posted
I took a Igenex test. The B.burgdorferi IFA-G/M/A is 40. The Western Blot IgM band(kDa) 41 is '+'. The Western Blot IgG band(kDa) 41 is '++'. All other bands are negative. What do the test results mean?
I think that I have been infected with Lyme since August of 2015. My symptoms, my other test results, and my IGeneX test results together with the positive response that I have had to Stephen Buhner's herb protocol make me think that I have Lyme.
Doctors here at two premier health care providers refuse to believe that I have Lyme. They insist on a positive test whether it is based on Quest or IGeneX before they would consider putting me on antibiotics.
I think that their ignorance is dangerous for me and other Lyme patients. It has also been expensive because both health care providers have put me through a lot of tests.
I started on Stephen Buhner's protocol because no other option was available to me. I have been on the protocol for about five weeks. It is definitely helping me.
I cannot get on antibiotics and at this point, it is not clear to me that I should start antibiotics.
[ 07-03-2017, 08:53 PM: Message edited by: goodmorning ]
Posts: 6 | From California | Registered: May 2017
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TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
Your Igenex test results don't mean much since all you have is a plus or 2 pluses on band 41. However, if you tell us your symptoms and what your other test results were, we can put them all together and tell you if it sounds like lyme.
And if it does, then the fact that Buhner's protocol seems to be helping you will add weight to the entire picture.
You can't look at test results alone unless you have a lot of pluses on the lyme-specific bands.
Many people have lyme and have the test results you have. It is not uncommon.
A good lyme specialist knows to look at ALL the evidence to come up with the diagnosis. Your body may be fooled by the lyme and so it is not making antibodies to the lyme bacteria.
I hope you know that the Western Blot is looking for antibodies and NOT the lyme bacteria itself. That is why you could test negative on the Western Blot even though you have lyme. Many people do.
When you say:
"Doctors here at two premier health care providers refuse to believe that I have Lyme. They insist on a positive test whether it is based on Quest or IGeneX before they would consider putting me on antibiotics.
I think that their ignorance is dangerous for me and other Lyme patients. It has also been expensive because both health care providers have put me through a lot of tests."
please know that you are correct. That is why you have to get away from the premier health care providers and get to the doctors who have learned how to diagnose lyme disease.
Contact the lyme support groups in your area and other nearby areas. See "Support Groups" on the left side of the page.
Find out from them who knows how to diagnose and treat lyme properly. You can also post in "Seeking a Doctor" forum for names of doctors near you who know how to treat lyme disease.
I hope you know that there are "2 camps" in the medical profession when it comes to lyme disease. The majority of doctors will behave as you have experienced.
But, our lyme doctors understand that the lyme tests are NOT reliable. They will follow a diagnosis procedure as outlined in the Dr. Burrascano LYme Treatment Guidelines found here:
"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."
So, get yourself a doctor who knows that no lyme test is definitive as to whether or not a person has lyme disease.
Get a doctor who will give you a trial course of antibiotics to see how you react to them. If you are reacting well on Buhner, then you should also exhibit a reaction to lyme antibiotics.
I went undiagnosed for at least 10 years before a doctor thought to test me for lyme. When I finally got to a good lyme specialist who followed Burrascano, I found out I had not only lyme but also babesiosis and bartonella.
My doctor treated me according to the Burrascano protocol, and even though I had been sick for such a long time, I recovered. It has been over 12 years now since I completed my treatment and I am still symptom-free, enjoying my life.
Then, I sent 5 other friends of mine to Burrascano type doctors, and they all got rid of their lyme also. For this reason, I believe in the Burrascano treatment protocol for lyme.
I went to hear Dr. Burrascano speak at a lyme meeting and that is when I realized that the doctor who was treating me for lyme did not know what he was doing.
So, I studied the Burrascano protocol and then asked other lyme support groups to give me the name of a doctor who followed Burrascano's method. That is what gave me back my health.
If you have not yet studied the Burrascano Guidelines, I strongly suggest that you do. It will give you an education on lyme disease which is really a number of diseases.
Here are a few points from Dr. B's guidelines:
You must attack both the regular and cyst (or other) form of lyme simultaneously--requires 2 different antibiotics taken together to do so.
You must test the patient for all co-infections and other physical ailments (thyroid, etc.) and treat everything the person has.
You must treat all co-infections (including babesiosis, bartonella, ehrlichia, mycoplasma, etc.) or the patient will not get well.
You must use Igenex for most of these tests--they are a tick-borne disease specialty lab in Calif.
You must use very high doses of antibiotics to kill the diseases (batericidal doses).
You must give the patient supplements, probiotics, herbs such as artimesinin if babesiosis is suspected, and require adherence to rules such as low carb diet, no alcohol, no smoking, rest, and exercise as the patient is able to do it.
You must treat at least 2 months after all symptoms have disappeared (if sick at least 1 year).
These are just a few of the important points you will see in the guidelines. You want a doc who does EVERYTHING Burrascano says to do. He treated lyme for over 25 years, and compiled what he learned so that other docs could benefit from it. Read it in his Guidelines.
