Girlie, what I should have written was 0% functioning properly in the biopsy on my ankle. I believe it was 28% at my hip. that was the only two locations tested. Yes it is very expensive! And the...
Girlie, yes on the SFN and also Autonomic Nervous system disorder. My Neurologist indicated it would take another 3-5 years of IVIG. I had 0% nerve function in the biosp 18 months ago. 3 and 5%...
I have been on CBC oil for about six weeks. I bought it from a local health food store. The brand is Clearly Better Days. I have worked up two two droppers in the AM. About two weeks ago my...
I can give you names in Portsmouth, NH and Boston. The Dean Center for Tick Borne Illnesses at Spaulding Hospital is amazing. I believe there is a waiting list so she might want to contact them soon....
Check out the Dean Center for Tick Borne Illnesses at Spaulding Hospital in Charlestown, MA. Absolutely fabulous. Email me for the names of two Doctors on the North Shore and an LLND in NH...
Papabear, You can email me and I will give you the name of my Neurologist at Brigham & Women's Faulkner Hospital in Boston Ed...
I have been dealing with extremely heavy nasal and throat mucous for years. My old LLND diagnosed me with a fungal infection ( Tricothecene) a little over 18 months ago. She prescribed a nasal spray...
Michael, please activate your email. We are not supposed to put the names of Dr.s on the board. My route to getting the prescription was circuitous. My Lyme Dr at Spaulding hospital in Boston...
Michael, I will send you an email, but please know that getting approval for IVIG was not easy. It is incredibly expensive; $89.800 per round of four doses. That being said, the improvement is...
I have a lot of nerve issues including small and large fiber neuropathy. My Drs have put me on IVIG. Completed my first round two and a half weeks ago, start the next round a week from tomorrow....
Several people had asked what dx and codes were used to get the IVIG treatment approved in previous posts. The dx codes were 661.89; motor neuropathy with multiple conduction block and 662.9;...
Several people had asked what dx and codes were used to get the IVIG treatment approved, both in this string and another that I could not find. The dx codes were 661.89; motor neuropathy with...
ZZ, I will email you the names of my Dr.'s. Do you have any neuro symptoms? I have a Lyme literate neurologist at Brigham and Womens hospital. Good luck, Ed...
K07, The results have not posted to my Portal yet, so I do not have details, just the summary from the Dr. Girlie, I have been off all Lyme meds since I had the imternal bleeding which led to the...
My new LLMD North of Boston ran a bank of labs that had not been run before. "Some of your test results are back. Most significant is the nasal/sinus culture. You are positive for MARCoNS, resistant...
I had internal bleeding for six months before they could find the bleed. The Dr.'s determined it was caused by a combination of Mupericin and Ampupericin which I took as a nose spray for my mold...
Wow, I had not realized this was such a common problem for Lyme sufferers. I will ask my Dr what code she used for insurance to approve the IVIG and post the answer here. It was prescribed before I...
I forgot to mention that he believes this condition is caused by both Lyme ans Babesiosis in those who have been infected for a long time. Ed...
I have been seeing a Lyme Literate Neurologist in Boston for a while now. He confirmed a previous diagnosis of Autonomic Nervous System Disorder, his specialty. He realized several years ago that...
Had a great appointment with my LLMD this morning. First an update: I have been off of all of my Lyme meds since August while dealing with other health issues. For anyone dealing with mold as well as...
I have no idea if this is related to my Lyme or not. I have been bleeding internally since October, and as a result have been anemic. Last Wednesday the 28th, I vomited a lot of blood (estimated to...
I was able to get in to see my Ophthalmologist Thursday afternoon. It actually happened again while I was driving to the appointment. When I described what had happened to him, he said I had almost...
Well this is one symptom I have not seen mentioned. Yesterday afternoon while I was eating lunch, I realized something was wrong with my vision. I was about 80% blind in my right eye. I also could...
unless I am very tired, I am ok in stores and walking around, but not for too long. I also have peripheral neuropathy which can make it painful to walk at times. I have vision problems as well that...
