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my "lyme" story

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Lyme Disease
do I have lyme???
yes - 100.0% - 7 votes
no - 0.0% - 0 votes
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Posted 2/28/2017 4:13 PM (GMT 0)
!0 years ago I started with right sided middle back pain. Started with a Chiro and the pain moved to left sided middle back pain......Treated with the Chiro until I couldn't take it any more!!! Now left sided middle and low back pain. MRi reveled a far lateral building disk at l4_l5 s1. This would be the start of the mystery I still have today plus a ton of others..... !0 years at least 50 doctors later I still sit here in pain!!! It was last year I got a clinical diagnoses with lyme. Out of the 11 surgeons and 6 mris they all say back looks ok. 4 years ago I had a microdisectomy on l4 l5 s1 after I was in an accident and the pain was worse but no change in mri. I really don't think I needed that surgery and my problem was lyme all along.....My synths include......severe left sided middle and lower pain pain this is multiplied by 10000 when driving in a car...Feet on fire and numb especially left side. muscle twitching......right testicle pain (I know t.m.i.)!!......left facial pain.....hands and feet wake me up from falling asleep at night.....neck pain......eye twitching at times......loose bowels most of the time......bloood pressure that is extremely inconsistant(some times very big sometimes normal). hip pain.....teeth pain (have had 2 teeth pulled that I had root canals on because I couldn't stand the pain). sores on the back of my head.....calf legs and butt muscles all sore......ear gets red and hot at times......DEPRESSSION......heavy claiming sweating when its hot.....whole body throbs......breast bone pain......sometimes feet are red.......dry mouth at night.....weight gain.....I guesss what I'm wondering is do I have lyme?? Does my synths jive with anyone else?? Is lyme the whole problem??? I am no longer treat with the LLMD that I was last year but I have an appt with a new on next month.....Please. any help would be appreciated!!!!
Posted 2/28/2017 4:25 PM (GMT 0)
Hi Hannahrdog!
Welcome to our community. I'm glad you found us.

​If you haven't ​yet​, it would be helpful for you to start with reading through the thread at the top of the forum titled,"New to Lyme?...Start here!!", as it is packed full of important information, symptom lists, helpful links and pdf's, how to detox when one has these infections, information on probiotics and much more.

​ And, here's another good place to find helpful detoxing routines: ​http://www.tiredoflyme.com/detox-methods.html​​

It dies sounds like Lyme - likely with Bartonella, as well as possibly other infections.

Have you had any testing done?

While ILADS trained LLMD's are not miracle workers, they are usually the best we have. Here is the 2014 ILADS treatment guidelines to help you understand what would be good treatments:
www.ilads.org/lyme/treatment-guideline.php
Posted 2/28/2017 4:31 PM (GMT 0)
I have 4 western blot test and 2 cd57?? All neg.
Posted 2/28/2017 4:47 PM (GMT 0)
LOL - Okay, you are like many of us here! I didn't test positive until I had a full 12 months of treatment.

Does your doc treat based on clinical diagnoses? If so, did they ever consider Bartonella?
Posted 2/28/2017 4:57 PM (GMT 0)
Yes both the old one and the new one do treat on clinical diagnoses....the last on mentioned it ....i was on doxy for 4 months and i was feeling better....thanks 4 reaching out!!
Posted 2/28/2017 5:13 PM (GMT 0)
I've had a great deal of your symptoms. I am sure I have several infections, but the limited testing that was done on me only verified Rocky Mountain Spotted Fever. The testing processes are outdated, inadequate and often miss the infections because of the constantly changing forms of them.

Can't afford an LLMD and because of being infected for decades before actually getting any treatment, antibiotics weren't sufficient. Matter of fact I think they drove the Lyme into cyst form.

Anyway, I am trying some herbals.
Posted 2/28/2017 5:17 PM (GMT 0)
Doxy alone is never a good treatment for Lyme, as it encourages the bacteria to create round body forms (or "cyst form" as it's often called).

You need to add in another abx or add in some treatment herbs. If you are interested in using herbs, there are two main herbal protocols that are used - Buhner's or Cowden's, although there are others.

