Your best advice to someone who just finds HW

What would you want a "newby" to know who has just showed up on HW? Anything...

The "newby" can be either newly infected, just diagnosed
OR
The "newby" can be someone who has suffered for a while and just found HW.

OK, I'll go first.

TIME IS OF THE ESSENCE!

There is a narrow window of time––I've read from various sources it's 3 weeks––to begin treatment of Lyme Disease with antibiotics (continuing for 3 months). This provides the optimum chance for cure in the beginning.

If this window of time is missed, there is a high probability it will turn into Second Stage Lyme Disease.

Go to a Lyme Literate Doctor asap, who is not just familiar with Lyme Disease, but treats it day in and day out.

Time IS of the essence. It will cost money to do what needs to do now...but...it will cost a lot more later...money just being one of the costs.

Post Edited (daisyrlb) : 6/14/2011 10:23:54 PM (GMT-6)

To the Newbie,

BE YOUR OWN ADVOCATE........I can not stress this enough. Your body is telling you something is wrong, it's not all in your mind!! You MUST search, and find the answers you NEED.

BELIEVE IN YOURSELF.......If you believe you have a Vector borne illness, do not let anyone tell you otherwise unless your confident YOU have done everything to rule it out.

KEEP AN open MIND.......When you start learning about Lyme disease, and other co-infections, the amount of information you will learn is nothing less than staggering. It will take you a very long time to understand all the information you will need to learn. This disease is controversial, some of the treatments are controversial. It is up to you to decide what is best for you.

BE PREPARED FOR A LONG BATTLE......Unless you are fortunate enough to be diagnosed early, chances of a quick recovery are limited. In order to beat this illness you must first kill all pathogens, detox your body, and rebuild your immune system. Unfortunately this is a time consuming process.

NEVER EVER GIVE UP.......This disease will KILL you if you let it. Unfortunately I have known fellow Lymies who have lost their battle to this illness, some from this very site. It is not my intent to scare anyone, but rather to stress the importance of being vigilant in fighting this illness. You can, and will beat this illness but it will be the fight of your life with many ups and downs.

BE AN ADVOCATE FOR OTHERS.......Once you have the knowledge, please try to do all you can to advocate, and educate others. Without our collective voices we will ALL lose this war.

Best wishes

Post Edited (Cheezhead) : 6/15/2011 4:51:47 PM (GMT-6)

Great posts everyone !

My 2 cents in addition:

Don't let yourself get depressed.   Believe in recovery.

Know that Lyme can be frightening in its attack on the body and mind. Don't let fear get the best of you-- RELAX.  Go with the flow as calmly as you can.   

Seek to understand your symptoms by talking with others who have Lyme and similar symptoms as your own.   Symptoms can be very individual--shared by a minority, and they can be common as well-- shared by many. 

Seek to understand the herx reaction.  It goes hand in hand with Lyme. It can be your friend but often seems like your enemy. 

Listen to your body.  When you need to rest, REST!  Rest is not 'giving up' or a succumbing to Lyme.  It is healing instead.  I believe a good 8 hours of  SLEEP-- or more-- at night-- can do wonders.  Plan on getting a good nights sleep!   This can be difficult for some.  Do the best you can.  

Know that two steps forward (to feeling better) is ususally followed by three steps back and feeling worse.  Be confident that this will reverse.

If you are on antibiotics,  immedialtey begin taking a high quality refridgerated probiotic that has at least 10 strains and 30 billion cultures.  Four capsules a day (IMO) between meals and lots of fiber.  Drink Kefir and eat yogurt as well. 

In my experience, I found no over the counter meds that relieve Lyme symptoms or pain.   I didn't try any prescription meds so I can't speak for those.  Relief IME only came through the good work of antibiotics. I did not go the natural route, so I cannot speak for that protocol either.   But with antibiotics: symptoms WILL lessen. Some will disappear quite quickly never to return.  Others can develop-- new ones you never had before.  Some symptoms will come and go--- move from place to place.  Know that this is a normal process-- not treatment failure. That is unless you are not being treated properly by a good LLMD. 

That last part being said:  Get thee to an LLMD right off the bat.  Do not waste time with doctors who do not FULLY understand Lyme, co-infections, proper treatment......and/or will only treat on a positve blood tests rather than symptoms.  

Keep a detailed calendar where you write down your symptoms (old and new) and your herx's--- their severity or lessening on a scale of 1-10.   Day by day.   Tracking your progress and your regressions will show your individual pattern of success, symptom remission, etc. .....

...... As an example, I had 18 symptoms before and during treatment.   They ranged in severity from 1-10......for 8 months.   Now I am down to zero symptoms (at this very moment) and holding there.    It feels GREAT to be able to look back at all my calendars and see how far I've come!   Calendars will also aid your LLMD in treating you.  

 

Every day is a step forward. Every day that has passed is another one behind you on the journey to getting well.