When I was 18, 4 years ago, I was diagnosed with Lyme's disease after being mis diagnosed originally.
Because the test was originally a false negative, I was lead to believe there wasn't a problem, and the disease was allowed to go un treated for quite a few months.
After a second look into what was wrong with me, they took more blood, and I was told this time what was wrong.
I was prescribed antibiotics for 2 to 3 weeks if I remember correctly.
I finished them, and seemed to go back to normal and thought all was well.
I lost 60 pounds in the span of just a few months.
About 2 years ago I started getting joint pains, fatigue, and I developed a rash on my hands.
I went to the doctor about the rash, but did not link the two, and didn't really know at the time that Lymes could be showing itself again with the joint pain.
I was prescribed, again, by a different doctor, the incorrect medication for my hands, as I still have the skin problem.
I am now 22, and the last few months have gotten un bearable with the pain.
I am not able to walk down stairs without lifting my body on the railings, I cannot run, when I sit, I feel spiking pains in differnet parts of my legs and arms, and I limp on the left leg terribly.
I believe I need to see a specialist, because normal doctors have dropped the ball time and time again with this disease, but I'm not sure exactly who I should be looking to see.
Should I be looking towards a doctor who specializes in bone and joint problems?
Is it going to be too late for me to fully recover, or is their still a chance to make a full recovery after treatment?
TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
Yes, you need to be seen by a doc who specializes in lyme disease. That is most likely what is causing all of your problems.
On the left of the screen, you will see "Support Groups" page. Find the ones for your state and contact them to find out who the good lyme docs are in your state.
You can also post in the "Seeking a Doctor" forum on LymeNet and make the title of your post something like "Need Lyme Doc in NJ or Near There."
Then, other posters will send you names of docs they recommend, and BettyG will send you the names for your state.
It is NOT too late for you to fully recover from this. I was undiagnosed at least 5 years if not 10 years with lyme disease and 2 other tick-borne infections. I have been free of these diseases for nearly 4 years now, enjoying my life.
The key to recovery is getting a good doc who follows the Dr. Joseph Burrascano lyme disease treatment guidelines. When you call a doc's office, ask if he follows these guidelines. If not, I suggest you call another lyme doc, OK?
If you want to read these guidelines for yourself, they are here:
Look at the long list of symptoms in this document, on pages 9 and 10. See how many you have.
Read up on lyme disease, especially on the ILADS website. The more you know about your disease, the better you will be able to evaluate the doc you choose to treat you.
Also, a Boston TV station did a great show on lyme disease a few months ago. Here is the link to it: http://www.kettmann.com/Lyme When you get to the site, select the link to view the show. The show was taped by a girl on LymeNet and she put it on-line for all of us to be able to view it. You will learn a lot about the medical controversy surrounding lyme disease and why it is so hard to find a doctor who knows how to cure you of lyme disease.
The doc is the key to getting rid of lyme disease. See the best lyme doc you can.
Posts: 9931 | From Maryland | Registered: Dec 2007
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TerryK
Frequent Contributor (5K+ posts)
Member # 8552
posted
Sorry you are having to deal with this now instead of being treated properly years ago when you first got the infection.
There are many people here who have had the same thing happen to them but who recover after adequate treatment for lyme and co-infections (infections that are passed at the time the tick passes lyme).
The fact that you had lyme disease and were not treated adequately makes it very likely that your current symptoms rae related to lyme disease and/or co-infections.
You need to see an LLMD (lyme literate medical doctor). You want one that is a member of ILADS. www.ilads.org
There are some doctors who treat chronic lyme disease who are not members of ILADS. I personally prefer an ILADS member because I feel that they are much better trained and keep up with current thinking on chronic lyme.
There is quite a controversy over chronic lyme disease. Due to this you may have to travel in order to see a doctor who can help you.
Wishing you the best, Terry I'm not a doctor
Posts: 6286 | From Oregon | Registered: Jan 2006
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bettyg
Unregistered
posted
quote:Originally posted by TF:
Then, other posters will send you names of docs they recommend, and BettyG will send you the names for your state.
It is NOT too late for you to fully recover from this. I was undiagnosed at least 5 years if not 10 years with lyme disease and 2 other tick-borne infections. I have been free of these diseases for nearly 4 years now, enjoying my life.
The key to recovery is getting a good doc who follows the Dr. Joseph Burrascano lyme disease treatment guidelines. When you call a doc's office, ask if he follows these guidelines. If not, I suggest you call another lyme doc, OK?
If you want to read these guidelines for yourself, they are here:
Look at the long list of symptoms in this document, on pages 9 and 10. See how many you have.
Read up on lyme disease, especially on the ILADS website. The more you know about your disease, the better you will be able to evaluate the doc you choose to treat you.
WELCOME TO THE BOARD! you've got plenty of hope!!
i;ve had LYME disease with NO S or 's on the end for 39 years; 34.5 yrs. MISDIAGNOSED by 40-50 drs!
TF; sorry but dr. burrascano UPDATED his guidelines as of 9-2008, and the correct link is below!! i deleted what you showed above to not confuse newbie and other newbies reading this.
Welcome; i'm so glad you found us!! You've come to the right place for education and support!
Dr. Burrascano's most recent "Diagnostic Hints and 2008 Treatment Guidelines for Lyme and Other Tick Borne Illnesses" @
please see BettyG's newbie package info on the link below; click on link at bottom of my package. Check it out as time permits for you!
*************** please go to my newbie links, copy the entire thing, and then print this off....FINANCIAL BURDENS compiled by melanie reber print off pages 74 - 92; outstanding info there. i believe there are a few more general comments there without links!! print that off too as it's newer info from members thru their own personal, tragic experiences.
Betty's POSTING GUIDELINES . many of us have neuro lyme where we can NOT read long solid block text and be able to comprehend and read it as is.
please edit your post by CLICKING PAPER/PENCIL ICON to right of your name. that opens up BOTH subject line and body text.
now please break up your WORDY SENTENCES into one sentence paragraphs. Then hit ENTER KEY ``TWICE`` after each paragraph; we need that space for comprehension.
NOTE: you do NOT have to use "", just show the name of person you are responding to, and then type your comment.
IF you need to use "", PLEASE DELETE "BOLD" CODES so it's regular type text we read vs. the DARK, HARSH/PAINFUL BOLDING. delete the first 4 characters of 2ND LINE of a ""
[QB] just delete these 4 characters, and BOLDING is GONE! my eyes will really appreciate that; it's one very bad side effect of my having lyme for 38.5 years!! xox
then go to left hand corner and mark box to receive ALL REPLIES, and click EDIT SEND
we thank you for helping us; otherwise, we will SOB, SCROLL ON BY, since we can't read to help you. If I see posts like this, I SOB them; to hard on me. ------------------------------------------------------
People seeking doctors might be able to get help from their state online information and support group. Nearly 3,400 people belong to state groups. Some of the groups are small but more than 20 of them have 50 or more people and seven have over 100.
The groups are moderated and you have to apply. Most don't allow doctor names, but once on the group, you can ask for doctors in a certain area and ask people to email you privately. *******************************************
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13 years Lyme & Co.; Small Fiber Neuropathy; Myasthenia Gravis, Adrenal Insufficiency. On chemo for 2 1/2 years as experimental treatment for MG. Posts: 4480 | From Northeastern Connecticut | Registered: Jun 2005
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otherwise, we will SOB, SCROLL ON BY, since we can't read to help you. If I see posts like this, I SOB them; to hard on me. 
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