posted
My normally very healthy 14-year-old has been sick for a few days with some suspicious (to me) symptoms.
He recently finished two weeks of wilderness camp in New England and reports that he had to have a tick removed from his leg at camp about 15 days ago.
I feel like a hypochondriac mom but would prefer some peace of mind by going to an LLMD, rather than second-guessing an "Oh, it's nothing to be concerned about" diagnosis from a GP.
posted
Welcome to Lymenet! PM sent for FL, MD, & DC.
You are not being a "hypochondriac", but a good health care advocate for your son. It took six years after many "diagnoses" from non Lyme-literate doctors just to find out what was wrong with our son and there was no tick that we know of, just many mosquito bites!
Your son needs to be evaluated and treated by a Lyme-literate doctor (LLMD). Non LLMDs have no clue about this horrible disease or its complex treatment!
A LLMD is one who has treated Lyme disease and the co-infections which come with it for many years and has gotten patients well. A good one will follow Dr. B's Guidelines, the "gold standard" for Lyme treatment.
Unfortunately, LLMDs are far and few between so he needs to go where they are. At least half of all Lyme patients travel out-of-state for their care.
Also, most LLMDs do not accept insurance due to the politics surrounding this horrible disease. Read poster TF's explanation, "Why Lyme Doctors Don't Take Insurance":
Read the books written by the top LLMD, Dr. H titled, "Why Can't I Get Better?" and his new one, "How Can I Get Better?". It is an excellent source of information.
Also read "Cure Unknown" by Pamela Weintraub. Check your local library or buy it used on Amazon.
posted
Thank you for your detailed and informative reply. I will most certainly follow up with the doctors you recommended if he does indeed have Lyme.
In the meantime, I understand that the standard test is often false-negative; but that better, more accurate tests exist. Do I have to go to an LLMD to get such a test or do regular doctors have the ability to order them if I push for it? And what kind of test do I even ask for?
Or, if not, are there at least any LLMD doctors in Georgia ( I'm in the Atlanta area ) --- even if they're not very good at *treating* the disease --- who would be able or willing to order the more accurate test(s) ?
At this point, my son has flu-like achiness, a sore (achy?) jaw, little appetite, a three-day-so-far fever ( 103 at its worst) and a puffy, droopy eye. I don't want to be an alarmist, and have never been one to take my kid to the doctor for garden-variety illnesses on the rare occasion that he has been sick; but this time I'm worried.
Posts: 4 | From Georgia | Registered: Jul 2017
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TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
CampersMom, unfortunately, you may have to go to a lyme specialist just to find out if your son has lyme.
There is much for you to learn to understand why. For example, regular doctors will NOT order the best lyme tests from the best labs.
And, there is no sense in getting your son tested right now anyway. You need to wait about 6 weeks after his tick bite to have a chance at an accurate test. Here's why:
The test you want is the lyme Western Blot. It is a blood test that looks for antibodies to the lyme bacteria. It does NOT look for the lyme bacteria itself.
Antibodies take several weeks to form. In all of my reading, the concensus is to wait 6 weeks after the bite before looking for antibodies through a Western Blot test.
You want the doctor to send the blood to a "reference laboratory" that specializes in tick-borne diseases, but regular doctors will NOT send blood to any labs but the ones they routinely do business with.
Most lyme specialists consider Igenex in California the best reference lab. Just the lyme Western Blot alone costs about $200-$300. They do not take insurance. You pay up front.
You really need to get an education on lyme disease so that you can decide at what point to travel and spend the big bucks to see a lyme specialist for your son.
The specialist will mainly make the diagnosis based on his symptoms and his history of a tick bite. A good one will then give him a trial course of lyme antibiotics to see how he responds.
You can try to get your regular doctor to prescribe doxycycline for your son right now based on his history of tick bite and then getting sick.
If he will do that, then see if the doxy makes your son feel any better. If it does, then you know he likely has lyme.
The document you want to study is the Burrascano Lyme Treatment Guidelines found here:
For now, study page 7 which tells you how lyme disease is diagnosed. Here are some sentences for you to focus on:
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. (top of p. 7)
[This quote tells you that there is no 100% accurate lyme test, so you rely on the clinician or doctor to make the diagnosis of lyme disease. Based on this statement, you can see that you want to see the best lyme specialist you can so that the diagnosis is made by an expert.]
"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... " (p. 7)
"After a tick bite, serologic tests (ELISA. IFA, western blots, etc.) are not expected to become positive until several weeks have passed." (p. 7)
[Serologic tests are blood tests that look for antibodies in your blood. They do NOT look for the lyme bacteria itself.]
"Because Bb serologies often give inconsistent results, test at well-known reference laboratories."
