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

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gmm5of6
New Member


Date Joined Jan 2010
Total Posts : 7
   Posted 1/21/2010 9:32 AM (GMT -6)   
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.

Cheezhead
Veteran Member


Date Joined May 2007
Total Posts : 517
   Posted 1/21/2010 11:00 AM (GMT -6)   
gmm5of6,
welcome to Healingwell. Sorry you are dealing with the affects of Lyme disease. It is good to see you are already learning about this disease and the controvercy that surround it. There are many places on the net to research this disease. A couple of good places to find doctor referals are ilads.org or lymediseaseassociation.org

best wishes

Traveler
Forum Moderator


Date Joined May 2007
Total Posts : 35706
   Posted 1/21/2010 11:02 AM (GMT -6)   
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! rolleyes

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 smilewinkgrin
It's been said:LD patients can be as ill as people w/ congest. heart failure & in as much pain as post-op patients.


gmm5of6
New Member


Date Joined Jan 2010
Total Posts : 7
   Posted 1/21/2010 11:42 AM (GMT -6)   
Thank you Cheezhead.  Thanks also to you Traveler.  To answer your questions, I don't think I was tested for any other TBI's.  The doctor just told me that on the test he did of the fluid in my knee that there were four indicators that tell if you had lyme disease and I had a positive response to all four which meant I definitly had it.  It seems to irritate the doctor that I ask questions, hence the need to find another doctor.  He responded like,  no big deal, just take the amox for six weeks and if that doesn't do it we will do another six weeks and maybe another, but the amox will do the trick and no big deal.  When I am explaining my pain and the way it has traveled and the levels of pain, I get , uh huh, that sound like he is saying, oh sure, ok, right.  I wanted to scream.  I am taking Amoxicillin 500MG two capusles every eight hours.  When I told him about the pain in my hands ,the bottom of my feet, the top of my back, the burning in all of my tendens, the mood swings (I have been very irritable lately, I think it's the pain), he said he would be back, when he came back he said the symtoms I was showing usually came right after starting meds.  It was as if he was going and reading a book and then coming back and telling me what he read.  It seemed that since my condition didn't match up to his information there was a problem.  I never experienced this with a doctor.  It is very disheartening.  P.S.  I forgot to mention that sometimes the world goes mute and my ears start the very high pitch what I have come to call the "Lyme song", which leaves who ever I'm talking to at the moment looking at me like a third eye just opened up on my forehead.  The doctor had no response for that one.  He just looked in my ears and said they look okay.  I feel like I'm ranting.  Sorry.

Post Edited (gmm5of6) : 1/21/2010 10:51:30 AM (GMT-7)


Traveler
Forum Moderator


Date Joined May 2007
Total Posts : 35706
   Posted 1/21/2010 12:41 PM (GMT -6)   
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
It's been said:LD patients can be as ill as people w/ congest. heart failure & in as much pain as post-op patients.


gmm5of6
New Member


Date Joined Jan 2010
Total Posts : 7
   Posted 1/21/2010 2:21 PM (GMT -6)   
Thank you Traveler. I think I will work on the detox bath since I have epson salts & peroxide. I have to look into diet and nutrition info since I read this has a lot to do with helping this "thing of ours". I think I have finally found a group that cares for me unconditionally. To think it took lyme disease to bring us together. =)

CajunGrl
Veteran Member


Date Joined Mar 2009
Total Posts : 4717
   Posted 1/21/2010 2:34 PM (GMT -6)   
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:
ko_@bellsouth.net

If you'd like more doctor suggestions, you can email stephanie at: stephanie@turnthecorner.org 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.
**You never know how STRONG you are....until being STRONG is the ONLY choice you have**

lymediseasethroughmyeyes.blogspot.com/

Co-Moderator Lyme Disease Forum


gmm5of6
New Member


Date Joined Jan 2010
Total Posts : 7
   Posted 1/21/2010 2:44 PM (GMT -6)   
Thank you CajunGrl. I have been reading past post, great stuff here. Lately I have been feeling like a hypochondriac when I talk to others so it is nice to know I can talk here. It has freed me a little.

JennInPA
Regular Member


Date Joined Sep 2009
Total Posts : 228
   Posted 1/21/2010 3:41 PM (GMT -6)   
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!
“You must be the change you wish to see in the world.” -Gandhi

http://lymeactually.blogspot.com/


gmm5of6
New Member


Date Joined Jan 2010
Total Posts : 7
   Posted 1/21/2010 3:57 PM (GMT -6)   
Hi JennInPA, I have found this whole experience weird. My only consolation to the rash is I only need to shave my beard and I have yet to have a face rash. Thank God for small miracles. :)

maunsie
New Member


Date Joined Jan 2010
Total Posts : 9
   Posted 1/21/2010 4:17 PM (GMT -6)   
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

JennInPA
Regular Member


Date Joined Sep 2009
Total Posts : 228
   Posted 1/21/2010 4:58 PM (GMT -6)   
It can be so overwhelming especially if you do alot of research like I did. I was diagnosed Aug 09 and the road has been rough however I am finally feeling better. I have bad days still but nothing that keeps me down. Diet plays a huge part and also detox baths have been the best thing I've done so far!!
“You must be the change you wish to see in the world.” -Gandhi

http://lymeactually.blogspot.com/


lifisgr8
New Member


Date Joined Jan 2010
Total Posts : 1
   Posted 1/21/2010 6:10 PM (GMT -6)   
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.

gmm5of6
New Member


Date Joined Jan 2010
Total Posts : 7
   Posted 1/21/2010 6:56 PM (GMT -6)   
Hello maunsie. I feel your pain, but you made me remember the lyrics to a song...
Sadness bears no remedys for the problems in your life
while you run your race, keep a smiling face
life is on your case, yes it is yeah
this world can't shake me, bad times can't make me sad
cause I been there before, don't wanna go no more
this world can't take me, won't let it drive me mad
you can't shake the way I feel today, come tomorrow I'll feel the same ol' way
use the sunshine in your heart to ease the pain.....

until tomorrow all, goodnight.

CajunGrl
Veteran Member


Date Joined Mar 2009
Total Posts : 4717
   Posted 1/22/2010 12:21 PM (GMT -6)   
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?
**You never know how STRONG you are....until being STRONG is the ONLY choice you have**

lymediseasethroughmyeyes.blogspot.com/

Co-Moderator Lyme Disease Forum

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