posted
I took the Western Blot test via Ignex in May. It indicated that I met all criteria for Lymes (CDC and Lab). My GP sent me to an "infectious disease" Dr. He ordered the serology test and it came back negative. I was told that I did not have Lymes and that the Western Blot meant nothing w/o a positive serology test. At that point he told me I have MS and I went back to my Neuro.
Last month I developed a crater-like hole right below my shoulder. Everyone freaked out because my CK level were high and they thought it was atrophy. An EMG was ordered and showed no atrophy, but the tissue (lipids) underneath my skin were breaking apart? My Neuro was shocked! That is when I brought up Lymes and found out that he never received the Western Blot results, just the serology report (thanks infectious Dr). I could not believe that he might accept the results as an indication of Lymes finally. . . he confirmed that I have all the symptoms.
However, the shoulder problem is still a mystery. Come to find out, I received a shot of steriods in April and the nurse could have caused the damage to my shoulder, but we are not sure. Can Lymes do this to your tissue underneath your skin?
Also, if this is Lymes can I expect to return to normal after treatment? I drag my right leg around, I have tremors (meds help) and numerous other problems.
I hope I do not sound naive, but this is all over my head right now (brain fog).
thank you!
PS I laughed when my Neuro's nurse said that it would be extremely rare to have Lymes in Texas!
breathwork
Frequent Contributor (1K+ posts)
Member # 567
posted
Unfortunately the infectious disease docs are the last ones that we should see for lyme.
The test that he wanted was an ELISA, most likely, and it is seldom positive...when it is, it's like gold, but the chances of it being a false negative are very high.
LLMD's...lyme literate docs....treat lyme according to the presenting symptoms. Western Blots, done by Igenex, are the best test that we have at the moment. If you are positive by CDC reporting standards on a WB then you have lyme. Plain and simple. The CDC says that diagnosis and treatment should be based on presenting symptoms, that negative blood work is not the standard for saying that someone does not have lyme.
I had two infectious disease docs tell me that I was mentally ill even with a positive Western Blot and an equivocal ELISA. One was the head of ID at Stanford.
This sort of dismissive and shaming treatment is why you won't find many Lyme Literate Medical Doctors (LLMDs) with the title of "Infectious Disease Specialist".
As to the crater in your shoulder, why the heck did a nurse ( and I am one) administer a steroid shot in your shoulder? I am assuming that the shot was for shoulder pain.
Yes, the steroids can cause tissue degeneration at the location of the shot, but this usually doesn't happen when it's administered properly.
Your neurological symptoms very well may respond to treatment for lyme. Mine are all but gone..I had tremors, lots of nerve pain, difficulty walking, etc....Treating lyme with neuro symptoms is a bit of a long haul, but certainly worth it to me!
Finding a doctor who specializes in treating lyme, a true LLMD, is the key to finding out what's what. There aren't too many of them, and they are saviors for most of us!
quote:Originally posted by breathwork: Unfortunately the infectious disease docs are the last ones that we should see for lyme.
The test that he wanted was an ELISA, most likely, and it is seldom positive...when it is, it's like gold, but the chances of it being a false negative are very high.
LLMD's...lyme literate docs....treat lyme according to the presenting symptoms. Western Blots, done by Igenex, are the best test that we have at the moment. If you are positive by CDC reporting standards on a WB then you have lyme. Plain and simple. The CDC says that diagnosis and treatment should be based on presenting symptoms, that negative blood work is not the standard for saying that someone does not have lyme.
I had two infectious disease docs tell me that I was mentally ill even with a positive Western Blot and an equivocal ELISA. One was the head of ID at Stanford.
This sort of dismissive and shaming treatment is why you won't find many Lyme Literate Medical Doctors (LLMDs) with the title of "Infectious Disease Specialist".
As to the crater in your shoulder, why the heck did a nurse ( and I am one) administer a steroid shot in your shoulder? I am assuming that the shot was for shoulder pain.
Yes, the steroids can cause tissue degeneration at the location of the shot, but this usually doesn't happen when it's administered properly.
Your neurological symptoms very well may respond to treatment for lyme. Mine are all but gone..I had tremors, lots of nerve pain, difficulty walking, etc....Treating lyme with neuro symptoms is a bit of a long haul, but certainly worth it to me!
Finding a doctor who specializes in treating lyme, a true LLMD, is the key to finding out what's what. There aren't too many of them, and they are saviors for most of us!
Carol Ann
Thank you for your information! The Dr. implied that the nurse messed-up! I am trying to get my records to see if the spot that is cratered was where the shot was admin. I was given the shot for breathing problems . . . they thought it was a respitory infection, however soon after I had a HUGE flare-up! I now think that my breathing problems are related to Lymes ~ I have tightness in my chest at times.
I hate to say this, but after four years of not knowing it feels good to give this a name!
breathwork
Frequent Contributor (1K+ posts)
Member # 567
posted
Tightness in the chest and shortness of breath have been part of my problems with babesia coinfection with lyme.
