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Posted 4/7/2017 8:13 PM (GMT 0)
Hello everyone,

A quick introduction before I'm called back to work. Name's Josh, I'm now 30. Over the past maybe ~10 years I've just been experiencing weird symptoms, from fatigue to feeling really tight and like my neck and shoulders need to crack, hair loss, sore muscles (forearms & calves especially), recently sinus issues, not being able to sleep well and waking up throughout the night, inability to focus, and having a terrible time with my memory. I've tried the conventional way of dealing with this through my MD, which when I even mentioned the possibility of Lyme Disease, it was met with criticism. I've dropped him and started going to a Naturopathic doctor here in Monterey, California. I've tried Chiropractic work, just thinking it would be something misaligned for some of my problems.
The neck/shoulder tightness and pain just comes back.

As far as actual tick bites go, I was bit by one in a duck pond type of area, I went home probably like 6 hrs later to shower that night, and found it in the back of my leg. I just pulled it out, I was only 15, young and dumb, didn't think anything of it. I now have 2 weird dots on both of my calves, no clue if it's related to the bite. One is smooth, the other you can actually feel the bump.

So on the 20th of March I went in for my blood test for the IGenex test, just got my results today, although my doctor appointment isn't until the 18th of this month. I don't really know what to make of it as IGenex and the CDC results were both negative. My doctor told me before doing it that just because the results come back negative, doesn't mean anything. My result is "<40", my IgM was only positive on bands "41 - ++", and "39 - I". IgG was only positive on "41 - +" and "58 - ++". Don't really know what to think now, I've been so mystified by all these ailments for so long, that I was almost hoping that this was it.

Thanks for listening, take care.
Posted 4/7/2017 8:31 PM (GMT 0)
Hi Josh - welcome to our community!

I'm glad that you were able to see a Naturopathic Dr. and get the Igenex testing done. The MD is an idiot.


So, what's really pertinent information - is you had a tick bite....and it was attached for 6 hours and then a few years later you started to have symptoms that appear to be multi-systemic.

The Igenex test - while not a positive result - is certainly showing 'enough' to back up a lyme disease diagnosis.

Band 39 is specific to lyme disease. Band 41 although not specific - is often the first band to show up in testing for lyme disease.
Although 39 was IND - it means it was NOT negative...something showed...just not 'strong' enough to be called a positive.
We like to call it a 'weak' positive.

i believe band 58 is also specific to a European strain of Lyme. (You don't have to be in Europe to get this - the strains are crossing over continents)

my suggestion is you seek out a LLMD for an evaluation...
We can help you with that...start a new thread titled: "Looking for LLMD in/near_________" and fill in the blank.

Then enable your email option (through 'My Profile') so members can send you recommendations privately. We don't post the LLMD names on here for privacy reasons.

In addition to members rec's...you can also contact ILADS for names of LLMD's in your area:

ilads.org/ilads_media/physician-referral/

Also, I may have some LLMD names as well - you can email me and I will check my list.

We encourage all new members to read through the "New to Lyme?..Start Here!" thread - it sits at the top of the page. Lots of useful information there.

Good luck!
Posted 4/7/2017 8:47 PM (GMT 0)
Hi Josh! Welcome to the community!

You will find we are a caring, knowledgeable and sympathetic group.

I'm so glad you found us!
Posted 4/7/2017 9:37 PM (GMT 0)
Welcome! Sorry you have to be here, but this is a very knowledgeable and supportive community!
Posted 4/7/2017 10:50 PM (GMT 0)
welcome sorry ...band 41 means flagella and no good bugs have tails! you would know if you had leptospirosis or syphalis ...i had many of the same syptomes as you blew them off and the als /ms like sx made it impossible to ignore .consider the dna connexions test or your own microscopy if you need further confirmation to treat ..you can see em plain as day with a normal microscope at 1000x !/www.youtube.com/watch?v=F331jqs3qaE
Posted 4/7/2017 10:59 PM (GMT 0)
Hi Josh 87 and glad you found us. Sorry to hear you are having these symptoms and I hope you begin Healing soon.
There is so much good information here from knowledgeable and experienced members. They offer great support too. So don't be afraid to post if you have more questions or just need to know someone else is out there that understands what you are going through.

Take care, Jo
Posted 4/8/2017 12:28 AM (GMT 0)
Thank you all for the warm welcome.

