posted
Hi, I was diagnosed with a mild form of lupus two weeks ago after a year of many tests and
numerous dr visits. i would like to give a brief history, 16 years ago started with rashes, joint
pain tested positive to the Elisa but negative to Western Blot and was basically told that I must have fibro which I did not believe and
somewhat gave up trying to find an answer. I would have episodes through the following years of extreme joint pain, repeated shingle infections and had become very sun sensitive.
One year ago I vacationed in Florida for a week and came home with the worst sun rash I have ever have. Three weeks after that I started with
joint pain knees, hips, extreme rib pain and since then have had an unintended weight loss of 45 pds and vertigo. My ANA counts is elvated but
other lupus blood work has come back within normal limits. In october I broke 5 ribs (unexplained) and now have a spinal compression
fracture. The bone density test was -4.9 (not good) and my vit. d level was 18, calcium blood levl was normal. Now I have taken calcium and
vit d for 16 years as I had a total hysterectomy at the age of 37. The only other blood tests that are off is wbc is most often elevated in the 16 to 18 range and my sodium level is always
low, again up to now the drs. cannot explain this.To get to the reason of this long winded post (sorry but wanted to post a background) is my first visit to the infectious disease dr was today. He told my husband and I there were two
different "camps" of drs. ones the believed in long term treatment for a late diagnosed lyme and those like himself that did not see any
benefit of more then a 4 week course of doxcyline. He also felt that more then one thing was going on specifically concerning the weight loss as that was not a typical presentation.
As you might imagine this is all very confusing to my way of thinking what has occured in the past year has been progressive and is caused by
one disease not multiple illnesses. Any help or info that you might have would be greatly appreciated. Thanks so much
Posts: 9 | From nashua, nh 03062 | Registered: Feb 2010
| IP: Logged |
map1131
Frequent Contributor (5K+ posts)
Member # 2022
posted
Sorry you had to find our support group. Glad you did because you've been duped by a illiterate doctor on the truth about Lyme Disease & company (co-infections, usually vectors carry more than one bad guy in there blood).
I do believe the good news that just happened in the last couple days....new laws and legislation on Lyme Disease in the state of NH.
Let me find that thread and post it here for you to read. I don't think that doctor duped you at all. You will find others come along and give you ideas where to turn in the state of NH.
-------------------- "Never, never, never, never, never give up" Winston Churchill Posts: 6495 | From Louisville, Ky | Registered: Jan 2002
| IP: Logged |
yes there are two camps...one camp is made up of mostly mainstream doctors who follow narrow misguided, criminal guidelines(imho)...many of them follow unknowingly some with malice...then there is the other camp which helps people but has to do it cloak and dagger because they don't follow the published guidelines...
i know this sounds crazy but for perhaps you and all of us on here that situation presents an obstacles to proper diagnosis and treatment...sounds like a conspricay theory doesn't it...i wouldb't beleive it had i not lived it...mainstream docs could not and some cases would not diagnose me....so how do you find the other camp? the good guys as i call them....you need to post in find a doctor...these doctors hide and are treating by word of mouth.
bottom line i always tell people is that until you see a lyme literate doctor you cannot rule out lyme...no valid tests exsist...yet mainstream relies on it....don't beleive it? i was bit, tick tested positve. me negative 10x over 2 years until i was on the edge of my life being over...but i was with the bad camp...finally got to the good camp...diagnosed and still treating...ans since treatment tested positive....so theres the proof that the tests are useless
hope this helps.
Dave
-------------------- On my journey to wellness - One day at a time. Posts: 989 | From NJ | Registered: Sep 2008
| IP: Logged |
posted
Hi I neglected to add that I have tested posiive to Lyme by the Western Blot and Elisa last week, but I am not sure what to believe anymore. That is why I wanted info from people who actually know. Thanks again
Posts: 9 | From nashua, nh 03062 | Registered: Feb 2010
| IP: Logged |
julielynne4
Unregistered
posted
You've found the right place for information about Lyme Disease.
So many people here have been where you are now, wondering and trying to figure things out. You need to read and read and read, learn what you can and become informed about the truth about lyme disease and what it can do to our bodies and minds.
