WHY???!!!

Dear people with Lyme, my deep sympathies go out to you.  I recently watched "Under Our Skin" I'm sure some of you have seen it too. I needs some answers about what I saw on that movie!  A few years ago my husband came down with a severe case of Lyme (I think) he was given two week antibiotics, and was also being treated for Fibro. He seemed to slowly get well again and has not had any severe symptoms since. I have two questions here: Can my husband get it back again, or did the antibiotics cure him since he has had no symptoms for... about 4 yrs? And, I for the life of me, cannot understand why Lyme is such a controversy? These people are obviously sick, and even dying, why will the Dr's not treat them, why do they say it is in your head? Did Lyme really originate from Plum Island NY?  I hope someone can help me understand some of these things, thank you

Here's my opinion. I think it may be very simple: Doctors do what they are trained to do. And in school, they are told that lyme is rare, and that it is cured by 14 days of antibiotics, and so on. Then, when a patient tells them they aren't well when the doctor's training says they "should" technically feel well... they just look down on the patient because, of course, that patient hadnt been thru all their education. The doctor's area is medicine right? Why would a patient know more than them about disease? Right?

Very few doctors (or people in general, honestly) are good at breaking outside their training and looking for new answers, especially when it would prove to be a very tough challenge. Us lyme patients are forced to go outside of the box because it is our lives that are being affected, and if we feel horrible, we know it's there. The "all in your head" thing is just a doctor's excuse for not understanding or being able to explain the issue, or not having the time and energy or open mind to look further into the issue.

There may be more to it but I think that's the main problem.

Hi Why??,
First of all, thank you from all of us here for your sympathies! We don't often even get recognition, so we rarely get sympathies!

I'm so sorry to hear that your husband has/had Lyme. Do you know if he was ever tested for co-infections like Bartonella or Babesia? I was very happy to read that he seems to be symptoms free, although -I'm sorry to say - doesn't mean that he will stay that way. As Springsjean said, it's a little like Chicken pox or Herpes, it stays with you for the rest of your life, as the bacteria can hide from the immune system.

Unfortunately two weeks of antibiotics just isn't usually enough to push these infections into full remission. These are incredibly complex infections that can evade the immune system for decades and are quite difficult to treat. The type of things that will precede a relapse is anything that can cause stress. If his immune system is working hard and then something happens that creates a lot of stress - either emotional or physical - he could relapse. So if you ever suspect that he has relapsed, please locate a Lyme Literate Medical Doctor (LLMD) right away and get treatment started. It's still just as debilitating a disease the second or third time around!

You are a wonderful wife for looking into this further for your husband!! Please do stick around and learn all you can from those of us still going through our treatments! You can fee free to ask any questions, read the posts and I would highly recommend that you read through our "New to Lyme?...Start Here!" thread that stays at the top of the forum. It's packed with all kinds of great information and links!! We also have a great search function that will allow you to search out specific things relating to your husbands case.

Thank you again from all of us for the kind words! I'm also very sorry to hear that your Mom suffers with Lyme as well. I do hope that she is doing well with her treatments. Maybe you should suggest that she become a member here as well? It's a great place for support and even a giggle or two!

There are actually 4 moderators on this forum! We are/have been in treatment ourselves for these infections and have been on this forum for a minimum of a year before becoming a moderator so that we have some experience under our belts before trying to help others.

I am so sorry for all that you and your hubby have been through! Especially when it wasn't necessary. It sounds like your hubby has an active infection. Two weeks of abx just isn't enough to rid the bacteria from the body. There are a ton of reports online about persistence of Lyme after abx treatment, or you could tell him that you've spoken with people that know more about this set of infections than most doctors - that's almost all of us here!

By getting the treatment he needs, he won't be 'stirring it up' but putting it into full remission. The reason for doing so even though he isn't experiencing serious symptoms? If he waits, it'll come back like a lion. The infection may still be spreading throughout his body, hiding in nerves, joints, eyes and other spots, so when under just the right amount of stress, his body will no longer be able to hold back the bacteria from replicating at an amazing rate.

It's like leaving a splinter that's deep in your finger alone. It rarely goes away on it's own. Some intervention is needed or it can get life-threatening if left long enough. That's what he is facing with Lyme as well - and since he was never evaluated properly, it's very likely that he has other tick-borne infections as well since Lyme doesn't usually travel alone.

There is no 'one size fits most' treatment for Lyme, so there are many different protocols that one can choose from. Rifing is one of many methods your hubby could use to heal from these infections, but he does need to get into treatment. The best thing to do is to get him in to see a Lyme Specialist. Some use antibiotics alone, some use antibiotics and herbs, some will use only herbs and some Naturopthic practitioners treat Lyme as well as some Chinese Medicine practitioners. I'm not aware of any LLMD's that support the use of rifing, but you can find some others who are using rife to heal by using the search function here and type in "Rife, rifing" as search terms. I'm sure it'll be helpful to read others experiences.

Have you had a chance to read through our thread at the top of the forum titled "New to Lyme?...Start here!"? If not I would highly encourage you to read through it. It's packed full of great info and helpful links.

If you need some more help in being the spouse of a person infected with Lyme, I would suggest that you visit www.lymespouse.org/. It's a site dedicated to the spouses.I've read through it and it has some very good info there.

If there's anything more that we can help with, please do ask!! There is soooo much info about these infections that we can't just put them into a short organized post! LOL!

Thank you, thank you again, for your responses, wow, this website and you Moderators are about the best thing I have ever found on the internet! I am so thankful to be able to ask questions and get these great answers! Ok , I did read all of the " New to Lyme" stuff, very informative, thank you. I have been looking around a lot and trying to figure just what in the world I should do? My husband is a real hard working blue collar guy who generally won't take care of himself (eating candy bars, and drinking pop) unless I am there telling him to. He will however eat whatever I make for him, so I have really been making much healthier meals, and telling him to drink lots of water, I understand a healthy diet is very important with Lyme. I really don't know anything about Rifing except that my Mon does it, I am open to ANYTHING, I just want to make sure he either gets better, or maybe he already is, I don't know? I am actually leaning toward that he may not be because he has had mild symptoms of the same things that happened when we first found out. When he was sick for about 3 weeks this fall I took him to the ER one night because he was dizzy all day, felt like he had periods of blacking out, was seeing things, and seeing blotches of lights. They gave him an MRI and said he has Sinusitis, I know these are some of the symptoms of Lyme, but he got over it and has been fine. What should I start doing to treat him? I know there is a Dr. in my town that is not an LLMD, but "acknowledges" Lyme, and has patients that have it, and says he believes in Chronic Lyme. Should I go see him and have him do a blot test, and abx, and co-infection tests? If so what ones? Or should I maybe see a naturopath? Should I do stuff on my own or wait to talk to a professional? I am just so unsure of where to start?? Wow, I feel like this is way too many questions to ask you, you already have been so kind as to respond to my previous questions. Thank you so much for the time you are taking to do this! P.S. As soon as I saw this site I called my Mom and told her to make SURE she gets on here too, thank you!

Thanks again for taking the time to respond = )