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Posted 6/1/2016 9:16 PM (GMT -5)
Hello and thank you for reading. I am new to the site and wanted to ask someone who knows more about this than me. I live in a wooded area and enjoy the outdoors . I have been bitten at least 3 times in the last 6 years but have caught the tick within 24 hours or so. I never developed a rash although the last 6 months I have been emitting some symptoms that have me concerned. I had my pdoc run a western blot and it came back negative on everything except 41 IGM. My doctor just said it was negative and didn't have anything else to say. I asked for my results and when I looked I was also low in vitamins d and b1. I have been having some severe depression and anxiety that is really out of character for me. I looked at what band 41 meant and I read that my body is trying to fight flagellum or spirochetes. They are trying to throw antidepressants at me and I feel like it's something more. Does anyone have any advice as to how I should proceed?? confused
Posted 6/1/2016 9:27 PM (GMT -5)
Crispy, first of all welcome. Glad you found us.

I assume that you are USA and it was Lab Corp or Quest. If that is the lab, then you are not alone in your negative lyme result. I flunked it too and there are those that flunked it more than once.

The lab that we generally use for lyme testing is Igenex. If you go to a lyme literate medical doctor he will probably test you there. But if you want you can contact them and request a test kit for the Western Blot IGM and IGG. It will run you about $210. You will need a doc to sign off on the test for the lab to do a draw.

We do ask that our new members read our first thread, New To Lyme? ..... Start Here. It is full of information and will be super helpful to you.

Any other questions, please feel free to ask. This is how we all started here.
Posted 6/1/2016 9:51 PM (GMT -5)
Thanks for the quick reply! I am in the usa, massachusetts. I keep hearing of Igenex and I will do what I can so I can get a proper test. I am trying to do what I can with my insurance as I am pretty broke at the moment. I have been out of work for the last few months because of this so that makes it hard. I am grateful that this website is here and there are people who know what is going on its like a big mess to think that our healthcare system is leaving so many people suffering. If I ever get out of this I will spend a lot of energy trying to help other people get help from this dreadful disease. I just want to ask my doctor to run tests for other infections as well because if I am positive on band 41 then it could be other infections. I am doing research and I also have some foraged reishi and chaga that grows around here so I am also looking into natural medicines to help heal this since if it is advanced I'm not sure that antibiotics would even clear me out. I really hope to find some relief soon as it has been a tough time dealing with the depression, eye floaters, brain zaps, terrible sweats if I take a nap during the day, the anxiety and panic, bordering on paranoia at times. It has just taken the wind out of my sails I have always been so positive and now life just feels so hard. Thanks for reading!
Posted 6/1/2016 10:38 PM (GMT -5)
You can forget the tests and just do herbs. If you are convinced that you have lyme, why not go for it? If you do herbs and gently, they won't hurt you.

Your reishi and chaga are great starts.

I would suggest that you eat as organic as you can afford. Drink lots of water for detoxing and if you can add a little lemon to it. You might want to drink the lemon water through a straw to avoid hurting the enamel on your teeth. If you can, get a glass of water and drop a splash of apple cider vinegar (organic please) in it and get used to that. It is awesome detoxing method.

The first herb I would start with is Japanese Knotweed - Polygonum Cuspidatum - that is the Latin name and that is what you want. Not Resveratrol. Make sure it says the Poly name and see if it is organic.

To take an herb (tincture) you put a drop in a glass and add water. Swirl and chug it down. You do 1 drop for a couple of days 1 time a day and see how you do. Did you get a rash? Are you sick? If you handle it for a couple of days then go to 1 drop 3 times a day.

We call this Low and Slow. There is more but just wanted to give you an example of how to start.
Posted 6/1/2016 11:17 PM (GMT -5)
Hi crispysonsofa - welcome to our community!

PeteZa has given you some good information - the Igenex Lab is the best lab to test for Lyme disease. There are a lot of tests on the lab req...but the best for your money is the Lyme WB IgM and IgG.

Because of the fact that you were bitten by ticks at least three times along with the symptoms you now have...my hunch is you have Lyme disease.
I think you should find a LLMD near you and schedule an appointment for an evaluation.

It often takes several weeks to get in to see one...so you could do the test while waiting for the appt. Then, have your results with you at your first appt.
The Igenex test takes about 3 weeks for the results.

If you need help finding a LLMD, you could start a new thread titled: "Looking for LLMD in/near____" and fill in the blank with the nearest larger city near you.
Posted 6/1/2016 11:21 PM (GMT -5)
Band 41 is often seen in people with LD.

Vitamin D is often low in people with LD.


I also wanted to mention - that whenever we get a tick bite - it is recommended that antibiotics be taken prophylactically - according to the ILADS (International Lyme and Associated Diseases Society) Lyme Treatment Guidelines.
Unfortunately it is not widely known.
Posted 6/2/2016 10:02 AM (GMT -5)
Thank you all for the responses, I used the forum sticky and found a LLMD that isn't too far away and will try to see if they take my insurance. I think my pdoc would have to recommend me to them but I'm not sure. Do you think that asking my current doc why I tested positive on band 41 and have him rule out other infections is a good place to start? I'm pretty sure I don't have syphilis but I guess you never know. It's frustrating to have to check your own results and do the research to find out what is going on with you. It's like why wouldn't my doctor see a red flag there and dig deeper? All of this is deflating and even with proper diagnosis it seems that a lot of people are having to take treatment into their own hands. I just want my life back and will fight as hard as I can to get there. I'm glad that I found this forum it's been more help than my Dr at this point so I'm losing faith in our Healthcare at large.