But in the meantime, please know that you certainly could have lyme, and that in order to get properly diagnosed and treated, you need to see a Lyme Literate Medical Doctor (LLMD).
You can find one close to you by posting in the "Seeking a Doctor" section.
Lupus is certainly one of the many diseases that is often used as a diagnosis when the "real" culprit is lyme.
I am sure you will receive much wonderful information from the many knowledgable people here on lymenet. I wish you the best - jl
IP: Logged |
posted
I am surprised that the ID doctor admitted to you that there are two camps of doctors and a disagreement. Most of the stories I have heard, they claim there is only one and they are right.
However, it seems like almost everyone on here has been summarily dismissed by an ID doctor and either told to accept a diagnosis other than Lyme, even if it didn't fit their symptoms, or not to come back.
In either case, they could not get treatment from that doctor, or perhaps they got a month or two, and then got cut off when they came back because they were still sick.
If you had positive Lyme tests, you have Lyme. If you had negative Lyme tests, you could still have Lyme. You need an LLMD, one associated with ILADS if possible, to give you the real advice about what you have and how to get better.
ILADS is the group of doctors that the "good guys" belong to, i.e., the doctors who are willing to try to help us, and sometimes succeed.
IDSA is the group that the "bad guys" are in, because their guidelines say to treat us for 2-4 weeks and then stop, and to be very restrictive about even considering a diagnosis of Lyme at all. Doctors who just don't know any better also follow their guidelines.
-------------------- Don't forget to laugh! And when you're going through hell, keep going!
Bitten 5/25/2009 in Perry County, Indiana. Diagnosed by LLMD 12/2/2009. Posts: 756 | From Inside the tunnel | Registered: Jan 2010
| IP: Logged |
map1131
Frequent Contributor (5K+ posts)
Member # 2022
posted
I too was surprised he admitted the two camps theory...then said he belonged to the dumb and dumber camp. Duh?
Pam
-------------------- "Never, never, never, never, never give up" Winston Churchill Posts: 6495 | From Louisville, Ky | Registered: Jan 2002
| IP: Logged |
Dekrator48
Frequent Contributor (5K+ posts)
Member # 18239
posted
Welcome!
Sorry to hear you have chronic lyme.
Please listen to the people here who have been through the same thing!!!
I have a positive speckled ANA. My LLMD told me that he sees that frequently and it usually resolves with proper lyme treatment.
You may have common coinfections like Babesia, bartonella and ehrlichia too, so make sure you waste no more time and find a good LLMD who follows ILADS guidelines.
Make sure you read as much as you can. You must be your own best advocate.
-------------------- The fibromyalgia I've had for 32 years was an undiagnosed Lyme symptom.
"For I know the plans I have for you", declares the Lord, "plans to prosper you and not to harm you, plans to give you hope and a future". -Jeremiah 29:11 Posts: 6076 | From Pennsylvania, USA | Registered: Nov 2008
| IP: Logged |
quote:Originally posted by map1131: [QB] I too was surprised he admitted the two camps theory...then said he belonged to the dumb and dumber camp. Duh?
That shows how dumb they really are!!
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
| IP: Logged |
Pinelady
Frequent Contributor (5K+ posts)
Member # 18524
posted
Hello. You have classic Lyme symptoms. Low D, Low
sodium, and most likely low protein. Low sed rate.
High hemoglobin. Many have low lymph from the
borrelia. You have come to a good place for info.
I would seek a LLMD to help you get well. Any
doctor who tells you antibiotics will not help is
stupid about Lyme.
-------------------- Suspected Lyme 07 Test neg One band migrating in IgG region unable to identify.Igenex Jan.09IFA titer 1:40 IND IgM neg pos 31 +++ 34 IND 39 IND 41 IND 83-93 + DX:Neuroborreliosis Posts: 5850 | From Kentucky | Registered: Dec 2008
| IP: Logged |
The Lyme Disease Network is a non-profit organization funded by individual donations. If you would like to support the Network and the LymeNet system of Web services, please send your donations to:
The
Lyme Disease Network of New Jersey 907 Pebble Creek Court,
Pennington,
NJ08534USA http://www.lymenet.org/
UBBFriend: Email this page to someone!
![[Roll Eyes]](rolleyes.gif)
Printer-friendly view of this topic