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Posted 6/16/2017 4:41 PM (GMT 0)
I battled Lyme for 6 years. I tested negative in October 2016 on Igenix test. I felt great and really thought Lyme was gone. I felt better after a few years. I continue to stay on my herbs that worked for me. My llmd said once you clear up all the bands (which i have every year on Igenix) it is gone!

So I had stress at my job, put my mom in a home, argued with family about mom, had work stress, moved in with a roommate after living alone for 15 years, and got run down. I developed a 2 week cold which was the worst cold I ever had and I wasn't sick at all the whole winter. Right after that in May I started with intense stabbing joint pains everywhere.
I got so upset and couldn't believe it could be back. I had blood work at Quest and it showed 2 positive IGG bands and one positive band IGM. I know once you have had Lyme you will test positive for IGG but NOT IGM! When each year previously I tested clear on IGM bands. I went to LLMD and got on Doxy Hyclate 2 twice a day and one Azithryomycin daily. Had CBC bloodwork and was all normal.
Its a litttle over a week and Im still having bad joint almost as bad as the intital tick bite? I did not get bit again. my pain was an 8 for 2 weeks and maybe a 6 or 7 now... but I am so disappointed as I eat and do everything right!! I also saw my holistic doc and he has a VEGA machine which registers toxicity level and said after being 0 it went to a 2 and he said usually a new tick bite it will go 5 or more?

I just don't get it? plus i just want to feel better. I keep thinking its something else..but nothing shows up but lyme. I am still waiting for the Igenix test to come back.
Any support or help would be greatly appreciated.

I thought I had this beat : ( by infra red sauna, rife machine, and many other things
Posted 6/16/2017 4:46 PM (GMT 0)
If it is the same infection, I think you will find it easier to treat as they generally are. How long were in you remission for exactly? I would not rule out a new bite either.
Posted 6/16/2017 5:09 PM (GMT 0)
Sorry to hear this seyshell. How disappointing for you.

Just stick with your treatment - and if the joint pain is lessening some...that is a good sign.

Make sure you keep treating past symptom free for several weeks.

I wouldn't rely so much on the Igenex testing...it's not meant to be used as an indicator of whether we're healed or not.

I agree with Fronton- about not ruling out another bite. Many of us don't see a bite. It could be somewhere you didn't see (back of the knee, under the hair - on the back of the neck..etc)
Posted 6/16/2017 5:11 PM (GMT 0)
First of all, I'm so very sorry, Seyshell!!! I was reinfected about 3 years ago, so I understand the frustration!!

The thing is, these tests are not reliable enough, nor sensitive enough to be able to rely on them to let us know when the bacteria are no longer active. We can test completely negative and still have an active infection - that's what happened to me as well as many others. The testing relies on antibodies being produced and the bacteria can manipulate the immune function so not to produce those antibodies by hiding itself in tissues and morphing into different forms (round body and cyst forms) to avoid the immune system detection - so a negative test means nothing.

It's more about your symptoms than test results - and that you were good for a few years is a wonderful thing!! Congratulations on that!

You know what it took for you to heal last time, so I would suggest that you start there - whatever combination of treatments healed you last time will likely have a big impact this time.

We know that stress is really bad for us, as it lowers the immune function, which allows the bacteria to come back out and start causing issues again. Do what you can to lower your stress and restart your treatments!!

Best of luck!
Posted 6/16/2017 5:13 PM (GMT 0)
It's never gone, unfortunately. But Fronton is correct, that it should be easier to treat this time.

Hang in there .... You did it once, you'll do it again.
Posted 6/16/2017 6:28 PM (GMT 0)
I am so, so, so, so sorry for your aggravation and frustration. It is a good note for all of us - these organisms, once in our bodies, well, I don't think it is possible to get rid of every single spirochete if it exists in a cyst form, or a biofilm, or hunkers down and hides however it hides to wait for the ideal condition. Ideal meaning: stress, eating crud that they like, running our bodies/minds/souls ragged. I agree, should be easier to get it under control and also agree that symptoms is the most reliable source of information, not blood work. I like to re-take this quiz... gives me a good sense of where I am... you can't tell everything from a screening tool...but it puts things in perspective. http://www.tiredoflyme.com/horowitz-lyme-msids-questionnaire.html We can also learn from the setbacks and be diligent about managing stress, doing our inner work, eating well and so on. HANG IN THERE!
Posted 6/16/2017 6:56 PM (GMT 0)
Can't thank you guys enough ! My CBC all came back normal! However my bp is 100/52? It's usually low 110/65. No one seems concerned just another odd symptom! You guys are the best!! I take so many years things too help my immune system and felt the laktoferrin really helped!
But I ran myself down and felt good like I can do soo much now but the stress of moving, moms dementia, arguing with my sister, job crap all became too much!! Thank so much you guys .
I asked my LL M.D. if I should stop the cucumin due to low blood pressure but he said no but I think I'm gonna stop it because it's also in the Zyflamend I take.
Posted 6/16/2017 7:10 PM (GMT 0)
Take care of yourself. Stress will do us in everytime!!!!!🤤
Posted 6/16/2017 9:44 PM (GMT 0)
I'm sorry you are sick. But I am leaning towards possibly a new infection. But as the others said, it should be easier to beat this time. Hope you have a speedy and full recovery.
Posted 6/16/2017 10:08 PM (GMT 0)
seyshell - you had some trouble just over a year ago with joint pain (you posted about seeing a Rheumatologist) ...Did you end up treating at that point?

Did it resolve?
Posted 6/17/2017 12:37 AM (GMT 0)
It's frustrating having to treat again after feeling good. But, just have to believe you can start feeling good again.

I had not heard it is not as hard to treat a relapse. Have others found treating a relapse not as tough as first infection. That is new to me. Hoping that to be the case.
Posted 6/17/2017 1:36 AM (GMT 0)
I am pretty sure I too had a recent relapse even though I tested negative this time (confirmed lyme 6 years ago) and just finished up a 21 day cycle of doxy which I am so happy to be off of as it makes me itch!

I am still having some joint pain (hips/back) and fatigue but not as bad as it was by any means. I just started a liver cleanse as I feel the need to detox and am taking fish oil to see if that helps with the hip/back pain but if anyone knows of something to specifically target this hip and back pain please let me know. I am taking methylated B12 to help with fatigue.

I am not going to do anymore abx. I want to test some supplements to see what helps and a cleaner diet.

So, I feel your pain and understand your frustration! Lyme is aging me for sure-I feel like an 80 yr old some days as I can't even bend over some mornings it hurts so bad.
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