People came from every country in the world to be treated by him. He was the most successful lyme doctor on the planet. So, learn from him what it takes to get rid of lyme.
This is important. You don't want to waste time and money on an ineffective treatment plan. I wasted 2 years with a doc who gave me only one antibiotic the entire time. What a mistake.
Burrascano says you always have to take 2 different antibiotics to kill lyme in at least 2 forms. Lyme can evade any one antibiotic just by changing into a form that that antibiotic cannot kill. Being on one antibiotic at a time is called "monotherapy." Everyone on LymeNet knows that monotherapy will always fail.
So, educate yourself and then get yourself the very best lyme specialist you can afford. A lyme specialist is a doctor who treats ONLY lyme patients or his/her practice is at least half lyme patients. That is how a doctor develops enough expertise to cure a person.
Find the doctor who is getting people well. Be willing to travel. Pay for the expertise. Lyme is a very difficult to cure disease(s).
Welcome to LymeNet! We will help you here all we can.
Posts: 9931 | From Maryland | Registered: Dec 2007
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posted
Hi, My Igenix, came back barely positive for Lyme after having it for 9 years untreated... but it was my laundry list of symptoms that clinched it.
Make sure you are seeing a doctor that is REALLY familiar with patients with Chronic Lyme and uses more than just abx like Doxy.
-------------------- When you reach your "wits-end" remember this: "Peace I leave with you, my peace I give you. I do not give as the world gives. Do not let your hearts be troubled and do not be afraid." John 14:27 Posts: 397 | From Loudoun County Virginia | Registered: Mar 2007
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You need to be evaluated and treated by a Lyme-literate doctor (LLMD). Non LLMDs have no clue about this horrible disease or its complex treatment!
A LLMD is one who has treated Lyme disease and the co-infections which come with it for many years and has gotten patients well. A good one will follow Dr. B's Guidelines, the "gold standard" for Lyme treatment.
Unfortunately, LLMDs are far and few between. You need to go where they are.
Also most LLMDs do not accept insurance due to the politics surrounding this horrible disease. Read poster TF's explanation, "Why Lyme Doctors Don't Take Insurance":
Read the books written by the top LLMD, Dr. H, titled, "Why Can't I Get Better?" and his new one, "How Can I Get Better?". They are an excellent source of information.
Also read "Cure Unknown" by Pamela Weintraub. Check the local library or buy it used on Amazon.
posted
I had ample opportunities to get bit by ticks during a week-long camping trip in Iowa in the summer of 2015. I also visited my folks in Maine in the summer of 2015. My dad had Lyme, but he is symptom-free now. I never got a rash.
I may have been infected by a dog bite that drew blood in August of 2015. The dog was a mean, mangy, junkyard dog in rural Maine. The wound took a long time to heal. Soon thereafter in the Fall of 2015, I started seeing doctors for neck pain, numbness in my fingers and toes, pain radiating down my arms, and tinnitus.
Before I started Stephen Buhner’s protocol, my major symptoms were light headedness, pain in back of neck, tinnitus, numbness and pain in my fingers and toes, headaches, strange sensations in my throat, fatigue, frequent urination, lower rib pain, early awakening, frequent napping late in the day, and pneumonia-like feelings in my chest wall with no shortness of breath. I think that my major symptoms were just beginning to flare on a four-week cycle, but I am not sure. . On rare occasions, I experienced cramping in my legs, pain in the soles of my feet, and strange tingling and stabbing sensations in various locations. On one occasion, my right eyelid inexplicably drooped.
I put myself on the Buhner protocol. I also started taking supplements as recommended by Burrascano. I significantly reduced my intake of sugar. I am very fortunate that I can engage in high intensity exercise.
I have been on this program for five weeks. My major symptoms are considerably reduced and some are gone altogether. As an aside, I have noticed that floaters in my eyes increased after I started the Buhner protocol.
As of today, I will be in Maine for one week, but I was unable to arrange an appointment with a Lyme literate doctor. The doctors whom I contacted were all too busy. I also have family near Baltimore, which could be a convenient base for visiting a doctor in Maryland.
I can travel anywhere, but I have noticed that some doctors are enriching themselves treating Lyme patients. It pisses me off that there are doctors who are taking advantage of desperate people. Sorry for ranting.
Thank you your help.
[ 07-04-2017, 05:34 PM: Message edited by: goodmorning ]
Posts: 6 | From California | Registered: May 2017
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When you call for an appointment, ask if there are any cancellations or a waiting list. Patients have been able to get in sooner by doing this.
Posts: 8981 | From Illinois | Registered: May 2006
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posted
If you're in San Diego, there are also good doctors in CA. Post in seeking a doctor and someone should be able to send you a list.
If you can still workout and you are getting better on Buhner, maybe that's where you need to be right now. Progress is the key.
It sounds like whatever you have is mostly nervous system related. It could be Lyme but I would look into what you got from that dog bite. I doubt it's rabies because that would have been more acute, but maybe there's something else mangy dogs pass on. Buhners herbs can help many illnesses.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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