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Posted 8/19/2011 2:40 PM (GMT 0)
Hi everyone, I'm new to this so here goes, I was diagnoised with Lyme 3 weeks ago had the sysmtoms for 5 months. It took the doctors what seemed like forever to figuire it out. I have now been on Doxy for 3 wks. and I don't feel much better.  My whole body aches and my headaches are getting worse. I feel like I would like to stay in bed all day and not deal with anything. Unfortuneatly, my family looks at me like I'm making things up and they dont seem to understand at all. Is there anything else that I should be doing or being tested for? I would appreciate any help. Thanks
Posted 8/19/2011 2:52 PM (GMT 0)
Hi lrich,

Welcome to the forum! So sorry that you have had such trouble getting a diagnosis and that treatment isn't giving you any relief yet.

For a five month infection, three weeks is not much in the way of treatment to see dramatic results. Also, you may be seeing results but don't recognize them as such. Because of something called the Herxheimer reaction, Lyme patients often end up feeling a lot worse before they feel better. The toxins released by the dying bacteria cause this. You might also be infected with a tick-borne co-infection such as Erlichia, Babesia, Bartonella or other.

Please take a look at our permanent thread entitled, "New to Lyme?" at the top of the forum. It explains this more fully and lists some very helpful resources.

I would suggest, also, that you locate a Lyme Literate Doctor. They will test you for co-infections and get you on an effective and thorough treatment.

For information on finding a Lyme Literate Medical Doctor(LLMD) in your area, please email our long time member, Dan's Mother at:
[email protected]
If you'd like more doctor suggestions, you can email stephanie at: [email protected] You can also go to: www.turnthecorner.org/bod.htm if you want to learn a little bit more about Lyme Disease.

You can also go to The Lyme Disease Association and search for LLMD's 3 times in a month. You have to register first. Here is the link: www.lymediseaseassociation.org/index.php?option=com_content&view=article&id=277&Itemid=74

You will want to find an ILADS(International Lyme And Associated Diseases Society) doctor. The ILADS site is a great place to read to get you started on your Lyme journey.
www.ilads.org/lyme_disease/treatment_guidelines_clearing_ilads.html

Also, start a new thread that says "Looking for an LLMD in (state your nearest big city). One of our members will have a suggestion, I'm sure.

To address your family's attitude, you might want to get hold of a documentary called "Under Our Skin". Netflix has it, I believe. It is an eye-opener and very informative and well-made.

Keep us posted!
Posted 8/19/2011 3:01 PM (GMT 0)
Thank you so much for your reply. I have been reading the "New to Lyme" after I posted and it was very helpful. I just made an appointment this morning with a doc who is suppose to be a LLMD, unfortuneatly in Florida which is where I live, not to many doctors are available to me. I am going to start some of the detoxing that is recommended on this website and she if that helps at least in mind set. Again thank you at least now I don't feel alone.
Posted 8/19/2011 3:55 PM (GMT 0)
No you are not alone! There are more people than you can even imagine fighting the battle with this disease!

Look forward to hearing about your progress.
Posted 8/19/2011 4:12 PM (GMT 0)
So I've been reading about lyme since diagnoised and today for hours on this website, to better understand and sum it up I will never be rid of this disease? I have no idea how long I have had lyme, symtoms started 5-6 months ago, now headaches and neck pain are getting worse and this is a bit normal- because I've just started Doxy? I'm I correct in that. I stopped taking my multi vitamins should I start again? So much to take in feel like sitting and crying. I started with dizziness, heart palpitations, I can't drive faster than 40mph or the road feels like its floating and con not drive for any length of time, knee aches, headaches, fingers, wrist, back, all ache, lost weight, don't sleep well at night, fatique, mood swings, ear ringing, light sensitive, wave vision, the list goes on. Will any of these go away or do we live like this forever? You know when you list them all it's pretty overwhelming.
Posted 8/19/2011 4:20 PM (GMT 0)
Also don't know if this is related but my breast get really swollen now and hurt terribly. Is that related to the lymph nodes swelling?
Posted 8/19/2011 5:31 PM (GMT 0)
With proper treatment you can get better... but it takes a looong time. It's not like getting over a cold. Lyme throws your whole body and brain out of whack and into a downward spiral.

Just focus on the basics... eat healthy, exercise, drink water, avoid stress, and rest. For me... I finished treatment over 1 year ago and feel alot better with the exception of some lingering brain fog. I had Lyme for 2 years... and there's people who've had it even longer. So yeah, you'll get better but it does take a long time so be patient. If you're ever feeling down just ask on here for success stories. They are always good to hear.
Posted 8/19/2011 5:55 PM (GMT 0)

MysteryLyme said...
Just focus on the basics... eat healthy, exercise, drink water, avoid stress, and rest.

This is very good advice! I'd add to it, "Stay calm and Carry On" in the British tradition!

It is important to not "look down" as you take on this tricky maneuver back to health. Everyone experiences Lyme disease in a different way: everyone's path back to health is different.

You will get well again.

And yes, you are feeling worse because the medication is working. My doctor always says, "The worse you feel now, the better you will feel later."

There is a lot to take in, both information-wise and emotionally. Keep talking to us here and don't get swallowed up in the enormity of it.

Take heart.
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