debbie5846

I am looking for a Lyme friendly Immunologist in the Cincinnati, Ohio or Northern, Kentucky area for IVIG treatment,for an adult with Lyme disease. My husband had Low IGG levels in all 4 sub classes, any recommendations?

Philamom, THANKS for the information, I will be calling tomorrow. Debbie

Philamom, We also did the new advanced labs culture test. Did you receive something from them for the insurance company, like Igenex does? If not what did you send to the insurance company? Thanks for your help, I am still learning how to send all of this in to the insurance. Debbie

This is a new support group on Facebook for people w/Lyme disease. It is a closed group. Lyme and Tick Borne Diseases Awareness & Wellness Solutions

Sorry, But I have one more question. The lab the doctor recommended we go to for the blood draw, will not let me take the box to FedEx , there policy does not allow them to give you back the blood sample. The BIGGEST problem with this, is the fact that the blood has to be drawn by 10am, so they can send it out. I don't think we should draw the blood that early. What lab did you use? Thanks again, Debbie

Philamom thanks for the information on the time, I am also planning on taking it to the Fedex building, I don't need the added stress, of worrying they won't pick it up on time. Another question, how long did it take after the blood was drawn for your doctor to receive the results? Thanks for all your help, Debbie

What time, is the best time to have the blood drawn for the new blood culture test. I know they say early afternoon. I had someone tell me 3 or 4 pm. Is this early afternnon?? Please give me your suggestions. Thanks, Debbie

What time, is the best time to have the blood drawn for the new blood culture test. I know they say early afternoon. I had someone tell me 3 or 4 pm. Is this early afternnon?? Please give me your suggestions. Thanks, Debbie

I am curious, if you had a choice between the New Lyme blood culture test and the Igenex Western Block test which one would you have done. Assuming the cost was the same and you didn't have to be off antibiotics for 4 weeks??? I know this is not the case. BUT I have a friend with Lyme symptoms and she is having trouble deciding which test to have done. She has not been on antibiotic treatment yet so that is not an issue. We are also trying to decide if my husband should be re-tested, before we start I.V. treatment. He has currently been off all antibiotics for 3 weeks. The oral antibiotics didn't help much, so the LLMD is suggesting starting I.V's. Most of his symptoms are neurological so he have had a few scary, neurological diagnosis given to use from the neurologist. Most have been ruled out thru testing, but some have not test. His first Igenex test was not negative, but also not positive. Please wieigh in with your opinion. Thanks!!!

How accurate is the new Lyme test?? Compared to the Igenex test??

JuliaFaith, Thank you for the protocal, I Just feel like we need to start something immediately, not wait two weeks. How many milligrams are your Chlorella tablets? How many milligrams are your salmon oil? What brand do you use and where do you purchase them at? What brand is your green clay and where do you purchase it from? What brand is your detox deodorant and where do you purchase it from? I really appreciate all your help and information.

LLM, Thanks for all the information, I am very hopeful that when we get the metals out we will start to see improvement. It will be 2 weeks till we can see the doctor our LLMD, recommended for the Heavy Metal treatment. What can we do till then, to start getting rid of these metals? My husband is currently on Chlorella 4 1000mg tablets daily. Would you recommended anything else?? Thanks, Debbie

Hello, My husband has been in Lyme treatment for 6 months now, he has had no improvement in his symptoms. His symptoms are muscle weakness and neurological symptoms. His LLMD ordered a Heavy Metals test from Doctor's Data. His Lead level exceeds three times the normal level. His Gadolinium is higher than expected. His Cadmium exceeeds twice the Maximum expected level. It will be 2 weeks before we can get an appt. with the doctor our LLMD recommended to treat the Heavy Metals. What can we do naturally or with supplements, to start getting rid of the metals??? He is currently on Chlorella 4 1000mg tablets daily. Any suggestions, would be appreciated. Thanks, Debbie

Hello, I wanted to add, that the Heavy Metals test my husband did was a urine test, he had to collect his urine for a period of 8 hours, you mix all the urine together, then send in a sample.

Hello, My husband has been in Lyme treatment for 6 months now, he has had no improvement in his symptoms. His symptoms are muscle weakness and neurological symptoms. His LLMD ordered a Heavy Metals test from Doctor's Data. His Lead level exceeds three times the normal level. His Gadolinium is higher than expected. His Cadmium exceeeds twice the Maximum expected level. Does anybody know what this means?? Any suggestions or ideas would be appreciated. The LLMD also ran a blood test with the following being High. Eos Above Normal High Eos (Absolute) Above Normal High A/G Ratio Above Normal High Does anybody know what this means?? Any suggestions or ideas would be appreciated. Thanks for everyones help & support, Debbie

Hello, We see a Lyme doctor in the Indianapolis area. I am going to send you a personal message with all the info. Look up in the right hand corner of the screen for your messages.

I sent you a personal message. I have a few questions about starting I.V.'s

My husband has Lyme disease and is currently in treatment, the LLMD just started him on injectible antibiotics and he had a herx, so took a week off work. Now his work has started the process for him to go on Family Medical Leave, he would prefer to just take vacation time, he has plenty.But they are now telling him he can't do that. Since he started treatment in June he has only taken a few days off work. Would appreciate input from anyone who has information on the Family Medical Leave Act etc. We can't afford for my husband to be off work without pay.

My husband has been on oral antibiotics for about 4 months now, with really no improvement in his symptoms. His lyme doctor is getting ready to start him on Rocephin injections. What has been your experience with this?? Any input would be helpful. THANKS, Debbie

Hello, I first want to say that I really appreciate all the help and information, all of you have given me. Sorry this is long, part of the reason I just needeed to vent. ( My husband now thinks he doesn't have Lyme) What do you think of the test results. My husband started treatment with Dr. L an LLMD in June 2011. These are his Ignex test results: Igenex June 2011 IgM: 31 IND, 34 +, 41 IND IgG: 41 ++ The doctor called the results highly suspcious. My husbands main symptoms are diffficulty swallowing, difficulty with speech, left leg weakness ( that causes him to fall easily), right arm weakness fatigue, brain fog and anxiety. We saw two Neurologist over a 6 month period before finally going to the LLMD, they could not find anything after lots of testing. Unfortunately my husbands symptoms have not shown any real improvement yet with the oral antibiotics and now he is starting to think he doesn't have Lyme, but does have a neurological disease. The LLMD has told him it takes a long time to start seeing improvement, but he is becoming very frustrated over all of this. He does have an Aunt with PSP ( a rare from of Parkinsons) he has had two Neurologist tell him he doesn't have it, but NOW he is back to thinking he does. Some days I feel think, he is going to drive me crazy. Any input would be helpful. THANKS, Debbie

I wanted to say THANK YOU, to everyone who responded to my question, I really appreciate all the great information. Debbie

My husband has recently started Lyme treatment, so all of this is new to us including ALL the out of pocket expenses. Any information on how all of you deal with all of the EXPENSES would be helpful. For example: Visit to the lyme doctor, not covered by insurance. All the supplements, can you write this expense off on taxes?? Can you write off mileage for doctor visits?? Compounding Pharmacy charges, not covered. THANKS!!