense of security.
Testing in my office consists of a Western blot that is express-mailed to a borreliosis reference laboratory."
You will want to read the doctor's entire explanation of this test. So, go to this post and study it. It is always at the top of "Medical Questions" under "Quick Links to Popular Topics."
Go to the Igenex site and you will see their phone number. You can call and speak to them about getting her tested for lyme. You can ask all the questions you need to ask regarding doing the testing.
The test results will be sent to your doctor, not to you. Be sure you get a copy of the results from him.
The doctor's post on the Western Blot tells you that if the patient has lyme symptoms (which your daughter has, plus a tick bite) and if she has at least one equivocal or positive band on the Western Blot, then you should consider this evidence of lyme disease.
Be prepared for your regular (non-lyme literate) doctor to disagree with this. Go with the advice of the lyme doc who has treated thousands of cases of lyme disease.
Also, realize that the lyme bacteria is very tricky so your daughter may test totally negative. If that happens, you have to continue to pursue a diagnosis for her. If no other diagnosis presents itself, then you have no choice but to go out of state to a lyme literate doctor for an appointment.
If the doc decides it sounds like she has lyme based on her symptoms and history, then he will do a course of antibiotics to see how she reacts.
Sorry it isn't clear-cut in many cases. That's why so many people go undiagnosed or misdiagnosed for years.
I was undiagnosed for 10 years, going from doctor to doctor. But, a smart doc finally thought of lyme disease. I was fortunate in that I tested positive through LabCorp. Then, the hunt is on for a good lyme doctor.
Don't want to overwhelm you, but the best document you can read to get an education on this disease is the Burrascano lyme treatment guidelines found here:
Here is a quote from this document regarding the unreliability of the lyme tests:
"DIAGNOSTIC HINTS 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.
ERYTHEMA MIGRANS Erythema migrans (EM) is diagnostic of Bb infection, but is present in fewer than half."
Dr. Burrascano is the lyme disease guru of the U.S. and of the world. He wrote these guidelines to teach doctors how to treat lyme disease.
Notice the first sentence of the quote--no test is definitive when it comes to lyme disease.
If you read the Guidelines, you will see that he says to use a good reference lab to do the lyme testing. That is what Igenex is. I heard Dr. B. say this personally in 2 different lyme conferences. Quest and LabCorp are virtually useless for lyme testing. They are not reference labs. So, you can start with them if you want, but if the result is negative, then you have to go to Igenex next.
The post from the doctor explaining the Western Blot also says to use a reference lab. Notice that. That gives you the best chance of getting an accurate result, not Quest and LabCorp.
Also, many doctors say that it is best not to be on antibiotics when testing for lyme. So, you may not want to start the doxy until AFTER the Igenex blood draw. That is the safest way.
Also, you said dau didn't have the bulls eye rash initially. Does that mean she got one later? Or did she never get one? If she ever got a bulls eye rash, then go immediately to a lyme doctor because the rash and symptoms means she has lyme disease. You will see that written in Burrascano in the quote above where he says: "Erythema migrans (EM) is diagnostic of Bb infection...."
Also, here is a good video on lyme disease for you to watch. Notice how many people say their lyme test was negative, yet they still had lyme. That is the current state of affairs, sorry to say.
The show was done by a Boston TV station about 2 years ago and it was taped by a girl on LymeNet so we all could see it. It also explains why it is so difficult to find a lyme doctor who knows how to get rid of this disease for someone.
I went through 2 other lyme docs before I found one who knew enough to get rid of this disease for me. It is now over 5 1/2 years since I completed my treatment and I am still lyme free!
I stick around this site to help people like you and to point people to the good lyme doctors.
Come back at us if you need more help. That's what we like to do.
Posts: 9931 | From Maryland | Registered: Dec 2007
| IP: Logged |
posted
I'd go ahead and run the Quest Western Blot. If it's positive, it will save you the money you would have had to spend on IGeneX. If it's negative, just know you need to test with a better lab for Lyme Disease.
If it's negative, ask your PCP if he'll run the IGeneX test. Mine did. Then you can make an appt with an LLMD.
Honestly, it sounds like Lyme. I'd make that appt anyway. She got bitten by a tick, now she's sick with Lyme symptoms. That sounds like Lyme. There's a clear connection between the bite and the symptoms.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
| IP: Logged |
posted
Thanks so much for the info and the quick responses. I'll be contacting Igenix. I may go with Quest first because of cost, but it sounds like I should wait until after Thanksgiving holiday in order to express ship.