Jim, I have done Vestibular Therapy and found it very useful. Though, if I had continued with my exercises it would probably be even better. My LLND has also recommended Vagus nerve therapy which I...
Nick, You can try the Dean Center at Spaulding Hosptal in Charlestown outside of Boston. They will work with you to find an LLMD near you as well as work with them to come up with a treatment plan....
Goshawk, email me for some options. Good Luck, ed...
I woke up this morning with a mouth full of saliva. I had difficulty swallowing it as the left side of my tongue was swollen to the point where I needed to open my mouth fully to place my upper teeth...
Thanks for all of the well wishes and input, especially your links Trav. I found the Mercola article very interesting. I really think one of the hardest things we have to deal with with this disease...
Saturday morning I woke up and felt a little unsettled in my stomach. I went to the bathroom, and the feeling continued. I felt the need to vomit and was amazed at the amount of dark red bright blood...
Bump...
Thanks all, I just want to be clear that I have no vested interest in Spaulding. I am simply a thankful patient wanting to share with others as this Center seems to be a very unique situation. As far...
Girlie, It has been described to me a a tilt table test on steroids. I had one once before by another Doc, but I was so bad back then it was not a valid test and I really don't remember much about it...
HappyJo, I was not clear, I am sorry. the focus of the Dean Center is not to be the primary Lyme Doc for patients but a resource to find LLMD's and/or to support those doctor's and their patients....
Krimpet, I did not read into the links to the CDC as those were by the author, not Nev. Happy Jo, I do not remember discussing ILADS with her. But she is very much frustrated with the attitude of...
I will be interested in hearing comments about this. I am not the expert many of you are about Lyme, but I have been very happy with the care I have received at Spaulding Hospital in Boston from Nev....
This "syndrome" for lack of a better word is pretty rare. My Cardiologist was reluctant to diagnose me because usually this happens to females in their 20's. I am a 50 year old male. He referred me...
Girlie, for me at least it is for tachycardia. My blood pressure has never been an issue. My resting heart rate was as high as 175 when the symptom began and before medication. Inappropriate sinus...
I believe a few people on here have been diagnosed as I have with Inappropriate Sinus Tachycardia. I am on 100 mgs of Metoprolol 3x a day. My Cardiologist just recommended adding 5mgs of Corlanor x2....
I have been taking BEG Nasal spray for about six months now up to two sprays in each nostril twice a day. Other than some pretty violent sneezing just after taking it I have had no side affects;...
I have posted about this several times. I am a patient and have been very happy. They do not directly treat Lyme or prescribe abx. They work closely with your LLMD or help you find one in your area....
Sorry folks, I did post a couple of times about my experience, but I started new threads. My experience has been very positive. Again, they are not acting as my LLMD, but supporting the LLND I...
I highly recommend the Dean Center for Tick Borne illnesses at Spaulding Hospital in Charlestown, MA. They will refer you to a Lyme Literate Dr, whether MD or ND in your area. They will then help you...
I saw a Neurologist yesterday in Boston. His specialty is Autonomic Nervous System disorders. A number of years ago he realized that a number of his patients had Lyme disease. He began to investigate...
The Dean Center for Tick Borne Illnesses at Spaulding Hospital has been very good for me. They coordinate your care and try to treat the symptoms while you are healing. They have an extensive list of...
I have an appointment in Boston next week with a Neurologist who is supposed to be Lyme literate; time will tell. He is a Harvard professor and specializes in Autonomic Nervous system disorders,...
Governor signs Lyme testing notification law http://www.icontact-archive.com/FBkbi1IUxiGEZy8CZmrP82mUt4whLdot?w=2 ...
The Dean Center at Spaulding Hospital is great. I am not positive about children, but I have seen children in the waiting room. They do not treat Lyme directly, but refer to LLMD's and coordinate...
Are you on oral or IV Rocephin? My Docs are talking about putting me on IV Rocephin again. I had one off of oral abx while waiting for the insurance company t oapprove the picc line. It took a month...
Another article talking about a bill in Congress. So glad to see Lyme in the news. http://www.realclearpolitics.com/articles/2016/04/30/its_time_to_take_action_against_lyme_disease_130438.html Suzee,...