Help me make sense of this

I am in my late 20's, working a steady job, but have felt a sense of fatigue for the last 8 years or so.
Back in 2010 I was bit by a tick on my left leg. Did not even realize it was there until at least 12+ hours. I removed it in not the best way possible, part of it was still left on my leg, which I removed as well.
Went to my doctor who put me on doxycycline for 2 weeks. Tests came back negative for Lyme

Fast forward to this year and basically every year I kept feeling more drained, especially after I exercised. I also felt like a pulse or something ticking away in back of my head when I would lie down. Each time I would bend down, my head felt heavy.

4 months back I woke up from a nightmare and felt something pop in back of my head
Next morning I had blurry vision, excess sweating, chills. I thought it would go away and it never fully did. On top of this I kept getting severe headaches, especially when I would try and sleep as if the nerves would be overactive. I woke up again after a week with the feeling of lightening on my left arm and excess heart rate. In hindsight I should have gone to the ER then but I didn't. After a day walking outside felt horrible, I felt suffocated in the sun, extreme heat intolerance and strange heat rash/urticaria on my arm which would go away after a few minutes. When I would go inside with the AC I felt chills. My skin also took on a more yellow tone to it. Tingling hands/feet, Extreme fatigue, muscle wasting, perineal pain and sweating, brain fog rounded out my symptoms.
I went to a LLMD who put me on Doxy for 2 months, and since then I have been feeling 75-80% better. I kept getting rectal pain, constipation, oily skin during the course. I also had this feeling of itchiness all over my body and striae development on my upper arms.
Since then I have been tested for Lyme by my LLMD who used labcorp but tested for all the bands and all were negative. He still continued tx based on symptoms. I have been tested for many infectious diseases, have had hormones checked(still in process), checked for autoimmune conditions and everything comes back negative. My Vitamin D level is very low and thats the only common thing throughout these results. Cortisol was also high initially

Is this Lyme? Is it still worth it to send for igenix for testing? If not Lyme is it depression? I keep wondering every day about this. What are some alternative tx besides antibiotics?

Definitely sounds like Lyme, yes.

I wouldn't fall into the "is it in my head" line of thinking, if I were you. That's what I wrote it off as, in part, for the first couple years, and without a doctor's urging. I used to be one of those emo sorts. Though, looking back, my depression was never like that before. I was sad, but I was always myself, you know? I had personality. I felt at home in my own skin, even if I wasn't comfortable in it, if that makes sense. I didn't like myself, but I was myself.

Lyme makes you feel.. unlike yourself. Things aren't as they should be.

Some people's depression could very manifest in some of those ways, it's different for everybody, but not all. I feel like people try write too much of some of these symptoms off to being mental in nature. If that truly were the case, I feel like it'd be more than just chemical imbalances, but nerve damage, or something.

But, yeah, these are textbook symptoms you have.

Definitely worth it to try and get tested through iGeneX, see an LLMD/ND, if you can afford.

Alternative methods of treatment are herbs made into capsules, teas, tinctures, or essential oils. There's also a variety of supportive supplements. A lot.

There are a number of different protocols, some incorporating just whole herbs, others tinctures - Buhner's, Cowden's, Jernigan's, etc.

I would start by cleaning up your diet, working on healing up/maintaining the function of your gut through that as well as supplements like glutamine or aloe vera juice, starting detox measures, and at the very least starting some Japanese Knotweed, Cat's Claw, Andrographis, Red Root, milk thistle supplement, getting on a decent probiotic, multivitamin, etc. Others will come along with better suggestions.

They will tell you the same, start the herbs/tinctures, whatever you decide to use, low and slow - one herb/tincture at a time.

Eventually, when you feel comfortable, I personally would suggest you try some essential oils. They have worked better for me than anything else. There's a Facebook group relating to Lyme and essential oils that has a nice protocol posted. You could add a couple oils to it for a little extra killing/support. Is what I am currently working on.

Sorry, if this post is a mess. I had wanted to give you more information. My brain's stepping out tho.

Sam, welcome to our forum! I am so glad you have joined us and so sorry you have Lyme.