Still nervous about using doxy after reading somewhere that children shouldn't have. Not sure if 12 qualifies for adult?
This is scary for me, but after more than 2 months I've learned that it's going to be up to me.
She didn't have a bullseye rash ever. But she has something on her calves/shins that looks kind of ringworm or eczema like. Is there a way to test that? Wondering about candida also. Took her off wheat and dairy for 2 weeks, no certain changes. Let her eat some yesterday and she seems worse.
Posts: 312 | From Utah | Registered: Nov 2010
| IP: Logged |
posted
Might as well go with Quest like Six said and see what happens. But be SURE to get a test thru Igenex if the Quest returns negative. (and it probably will)
DIET, DIET, DIET is the key. Then, be sure to follow the 5 step plan outlined below. It was developed by my naturopath. It works.
"Successful control and elminiation of a Candida Albicans overgrowth requires a multifaceted program as described below. Failure to follow ALL the steps simultaneously will result in slow progress and will lengthen healing time significantly. The program should be tailored to the individual and must balance the need to eliminate the Candida and deprive it of its food source while insuring proper nutrition for the individual."
Five Steps to Candida Elimination:
1. You must starve it into submission by eliminating its food source.
2. You must kill it with anti-fungal herbs and supplements. [e.g....garlic, onion, caprylic acid, Pau D'Arco capsules or tea, clove, grapefruit seed extract, olive leaf extract, oil of oregano, tea tree oil, Echinacea, Goldenseal, black walnut, MSM, barberry root, uva ursi, neem leaf, biotin]
3. You must reestablish the proper balance and quantity of probiotic bacteria in the digestive tract. [...multi-strain lactobacillus acidophilus and bifidus capsules with FOS should be taken between meals to maximize repopulation of the digestive tract by beneficial bacteria.]
4. You must reestablish proper levels of all B vitamins (yeast free) and utilize other immune enhancing supplements to boost immune system function. [e.g ... B complex vitamins (yeast free), biotin, beta 1-3 glucan, colostrum, maitake mushroom, vitamins A, C, E, zinc and selenium]
5. You must cleanse and heal the digestive tract to promote proper elimination of toxins and Candida and assimilation of nutrients. [e.g...chlorophyll, MSM, omega 3 fatty acids found in flax seed and salmon oils, GLA found in borage, evening primrose and black currant oils. Pantothenic acid, digestive enzymes between meals]
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96223 | From Texas | Registered: Feb 2001
| IP: Logged |
momlyme
Frequent Contributor (1K+ posts)
Member # 27775
posted
My son is 11 and he has been sick since June, positive with IGg and IGm Lyme by CDC Western Blot July 24 - didn't start abx until July 27th because it took that long for the doctor to call us.
My son was on Amoxycillan - continued to get worse... the pain was awful, brain fog, stomach issues. Is your daughter keeping food down?
My son is gluten free, sugar free and dairy free because this is the only thing that keeps him from puking everyday. If you need kid friendly ideas... I have a few good recipies.
Doxy is fine for a 12 year old. I begged for them to put my son on Doxy - because we weren't seeing any change from the Amoxy.
The scariest thing about this is when you give your child antibiotics, they actually feel worse. I hate that, but you have to get used to it because it is what will make them better.
When the Amoxy didn't work (after 21 days) our PCP put my son on prednisone and Doxy... things went from bad to worse. My son could barely walk after 10 days on the prednisone. We went to an ID. BIG MISTAKE! They are trained to tell you that it is all in their head. What 11 year old is going to pretend to be sick??? Grrr.
Get an appt with a LLMD ASAP! Did you say there are none in your area? Are you willing to travel? We have an awesome pediatric LLMD. PM me if you would travel to NY.
We didn't see any improvement until we started seeing this doctor. We still haven't seen a lot yet... but at least it's not a downward spiral anymore. We are on a good road to recovery.
Your daughter is in my prayers. She is lucky to have a great mom to help her through this.
Be well.
-------------------- May health be with you!
Toxic mold was suppressing our immune systems, causing extreme pain, brain fog and magnifying symptoms. Four days after moving out, the healing began. Posts: 2007 | From NY/VT Border | Registered: Aug 2010
| 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!
![[group hug]](graemlins/grouphug.gif)
Be well.
Printer-friendly view of this topic