Does band 41 mean that you definitely have been making antibodies for flagellum? Is it possible that something harmless could react with this band? I don't want to sound like I'm undermining my doctor when I speak to him but I do want to make sure that he is being very thorough and not just trying to throw a depression diagnosis at me.
Posted 6/2/2016 10:24 AM (GMT -5)
Doctors are very hesitant to say someone has lyme disease unless they have been trained in lyme disease. They can get in trouble for not going by the ILADS guidelines for treatment and they more than likely would have to read and study up on that to do so.

So, as far as you doctor sees, you do not have lyme according to the CDC guidelines and that is that!

Now if you seek out a lyme literate medical doctor or naturopath, they are schooled in lyme and they know that a lyme disease diagnosis is not only determined by blood work, but my patient history and a clinical exam. Meaning your blood, tick bites and rashes and aches and pains will all be factors in your diagnosis.

By looking at what others have done - going back to their doctor and "trying to get a diagnosis" after the doctor has said "you tested negative" is very futile. I am one of those people also. My MD is awesome, but knows nothing about lyme. I use him for blood tests and regular exams because of insurance, but for lyme I go to someone that REALLY knows lyme.

Hope this helps.
Posted 6/2/2016 10:29 AM (GMT -5)
Hi Crispy!
Welcome to our community! I'm so glad you found us.

I'm not sure when it happened, but doctors would much rather just dole out meds like you saw than to dig deeper. I was infected as a young child and although I did finally heal (on my own, 40 yrs later), I've been reinfected, so I'm back in treatment again. Not one doctor, other than a LLMD would even consider looking into Lyme disease.

Yes, band 41 means you are making antibodies to a spirochete flagellum - but the question is which one? there are several other spirochetes that can do this. Lyme, Syphilis, Pintas, Yaws, Relapsing Fever....

Your doctor is just sticking with their colleagues in not recognizing these infections as it's a huge political hot bed. I don't blame them for not wanting to be in that mess, but they are allowing their patients to go untreated with an infection that will only get worse and take more and more of their life from them.

You may want to look into these links to see if they are something you wish to present to your doc, but I would suggest you take a look at your health insurance policy and find out for sure if you need a referral for a specialist or not. Some insurance companies won't cover Lyme treatment even if you do get a referral, so do be careful how you handle this.

www.ilads.org/lyme/about%3Cstrong%3E%3C/strong%3E-lyme.php

This one mentions depression as one of the symptoms of Lyme: www.ilads.org/lyme/lyme-brochure-psych-2014.pdf - please note that this is a Pdf

Post Edited By Moderator (Girlie) : 6/2/2016 10:02:02 AM (GMT-6)

Posted 6/2/2016 10:51 AM (GMT -5)
So asking him what a positive band 41 means will most likely end up in him getting pissed off, I guess I was hopeful if I brought this up to him he would rule out other infections. It seems like a huge red flag to me that my body making antibodies for spirochetes that something is going on with my symptoms. I hope my insurance will cover my visit to a LLMD. This is like the twilight zone!
Posted 6/2/2016 10:59 AM (GMT -5)
You got that right. It is the twilight zone. You will have to call around to see if a lyme literate doc will accept insurance. I called one and they said they do not take insurance but they did say I could submit the charges to my insurance and see if they accepted it. It was a wait and see type thing. I got lucky and my ins. paid 80%. That was a win in my book!
Posted 6/2/2016 11:01 AM (GMT -5)
Oh and he may not get pissed off, but I wonder if he really knows? So you may be making it obvious to him that he lacks information on the testing and what it means. Some doctors do not take well to us pointing out to them that they do not know it all.

Tread lightly.
Posted 6/2/2016 11:04 AM (GMT -5)
Traveler - the link came up 404 Error on your first one. I tried to fix it...but it didn't work (you will see I edited your post - for that reason)
Posted 6/2/2016 11:08 AM (GMT -5)

Girlie said...
Traveler - the link came up 404 Error on your first one. I tried to fix it...but it didn't work (you will see I edited your post - for that reason)

Thanks Girlie, but they will not allow that link to be used on forums, so we will have to just paste the link and those that wish to see it will have to copy and paste it.

http://www.ilads.org/lyme/about-lyme.php
Posted 6/2/2016 11:17 AM (GMT -5)
okay - thanks, Traveler.
Posted 6/3/2016 1:54 PM (GMT -5)
I actually love vinegar maybe that's my body telling me I need more. I am one of those people who drinks the juice left from hot peppers or pickles. Just typing this makes me want to drink some. Thanks for the links I think I am going to ditch my doc he seems to only be 'ill-literate' in trying to fix the symptoms rather than the problem. This forum is really helpful and active it is nice to connect with some people who are also suffering. Band 41 seems pretty obvious that if you are positive for it then Lyme is a definite possibility if you are expressing other symptoms. The other diseases that could react with this band don't seem plausible.
Posted 6/3/2016 4:37 PM (GMT -5)
I was told by a doctor that everyone typically test positive to band 41. I don't know if that is true or not.
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