[As discussed above, Quest and LabCorp are not well-known reference labs. Lyme specialists know the well-known refrence labs. When Dr. Burrascano speaks, he always recommends Igenex in California as meeting this criteria. Look at their website to learn more about them.]
"The suggestion that two-tiered testing, utilizing an ELISA as a screening tool, followed, if positive, by a confirmatory western blot, is illogical in this illness. The ELISA is not sensitive enough to serve as an adequate screen, and there are many patients with Lyme who test negative by ELISA yet have fully diagnostic western blots. I therefore recommend against using the ELISA. Order IgM and IgG western blots..."
[Here, again Burrascano is telling doctors to NOT do what they normally do which is to order the ELISA test. Rather, you want the Western Blot. Good luck getting a regular doctor to do this for you.]
So, hopefully, this gives you a little idea of the resistance to diagnosis and good testing that will occur when you go to a regular doctor.
Look at the lyme symptom list on pages 9-10. This may help you decide to get to a lyme specialist right away. Good ones can have months long waits. I can give you the name of a doc in Maryland that has practically no wait if you end up needing such a doc.
Please notice this sentence on page 7 also:
"You should not miss the chance to treat early disease, for this is when the success rate is the highest. Indeed, many knowledgeable clinicians will not even order a Borrelia test in this circumstance [meaning when there is a bulls-eye or EM rash]."
The sooner you can start him on appropriate lyme treatment, the better because then treatment is most likely to be successful. (Lyme is difficult to cure.) And, the sooner you start, the faster he can be cured. The longer you wait, the longer you will have to treat.
Dr. Burrascano was the lyme disease pioneer and the #1 lyme treating doctor in the world when he was practicing. So, please take his words seriously. He published his Guidelines so that all doctors can read them and learn what he learned about lyme disease.
Unfortunately, the Infectious Diseases Society of America (IDSA) has educated all U.S. doctors to believe that: 1. lyme is RARE (so they will think that your son most likely does NOT have lyme, it is so very rare) and 2. that it is easily cured with up to 30 days of doxycycline.
Meanwhile, the truth is that lyme is worse than an epidemic and it is extremely difficult to cure, especially if the patient has it for some time.
You will get insufficient antibiotics from a regular doctor. The dosage will be way too low and the length of the prescription will be way too short. (This is what I experienced in my lyme journey as has nearly everyone else on Lymenet.)
You want him treated until he is symptom free, and then treated a little more no matter how long that takes--2 months, 6 months, etc..
So, now you see the major medical controversy surrounding this disease and the 2 camps that have formed in the medical community.
Try to get your son preventative lyme treatment from his current doctor NOW and test it out for yourself. See how the system works and see how you get treated!
Get back to us if any questions or problems.
Welcome to LymeNet! We will help you here all we can.
Posts: 9931 | From Maryland | Registered: Dec 2007
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posted
Thank you, TF, for all your help. And thank you again, hopingandpraying, for your info as well. I will inform myself and start recording any symptoms.
I'm still taking him to the doctor tomorrow to rule out other things, and will push to get him properly tested in another month or so.
TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
Also, on the left side of the page, you will see Support Groups. Check out what is in Georgia and any nearby states.
Perhaps these folks can give you names of lyme friendly doctors near you who would put your son on doxycycline right now based on the tick bite and his symptoms.
A lyme friendly doctor is willing to treat lyme more readily than other docs and will also treat longer. Such a doc has a regular medical practice, so he does not specialize in lyme, but he will help you more than the average doctor. I hope you can get your son to such a doc right away.
He might even order an Igenex Western Blot for you.
You might want to ask the lyme support groups about the doctors listed on this webpage also:
posted
I took my son to a GP this morning. We are new to Georgia and do not yet have a relationship with any doctor here.
But a PA at this office saw my son last month for his camp physical; so he was considered an established patient, luckily, and they were willing to squeeze him in today. I insisted on seeing an actual doctor, not a PA or NP.
The doctor perked up when I mentioned that the tick-bite happened in Vermont and seemed to take my concerns at least somewhat seriously.
She did do a Western Blot and did prescribe 45 days of doxycycline. He is to go back in two weeks for a follow-up visit and second blood test.
If either one comes back positive she is going to send us on to an infectious disease specialist. If negative, she will consider it "done" (though I won't...)
I now have a couple of leads on Lyme-friendly doctors here, and am waiting to hear back from ILADS for a list of LLMDs.
I intend to request copies of both of his test results to keep for my own records.
If both tests come back negative ---which I know is likely because they often have false-negative results and because it may be too early for the antibodies to be present --- I will follow up with a Lyme-friendly doctor or preferably an LLMD for further testing / monitoring.
posted
Lyme Disease is a clinical diagnosis made by a Lyme-literate doctor (LLMD) based on medical history, symptoms, test results, etc.
