"Help Wanted" - Must be lyme literate, have doctor GPS, be good at navigating mazes.

I am looking for a lyme doctor in Northern New Jersey.  I am Male.  Age 47.  My story, I was diagnosed with Lyme Disease on December 23, 2009.  I had negative blood test results, but fluid drained from my swollen knee tested positive on every marker.  In December of 2008 I was found to have had a torn coratid artery and I also had begun to notice wierd rashes on my skin which they told me was psoriasis, me who never even had a pimple, because of the complications from that I mistakenly thought the rash, the terribly burning rash I had on both legs right above the ankle and on the back of both forearms, was a part of it.  I should have seen a doctor about the rash but I was so worn out from doctors by then I just brushed it off.  What a mistake that was.  That was in late July or early August.  Feeling better from the torn artery I began exercising and thought I did too much, bringing on the swollen knee, but suprise it was lyme disease.  I work out inside, I have no pets, I am inside practically all the time so who knows where I got the tick bite from.  The doctor I go to is at a family practice and he specializes in sports medicine.  He actually said it might be lyme disease so I felt comfortable with him at first since I had both of my knees operated on for torn meniscus in 2007 and I thought I had more tears.  I do have tears now but they are wet and salty.  I try to keep a since of humor about this and I have stopped saying what else is going to happen to me or my use to be favorite,  it can't get worse than this.  My disappointment in my doctor comes from his seemingly inablility to understand the pain I am in or why different parts of my body are hurting.  When I had headaches from the torn artery they were so painful and they gave my oxy but when I tell them I feel more pain than that now and it is all over sometimes they told me to take tylenol.  I almost had to beg since I can not sleep for the pain sometimes.  He finally gave me vicodin.  I couldn't understand it.  When I took the oxy it was for almost three months.  There was no abuse.  When the pain stopped I threw the rest down the toilet.  No withdrawals no bad reactions.  I need someone who can understand and most of all believe my pain.  I have been taking Amoxicillin since December 23, 2009.  I am reading about this disease and the controversy.  It is all very sad.  Please help.  Thank you.

Hi gmm!
I'm so sorry for your need for this site, but it is a good site!! I'm sure you will be able to get a lot of advice & guidance from the good people here!!!

I'm sorry I don't have the name a a LLMD in your area, but wanted to say hi & welcome anyway.

Your story is similar to a lot of people here. It was a good thing you were seeing a doc that had a clue about LD & other tick-borne illnesses (TBI's), many of us have spent years trying to find a doc that would even admit that we need to be tested!

There are very few docs in this country that have any idea the amount of pain a 'Lymie' can be in! I can't remember which site I read this on, but it is said that Lyme Disease patients can be in as much pain as a post-op patient & be as ill as someone with congestive heart failure.

It's a real crime when a doc won't recognize the amount of pain their patient is in. I went into my gp about 4 months ago with severe, generalized pain & when he pulled out that little 'hammer' & tapped me on the knee, it hurt so bad that I literally lifted up off of the exam table - he was the one half yelling "Whoa"!!

Having a tick-borne illness (TBI) does mean that you definitely had a tick attach itself - you could have gotten your TBI by way of a flea, or a mosquito, or any other thing that can bite an infected animal (deer, dog, cat, etc.), and then bite a person.

In the 'sticky' at the top of the forum there is a thread titled 'new to lyme? start here' & there you will find a whole wheelbarrow full of info - including pics of different rashes that can occur from TBI's.

IT's also a really great place to get a 'big picture' of what may be going on with your body, as well as detoxing & a few different treatment options. I'm one who believes that detoxing is essential, but it is up to each individual to decide.

I also believe (after much, much reading over the years) that each persons' "cure" (for lack of a better term) is as individual as the person is, since TBI's just love to use our bodily weaknesses to get a foothold.

IMHO - I believe you need to have a good sense of humor in order to survive a tick-borne infection!! I'm pretty much a nut & the "class clown" here I think - but I'd rather laugh than cry!!