The symptoms you have are so typical of Lyme. Don't doubt yourself. You know your body and you know that it is not in your head! Lyme is a tough disease to test. It relies on antibodies and Lyme spirochete are capable of changing forms so that the body can't create antibodies needed, which means that tests can sometimes come up negative even though you have Lyme. (I hope that made sense!)

Even though some of your symptoms are reduced, it is not wise to stop treatment until you are two months beyond your symptoms. If you are not comfortable with continuing antibiotics than I would look at herbal remedies. There are many good ones out there. I am having some success with Buhner's protocol.

Have you read the first post in this forum "New to Lyme-start here"? It has a lot of great information for those of us dealing with Lyme.

Please stop in with any and all questions. There are so many here who want to help and have acquired the knowledge that many Drs. don't have.

Wishing you the best.

You can get your JK from these sites:

- Woodland Essence (tinctures)
www.woodlandessence.com

Sage Woman Herbs (tincture)

www.sagewomanherbs.com

Green Dragon Botanicals (capsules)

greendragonbotanicals.com

They are all recommended by Buhner.

Others will most likely post a few more sources.

Yes, you can start with CC and add in the JK in a few weeks.

Make sure with each herb, you start very low...and raise it slowly...every few days.

I have the shivers...even when I'm not stressing...or I'm not aware I'm stressed. And, they ramp up sometimes when I'm stressed out...then it brings on my nerve pain.

It never happened prior to lyme...

For me, the shivers are worse when I'm cold...

I know how you feel, Sam.

My father was in a care facility when I got sick...and had to cut back on my visits - daily visits were just too much for me.
A very difficult time.

I DID cry everyday...for many months...

Hang in there...it gets better. Come here for support - and ask any questions you have.

One day at a time....

Sam12 you are getting some real support already from the forum,so I just wanted to stop by to say, Welcome!

Does anyone get any dermatological issues with this. My skin has taken a yellow glow, things leave imprints very easily when are up against my skin, u get strange welts that come and go. Also my fingers, the joints seem somehow bigger. Also face feels very hot if I am doing some activity.

On top of this it was one of cousins birthday today, I of course never feel like going out anymore but dragged myself to go as she always asks about me. She is very nice but I feel like I am being judged by them at times when they enquire about my health and I let them know what's happening.

Post Edited (sam12) : 8/19/2016 8:43:15 PM (GMT-6)

I definitely got skin issues. You know when you spend too much time in the water and your fingers get those lines ..... I got those and was not in the water.

I would sleep and in the morning those sheet lines would stay on my body for hours!

I can't carry a bag of groceries on my arm because my arm will go dead feeling. I end up switching arms..... Annoying.

I always feel like I have a hot face, arms, stomach and feet! I have a gel packet in the freezer for those occasions.

But last winter, I could not get my feet warm. I wore wool socks 24/7 and my feet were still cold.....

Lyme sucks for symptoms. Never the same and always a new experience to live.

Girlie and PeteZa, yes I especially have that type of skin on the back of my hands as well, specifically the knuckle area. When I wake up sometimes those marks are on my face too. I get so freaked out with this. I also get a lot of itching as well.

I don't know if this is lyme but my fingers, specifically my knuckles have expanded. It seems there is a curve now when I trace the line from top of my finger to bottom, the portion at the knuckle area curves outwards and I do feel pain/irritation at times. Same thing on my toes. Has anyone else experienced this?

no swelling though there is slight redness, just that area appears expanded outwards. It feels uncomfortable and itchy at times.

I also seem to be getting more pimples, even on face and scalp.

Welcome sam...you can see lyme and stain for bartonella with a microscope ...there is a new urin test from dna connexion in co spgs if you want confirmation ...no doc needed ...also parasites is part of puzzle ..regular gi doc and id doc will be of no help unless you are in a endemic and even then ...

refergerated is good need to be 100bil with bifidus .some swear by vsl 3 if you can get ins to cover also bertonella sounds probable. ..

there is rife ,bvt ,iv silver ,h202 , cowden ,buhner ,ozone ,mhbot ,nosodes ,and others some all...andrographis ,houttynia and smilax have been as good as rocephin and venom ..
Watch under our skin ,under the 8 ball ,and justin and christie.ca ...read mitchells rand on mdjunction and all of lymenet flash...