A steroid shot in the arm for respiratory distress? that sounds nuts to me! Oral sterids or IV steroids are used for that.
Also, steroids in general are contraindicated for lyme patients. They somehow make it much more difficult to treat lyme. Patients who have been misdiagnosed with MS and been treated with steroids have a harder time clearing lyme.
OK, somebody chime in here with the links for newbies? (Sorry, I'm feeling a bit inept with the links stuff).
Yes, you have a steep learning curve ahead of you with lyme and the other bugs that the ticks can share with you. But, lymenet is here to help with questions or befuddelment, and you will find support as well as information.
Keep asking questions...check out the library on lymenet for Dr. Burrascano's treatment guidelines and other information, ask in the Seeking A Doctor section for an LLMD near you....You're on the right road..
rosesisland2000
Frequent Contributor (5K+ posts)
Member # 2001
posted
lymes be gone, Welcome to LymeNet. Sorry that you have had to find us, though.
The best advice I can give you is to drop the ID duck, as 99% of them know zilch about the treatment of LD, muchless about the testing of Lyme, not Lymes. A real Lyme Literate Medical Doctor (LLMD) will be one that usually has the majority of their patients with Lyme Disease.
The links that "too" has provided you are some essential reading for you in order for you to actually get a good understanding of this most complicated disease.
Yes, there is Lyme in Texas and there is a lot of it!!!! I think that Texas even has a Lyme Commission now, so the powers that be know this.
You have to get to someone who specializes in LD in order to get the treatment you will surely need.
All the tests can be inaccurate, and the CDC plainly states that LD is a clinical diagnosis (dx) supported by symptoms.
Lyme Disease mimics many diseases and MS is one of the most mis-diagnosed, when really all along the problem is Lyme Disease.
As for your shoulder, I, too, have had serious problems with mine that I believe was caused by LD. After about 10 months of suffering with pain in my right shoulder and producing limited use of my right arm (I'm right-handed, to boot), I finally got an x-ray and it showed a problem, confirmed by an MRI to be a bone spur.
That bone spur caused my rotator cuff to have a very large tear and consequently I had to have surgery to correct it.
If you shoulder does not have a tear, then I highly recommend that you find someone who practices Prolotherapy in your area and have them look at it. www.google.com and use the keyword, Prolotherapy to find out more about it.
I have a neighbor who has chronic Lyme and even though she was diagnosed with it, she is not seeking further help by seeing an LLMD. Lyme disease, too, caused her bone spur and she, too, had to have it removed.
Do not have anymore steroids, cause if you DO have LD, then, steroids are one of the worse things that you can do. Prolotherapy does NOT have any steriods in it.
Where in Texas are you from, if you don't mind telling us? There are two LLMDs in East Texas, and as far as I know, a couple in Houston and a couple in Dallas. So, surely you'd have a good chance of finding one who can treat you properly.
You can go over to the Seeking a Doctor forum and post there for one in your area.
Remember, to come back for more support, often as you need it. Oh, and if you don't want to reply with quote each time, making the post that much larger to have to scroll through each time, you can use the Post Reply button that is at the top and the bottom of the page and it will allow you to do just that.
posted
In response to the last post, I am from the Houston area (small town NW). I know of two families in this area w/ LD. By the grace of God, I found out about Lyme from two different people in the same week. I have been searching for answers for four years.
My shoulder is not torn, the muscle just divided in half. My Neuro. said that the tissues/lipids underneath the skin were wasting. This was a BIG deal because my EMG turned out ok, otherwise he said he would look into MD or ALS. If I can prove that the shot cause the problem (via GP's records) he will go full speed ahead into DX me with just Lyme. If not he will do extensive DNA testing.
I ordered the Western Blot myself with the help of a LLD in Houston. He is not accepting patients, but was gracious enough to give me the DX for the test. It was positive, but my GP refered me to the dreaded ID! I wasted six months doing more test when I could have been treated! UgH!!!
So, I am trying to find some around who will take me as a patient.
treepatrol
Honored Contributor (10K+ posts)
Member # 4117
posted
WELCOME To LYMENET
Here's more goodys! A typical response to newcomers.
Hi and WELCOME! Get a LLMD or at least Dr that is willing to learn about lyme. Borrelia Burgdorferi is a clinical diagnosis, based on symptoms and on your response to treatment. Good Luck, bumpy road ahead.
Post for a LLMD inSeeking a Doctor. Ps remember I am not a Dr, just a fellow sufferer.
( No you don't always see a bite and if there's no bullseye the only way your going to be able to tell is (symptoms) and (((Maybe))) WB or lyme dot blot 3 day urine banged with abx's to free your antigens up for the test. ) See this ( . )thats the size of the larva stage tick... Next nymph size... ( * ) Next is adult ( o ) to ( 0 ) Pretty small????? HUH
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