posted
I am new to LymeNet and am hoping to find a LLMD for our very, very sick 18 year old daughter. She has had health issues for the last 7 years and has been to more doctors than I care to remember trying to figure out what was making our once vibrant daughters life a living nightmare. She has been diagnosed with everything from chronic fatigue, gastroparesis, POTS, and now possible mast cell activation disorder (which we still need to pursue). I spend hours researching on the Internet and although she was tested for Lyme disease years ago that turned up negative (using the Western Blot) we feel that she has too many of the symptoms to not re-investigate it again now for chronic lyme with a newer test that is more accurate (perhaps the CD57 test or something similar??) - we also want to investigate a Bartonella possibility, etc. However, we are new to the Charleston SC area and need an LLMD expert. If anyone knows of any doctor in our area please respond as we are desperate for answers and a diagnosis - our daughter missed out on all of her teenage years and we want to make sure that she can participate in life again in early adulthood now. She needs her life back. Thank you.
Posts: 1 | From Charleston, South Carolina | Registered: Aug 2014
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posted
Hello. Welcome to Charleston. I just moved from there to Sarasota.
I do not know any in the S.C. area, however, after having three LLMD's from Pennsylvania to Florida over the years, I can tell you the best LLMD I know lives in **** and would be well worth the drive. She has lyme and so does her daughter. She has put them both in remission.
I'd be happy to send you her name and info. She not only takes insurance, but does rife treatments and full herbal protocols and top of abx if needed. She's integrative.
So sorry to hear about your daughter. She might have had a false negative.
Susan H.
***edited city of LLMD .. Please PM Susan for info***
posted
Welcome to Lymenet. PM sent with some suggestions.
There are no Lyme-literate doctors in SC.
Because your daughter's case is so complex, you must take her to one of the best LLMDs, which means going out of state if you are able to travel. We have been doing this for several years now.
My heart breaks for you as we have gone through (and still are!) the same heartbreak. Our beloved son has been ill for fourteen years now (it took 6 YEARS just to find out what was wrong with him!).
He lost more than his teenage years and our family has suffered too. It is an absolute nightmare!
Your dear daughter 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!
She also needs to be tested through IGeneX Labs in Palo Alto, CA.
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":
Keep researching Lymenet on a daily basis. It is a great reference and learning tool.
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. Thanks.
Posts: 8981 | From Illinois | Registered: May 2006
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TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
On the east coast, once you go south of Washington, D.C. there are VERY few lyme doctors. And, the best ones are located in D.C. and north.
To get info on lyme doctors, you can contact the lyme support groups in your area and in nearby states. Just click on Support Groups on the left side of the page.
Do a lot of research before picking a doctor. Ask around a lot, etc.
I also strongly suggest that you read and STUDY the Burrascano Lyme Treatment Guidelines found here:
It isn't an easy read because it was written to doctors, but it will give you your education on this disease.
I believe you are very wise to reconsider lyme disease as the lyme tests are not very reliable. This is so true, in fact, that the state of Virginia passed a law that when a patient is given their lyme test results, it must say right on the result that even if you get a negative result it does NOT mean that you do not have lyme disease. You could still have the disease and test negative, in other words.
Also know that there is no standard treatment for lyme disease. The Burrascano protocol is a high-dose antibiotic protocol. But, other lyme doctors may just offer herbs, or low doses of antibiotics, or alternative treatments such as rife machines.
So, it really pays to be an educated patient.
I got rid of lyme disease by switching to a lyme doctor who followed the Burrascano protocol. Then, I sent 5 of my friends to Burrascano type doctors and they also got rid of their lyme disease.
So, I beleive in the Burrascano protocol because I have seen it work over and over again. It is used by doctors in many other countries. It is the most successful lyme treatment protocol there is.
I had lyme for at least 10 years before a doctor finally tested me for lyme and I got my diagnosis. Still, I got well.
But, the doc is the key to getting rid of this horrendous disease. I can't emphasize that enough. Get to the very best lyme doctor you can, and get on the waiting lists of the very top doctors so that eventually you can take your daughter to one of them. You always have to wait to see the best doctors.
Good for you for finding LymeNet and asking for a doctor here. We will help you all we can.
Posts: 9931 | From Maryland | Registered: Dec 2007
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