Posted 6/6/2016 6:21 PM (GMT 0)
Thought to start a threat for giving others hope - that it DOES improve for some, with treatment, EVEN when you don't have access to a lyme literate Dr.
One of my employers suggested I get tested for lyme, not knowing ANYTHING about it. All I knew was that I felt I was dying. I found this haven, and it became a catalyst for right action, and 5 months later, I no longer feel like I am dying.
My GP indicated, because my blood work was negative, it couldn't be lyme, an infectious diseases Dr. thought the same, a naturopath gave me a clinical diagnosis of lyme, a Dr. holding dual degrees in Western/Chinese medicine thought it was lyme, I eventually invested in an IGEN-X test and it came back with I interpreted as a "soft positive."
Ultimately, life gave me a situation where I needed to take charge of my own destiny, research, invest in my health and bust most of my savings, and be diligent with the process.
The illness almost killed my challenging relationship of 25 years.
I was so sick, I had lost my ability to dance, and at one point, was down to being able to walk only 10 yards after treatment for a brain aneurysm (which may very well be related to lyme.)
Now, I am dancing again. I am sleeping with no sleep aides. I am out of the enormous pain that would not let me sleep. My GI tract is happy. My appetite is back. My fatigue level has improved and I no longer go to bed after my work shift. My brain is coming back. I still struggle with low mood on and off but that may not be related to the tick borne illness and a few other things... the sore throat, the dry cough, the hair loss, the dry skin, the headaches that come and go (NOTHING LIKE BEFORE), chronic pain in certain parts of my body most likely related to old dance injuries, some short memory issues.
This was me in February - one month into treatment with Buhner herbs, and a boost from the anti-biotic bactrim before going in for an aneurysm repair. The desire to not be alive was very strong in the darkest parts of the journey. One wonders why live in a body racked with so much pain and other issues.
Body issues
Have been in good health my whole life, with the exception of some accidents, and a really gnarly case of shingles when I was 29 (I think, maybe 28). I have 4 bulging discs in my cervical spine. The past few years, in the fall, I’ve gotten a nasty cold. Last season it was with a fever, body aches, bronchitis - 3 1/2 months and also had a headache that lasted 3 1/2 months. I have really driven my body hard in life pursuing my passions and holding down a job to pay the bills.
ACTIVITY: I have cut back on activity and simplified my life: day job, eat well, rest. I am taking a ceramics class and do this one night per week.
2/15/2015 Cut out Cats Claw and Chlorella to prep for procedure. Not experiencing any “herxing” and also, MOSTLY OUT OF PAIN from the pain meds, but all plugged up. Taking it easy until procedure. Can walk around 20 yards, then head hurts, so stop walking.
Chest pain/heart
was out for dinner with friend, started getting passionate about something, heart/chest pain. Eased up when I chilled out. Lasted around 45 minutes.
Aneurysm Carotid Artery
Getting this looked at this Wednesday.
Headache
Last season I had a headache that lasted 3 1/2 months. In 2015 I had a headache at least once a week, it became a daily headache in September. 5 months into the headache - although it is there - it hasn’t been as debilitating (have made some nutritional/supplement changes). It feels sometimes like something is shifting/moving in my head. I have detailed notes of the headache.
Weight Loss
I was running around 105-106, one month, down to 98 lbs. This hasn’t been intentional.
No Appetite/Nausea
The nausea has improved, but I don’t have much of an appetite, I force myself to eat when I am not hungry.
Digestion
Constipated. It feels like it hurts for things passing through my bowels, right side of body. Use a product from TJ’s when things really seem plugged up, and adding popcorn seems to help.
Tremor
mild shaking in my left hand, sometimes my right
Fatigue
Slight improvement. I run out of energy around 5:30 pm.
Sleep difficulties
In bed by 8:00 - try and stay up until
Sometimes trouble falling asleep, staying asleep, pain has been so bad at times it keeps me awake.
