posted
Hi, For the past several months I've been having joint issues. I asked my physician to test for lyme and I'm awaiting my results. I'm breastfeeding my baby and my physician immediately said I would have to stop breastfeeding if test is positive. Should I go see a llmd to just get tested? Is regular blood test at physician office sufficient? Can someone recommend llmd in MD (if breastfeeding friendly that's a bonus! Lol). Thanks!
Posts: 4 | From Maryland | Registered: Oct 2016
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You need 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. You need to go where they are.
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":
TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
I sent you the name of a good lyme doctor in Maryland. Seeing a lyme doctor is expensive, so you MAY want to wait to get the results of your lyme test before deciding what to do.
Your doctor may have ordered a Western Blot for you. If so, that is the proper test. Still, he likely ordered it from Quest or LabCorp. These are general blood labs, meaning that they do not specialize in tick borne disease testing. So, many people will get a negative lyme test from these labs.
A good lyme specialist, on the other hand, will send your blood to lyme disease specialty labs. He will order a number of tests to try to find lyme or the lyme coinfections. These specialty labs find lyme disease more often than Quest or LabCorp.
Also, if your doc ordered some other test, not the Western Blot, then he ordered a totally inadequate test.
Still, if you get a positive on the test he ordered, it means you do have lyme.
The problem is that these tests miss so many cases of lyme. So, if it seems that you may have lyme, you should see a lyme specialist if your lyme test comes back negative.
MANY people get a negative lyme test but actually have lyme. So, the thing to learn from this is that the lyme tests are unreliable.
Because good lyme doctors know that, they will spend an awful lot of time with you at the first appointment asking you all kinds of questions about all kinds of symptoms. If you have enough symptoms that are characteristic of lyme disease, they will treat you for lyme even with a negative test.
How you react to this trial course of antibiotics determines your diagnosis.
If you want to look at a good list of symptoms, look at pages 9-10 of the Burrascano Lyme Treatment Guidelines found here:
Once you review this list, you may decide that it seems likely that you have lyme. The more symptoms, the more likely.
Joint pain is a classic lyme symptom. So is a stiff or sore neck, a swollen knee, and problems with thinking and memory.
If you just gave birth, it is also possible that your baby has lyme, acquired in the womb from your blood supply.
If you have lyme, as long as you get on proper antibiotic treatment, you can still breastfeed. But, not all doctors know the proper treatment for a pregnant or breastfeeding mother.
Dr. J in Connecticut is the world's foremost pediatric lyme specialist. I took notes of a talk he gave on gestational lyme at a lyme conference a few years ago. He described what a baby born with lyme disease could be like symptom-wise and how to treat the mother. Here is a link to my notes so you can read them.
Sometimes a woman has lyme and doesn't know it. Then, pregnancy or post-pregnancy brings out her symptoms. Read pages 21-22 of the Burrascano Guidelines entitled "LYME DISEASE AND PREGNANCY."
Be sure to get a copy of the lyme test results from your doctor whether he says the test came back positive OR negative. The reason for this is that a general doctor does NOT know how to look for signs of lyme in a Western Blot test results. He will just read the word "positive" or "negative" that summarizes the result. However, a lyme specialist is more sophisticated than that.
Many times the lab will summarize your test result as "negative" but you will have certain "bands" that indicate lyme disease. When a lyme doc sees these certain bands, he knows that they are evidence of lyme.
The lab summarizes the result as positive or negative using the Centers For Disease Control (CDC) surveillance criteria. That criteria requires quite a few positive bands before it is deemed "positive." A lyme doctor knows that even one or 2 positive bands can indicate lyme disease.
So, a "positive" on your test result is not necessary to have lyme disease. Get a copy of the test result and post it here and we can tell you if it indicates lyme. Also, take that result to your lyme specialist.
If you want to know what a lyme specialist considers significant on the Western Blot test, see Burrascano's Guidelines, page 7, "Western Blots."
If you want to read where Burrascano says that none of the lyme tests are reliable, see page 7 at the very top where he says:
" 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."
This is why your first appointment with a good lyme specialist will last at least an hour. He is doing what Burrascano says here--trying to determine by interviewing you whether you have lyme, babesiosis, bartonella, ehrlichia, mycoplasma, viruses, etc.
You get more than one disease from a tick bite. Generally, everyone in Maryland who gets lyme is also infected with babesiosis and bartonella. I only know one person (out of hundreds) in Maryland that did not have all 3. Our ticks carry all 3 if not more.
Welcome to LymeNet! We will help you here all we can. I am so glad you found us and asked for a doctor here.
We will gladly answer any of your questions. Be happy that we have some very good lyme specialists near you. Many people have to fly here for their lyme treatment.
Finally, I went undiagnosed for at least 10 years, going from doctor to doctor, before a very smart doctor finally decided to test me for lyme.
Still, even though I had been sick so very long, once I got to a GOOD lyme specialist who followed the Burrascano protocol, I got well.
When I went to doctors who had regular medical practices who took insurance but also treated lyme disease, I did NOT get well. I wasted 2 long years taking their antibiotics.
So, the take-away is this: Many doctors treat lyme disease, but just a few--a VERY FEW--know enough to get rid of this horrendous disease for a person. There are junky lyme doctors, good ones, and great ones. I am pointing you to a really good one who can see you quickly.
With him, you have the best chance of getting rid of this hard to cure disease. I got rid of lyme disease over 11 years ago now and I am still symptom free, enjoying my life.
And, I sent at least 5 of my friends and neighbors to Burrascano type doctors and they also got well. So, I strongly urge you to get to one of the few lyme doctors who follow the Burrascano protocol.
Posts: 9931 | From Maryland | Registered: Dec 2007
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posted
Thank you so much everyone! I'm going to see dr. J next week! I should have my test results from my regular physician by then, so I will post it on here if any of you want to take a crack at it. I appreciate the help and all your input!
Posts: 4 | From Maryland | Registered: Oct 2016
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