Quest Lab: The elisa was High equivocal. The western blot was all negative igg but positive for bands 23 and 41, thus a positive IGM.
However of course disclaimer on labwork stating that if patient has been sick longer than a month, there is a high incidence of false positive.
I had a known tickbite a little over a year ago. Became very symptomatic several months after a steroid injection. The tick was behind my ear and this is the side that has infection in face / teeth that has been awful and will not go away. It is acocompanied with a discharge. Nothing alarming is seen on any dental xrays.
The very first symptom i had was a huge swollen face, pressurized head ( a feeling i have never felt before....and im afraid that when i say this docs think i mean headache but it is so very different). Stiffened neck. Heavy head. Stiffened gait. Massive weight loss. Muscle atrophy. Numb feet and lower legs. Sometimes i can barely walk.
What has been so confusing is that i am also a back pain patient with a known disc issue and some cervical issues so we thought for a while these had gotten worse. I have borderline cervical stenosis and my symptoms present like cervical myelopathy but the mri doesnt suggest that. I do have a lumbar disc that has worsened and have had an si fusion. So the neuropathy part could be from multiple sources.
I am absolutely pulling my hair out. The ID doc i saw trained at Harvard and treated lyme up north. I am in the south and He did NOT think i presented as lyme due to the infection in my face. And he says it is rare here. I know thats not so. Have already spoken to three people here that have it...and were also told false positive. He said he wasnt throwing it completely out but thought it was false and that since the 39 band was not positive it made it more likely to be false..and since i had no igg.
Posted by iluvrain (Member # 40055) on :
The positive bands were igm i should have said.
Posted by Lymetoo (Member # 743) on :
I would never trust what an ID Dr told me about Lyme. NOPE.
"With most infections, your immune system first forms IgM antibodies, then in about 2 to 4 weeks, you see IgG antibodies. In some infections, IgG antibodies may be detectable for years.
Because Borrelia burgdorferi is a chronic persistent infection that may last for decades, you would think patients with chronic symptoms would have positive IgG Western blots.
But actually, more IgM blots are positive in chronic borreliosis than IgG. Every time Borrelia burgdorferi reproduces itself, it may stimulate the immune system to form new IgM antibodies.
Some patients have both IgG and IgM blots positive. But if either the IgG or IgM blot is positive, overall it is a positive result.
Response to antibiotics is the same if either is positive, or both. Some antibodies against the borrelia are given more significance if they are IgG versus IgM, or vice versa."
--Dr C of MO
Posted by TF (Member # 14183) on :
I hope you know now not to let any doctor give you any immune suppressants (steroids, etc.) ever again unless it is a life threatening situation.
When they suppress your immune system, the lyme can go crazy in your body--nothing to fight it off. That's what happened to you.
Here is what Burrascano says about it:
"More evidence has accumulated indicating the severe detrimental effects of the concurrent use of immunosuppressants including steroids in the patient with active B. burgdorferi infection. Never give steroids or any other immunosuppressant to any patient who may even remotely be suffering from Lyme, or serious, permanent damage may result, especially if given for anything greater than a short course. If immunosuppressive therapy is absolutely necessary, then potent antibiotic treatment should begin at least 48 hours prior to the immunosuppressants." (page 12)
"More severe illness also results from other causes of weakened defenses, such as from severe stress, immunosuppressant medications, and severe intercurrent illnesses. This is why steroids and other immunosuppressive medications are absolutely contraindicated in Lyme. This also includes intraarticular steroids." (page 4)
"If treatment can be continued long term, then a remarkable degree of recovery is possible. However, attention must be paid to all treatment modalities for such a recovery- not only antibiotics, but rehab and exercise programs, nutritional supplements, enforced rest, low carbohydrate, high fiber diets, attention to food sensitivities, avoidance of stress, abstinence from caffeine and alcohol, and absolutely no immunosuppressants, even local doses of steroids (intra-articular injections, for example)." (page 20)
You will see all of your symptoms on his symptom list on pages 9-10. The stiff neck is classic lyme. Numbness is very common with lyme.
I suggest you study this document and decide to get yourself to a real lyme doctor. A top notch lyme doctor gives you the best chance of recovery.
See page 6 for how lyme disease must be diagnosed:
"DIAGNOSTIC HINTS
Lyme Borreliosis (LB) is diagnosed clinically, as no currently available test, no matter the source or type, is definitive in ruling in or ruling out infection with these pathogens, or whether these infections are responsible for the patient's symptoms. The entire clinical picture must be taken into account, including a search for concurrent conditions and alternate diagnoses, and other reasons for some of the presenting complaints. Often, much of the diagnostic process in late, disseminated Lyme involves ruling out other illnesses and defining the extent of damage that might require separate evaluation and treatment.
Consideration should be given to tick exposure, rashes (even atypical ones), evolution of typical symptoms in a previously asymptomatic individual, and results of tests for tick-borne pathogens. Another very important factor is response to treatment- presence or absence of Jarisch Herxheimer-like reactions, the classic four-week cycle of waxing and waning of symptoms, and improvement with therapy."
Notice the last sentence of the quote. "Another very important factor is response to treatment...." So, the lyme doctor will give you a course of lyme treatment and determine whether or not you have lyme based on your response to the treatment. That is how lyme is diagnosed. You had the tick bite, you got much worse with a steroid injection, your symptoms scream lyme disease. Now, you have to get some good lyme treatment.
With this disease, it is essential that the patient become educated on lyme disease. That is because of the medical controversy. You have been experiencing the results of this controversy. It is your health. I suggest you STUDY the Burrascano Guidelines and get to a great lyme doctor.
Posted by iluvrain (Member # 40055) on :
Thanks...something else is that when i received my first antibiotic for the " dental infection " a month after the injection....the next day i woke up with the stiff neck...so bad i went to er. I wonder now if that was a herx.
Posted by iluvrain (Member # 40055) on :
Yes my mom read about the steroids and called me and said get to missourri fast!
Posted by Robin123 (Member # 9197) on :
You can be positive for IgM bands after a month's time!
Your symptoms suggest Lyme.
Yes, you can have multiple simultaneous conditions. And, the bacteria can attack the weak areas of the body. Sounds like the earlier antibiotic did treat and you herxed a little.
ID docs do not diagnose nor treat Lyme disease adequately, at all! Lyme is common just about everywhere now. You do not have to have a positive 39 band. And you do not have to have a positive IgG. They say just about anything to throw you off.
So what you need now is a good LLMD - do you have referrals to any yet or do you need to post in Seeking?
Posted by Lymetoo (Member # 743) on :
quote:Originally posted by iluvrain:
Thanks...something else is that when i received my first antibiotic for the " dental infection " a month after the injection....the next day i woke up with the stiff neck...so bad i went to er. I wonder now if that was a herx.