HealingWell
Search Close Search
☰

Is this true?

Support Forums
>
Lyme Disease
✚ New Topic ✚ Reply
❬ ❬ Previous Thread |Next Thread ❭ ❭
Posted 4/5/2011 11:58 AM (GMT 0)
I've finally been sent to see a rheumatologist after complaining to my PCP about knee, foot, hip pain, headaches, chronic fatigue etc...
On my first visit he told me I have had juvinile rheumatoid arthritis since childhood and it just went undiagnosed. He made this assumption without any testing and the only thing he asked about my childhood was if I had "growing pains", which I did. My pain didn't start until my late 20's, I am now 37. He sent me for blood work anyway. Rheumatoid was negative, Lyme test was positive but he says that the first test was positive but second part was negative....he told me it just meant that I had Lyme in the past and it had nothing to do with my problems now and he is keeping the diagnosis of JRA.
I called my PCP to ask about this and she says she doesn't know much about Lyme and that any questions I have I'd have to talk to the rheumatologist about them since he ordered the test. I don't know what to do now. I have been trying to get a diagnosis for 10 years, I finally thought I would be helped when I heard the positive for Lyme but he's not going to do anything?? Should he? Can someone explain the test better? Fed up.
Posted 4/5/2011 12:25 PM (GMT 0)
 Hi Mlsskn,

I never had JRA so I know nothing about that.   But....

Lyme test was positive but he says that the first test was positive but second part was negative....he told me it just meant that I had Lyme in the past and it had nothing to do with my problems now

 

I initially had the same result with my first test for Lyme-- which suggested (by being indeterminate) that I had Lyme sometime in the past. 

That is true but I DO have it now and have been diagnosed on symptoms NOT on blood tests.

As a result of negative testing (readings) by uniformed and supposed Lyme doctors, my treament for it was too conservative to be of any real value because none of the docs really believed I had Lyme. 

As a result, I wasted several months with minmal antibiotics-- had 2 very bad relapses, etc.  

FINALLY I  went to a real LLMD who is now treating my Lyme properly. Hopefully it isn't too late for me.  I have been battling Lyme for over 5 months now....and was probably infected a at least a good six months prior to that. Or even longer.   

Am kicking myself for 'listening' to non LLMD's and accepting their wrong diagnosis and conservative treatments which did not work! 

My best advice to you (my personal advice-- I'm not a doctor) would be to see a real LLMD. 

Good luck!  :-)

 

Posted 4/5/2011 1:56 PM (GMT 0)
I totally agree with Cat111,

Do go find a lyme literate doctor. You need to be diagnosed clinically; don't depend on inaccurate tests and the conclusions of someone who doesn't understand lyme disease.

You don't have to accept ill-health! Be your own advocate and don't stop until you get treatment.

Good luck!
Posted 4/5/2011 2:36 PM (GMT 0)
Hi Misskn!
WElcome to our forum! I am sorry that you have had such health issues, but you have come to a really good place to learn about Lyme and other tick-borne infections as well as find support and understanding!!

It would be a really good idea for you to read the very first thread at the top of the forum titled, "New to Lyme?...Start here!" as it is packed full of some very important info and useful links that were put together by our members.

As for the tests - you have been given some really good advice to get to a LLMD (Lyme Literate Medical Doctor) as they will follow treatment guidelines based on science rather than just "expert opinion". They are also capable of diagnosing (dx-ing) by

symptoms alone, as the tests that are currently available are only capable of detecting the bacteria while it is active in the blood stream!! Since the main goal of any living thing is to survive - they don't stay in the blood stream any longer than necessary as that is when they are the most vulnerable.

If you showed positive for a past infection, and did not receive adequate treatment, you could have the chronic form of Lyme. This will require you to seek treatment from someone who actually understands what they are treating.

We here at HW can offer you two options to help you find a LLMD. The first is that you can start another thread with your state and the nearest 'big city' to you listed asking the members here for a 'referral' in a way. You will need to make an email address available so that members can contact you with this information, as we don't list more than the docs initials here in order to protect them from prosecution.

The second option is this;
For information on finding a Lyme Literate Medical Doctor(LLMD) in your area, please email our long time member, Dan's Mother 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 can also go to The Lyme Disease Association and search for LLMD's 3 times in a month. You have to register first. Here is the link: www.lymediseaseassociation.org/index.php?option=com_content&view=article&id=277&Itemid=74

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/lyme_disease/treatment_guidelines_clearing_ilads.html


I do hope this helps a bit!!
Once again welcome!! We hope to be able to get to know you better through your posts!
Trav smilewinkgrin
Posted 4/5/2011 9:57 PM (GMT 0)
Is it possible that when the Dr refered to the first and second parts of the test he was talking about the IGG and IGM of a WB. If he was then all he probably read was the CDC criteria for being positive - you need ten +'s to be CDC positive, so if you had 9 you'd be classed as a negative. I expect all on here would agree that you don't need all ten +'s to suffer while the result viewing non-LLMD's are quick to dismiss Lyme. Try to get the results from your Dr and post them, lets have a look - I'm sure someone on here is smart enough to decipher them, and take some good advice and find LL Dr.
Posted 4/8/2011 12:45 PM (GMT 0)
Thank you so much for the informative replies.
I had him mail my test results so I could read what it says.
The first one just says Lyme Screen, I'm going to assume this is the ELISA test. This one says Positive 3.20 IV H <0.90. The second test is Western Blot in two parts....... IGG is negative with no bands present out of the 10 possible listed. IGM says negative with one band present (23 kda) out of five bands. I don't really know what any of it means. All the rheum. Said was that I had it in the past, but it's not causing my problems now which he claims is rheumatoid arthritis. All of my tests for any types of arthritis have been negative though. He is also not taking any other symptoms I have into account....TIA's, chronic headaches, neck stiffness, skin problems etc etc....
I have a feeling I may have these problems for another 10+ years before getting some help. :(
Posted 4/8/2011 3:23 PM (GMT 0)
Hi Mlsskn,

I've got almost the exact same set of symptoms as you and my most recent Western blot had the same bands as you (negative for all IgG and positive for only 23 kDa on IgM). My rheumatologist told me I was "fine" and just needed to do physical therapy for my joint pain. At first I listened to him and my symptoms just got worse.

I recently started seeing a naturopathic doctor who specializes in Lyme. According to him I still have Lyme and also babesia. I've been using his detox and lyme/babesia treatment for 1.5 weeks now and already notice some slight improvements in my neck stiffness and headaches.

I have my first LLMD appointment next week, just to get one more opinion and see if I need to go back on antibiotics.

So, if you're still having symptoms, don't make the same mistake I did. Don't just rely on your rheumatologist. Go see an LLMD.

Good luck!
✚ New Topic ✚ Reply