Before we can offer very much advice, there are a few questions that it would be very helpful for you to answer - first, what dosage are you taking of Amox? & how many time per day? Where you tested (either clinically or otherwise) for any other TBI's? They usually don't travel around by themselves (Giggle) & there are many different strains of most of the TBI's.

Well, that's as far as my brain will let me go for now, but I'm sure you will be getting many more posts to read from the other members here.

I hope this is of some help to you!
~trav

From your description, you are having sx(symptoms) of TBI's - at least it sounds that way to me.

Good description of the look you get when experiencing your "Lyme song" -which is tinnitis, btw. I deal with quite a bit of that (the look & the tinnitis) & other sx as well, of course!.

And, IMHO, I would really doubt that your doc went & read (or spoke to someone on the phone or in office). At least he is willing to admit (in a way) that he doesn't have all the answers. That's how my doc was - until he really felt like he was in over his head - now I have to find another doc myself!

Also, IMHO - I believe that it is just short of impossible for someone who has not had the same sx or severity to be able to understand not only what we live with, but how hard life can really get sometimes for those of us who are infected.

I have to admit, I know very little about abx tx for Lyme, as I have only been on Minocycline & Doxycycline & have only been able to see 1 LLMD for about 1 yr. I believe what you are experiencing though is a Herx - an increase in symptoms &/or severity because of die-off.

I would heartily suggest detox baths or foot soaks to help that. One detox is to use what we often already have in our homes - epsom salts & peroxide (i'm doing a foot bath with this right now) to help ease your sx. All it takes is 30 minutes!

AND, sometimes ranting can be a really good thing!!!! No apologies necessary as far as I'm concerned!! =)

It seems to me that when looking for a doc to treat Lyme & co's a person should check many different sites (even Canlyme) as it seems that each site has a different list. - Happy hunting!!

Be careful of the stress of all of this - stress is something TBI's welcome with open arms!! They just love it when we allow stress into our lives, as this allows them to cause even more havoc.

Hope this helps at least some... =)
Trav

Hi gmm,

Here is some great information to get you started on your Lyme Journey:

Welcome to the forum! We're so glad that you found us:)

For information on finding a Lyme Literate Medical Doctor(LLMD) in your area, please email our long time member, Ticker 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 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/

For great info and links, please read the topic at the top of the first page of this forum titled, "New To Lyme?......Start Here!" It will help you get started learning about lyme.

I have the same rash, exact same spots. Weird that its only forearm and not the whole arm and only above ankles huh? No one has been able to tell me what it is. They also guess psoriasis. Mine doesn't itch, but it sure makes shaving my legs a bloody mess!

Hey Jmm  I am new here too today - I have been crying all night - I feel so sad and alone with the realisation of lyme. I really wanna believe the doctor and his negative lyme blood result - but we had the rash and we have the symptoms - I feel so sad -

Tis my husbnad the poor victim - no anti B's given at time of infection - 6 years ago.

x

Hello All, I am new to the forum. I was just diagnosed several days ago. It has been an interesting year. I started feeling sick about a year ago. After several mis-diagnosis from my long time family doctor, we found that I had a lard multi-nodular goiter on my thyroid and had to have the entire thyroid removed in October 09. Then after 2 1/2 months I was still feeling crappy, exhausted, numbness you all know the symptoms my surgeon sent me for some blood work and lo and behold on top of everything else I have Lyme Disease. So I am new to this journey. I have been through the anger and am not on the hunt for some combination of conventional treatment as well as homeopathic remedies. The doctor started me on doxy will do that for the next 3 weeks. I live in Myrtle Beach, SC. Does anyone know a doctor in this area that treats Lyme. I am fully confident that I will recover in time. I refuse to buy into the thinking that this has to be the rest of my life, chronic. I know that I am strong and can heal. So thanks to everyone here I have learned lots reading through everything. I am on my way to the store to get the items to start detox baths tonight. I will be checking in often.

Hi lifisgr8,

Welcome to the forum!! That's a great attitude to have. A postitive attitude goes a long way.

What area are you looking for a doctor in?