I was diagnosed with Lyme almost 2 years ago but the doctor said I have probably had it nearly 10 years. Do not want to go into how long with everything but she wants to begin Infusion Therapy at home. Any suggestions? My fiance and I have to look into how to make it more cost efficient since we are running out of funds. We will be having a fundraiser in February but any suggestions will help. Also, he is willing to learn how to do this and he is a retired Psychologist.
Thank you,
Moo
My first suggestion would be to get another opinion before beginning a PICC line, Moo. What type of doctor recommended the PICC line, and what type of testing was used to determine your diagnosis?
She is an LLMD that I have been working with for nearly 2 years now. She has done every kind of test you can think of. All of them. Not one has come back that said definately Lyme. The bands however show that I have been exposed to it and all of my other tests show it as well. My RMSF came back positive and is now good. The other things are still not right. This is her next step. I am just trying to find out, ummm not really sure. How it will go, how long it may last, and so on. I am not waiting for her office to call back because I spoke with Medicare and they will cover it as an outpatient. The only problem is, where it is located. If it is in Saginaw, we can not possibly drive there on a daily basis. It is just too much. If it can be done at a local hospital then we will do that. If it can not, then we will be paying out of pocket for everything and my fiance will be learning how to do everything. He is a retired Psychologist and currently gives my injections to me anyway. He does not have a problem wtih this.
Which bands and who did the test. I hesitate to say too much but generally the only way that IV antibiotics will be covered by medicare is under some very specific conditions and never more than 4 weeks. They will not cover for subjective symptoms beyond 6 mos. Make sure you are covered and pre-approved BEFORE you start the treatment or you will be on the hook for thousands if not having to pay in advance.
I know it should go without saying but we have heard of a number of IV treatments that are not FDA approved: http://www.accessdata.fda.gov/scripts/cder/drugsatfda/
You can read up here:
You will note that even the ILDAS guidlines aren't crazy about the IV antibiotics except with some very specific neurological symptoms
Hello tj1, To be honest, I do not know the bands at the moment. Each time they have been done my doctor points them out. I circle them when I get the results back and listen to what she says. Now, the doctor's office told me it was not covered yet when I called the Infusion therapy they said medicare would in fact cover 8 weeks if it was in an approved facility. I contacted my doctor's office and they have not yet replied. If the therapy was to be in Saginaw, which is nearly a 3 hour drive each way, then we can not do this. If we have to do it up front my fiance wants me to do this and will cover the cost. My neurolgical symptoms are many and getting worse. If you want to know the bands I will need to get out my records. I have a great deal of trouble going through things and putting them in order. I can't keep things straight in my head and am unable to follow simple directions most of the time. I had no idea it would be this difficult. I will attempt to get the files out then copy and upload them on here so you can see. I surely do not understand.
Thank you,
Moo
The reason why we are making inquiries, Moo, is that PICC line antibiotics are not risk free, and are sometimes prescribed inappropriately. I understand your fiance's desire to start you on a treatment in the hopes that it will make you well again, but this is not a case of "nothing to lose." Financial losses and health losses are possible.
Repeated blot tests are not usually done, as once your immune system produces antbodies they are there forever. Many LLDs use bands that are not specific enough and are on "developmental" tests. consequently they are very high false positiv. There are some very specific tests done to determine if the lyme has penetrated the brain/spine barrier. The procedure for these testx are well out of the skill level of most lld. Usually it will be a neurologist. IV antibiotics can increase neuro symptoms.
Hi dancermom, I do understand your concern, it just takes me a while to get all of the information you are asking about together. We both know there are many risks involved including my health. I can't even begin to tell you all of the tests, protocols, and so on I have followed the last 2 years but I do know, my doctor is very careful and up on all of the latest things. She does so much research herself and attends many Lyme related ummmm shoot, can't think maybe you knwo what i mean though. She is very involved and has me attempt to learn more about it as well. The problem is I rarely remember what all I do learn about. I will get back with you a bit later. I appreciate all the help and responses. I will do my best to get the info. up shortly.
tj1 said:
Repeated blot tests are not usually done, as once your immune system produces antbodies they are there forever. Many LLDs use bands that are not specific enough and are on "developmental" tests. consequently they are very high false positiv. There are some very specific tests done to determine if the lyme has penetrated the brain/spine barrier. The procedure for these testx are well out of the skill level of most lld. Usually it will be a neurologist. IV antibiotics can increase neuro symptoms.
tj1, The tests are not repeated blot tests. I have had done Igenex and at the moment I do not remember the others. Sorry, I have not yet got the other information together but am currently trying to figure out how to load them on here.
Okay I get the picture. I'l be blunt. You are about to embark on a very expensive course of action with very severe side effects many of which are caused by antibiotic exposure. Neurologic dysfunction, inflammation joint paint etc. The difference being when caused by antibiotics these effects can be permanent. There is no way in Gods green Earth I would do it based on anything from IgeneX. Very little chance on blood work alone. The only way to confirm if you neurolgical problems are caused by lyme is:
Chances that a an LLD has the capability to do any of this is slim and none,
tj1, Thank you soooooooooo much!!!!!!! She has done most of this but some of it was done by a couple of neurologists that I had before and they did not know what to do. She still wants me to get a SPECT Scan done but we are having difficulty finding a neurologist that will do it. My fiance is talking about paying for it out of pocket again but I wanted to do more research. My LLMD was at one time a neurologist who worked mainly with fibro patients and found throughout treating her patients that nearly 80% of them had Lyme. My while matter has grown more with each MRI I have had done. The neurologists can't come up with an explanation. Thank you agaihn so much for bringing this back to my memory..Also, there were many more than the Igenex test. She has always said that there is not one single test to be truely conclusive with most of this. I am still having difficulty loading the information. What I may do is copy it on my copy machine, save it, then try to upload it on here. You are certainly most helpful.
Moo I had a picc line and am probably going to have to have another put in because I pulled it out I have Lyme's in my brain positive MRI and western blot test been to a mental hospital once and will probably end up there again all you can do is live day to day good luck your not alone are you from Michigan? I saw you mention saginaw
Lyme is difficult to diagnose based solely on testing, your llmd should know that. It is a clinical diagnosis for most. Depending on what your symptoms are, a picc line is sometimes necessary, however, the duration is what is conflicted right now. My llmd has mine in for 4 weeks on iv meds, after that it is a course of orals that can continue to burst the cysts. Be careful of what you allow yourself to get drawn into especially if funds are an issue. Thankfully our insurance is paying the majority of mine, I have advanced late stage chronic nuero lyme. I did not give up until I did the research and found the dr that knew what he was doing. I don't personally believe in long term antibiotics, not agreeing with idsa at all, but I do feel that our bodies have their own way of continuing the battle. If you have Lyme, your always going to have Lyme, your not going to kill all the bacteria. If your still symptomatic, there is a possibility that the meds could be causing majority of that. Be careful, the line is nothing to shake a stick at. Neither is the Lyme disease, but this is a lifetime disease, we as patients need to be our own advocates and research other methods when some fail. What antibiotics are they planning to put you on? As the other moderator mentioned on here, some infusion therapies are not researched and could cause your symptoms to become worse.