hello I am a 26yr old female. And over the past 6months to 1 yr I have been experiencing:
severe musle pain migraines/neck stiffness inability to concentrate frequent mood swings/depression jaw pain and cracking diarrhea/constipation on and off weekly numbness in fingers light sensitivity palpitations anxiety etc.....
I recently saw a neurologist who ordered a lyme test on me, yesterday the result came back positive. I have been online all day researching reading forums and testimonials. Needless to say I am overwhelmed, terrified and sad. Can anyone offer advice?? such as where I should begin? what to expect? is this a lifelong illness? HELP???????
Posted by dmc (Member # 5102) on :
Great info on the Tick Diseases is the green lyme booklet from http://lymepa.org
Suggest you print it out. It's an easy read with all the tick borne diseases & pages of symptoms.
Or post here in "seeking a Doctor" page.
Posted by bcb1200 (Member # 25745) on :
Welcome!
I am also a newbie..just diagnosed on 5/3. I, too, was very overwhelmed and scared. HEre are my comments:
1) Congrats on testing positive. Many do not. I didn't on the first ELISA test my ENT gave me. I had to go to an LLMD (Lyme Literate MD) and get a better test, a western blot through IGenex before I turned positive. Some never do. So RUN with that positive result.
2) Find yourself an LLMD IMMEDIATELY! It make take a few weeks, so I recommend starting something with the neuro today..like 400mg of Doxy / day for 30 days. The neuro will probably only want to give you 200mg for 2-3 weeks. FIght for more. TO get an LLMD, use this site on the "find the doctor" thread, contact www.ilads.org and they can recommend one, or http://www.lymediseaseassociation.org/ Only an LLMD can give you the proper treatment.
3) Download Dr. Burrascano's treatment guildeline at http://ilads.org/lyme_disease/B_guidelines_12_17_08.pdf Read this and study it. It isn't a bible, but gives you very good tips and will help you get educated. Dr. B has cured many people worse off than you over the years.
4)No one can say whether this will be a life long illness or not. I worry about that too..I'm only on day 24 of treatment..although do feel better. All I can say is there are people on this board who were in TERRIBLE shape for YEARS who are now off all meds and living normal lives as normal people (not as sick people.) Sixgoofykids, TF, and many others are examples. Keep in mind that many times people who do get well often leave LYmenet and go on with their lives. So this site is really a collection of sick people. Do not despair. If you go back several years you can see there us an entirely different cast of characters. MOST improve or get better...but not all.
5)Purchase and read "Cure Unknown" by Pamela Weintraub at Amazon. Watch "Under our Skin" (www.underourskin.com). Many times your local library may have a copy.
6) What to expect? I have no idea. EVeryone is different. I haven't "Herxed" yet,but do feel better. SOme people have a hard time with certain meds. So far, so good for me. (knock on wood.) Watch for YEAST! You need to change your diet when you start antibiotics to cut all sugar, flour, starches, etc, as you can grow system yeast which is as bad or worse than Lyme. A bummer, I know, as carbs / sugar are my favorite. Dr. B's guidelines has some good info here. ALso take lots of GOOD probiotics (Theralac (on Amazon), Florastore, Kefir (no sugar)).
7) This will be expensive. I have no idea what your resources are..but LYme is an expensive disease to treat. Most LLMD's don't take insurance. Some drugs are cheap...some are not. MOst supplements are expensive. I figure I'm spendnig at least $500-$800/month to treat.
8)DOn't stop treatment until you are well.
9)Get tested by your LLMD for Co-infections. Suspect both Babesia and Bartonella. Both are common with Lyme. I syspect I have both. Your symptoms are similar to mine.
Best of luck and try not to panic! You know the beast you have to fight. Get educated and FIGHT!!! It is much better than not knowing and continuing to decline. MOST do get better, although it can take time.
Cheers!
Posted by lymeconfusion (Member # 26258) on :
thank you so much for all the precise advice. It's almost as if a sense of calm came over me as I was reading.
As for you, you will be in my prayers as every lyme fighter. I never knew how prevelent and devastating this was until I had to look for it because it happned to me.
Most people worry about cancer, car accidents, and airplanes. Not our own God give nature sometimes its not our friend.
Please keep in touch if you find out anything new of that can help, as will I.
Bless you.
Posted by Haley (Member # 22008) on :
Hi Lymeconfusion,
There are many different emotions when one is first diagnosed. One is relief - thank God, I finally found out what is wrong with me. As we begin to research we do find that there are some people that must treat for several years but that is not everyone.
I recently asked my LLMD what she felt was the percentage of people that get back to living a normal life. She said 80%. The most difficult cases are patients with ALS type symptoms or people in wheel chairs.
So, know that you definitley can get well but be prepared for a long road.
If you have not been infected too long it may be a shorter recovery time.
As posted above, the most important step for you now is to find an LLMD as soon as possible.
I would also suggest - each morning when you wake up, think of 10 things that you are grateful for, no matter how lousy you feel.
Keep us posted
Posted by bcb1200 (Member # 25745) on :
The 80% is also a statistic I have heard. Dr. B referenced it.
Not bad, really. Your chances are good with proper treatment.
Posted by LymeMom Kellye (Member # 24807) on :
My dauthter who is 16 was just diagnosed in February. Relief, fear, anger and sometimes hope that she will recover.
I hear over and over that it's a marathon, not a sprint....
The advice you have been given is great. I would like to add the following 3 books:
1) The Lyme Diesease Solution by Kenneth Singleton
2) Insights into Lyme Disease Treatments by Connie Strasheim
3) The Lyme Disease Diet by Nicola McFadzean
The first 2 can be purchased through Amazon. However the last book I had to purchase on the author's website.
I would like to reiterate that probiotic support is a must! My daughter takes 3 kinds and so far she has been fortunate that her yeast has not got out of control!
Good luck in your journey and welcoome to our Lyme family!
Posted by lymeconfusion (Member # 26258) on :
Thank you all so much. It's hard because other people do not understand or simply don't think its a big deal. I feel like crap. just started doxy yesterday and let me tell you I have been disoriented all day the worst part is im at work so they think I'm strange.
I'm having trouble focusing and reading its frustrating. I my stomach is a wreck and I have no desire to eat i really just want to curl up in a ball and sleep for the rest of the day.
Also I am in pain my back, face, jaw, and neck are killing me. The only thing that has kept me going today was having this site minimized on my computer all day. It's like when I feel like this and I have no one to turn to I pull this site up and its almost as if I'm turning to a friend who completely understands.
Thank you Haley for the positive reinforcement. Thank you Lymemom I could use all the moms and famil I can get.
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