I'm very sorry to have to let you all know that I am no longer going to help you try to find the names of LLMDs in your area. I'm dealing with a lot of family issues right now as well as my own...
Thank you Wryter. We can use all that good energy. I appreciate it so much....
Hello All, I am Dan's Mother and when you Email me, I try to help you find a doctor in your area. I have to apologize for the delay in answering recent requests. My son was hospitalized and had been...
Socal Yogi, You can go to mthfrsupport.com and click on Find a Practitioner. They have a list of doctors and practitioners who can help you with both issues as they usually go together. Lots of good...
+Lyme, A lot of the testing for mold issues can be done thru LabCorp and is covered by most insurance. Check out Dr. Ritchie Shoemaker's book "Surviving Mold" and his website survivingmold.com. Both...
I''ll be glad to help you find a LLMD in NJ or NY. Click on my user name in the column to the left, email me and tell me how far you are willing to travel. Take Care, Karen...
Markus, We don't post doctors names on the forum, but if you click on my user name to the left, email me, and I will be glad to help you with the names of doctors in NC. Take Care, Karen...
Hi, If you would like the names of LLMDs in your area, click on my name in the column to the left, email me, and I will be glad to help you. You might also want to consider having your daughter's...
My son spent 4 1/2 years on abx with a famous LLMD. The last time we saw him, a year or so ago, he said that we should test him for everything and try everything. Since we live in NY, there are many...
Hi, I'm Dan's Mom, the one who helps people find the names of doctors in their area. If you are interested, I have the name of someone in FL who can help you find a doctor in the meantime as well as...
Hi frikandfrak, My son had similar symptoms, all neuro. He wasn't getting better after 4 yrs. on abx. We got his methylation pathway checked and he has a mutated gene and a COMT polymorphism. We took...
Hi Elaina, I'm so sorry that your friend is dealing with Lyme Disease. I, too, am on Long Island and I work with Empire State Lyme Disease Assn. I have a list of doctors who are Lyme Literate and...
It would be great to get another Lymeapalooza together! Dan and I would be there in a heartbeat! I can't say enough good things about Dr. B. He has helped tremendously with Dan's behaviors. Other...
Thinking back to when Dan was on Cowden, it seems to me that he was taking 10 drops of each. After reading Eva Sapi's study, we are going to try him on just the Banderol and Samento again. What we...
Hi Chris, I don't know if you remember me, but I met you very quickly at Lymeapalooza II a couple of years ago. I have just been helping a parent in a similar situation. I got in touch with Tracy and...
This arrived in my Email today. Thought it was worth passing on. [u]Ode to Filaria, Lyme and What Else? [u]or Someday Wil We No Longer Be, "Still Sick?" In 1958 Wily Burgdorfer came here From ony the...
Hi Tracy! I'm just wondering if you could Email me the name of the doctor that is treating you for KPU. I've been toying with the idea of going out to Seattle to see Dr. K., but you really have to...
Hi frikandfrak, My son (now 25) was diagnosed with Lyme when he was 13 (swollen knees), treated with 30 days IV abx and declared cured. The symptoms came back the next year and again he was treated...
Well said PCPC! We, too, started out on a natural pathway and when that didn't help with seizures and the psychosis, we had to go the drug route. Now that things are getting better, we are going back...
Hi, I think we met at the last Lymeapalooza in Manhattan. My son, Dan, was dealing with a lot of the same symptoms. He has been on a small dose of Lexapro for about 2 years. That along with Seroquel...
Hi +Lyme, From what I have read, in Europe they use even higher doses of Amoxycillin with very good results. My son just spent 4 mos. on 7,000mg. (7 grams). He seems to have plateaued and his LL...
RottenDog Could you email me that link as well? Thanks, Karen...
I started losing my sense of taste after I was bitten by a tick, but didn't associate it with Lyme until I was dxd. I have also lost my sense of smell. Since I have been on treatment, I...
Hi Sojourner, I have a feeling that your post touched a lot of people. I know it helped me! What started off as a rough morning (feeling very sorry for myself), got a lot better after reading your...