Girlie - Do you recommend seeking out a LLMD, even though my ND seems quite knowledgeable about it? The main reason I chose her is because she had Lyme Disease herself, and is quite understanding of it. She mentioned that depending on the results, she would still consider abx treatment. If not Lyme, my next concern was heavy metals. I'll read the stickied post more thoroughly now though that I have time. Also I will enable my mailbox. Thanks again!
Posted 4/8/2017 12:35 AM (GMT 0)

Josh87 said...
Thank you all for the warm welcome.

Girlie - Do you recommend seeking out a LLMD, even though my ND seems quite knowledgeable about it? The main reason I chose her is because she had Lyme Disease herself, and is quite understanding of it. She mentioned that depending on the results, she would still consider abx treatment. If not Lyme, my next concern was heavy metals. I'll read the stickied post more thoroughly now though that I have time. Also I will enable my mailbox. Thanks again!


If your ND is lyme literate...then that is great.

..and she most likely is if she had lyme disease herself..
Posted 4/8/2017 1:33 AM (GMT 0)
58 + came up on my IgG blood test too. Along with 31 IND. These tests are terrible for Dx. You can have multiple infections and be seronegative depending on how immunosuppressive they are or embedded in biofilms.

And Girlie where do I read about 58 band being European strain? I thought it may be Borrelia Guarani or something.
Posted 4/8/2017 1:37 AM (GMT 0)
band 58 by some experts is considered lyme specific others its not. i would go more off symptoms than any testing.
Posted 4/8/2017 1:38 AM (GMT 0)

borrelioburgdorferii said...
58 + came up on my IgG blood test too. Along with 31 IND. These tests are terrible for Dx. You can have multiple infections and be seronegative depending on how immunosuppressive they are or embedded in biofilms.

And Girlie where do I read about 58 band being European strain? I thought it may be Borrelia Guarani or something.

I will check - maybe I'm wrong...

I can't find much on it being European - except on Lyme forums.
Posted 4/8/2017 1:52 AM (GMT 0)
Interesting that the CDC includes band 58 on their 'list' when determining if someone is IGG CDC positive.

/wwwn.cdc.gov/nndss/conditions/lyme-disease/case-definition/2017/
Posted 4/8/2017 4:13 AM (GMT 0)
Josh, if you've been infected as long as your circumstances seem to suggest, it's no wonder you didn't get a huge amount of positives. But you did get enough to back your symptoms, and the fact that you had the tick(s) on you.

If your ND recognizes the fact that BB have hidden themselves away from you blood stream, it has sent signals to your white blood cells essentially shutting them off from seeing it and therefore not sending out antibodies that can react to these tests, then you are in good hands.

If you are prescribed antibiotic treatment, you will want to be on 2 or 3, starting on one then overlapping the second and possibly 3rd, or alternating them on different days of the week. Mono treatment sends the exposed bacteria into cyst form, requiring another kind of abx anyway.

There are also herbal protocols than can be used, and frankly in my opinion, since you seem to have a long time infection, you would do better with the herbals. Any treatment on someone infected that long is going to take a while to work completely. Herbs not only work to seek out the bacteria and kill it, but they are usually accompanied by herbs that can rebuild your immune system and help repair much collateral damage.


Look up Stephen H. Buhner "Healing Lyme"
Posted 4/8/2017 3:44 PM (GMT 0)

julymorning said...
Josh, if you've been infected as long as your circumstances seem to suggest, it's no wonder you didn't get a huge amount of positives. But you did get enough to back your symptoms, and the fact that you had the tick(s) on you.

If your ND recognizes the fact that BB have hidden themselves away from you blood stream, it has sent signals to your white blood cells essentially shutting them off from seeing it and therefore not sending out antibodies that can react to these tests, then you are in good hands.

If you are prescribed antibiotic treatment, you will want to be on 2 or 3, starting on one then overlapping the second and possibly 3rd, or alternating them on different days of the week. Mono treatment sends the exposed bacteria into cyst form, requiring another kind of abx anyway.

There are also herbal protocols than can be used, and frankly in my opinion, since you seem to have a long time infection, you would do better with the herbals. Any treatment on someone infected that long is going to take a while to work completely. Herbs not only work to seek out the bacteria and kill it, but they are usually accompanied by herbs that can rebuild your immune system and help repair much collateral damage.


Look up Stephen H. Buhner "Healing Lyme"

Thank you, I will look him up. I've been hearing so much about abx treatment, I wasn't sure what my doctor would recommend. I've also heard a lot about people incorporating herbs into the mix, but I'll read more about it so when it comes time for my appointment, I can mention it to my doctor and get her take on it.

