Learning about Lyme, this is consuming me...is this pretty normal in the beginning stage?

I can't stop googling!  And all of these new terms and tests, treatments.  All so overwhelming.  My doctor admits he doesn't know anything about Lyme, so I feel I have to educate myself.  How do I assure my family I am not overdoing it, they seem concerned, and I seem motivated to get to the bottom of this.  Agh!

It's really important to inform yourself. That's how you arm yourself for this big fight. Also, the more you know, the more you can explain to your family and friends so that they can understand. At some point you will want to give it a rest. Partly because you can get a little obsessive, and partly because it can get a little frightening.

I go through periods of research and then step away from it. There's so much information out there, and so many new ideas it is really worth keeping yourself up to date -- just don't panic!

kwicherbichen,

I can say when I got diagnosed for lyme, i did not even know what lyme stands for. But then I got obsessive with it, read a lot and realized it's scary. The disease is very scary. But don't let that bother you. Each of us are different and the disease will behave different for each of us. Among the overwhelming amount of information that is out there you need to know few basic things:

a) Do not panic - I know its much easier said that done, cuz I panicked like crazy, but really you are not helping your immune system or anything else by panicking. So stop panicking.
b) Find a good LLMD, until you do that, chances of getting proper treatment is going to be rare. This is the best piece of advice anyone can ever give you. If you do not have an LLMD helping you, chances of getting misdiagnosed and having the infection stay in you is probable. I've decided to borrow up to 100k to get the best LLMD to treat me. For instance, my rhuematologists, give me doxy and says its the right medicine, and say if this doesn't work there are things they can do like analyze using PCR tests etc. But they don't understand I have sleep disorder, getting too much or not getting any sleep. They dont get it when I say, I have itching, massive twiching (including eye) and neuro musculoskeletan problem. They don't understand the significance of eating probotics when on Antibiotics. All of this only a LLMD will help you with so do yourself a favor, and get one LLMD.
c) Have faith - while a lot of us continue to suffer from this disease, a lot of have got better as well.
d) Be preemptive. Certain things are bad for health, you know (alcohol, smoking etc) so stop immediately. And certain things are bad for health when you have lyme, such as sugar, etc. Certain things are further bad, when you are on antibiotics, such as yeast. So start taking care of yourself to the best of your knowledge, discuss it with your LLMD, and this is where you have to put your research in.
e) Lastly get some emotional support. I was miserable a couple of days back. But I realized in the worst case scenario there is always a plan, get working on it bit by bit. I went out today after locking myself in 2 days and I am feeling better. Put things in perspective. I'll tell you, and let others tell you the disease is scary, but be strong and fight it.

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First say to yourself what you would be; and then do what you have to do.
Epictetus

I live 500 miles from the nearest LLMD and my doctor knows much less about lyme disease than I do. If you are anywhere close to an LLMD I would encourage you to go to one because that is the fastest way to get well. I also HAD to research and prepare my treatment plan, then present it to the GP treating me. I did a pretty good job on my lyme treatment, thanks to Dr. Burrascano's treatment protocol provided by some really nice people online - but I missed the bartonella until a year later when I finally traveled that 1000 miles round trip to see the LLMD. I am back to treating myself as it is impossible to make such long trips. I consult with the GP but it is my research that is determining which drugs I will use. I plan to go to another LLMD if I cannot get this under control soon. I would encourage you to make a log of your symptoms and treatment so you know how it is working for you. Also keep notes of what you read that you do not want to forget, because with lyme you will forget darn near everything! There are some great books to read like Cure Unknown, my favorite, and The Lyme Disease Solution, which I just got.
But the best thing you can do for yourself is to put yourself in good hands so that you do not have to worry about your treatment plan. You know you have an expert taking care of you. Take your husband or a friend in for your office visit to help you remember what you were told. I would also advise you to chose an LLMD that makes the diagnosis on symptoms rather than tests. Tests can be very inaccurate.

kwicherbichen said...
I can't stop googling! And all of these new terms and tests, treatments. All so overwhelming. My doctor admits he doesn't know anything about Lyme, so I feel I have to educate myself. How do I assure my family I am not overdoing it, they seem concerned, and I seem motivated to get to the bottom of this. Agh!

kwich, I totally know what you mean.

I've been frantically googling so many different diseases and treatments for the past two years I'm really just sick of reading medical articles, watching videos, etc., etc. My head feels like it's going to explode from all the information!

But in the end, it seems to be worth it when (for example) I end up in the ER and can speak intelligently about my various conditions. I can even advocate for myself if I'm admitted to the hospital (as happened last week) and have to be examined by all these doctors that know absolutely nothing about me.

In the case of Lyme disease, because it is so incredibly controversial, and it's such a nasty, complex disease with all of the associated co-infections and everything, you absolutely HAVE to do a lot of reading on the Internet!!

You have to be able to choose between the various treatment protocols, and to be able to follow your chosen protocol correctly with the best chance of success. For example I'm on doxy right now, but I want to take colloidal silver too. I had to google to find out if I CAN take colloidal silver with doxy (I can, but apparently must separate the doses by sufficient time interval so they don't interact).

There are just so many questions at first....please reassure your family that this is normal, and after a while you won't need to be doing so much research on the Internet.

Best wishes,
JoAnn