Thank you all for your replies. As always this forum comes through with answers. This information is for a fellow lymie who has be dxd by a neurologist with Somataform Disorder. Most of us on this...
Has anyone been diagnosed with a Somataform disorder? It is also known as Briquet's syndrome. According to Wikipedia, it is a psychological disorder characterized by physical symptoms that mimic...
My son is quite a bit older, 24, but he has low IgG. His LLMD sent us to an immunologist who ran a lot of tests and then told us that they didn't believe in chronic Lyme and Dan didn't exactly fit...
Hi Pomfrey! Welcome to the board! My son has neuro-psych Lyme as well. When we first started treatment, we started him with homeopathy. The first month or so went really well, then they really...
My son has been seeing Dr. K for the last 5 mos. He found things on Dan's MRI and 24 hour video EEG that other neurologists had not been able to find. He is a bit eccentric, but very nice. Plan on a...
I'm so sorry that you got bitten again. I can relate to wanting to be out in the yard. If you wear clothing that is sprayed with Permethrin, (I use Sawyers from Cabelas) the little blood suckers curl...
Hi Judy, Yes he does! If you email me, I will gladly give you his contact information. Take care, Karen...
Hi Lisa, I'm so sorry you had such a bad experience with Dr. K. When we first started seeing him, we were warned that he is not really knowledgeable about Lyme, but he has helped Dan. He is a bit...
Hi Keeping the Faith, My son has been on a form of IVIG for just about a month. Instead of getting it via IV, we give it to him sub-cutaneously. It's called Viva Globin and we infuse it once a week...
Dowa, Yes they do think the low IgG was caused by Lyme. Dan had been a very healthy, active, young man before Lyme. The mainstream immunologists that we saw said that most people with low IgG have a...
My son just had his 3rd infusion of Sub-cutaneous Immunoglobins. He has low IgG and three of the lyme literate docs, neurologist, PCP, and psychiatrist, all felt that he would benefit from it. He has...
After I started treatment, I herxed pretty badly for a month or two and very gradually started doing better and better. Periodically, the pain will cycle back around, but it only lasts for a day or...
Hi, My IgenixTests came back positive on 41 and IND on 31. My LLMD has been treating me for over a year and I am definitely improving. A lot of the ILADS feel that and IND especially for a band that...
Hello LaughsAtDisaster! Glad to see you back on the forum! How are you doing? Your sense of humor has certainly been missed. If you feel up to it, would you Email me----I would like to talk to you...
My son had a spinal tap and was positive on 6 bands of the IgG. They (major teaching hospital on Long Island) told us he "absolutely " did not have Lyme Disease. We were told by neurologists and ID...
Hi Shadowmom, You mentioned that you were told that the cost of IV Rocephin was about $5,000 a month. When insurance would not pay for my son's IV Rocephin after 30 days, we found a company called...
Hi Cheyanna, My son saw Dr. H and his PA for almost two years. Most of the time we saw the PA, who is great. She is very supportive, but speaks very fast. Be sure to bring someone with you to the...
I did get the Email and I am so sorry for not responding sooner. Dan has been having a rough time with herxing. Thank you so much for all that information. There were quite a few things that we...
Thanks so much for posting this. I had seen so many people post about the problems that they have had tolerating tygacil, so I'm glad to see that there are people with cast iron stomachs ( like my...
Hey Gretchen! So glad to hear that you and Alyssa are doing so well! Sorry to hear about your husband, but then you always said you thought he had it as well. I know what you mean about your new best...
Hi Northlover, There is an easy way to test for ticks -- drag a white sheet across an area where you think there may be ticks. But, make sure that you spray your shoes, socks and clothing with...
I, too, am experiencing some hair loss, but my 24 year old son, has lost quite a bit of hair. He used to have a full head of hair, but now you can see his scalp and his hairline is also receding. I...
We get the Rocephin and all the supplies from a company called Community Surgical in Toms River, NJ, for about $600.00 a month. We mix the powdered rocephin with a vial of sterile water and inject it...
Thank you so much for posting this. I sat here and laughed and giggled out loud! You made my day! Karen...