You most likely have Lyme. I believe bands 23 and 58 are specific to Lyme.
Your problem will be getting your "LLMD" to treat with a "negative" test.
From Dr C .. explained in the above link:
"In my clinical experience, if a patient has symptoms suspicious for borreliosis, and has one or more of the following bands, there is a very high probability the patient has borreliosis.
These bands are 18, 22, 23-25, 28, 30, 31, 34, 37, 39, 41, 83, and 93.
[---- from DR C's update from 2005 --- ----The significant antibodies, in my opinion, are the 18, 23-25, 28, 30, 31, 34, 39, 58, 66 and 93.----]"
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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Bartenderbonnie
Frequent Contributor (1K+ posts)
Member # 49177
posted
Band 23 is highly specific for Lyme. There is NO other way it could have gotten in your body. You have been exposed to the borrelia bacteria.
Just because you test negative according the notoriously flawed and outdated CDC guideline, does not mean you do not have Lyme.
You do not have to have a positive CDC blot to be treated for Lyme disease.
A good LLMD will diagnosis based on clinical symptoms ( the symptoms you present at intial appointment) along with the specific bands that are reactive. A LLMD doesn't diagnosis on how many but on the importance of each specific band. Band 23 is IMPORTANT.
Main-stream doctors will not help you. You need an ILADS trained LLMD. They are trained in Tick Borne Infections.
Your western blot provided a clue. . . I would follow up on it. Time to get healthy. 💚
posted
But the 23 band showed up as acute. I’ve had all this since childhood. Wouldn’t it be chronic?
False positive maybe?
-------------------- Ishandra. Posts: 55 | From Texas | Registered: Aug 2018
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map1131
Frequent Contributor (5K+ posts)
Member # 2022
posted
No such thing as a false positive with this illness.
Read the explanation again that Lymetoo posted. IgM positive bands when it comes to Lyme is actually the most chronic and most ill patients because it's been present for quite some time.
Pam
-------------------- "Never, never, never, never, never give up" Winston Churchill Posts: 6478 | From Louisville, Ky | Registered: Jan 2002
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Bartenderbonnie
Frequent Contributor (1K+ posts)
Member # 49177
posted
ishandraa,
You have now entered the Lyme 101 education. It is important that you reread the links posted above. You must take each paragraph slowly. It is important that you comprehend every word. Look up each word you do not understand. Learn how to pronounce terminology, meds, procedures, ect. An educated Lyme patient is what is needed to well.
"IgM antibodies in Lyme disease can occur at ANY point in the infection, early or late. IgM antibody can and will appear throughout infection. This is because the borreilia spiroketes can travel in and out of the blood stream into tissues, joints, organs, brain, to hide and avoid hostile environments. When it reemerges into the bloodstream, the immune system will again mount an immune antibody response."
"Escaping the immune system is very important for its survival. The absence of Lyme antibodies does not mean the absence of infection. Borrelia hide in areas that are poorly protected by the immune system (brain), poor area of circulation (tendons), or where the bateria can lay metabolically inactive for lengths of time and resist antibiotic penetration ( the skin and the brain). Western blot is therefore unreliable if the infection has moved beyond the bloodstream."
Also, a patient may test positive for Lyme disease, yet be asymptomatic. Treatment may not be advised or needed. Therefore, you must treat the patient with the symptoms and not the test results.
Posts: 2977 | From Florida | Registered: Nov 2016
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posted
I am honestly very overwhelmed at all the information that I have been reading the past month or so. I try and read every link, but everything seems out of my range of knowledge. I get overwhelmed easy I guess.
I actually feel pretty good at the moment. Only thing is my neuropathy and back pain. My headaches are still a constant, but less intense.
I did end up taking some prednisone very recently (before getting my results) because I was unable to even walk and had severe shooting stabbing nerve pain in my back, hips and legs due to my back issues. I know that was reckless, but it was truly unbearable. I honestly thought the test would come back negative as it always had before.
I am hoping that this doesn't cause a return of my other symptoms.
I am hoping that in time all the articles I read will start to make more sense to me.
Thanks for all the help guys, I truly feel like without y'all helping me that I would be so lost.
-------------------- Ishandra. Posts: 55 | From Texas | Registered: Aug 2018
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"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."
Dr C of MO
-----
Be sure to read the link so you will understand.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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quote:Originally posted by Lymetoo: I thought you had the Igenex test?? If not, then hold onto your hat.
I also thought your doctor was a female. You found a male Dr in the area where you live?
No the test I had done was the Quest blot test. That is why I am pretty dang sure I have Lyme. This was my 2nd test, the first didn't test the bands.
I asked specifically to have the second one done. I was referred to a Neurologist because of my nerve pain and he had a whole spill of test done including that. So basically my Neurologist is helping me at this so far.
I was told about a female LLMD in my area, but I was told she only treats people with positive test results. I decided to hold off before making an appointment with her. At least until all my tests I had already had done came back.
^^ haha, nvm we just discussed this.
-------------------- Ishandra. Posts: 55 | From Texas | Registered: Aug 2018
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posted
Yeah, it's unusual for Quest to pick up much of ANYTHING.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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Bartenderbonnie
Frequent Contributor (1K+ posts)
Member # 49177
posted
Wow, so many red flags WRONG in your last 2 posts.