When is your appt next month? Beginning or end of the month? You can start detoxing and getting your diet in line (if you need to) now, that should help prepare your body for treatments.
Posted 2/28/2017 5:49 PM (GMT 0)

hannahrdog said...
muscle twitching......right testicle pain (I know t.m.i.)!!......left facial pain.....hands and feet wake me up from falling asleep at night.....neck pain......eye twitching at times.......teeth pain (have had 2 teeth pulled that I had root canals on because I couldn't stand the pain......!

Hi and welcome,

You may be dealing with multiple issues and infections.

Was your back pain gradual? Got worse slowly over time? It migrates a lot.

Your MRIs for back are they Modus type 1 or 2? Did you have any dental implant work done in your life before the pain slowly got worse? Did you recently lose any teeth that appeared to have rotted from the inside out?

I had testicle pain after a lengthy mold exposure. They called it an epidydimal cyst but I believe that is a fancy name for a mold spore. Dogs get swollen testicles if exposed to enough Alternaria mold. I would encourage you to check for mold around the house and make sure you don't have a leaky roof.

Get back to me on the other stuff.
Posted 2/28/2017 6:08 PM (GMT 0)
I have had several (5) root canals and several fillings...
Posted 2/28/2017 6:37 PM (GMT 0)
Yes the root canals could easily do this. Read the following. Ask your doctor if there is a way to diagnose if you have P. acnes infection in your back.

thebrainbank.scienceblog.com/2013/05/12/acne-bacteria-to-blame-for-back-pain/

I am self treating for this condition and am in my 2nd week. I already feel improvement.
Posted 2/28/2017 6:50 PM (GMT 0)
Thanks......i also have tailbone pain.....one of the syntoms i forgot!!
Posted 2/28/2017 7:15 PM (GMT 0)
Welcome to our community, hannahrdog!

I had tailbone pain...and it went away after several months of treatment.

You said you were negative on your WB - do you have the test results? Often - even if the test is negative, there are Positive and/or IND bands that are significant.
Posted 2/28/2017 11:00 PM (GMT 0)
I do not have the results
Posted 2/28/2017 11:19 PM (GMT 0)

hannahrdog said...
Thanks......i also have tailbone pain.....one of the syntoms i forgot!!

Do you remember ever injuring it? It seems that Lyme likes to to mess with old injury sites.

I went so far as to having the area xrayed decades after initial injury because it started flaring up again. Nothing showed up.
44 years ago I flew over my horse's head and landed squarely on my butt.
Posted 2/28/2017 11:22 PM (GMT 0)
I did fall on it years ago....did have xray no damage...

Does not hirt all the time....but when it does hurt it hurts bad!!
Posted 2/28/2017 11:24 PM (GMT 0)
Welcome hannahrdog,
Glad you joined, as you can see there is alot of support and good information here from our members.
Hoping you find your way to healing and feeling better soon. Sincerely, Jo
Posted 3/1/2017 2:35 PM (GMT 0)
Welcome hannahrdog! I am glad you found this community. I have had many of your symptoms as well. I highly recommend herbs to treat. It's life changing, for me anyway. I hope your new doctor helps.
Posted 3/1/2017 2:42 PM (GMT 0)
Hello and welcome. I can completely relate to the low back issue. That was part of how I ended up getting tested for Lyme. Today the back remains my most incapacitating symptom, and it also remains deep in the low-back.

I guess as some would say, when all of your systems have been tested/imaged/etc., and everything appears normal, yet you have all of these burdening symptoms affecting all systems...It's probably Lyme or another TBI.
Posted 3/1/2017 8:05 PM (GMT 0)
Mine is one sided middle and low back......how about ures??
Posted 3/1/2017 8:51 PM (GMT 0)

hannahrdog said...
I do not have the results

You can ask for a copy of them..
Posted 3/1/2017 8:52 PM (GMT 0)

hannahrdog said...
I did fall on it years ago....did have xray no damage...

Does not hirt all the time....but when it does hurt it hurts bad!!

mine hurt everyday...But mostly when I stood up from sitting...which is kind of strange.

If I never sat down..it wouldn't hurt.
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