posted
Our son was diagnosed in Jan. with Lyme, Bartenella, Babesia, and protozoa after having strep throat from which he never recovered completely in spite of antibiotics.
He went through several different treatments and was feeling better the month of Aug. He started school and went 3 days and all the old symptoms came back.
It is very discouraging. His dr. wants to do Lyme culture and retest for bartenella and babesia. But he has to be off antibiotics for 1-2 months.
Is this the wise route to take?
Or should we take him to a different dr?
His dr said his case is a mystery. Thanks.
[ 10-02-2015, 10:48 AM: Message edited by: deevee ]
Posts: 2 | From United States | Registered: Sep 2015
| IP: Logged |
Your dear son needs to be evaluated and treated by a Lyme-literate doctor (LLMD) a.s.a.p. 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":
Btw - 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 on "Edit Post". Thanks.
Posts: 8981 | From Illinois | Registered: May 2006
| IP: Logged |
TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
When the doc says your case is a mystery, that means it is beyond the doctor's experience and expertise.
The case is a mystery to HIM.
There is a good lyme doctor in Maryland, outside of D.C. who can see him rather quickly. If you want the name, let me know.
If your son tested positive for lyme in the past and still has the same symptoms, then he doesn't need tested for lyme again.
Instead he needs more effective lyme treatment.
I certainly would NOT stop treatment for 1 to 2 months just to do another lyme test.
When I was treating lyme with a doc who didn't know enough, he would tell me to stop meds to see what would happen. (I still had mild symptoms.) All it took was 2 weeks off meds for me to become a complete basket case.
I got to hear Dr. Burrascano speak shortly after that. I asked him about my case. He said that "if the therapy is inadequate, the disease will continue to progress."
That is how it finally hit home to me that my doctor's treatment was inadequate and my disease was continuing to progress in spite of his high-dose one antibiotic therapy.
If you are not familiar with the Burrascano Guidelines, you really should read and study them. You will then be able to evaluate the doctor's treatment of your son. This is ESSENTIAL to be able to answer the question of whether or not you should do what this doctor is saying to do.
It is also permanently at the top of Medical Questions on LymeNet.
Here are a few points from Dr. B's guidelines:
You must attack both the regular and cyst (or other) form of lyme simultaneously--requires at least 2 different antibiotics taken together to do so.
You must test the patient for all co-infections and other physical ailments (thyroid, etc.) and treat everything the person has.
You must treat all co-infections the patient has(including babesiosis, bartonella, ehrlichia, mycoplasma, etc.) or the patient will not get well.
You must use Igenex for most of these tests--they are a tick-borne disease speciality lab in Calif.
You must use very high doses of antibiotics to kill the diseases (batericidal doses).
You must give the patient supplements, probiotics, herbs such as artimesinin if babesiosis is suspected, and require adherence to rules such as low carb diet, no alcohol, no smoking, rest, and exercise as the patient is able to do it.
You must treat at least 2 months after all symptoms have disappeared (if sick at least 1 year).
If you want to tell us how your son was being treated, I will tell you if it lines up with Burrascano. Just name the medications, the dosages, and how often he took each one.
The Burrascano Guidelines list the symptoms of lyme on pages 9-10 and the symptoms of the coinfections on pages 26-27. Good lyme doctors can tell by the patient's symptoms whether or not they still have these diseases. They do NOT retest the patient.
Ha! I completed my lyme treatment over 10 years ago and I am still symptom-free, enjoying my life. BUT, when an ENT decided to test me for lyme 3 years ago (yes, because he was having trouble clearing my sinus infection), my Western Blot came back positive for lyme.
I had to tell him that I had lyme in the past, so the test will likely come back positive for me for years.
So much for retesting a lyme patient. I hope you can see that you really need a very good lyme doctor, the best you can afford, to help your son get rid of these horrible diseases.
Posts: 9931 | From Maryland | Registered: Dec 2007
| 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/