1. You state you want to talk to your doctor about starting antibiotics to bring out the Lyme. Why would he give you antibiotics? You are CDC negative for Lyme. No main-stream doctor will give you antibiotics unless it's a positive CDC guideline.
2. You state you will then get a Igenex test, hopefully the test will show Lyme and hopefully a LLMD will see you. An ILADS trained Doctor would see you regardless.
3, You state you heard your area's LLMD will only treat Lyme disease with a positive test only. A ILADS trained Doctor DOES NOT rely on positive testing only. Symptoms, environment, past/present tick exposure, elimination of other maladies, and immune symptoms markers are considered.
4. You state you want to have Igenex test THEN see a LLMD. A ILADS LLMD often orders their own protocol of tests. Proven tests that they find successful in their practice. You are a neebie that is bound to make mistakes, an educated ILADS LLMD has the experience and knowledge to avoid this.
5. You do not need a positive test to be treated for Lyme disease by an ILADS LLMD. Make an appointment ASAP, because many Lyme doctors have a lengthy waiting list. It is an epidemic !
6. Go back to your original 'seeking doctor' post. I gave you links to Global Lyme Alliance and ILADS to request a LLMD.
Git Ur Done Texas
Posts: 2977 | From Florida | Registered: Nov 2016
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posted
See the thing is, I don't have the $400 to drop on the initial visit to see the LLmd. Especially since I haven't heard much about her. Is she even worth my time/ money. Should I gamble once again and probably end up with nothing.
and even hen I would most likely have to pay to have the all the same tests done AGAIN. Dr's all want their own tests done. As if doing the same test for the 5th or 6th time would warrant a different result.
I would rather try and work with my Neurologist (who is amazing) and get a referral from him, rather than just making an appointment and waiting. It helps with my insurance also. I believe I was told that the "LLMD Dr" does take insurance, but how much would that even cover considering I've already had the Lyme tests done twice before.
I am hoping that I can get the Igenex test before. I'd rather not waste my time and money waiting months to see her and then her turning me away because she orders the same crap. Does she even go by Igenex?! See idk this.
And trust me I have looked at every link imaginable. It's overwhelming and I'm just doing what I can atm. I'm new to this and trying to take in every bit of information is mentally exhausting, especially when I don't understand the half of it.
I see that I have 2 viable options in my area as far as a LLMD, or so they claim to be at least familiar with Lyme. I'm not sure exactly how great they are. What I do is they are expensive and I have 2 littles to think about.
My neurologist is the Dr that has gotten me even close to a diagnosis. He is really great. He is trying to see why I have peripheral neuropathy. And he suspects it's probably from the lyme. I go see him in 5 days. I am planning on talking about all this with him and see what he says and what I should do. I'm just trying to weigh my options before making any decisions.
I am already drowning in medical bills and I can't even imagine what it will be after all this.
So yes, I would like to see if I can get the Igenex test as soon as I can, not sure when that will be. Mostly just for myself. To see the real extent of my problem. Gambling on which Dr will be able to help is where I'm at unfortunately.
posted
Bonnie... Texas has FEW options and the ones available are often not worth the time and trouble.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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Bartenderbonnie
Frequent Contributor (1K+ posts)
Member # 49177
posted
I agree Lymetoo.
If they are not worth the time, trouble, and money, then why waste your time, trouble, and money seeing them ?
Posts: 2977 | From Florida | Registered: Nov 2016
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Bartenderbonnie
Frequent Contributor (1K+ posts)
Member # 49177
posted
This is the Texas Lyme disease association link. Fill it out and e-mail. Hopefully they can come up with some leads for you. Be sure to emphasize that you really need a LLMD that accepts insurance.
Surely by now, the ILADS and Global Lyme Alliance doctor referral programs have gotten back to you. Have you expanded your search to maybe surrounding states ? Do you have family or friends in a less-hostile state for Lyme treatment and stay with them for a few days.
Some LLMD's require a patient to travel and see them every 3 months, and the in-between months they have you Skype them.
Also you can join the Texas Lyme and Tick Borne Diseases Facebook to get first-hand patient reviews on treatment in your state, here;
posted
I looked at my emails and I see that Dr. S* is an option, closest in my area. However, it just says she specializes in Fibro. Nothing about Lyme as far as the email.
I could travel a few hours west and try another dr. I will see what my Dr here says on Monday, hoping he knows of someone he would recommend.
Still in the process of researching all my options.
-------------------- Ishandra. Posts: 55 | From Texas | Registered: Aug 2018
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Bartenderbonnie
Frequent Contributor (1K+ posts)
Member # 49177
posted
The doctor you mentioned is not ILADS trained. If she were, you would not be able to post her name publically, as per Lymenet rules. ( Lymenet protects LLMD's due to hostile political states).
Whatever doctor you call, you must ask if they are ILADS trained. There is a protocol that they follow, such as this;
Read this, reread this, then copy and save to refer back to. It is the most referenced protocol on how to treat TBI's. Many LLMD's have tweeked and added to it, but the basics are still followed with sucess.