It's good you were able to get your son seen by a doctor who not only prescribed abx but did the Western Blot and I'm glad you have names of "Lyme-friendly" doctors, but you MUST get your son to a LLMD for proper treatment.
Some important things you need to know:
Stay away from Infectious Disease Doctors (IDSA). They believe one dose of antibiotics is enough and don't believe in chronic Lyme. Patients end up getting sicker.
Here is a link for you to read about "Two Standards of Care":
Also, just because a doctor belongs to ILADS does not make him/her "Lyme-literate". They only refer doctors to people, but don't know anything about them. You need to get names from personal references and by checking the GA Lyme Support Groups.
You were sent names of very good LLMDs - please use them. Get your son to one a.s.a.p.!
Btw - I know you are new to Lymenet, but please break up your posts into 2-3 sentence paragraphs, as there are people on Lymenet who cannot read large blocks of text due to neurological problems from Lyme.
To do this click the pencil/paper icon, make your changes, then click "Edit Post". Thanks.
Posts: 8981 | From Illinois | Registered: May 2006
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TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
CampersMom, getting names from ILADS is a bad idea. The ILADS names can be any doctor who wants his name referred to patients. It doesn't mean that the doctor is any good, or ever cured a lyme patient, or even knows much about lyme, or even believes in long term lyme.
ILADS offers this referral services, and doctors take advantage of it, but ILADS does not know these doctors or anything about them. They refer any doctor who wants their name referred. This is not the way to get names of doctors for your son.
So, you really need to ignore those names. ILADS is sending you the names of the doctors nearest to you. That is NOT what you want.
I am very happy that you got your son some doxy. However, I am sure that it is not a sufficiently high dose. The dose should be 200 mg twice per day. Regular doctors give only 100 mg twice per day.
Also, in case you were not told, as long as your son is on doxy, he must avoid sunlight. If he stays out in the sun, he can develop a chemical burn that is so horrible that horrible is not a bad enough word for it.
His hands are likely to be the first to react to the sun. So, he can't have his hands in the sun for any extended periods. That includes sunlight coming through the windshield.
So, no going to the beach or pools except in the evening and no playing outside for an hour even.
Also, when taking doxy, it needs to be taken in the middle of a full meal. So, eat half a meal, take the doxy, and then eat the other half of the meal.
This is what all lyme specialists tell their patients to do. Otherwise, your son will begin having nausea and vomiting. Doxy is hard on the stomach, so be sure he takes it this way. Otherwise, he will NOT be able to continue it for 45 days or anywhere near that amount of time.
And, he should not lay down for at least 30 minutes after taking the doxy. If he does, it could come back up in his throat and burn the throat severely.
So, these are the rules that all lyme specialists tell their patients to be sure to follow with this med.
I hope you do end up with a Western Blot test result, but don't be surprised if all you end up with is an ELISA or EIA test.
Unless instructed otherwise, regular labs will do a screening test, and only if it is positive will they go on to do the Western Blot.
I am happy that your son got some treatment. Keep note of his symptoms. I hope he begins to feel better. But, on a low dose of doxy, nothing may happen.
"The TETRACYCLINES, including doxycycline and minocycline, are bacteriostatic unless given in high doses. If high blood levels are not attained, treatment failures in early and late disease are common. However, these high doses can be difficult to tolerate. For example, doxycycline can be very effective but only if adequate blood levels are achieved either by high oral doses (300 to 600 mg daily)..." (p. 14 of Burrascano)
Notice the first sentence in the above quote. Bacteriostatic means that the meds simply keeps the germs from multiplying. So, at low doses, that is all that doxy will do.
Your son needs 300 to 600 mg daily to actually kill the germs.
As the quote says, this dose can be hard to tolerate. It is talking about how doxy upsets stomachs. That is why lyme specialists tell patients to take doxy in the way I have explained above.
So, this quote tells you that treatment failures are common with lower doses of doxy.
Posts: 9931 | From Maryland | Registered: Dec 2007
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Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
Welcome to LymeNet!
Sorry your son is having these problems. Glad to see you are willing to buck the system if needed and do whatever is needed to get him help. Good for you!
If you are still looking for a Lyme treating doctor.... please go to www.MarylandLyme.org and look at the menu to your left you will see "DOCTOR REFERRALS".
Click there to find the names and contact information for health care professionals in many fields who are treating Lyme & TBD's in all of the states.
You may also want to write this number down for future reference, especially for when you go back to the GP in two weeks.
74.9%
It is the percentage of people with Lyme disease that the tests miss. And that is BEFORE antibiotics are taken which typically will remove any chance at all of getting a positive test.
Good luck to you and you son. Hoping he feels better soon.
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