Extreme thirst
I have never been one to drink much H20, extremely thirsty, can’t seem to get enough liquid. Dry lips, dry inside of my lips.
Cough
That seems to come and go, and isn’t attached to any sort of cold or anything.
Losing strength
Trying my best to keep up exercises, losing strength and stamina. Not able to dance.
Winded easily
I began to notice this a year or two ago actually. Difficult to walk up hills/stairs, get winded really easily. Sometimes it feels like I am not able to take as full of a breath as I used to be able to.
Difficulty regulating temperature
Get really cold, can’t seem to get warm, get in bed to warm up. My temperature has been running 96.8-97.4 when I take it. Also get hot and itchy and sweaty that feels really different than the hot flashes I would get while going through menopause. I looked in the mirror the other day to see if my face is flushed when I am hot, and noted it is hot.
Skin
itchy on and off, different parts of body
dry, scaly skin
Dry inside of my mouth
Growth: question about a growth that was white and has turned brown, now black - just because literature says you should ask your Dr. about this.
Have noticed these tiny red dots that appear on my chest, belly.
Hair
Hair loss: head, under arm pits, legs, pubic hair (almost bald - ha ha ha!) - I want to know if this amount of hair loss is normal for post-menopausal women. Stopped monthly flow - I think 7 years ago.
Very dry hair
Muscle
muscle spasms and tightness that goes around different parts of the body.
right thigh underneath, left thigh on top and side, right calf muscle, left forearm, right forearm.
Joints
Comes and goes - bilateral shoulder pain, pain in elbows, knees, fingers. Puffy knees, wrist pain - both wrists.
Spine
Pain and cricks in mid-back, neck area, low back no pain
Flank pain
For a number of years actually, pain in my upper right abdomen that wraps around the back, and under the ribs.
Feet
Soles of feet began to ache on and off now and then. I haven’t observed this in the last month.
Balance
Vertigo, dizziness, lightheaded, woozy - comes and goes.
Fell flat on my face 2x this fall. When I was getting up from getting something from the fridge last week I had to hang on to the counter because I thought I was going to black out.
Cognitive Issues
I had four episodes of suddenly not being able to find words, when I spoke, I noticed my speech was slurred, my neck was tight, and the headache intensified. The slurring of the speech seemed to last for a day, then would clear up. I have difficulty with aphasia. Although I feel like there is some improvement, I have noticed difficulty processing information, and not being able to comprehend things as well. My short term memory is really poor. I also have thought I was writing one thing and when proving, see I substituted a different word - both typing and long hand.
Swallowing
I experience difficulty swallowing on and off
Jaw/Teeth pain
On and off - seems to be improving
Ear pain/pressure
On and off. More intense with right ear
Eyes
Increased floaters (had this checked out already) With some headaches, pain behind eyes, more strongly behind right eye.
Itching
Itchy around joints. I observed an uptick when I added Cat’s Claw - especially my knees - hot and itchy. The itching around the knees has cleared. Then it moved to my elbows.
Crawling sensation
Feels like something is crawling on my scalp, itchy.
Managing Stress
I can’t manage the type of activity I used to - I get irritated really easily, frustrated easily, and don’t have much patience, also tend to get a little weepy (which is REALLY unlike me). Both my Psychiatrist and therapist say I am not depressed.
Brain Power
Don’t have the ability to process information like I used to. Can only do so much admin work. Seems like mental exercise at times increases the headache.
Right Breast Pain
Comes and goes. Last week it felt as bad as the shingles pain I had when I had shingles. The pain seems to wrap into the ribs. Also felt some in left breast.
Frustration
There have been times when I think to myself, I can’t live in a body that is this miserable, and have seriously questioned if my physical body is crashing, and have wondered if I need to get my affairs together, or if I might not be alive for too much longer. Over the weekend, I felt a shift as if life was starting to flow back in me. I have never experienced anything like this in my life, and I’ve been through some pretty gnarly things.