I so want you to get well. You need a doctor willing to step up to the plate. An ILADS LLMD can get your life back.
Posts: 2977 | From Florida | Registered: Nov 2016
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Read this, reread this, then copy and save to refer back to. It is the most referenced protocol on how to treat TBI's. Many LLMD's have tweeked and added to it, but the basics are still followed with sucess. [/QB]
I actually printed the entire protocol when you gave me the link the other day. I went through and highlighted all the most important parts. I plan to speak to my Dr about what I need to happen and if he can't help me then I want to see if he knows anyone who can help.
I have been looking into a Dr who is about 4 hours away from me. Luckily I have a friend who lives in that area and I hopefully will just make a trip of it.
-------------------- Ishandra. Posts: 55 | From Texas | Registered: Aug 2018
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Talking to the nurse practitioner today to get my test results. Firstly, he gave me so much attitude when I started asking questions about him just dismissing the Lyme test. I got 3 out the 5 bands. 23, 41 and 58. That to me would raise a flag, but nope. CDC says I’m negative.
I was hoping today would go better. He even asked what medical degree/ background I had in medicine when I asked to have the Igenex western blot test done. I didn’t think Quest was the most efficient lab when dealing with tick borne illnesses. He didn’t even know what igenex was. Made me write it down for him.
Basically I have peripheral neuropathy and nerve damage in my lower back and hands/ feet. I have muscle atrophy in my palms due to nerve damage. I have scoliosis and carpel tunnel. I knew all this already.
Gave me more meds to take and rushed me out the door.
I don’t need a bandaid. I need to know the source of all my symptoms. This NP is a total idiot imo. I asked to see my Dr next time and to not deal with him anymore.
This doesn’t even include all my symptoms that have nothing to do with Neurology. He didn’t even care about putting the puzzle together.
Incredibly disappointed.
-------------------- Ishandra. Posts: 55 | From Texas | Registered: Aug 2018
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Bartenderbonnie
Frequent Contributor (1K+ posts)
Member # 49177
posted
Sorry you had to experience this, but it is the norm, not the exception when it comes to mainstream MD's.
There are millions of 'nuts' worldwide and we're not going take this human rights travesty any longer. There is hope on the horizon.
Late last year, Lyme patients filed suit in the U.S. District Court for the Eastern District of Texas Texarkana Division. 11/10/2017
Lyme Patients demand jury trial against Defendants;
Infectious Disease Society of America. I.D.S.A. Blue Cross and Blue Shield Anthem Inc Aetna Cigna Kaiser United Healthcare I.D.S.A. Panelists; Dr Gary Worser Dr Raymond Dattuyler Dr Eugene Shapiro Dr John Halperin Dr Robert Nadelman Dr Leonard Sigal Dr Allen Steere
The basis of the suit is there is an alleged current and on-going conspiracy against Lyme Patients that prevents them from being adequately tested, properly diagnosised, and denied insurance coverage, which forces them to pay vast sums of money in out-of-pocket expenses. This suit also addresses that the current climate within the Defendants camp discriminates againest LLMD's.
I read this lawsuit often, as it ALWAYS puts a smile on my face. . . Enjoy. Posts: 2977 | From Florida | Registered: Nov 2016
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posted
Thanks I will definitely be looking into it. I wish I had been able to actually speak the Dr, not just the NP.
He hadn't even looked at my records until he stepped into the room.
-------------------- Ishandra. Posts: 55 | From Texas | Registered: Aug 2018
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kidsgotlyme
Frequent Contributor (1K+ posts)
Member # 23691
posted
Ishandra, I'm so sorry that you had that experience with the NP, but believe us when we say it has probably happened to all of us at least once and I'm sure the MD wouldn't have been much better.
PLEASE, do yourself a favor and go to nearest LLMD. If Dr. C is the closet, then go to him. It will be well worth your money.
I can't even tell you how much money we spent getting my DD well. It was a lot and she is now happily married and living life. It was a life long struggle of illness for her and we couldn't be happier that we found someone to give her her life back.
I am now about to start treatment and my husband didn't bat an eye when I told him I wanted to go to the same LLMD that my DD went to. One LLMD is not like the other and I totally and completely trust the last one we took my DD to. We saw four total during her five years of treatment and each one got her to a certain level and then her progress would stop.
We didn't think we would ever be able to afford treatment for DD, but somehow, some way, we made it work. My husband worked sometimes three jobs at a time.
-------------------- symptoms since 1993 that I can remember. 9/2018 diagnosed with Borellia, Babesia Duncani, and Bartonella Hensalae thru DNA Connections. Posts: 1470 | From Tennessee | Registered: Dec 2009
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posted
I am new to this. I have my test results from 2015. I positive VIsE-1 1.45. Band IgM Ab 23 kDa Band reactive. 12/28/15 (A) REACTIVE 01/27/15 (A) REACTIVE is this a positive result? I have muscle aches,joint aches,tendons,back aches,swollen knees. Been to a rheumatologist said I had fibromailgia. Please help
-------------------- Phyllis June Posts: 1 | From PA | Registered: Oct 2018
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