I'm a newbie

I am so glad I found this group I have the burning pain in my arms like Julie.I'm looking forward

to share and get to know everyone! I live on Cape Cod.

Tick Hollywood.I'm 48 and just currently found out I have Lyme. Jean

Welcome aboard! Sorry you have to be here, but you found a great support group here. Not as much drama as some of the other sites, we're very proud of that.

Please give us more information. Have you been sick a long time? Do you know when you were bit? Do you have a LLMD (lyme literate doctor)? Do you need a LLMD? If so, we can help find you one in your area. Basically tell us your story. You can read mine under "group leaders" and I have much more of it in my profile. In short, I've been infected for 20 years, been very sick for the past 10, and have been from doc to doc, diagnosed with fibro (like many of us have, and in reality it's a symptom of lyme, not a syndrome), lupus, RA, scleroderma, etc. Just found out it's actually lyme that's been causing all my problems this year. I've been in treatment for about 7 months, been on many drugs. Currently on doxy/Biaxin combo ....

again, welcome.

Jaime

Welcome...

I'm also 48 and found out this year I have lyme. Got it in my own back yard....

How long have you had lyme and what are they doing for it?

I'm been off and on abx since August, however I'm allergic to 99.9% of abx out there, been like that all my life, so for me its very hard to treat lyme.

Please tell us your story. And if I find out something for the burning I will post it, so far I've come up with nothing excpet putting COLD packs on it to stop it which Jamie said don't do as lyme like the COLD, but the heating pad makes it a million times worse.

Julie

My Dad was very ill over the summer and I was very busy with him going in and out of the hospital and a reabilitation complex. I don't remember getting the actual tick bite or were i got bit,but in August I broke out with a rash and the hives and ended up in the emergency room.They gave me predisone(wich now I know is a no-no)and benadryl.I was a mess I had them everywere. I was on Biaxin for a sinus infection,but had been off of it for 2 weeks.The Drs at the ER chalked

it up to a alergic reaction to that.It took a while but the hives and rash went away.My Dad passed away September 2 2007.Around September 12th it hit me like a brick. I felt like I had the flu,extreme fatique,Burning pain in my arms.Went to my primary Dr and he thought it was fibro,but did test for lyme.I was told the test came back positive and was put on 22 days of doxycycline.Which helped for a short while.At the same time i had a mercer staff infection of the bladder(have no idea how i got that) Had a cat scan for that and found out my spleen was really enlarged. Then my lymphnodes got really swollen.While all this was going I still had the exhaustion and pain. I had a pet can which came back neg Thank God.I do need to mention In October I got out of the shower one day and there it was I dead tick that WASNOT there when I got in.I shower everyday but i do have really long hair.I was totally freaked.How Long had this thing been on me,Or was I bitten twice.You could say me and my primary are not best pals.I really do not thnk he takes me serously.

but him and my husband are friends.Long story short went back to my primary end of November saw a new assistant who I like I had another lyme test taken in

the first of November and was told it was negative. I was told wrong it was positive. I have been on clyndamycin since then.Sorry this is so long.I do have a hematolagist Doctor who i am going to call to see if he also deals with lyme.Thank you for the welcome

Sorry for any spelling errors !

Don't be sorry for the spelling, I'm the worse speller in the world.

First, I'm very sorry to hear about your dad. My prayers are with you.

Second, You sound a like like me, go to my profile and you will see I had the same thing you did. Removed the tick got sick 8 days later with the flu, fever, chills, numbness, and that GOD AWFUL BURNING on my face and chest that was July 22, 2007. I also have knee pain and very bad neck pain.

I do think it was an allergic rection to the Biaxin, my allergist told me that you can react to a drug from day one to twenty days later. Believe me when I tell you this. I'm allergic to 99.9% of abxs out there that is why I'm having a very hard time treating lyme.

Were you tested for co-infections? I'm not sure if I have Bart or not, but I tested negative for the rest. Like Jamie will tell you, your body can fight a lot.

Please let me know if your hematolagist can help you. I'm seeing a Ciro. doctor that does all natural.

I wish I could help your more, but I'm also new at this whole mess. Jamie and others will come on with great ideas.

I know the cold paks are bad for us (I use rice in a sock and put it into the freezer) but heat just makes the burning bad.

I hope you start to feel better.

Julie

I am also new to this site and so thankful I found others who understand our plight.

I have been very symptomatic for 4 years and just got diagnosed. Also, with enlarged spleen,swollen lymph nodes, sinus inflammation etc, etc, etc....

I wanted to tell you that I live in ma and visit the Cape often because my sister lives there. I also used to live near the Cape and wasn't getting answers so I started to see my sisters dr. on the Cape She sent me all over the island to specialists, all kinds, and always walked away without answers or worse, "you seem fine." No one ever looked into lyme disease!!

I now live in western ma and found a wonderful infectious disease dr who specializes in lyme in Longmeadow, ma. It is a drive for you,but worth it if you aren't feeling good about your drs.

Her name is Deborah Hoadley.I don't have her # in front of me,but if you are interested let me know.

Take Care!

AMY

I'm very sorry to hear about your dad. It's hard enough dealing with all of this, and to add that on top, it probably would have sent me over the edge.

I would suggest going back on doxy. The more I research it, the better I think it is. It's also good for staph infections. You need to pair it with another drug, Biaxin is a good choice.

Do you know about herx reactions? Usually on treatment, most of us have periods of feeling worse. A herx is when the spirocetes die off and let off toxins. They have cycles , although I have yet to figure mine out. Some people know exactly when they will herx, for others, like me, it seems like I herx more than not. A mild detox is good for this, like epsom salt and peroxide baths. Or dry body brushing. You can get much more into detoxing, I have to research it more myself.

read Bruscano's treatment guidlines. It's in some posts here, or you can google it. He says for people who can't take abx, like Julie, that building up the immune system is the thing to do. We all should be doing it. I still need to do some research on that, as to what to take and all. And he says exercise is key. You can take all the drugs you want, but if you don't do exercise, you will never get well. Even the smallest amount of exercise. I know it sounds like the last thing many of us want to do. Lyme HATES oxygen, and heat. two things you get with exercise. Sauna's are a good thing, but only in small amounts, 10-15 mins, and some people do hyperbaric O2 chambers. But any O2 is good, if you can get O2 prescribed to you is good.

If you have any questions, please feel free to ask away!

jaime