That was my initial big worry was that if I had this for as long as I think it's been, anywhere between 10-15 yrs, and only now I'm treating it. I'm just praying I can get my sleep and short term memory back, those 2 things would make a world of difference in my life right now.
Posted 4/8/2017 3:57 PM (GMT 0)

Josh87 said...

julymorning said...
Josh, if you've been infected as long as your circumstances seem to suggest, it's no wonder you didn't get a huge amount of positives. But you did get enough to back your symptoms, and the fact that you had the tick(s) on you.

If your ND recognizes the fact that BB have hidden themselves away from you blood stream, it has sent signals to your white blood cells essentially shutting them off from seeing it and therefore not sending out antibodies that can react to these tests, then you are in good hands.

If you are prescribed antibiotic treatment, you will want to be on 2 or 3, starting on one then overlapping the second and possibly 3rd, or alternating them on different days of the week. Mono treatment sends the exposed bacteria into cyst form, requiring another kind of abx anyway.

There are also herbal protocols than can be used, and frankly in my opinion, since you seem to have a long time infection, you would do better with the herbals. Any treatment on someone infected that long is going to take a while to work completely. Herbs not only work to seek out the bacteria and kill it, but they are usually accompanied by herbs that can rebuild your immune system and help repair much collateral damage.


Look up Stephen H. Buhner "Healing Lyme"

Thank you, I will look him up. I've been hearing so much about abx treatment, I wasn't sure what my doctor would recommend. I've also heard a lot about people incorporating herbs into the mix, but I'll read more about it so when it comes time for my appointment, I can mention it to my doctor and get her take on it.

That was my initial big worry was that if I had this for as long as I think it's been, anywhere between 10-15 yrs, and only now I'm treating it. I'm just praying I can get my sleep and short term memory back, those 2 things would make a world of difference in my life right now.

There are many people who have it that long and do get into remission...the key is to persevere and not give up. The treatment isn't a 'quick fix' - it's going to take some time...
My advice to you is to keep reading...learning...coming here for support. We're all in this together...and will help each other along the way to better health.
Posted 4/8/2017 4:04 PM (GMT 0)

Girlie said...

borrelioburgdorferii said...
58 + came up on my IgG blood test too. Along with 31 IND. These tests are terrible for Dx. You can have multiple infections and be seronegative depending on how immunosuppressive they are or embedded in biofilms.

And Girlie where do I read about 58 band being European strain? I thought it may be Borrelia Guarani or something.

I will check - maybe I'm wrong...

I can't find much on it being European - except on Lyme forums.



Here is the site that I use to help interpret them:www.oocities.org/hotsprings/oasis/6455/western-blot.txt You can go there to find supporting Pubmed articles showing what these bands represent.

/www.ncbi.nlm.nih.gov/pubmed/9972057
Posted 4/8/2017 4:09 PM (GMT 0)
Hi Josh!
Welcome to our community! I'm glad you found us!

about your questions on hoping to heal - I was infected for 40 years before finally healing (the first time- I was reinfected) with herbs only. There are many ways that we use to heal, and once you find what works for you - you will heal as well!

Find out from your doctor what her protocol is and we can let you know if it's what is needed to heal these infections most likely! We are familiar with a lot of different approaches!
Posted 4/8/2017 6:04 PM (GMT 0)

Traveler said...
Hi Josh!
Welcome to our community! I'm glad you found us!

about your questions on hoping to heal - I was infected for 40 years before finally healing (the first time- I was reinfected) with herbs only. There are many ways that we use to heal, and once you find what works for you - you will heal as well!

Find out from your doctor what her protocol is and we can let you know if it's what is needed to heal these infections most likely! We are familiar with a lot of different approaches!

Thanks Traveler. How could you even deal with the symptoms for that long? It's driving me insane.

Once I find out what she wants me to do, I'll make a new post about treatment protocol and see what you guys think. It's nice to hear you healed after dealing with it for so long, gives a lot of people hope I'm sure.
Posted 4/8/2017 6:37 PM (GMT 0)
Well, it wasn't easy!! No one knew or could diagnose me with anything. All I knew was that I was not healthy and I kept having a lot of health issues. Since I was infected by the age of 7, I really didn't know any other kind of life though, so I learned to just "deal with it" the best ways I could find, but mostly I just learned to live around it - as maddening as it was.

Thank you for your kind words.
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