Posted 11/11/2016 8:04 PM (GMT 0)
Hello everybody. I've spent a lot of time over the past few months on here reading and learning. Seems like a good community of folks and a great place for support and direction which is what I'm looking for.
After some resistance I figured it was time to join and ask for your thoughts. I've gotten to dark place with all this, as many of us have but really need a push right now. Some hope! I know you aren't here to diagnose but any input would be much appreciated. Thank you!
My Story:
38 yr old Male
October 2015 I began feeling very tired and weak. Brushed it off. I've always been very busy and active with work and family. Began have neck pains and ice pick pain in back and top of head that would come and go very quickly.
Nov 2015: Notice cognitive impairment, difficult processing basic problems at work, helping kids with homework, etc. started having lower right abdominal pain, sometimes quite severe. Pressure pain in back of head like it was going to burst- not super painful though. Neck and shoulder pain became intense and so stiff I had to wear a brace for a few weeks. New pain in both hips that would come a go. Tenderness under jaw line and in arm pits. Lymph? Dizziness and lightheaded.
After an episode of head pain, I finally gave in and went to an urgent care (before this, a dr visit was very rare). Was rushed in for MRI- tumor or stroke suspected. Came back clear.
Dec 2015: after several more episodes of head pain and severe abdominal pain, my wife hauled me into ER. Imaging and head and body clear, blood work ok except slightly high liver enzymes. Also, heart rate varies, can hear pounding in head and feel throughout body. Makes ripples in bath water it beats so hard. Voice becomes very weak, but no sore throat- (My most puzzling and frustrating symptom). Neck feels tender along throat and jaw line. No visible lymph swelling.
This pain with increasing fatigue contiued off and on this Spring with a brief period of relief. The classic story- My PCP ordered a book of tests, came back normal. We have house tested for mold. Normal.
In the Spring, I thought changing my diet up a little and slowing life down might help. Dropped most processed foods, sugar, dairy. I was 280 lbs when this all started.
May 2016: In addition to previous symptoms, started feeling aches in legs and left arm. Then heaviness and weakness in legs. Occasional a muscle twitch in legs and left arm. New rib and sternum pain, often very intense.
June 2016: Back in ER after another attack. More MRI done- all clear. Still high liver enzymes and now bilirubin slightly high with something "possibly affecting red blood cells." Sent me home saying all is well. I've dealt with slightly high cholesterol over the past years so liver was always in back of mind. I don't drink or smoke. At this point I'm beyond frustrated as I've now been to several Dr.s with no answers. Up until this point I dealt with it ok but out of nowhere had a major anxiety breakdown and instant insomnia set in. No history of depression or anxiety prior to this.
Through my wife and I researching, we kept coming across Lyme as a symptom match. I live in Idaho- no Lyme here, right? Ha! So we pressed to have a Lyme test done. PCR returned negative. Well no Lyme.
July 2016: Sent to rheumatologist and neurologist. Very extensive testing at both as PCP suspects possible MS. Rheum testing clear, no inflammation or autoimmune markers, no West Nile, Hep ABC, HIV and on and on.- he tests for Lyme also, ELISA, negative, WB CDC neg but positive IGG bands 41, 58, 66. Was told no Lyme. Said EBV level very high. Neuro testing clear. EMG clear, no MS or ALS. Tested for B-12 and mag. Heavy metal 24 HR urine. All normal. Had a colonoscopy and endoscopy done. All biopsies clear. (Had gallbladder removed 2003 so Dr. wanted to be sure GI tract ok)
August 2016: Progressive weakness throughout entire body. Weight is flying off. Down to 220 lbs without trying hard. (Couldn't lose 10 lbs before all this if I tried) I take leave from work as I can no longer keep up with the physical demands. Woke up one morning with complete numbness LS body. Wife rushes me to ER. Tested, imaged for stroke. All clear, but still some slightly abnormal blood levels indicating possible infection but since I never manifested a fever throughout all this, no action taken. Was tested for some rare cancers. All clear.
Sept 2016: The WB test didn't sit well with me. Order a copy of it and began to research. Learned those are not Lyme specific bands?? So, I also learned Lyme doesn't typically travel alone so I figured a co-infection panel would rule out Lyme. By this point I learned IGenex is king. Ordered complete co-panel. Dr thought I was nuts. He had just diagnosed me with CFS and possible FM. Results come back neg for everything but IGG pos for Bartonella Henslae. Finally and answer?? Dr. didn't believe it. Called Infec. Disease pals. They told him not to trust IGenex. Said IGG only indicates past exposure, no active infection. Asked for abx to see if it would help. No go. Went to my wife's doctor who is very nice- she orders another Bart test thru Labcorp. Negative. Wasn't comfortable prescribing abx but said I should look deeper into Lyme. Away I went...
No known tick bite, but exposure. Have had them crawling on me where I live now. Lived in New England for a couple years 98-2000. Don't recall bite or sickness then. Last fall had just returned from atv trip in N Utah 3 weeks prior to onset of symptoms. The last night of trip woke up in middle of night with terrible stomach pain. This pain came and went several times during the first few months.
New symptoms at this point:
very pale to yellow skin (last blood test shows liver counts good)
poor circulation
small red pin prick blood blister spots on torso
legs and shoulders
hair loss
ringing in ears
several new eye floaters, flashes in vision, blurry vision
conjunctivitis
slight tremor that comes and goes
muscle aches and weakness- especially legs, muscle tone loss
migrating joint pain, no swelling
back pain/muscle spams painful!! come and go
bottom of foot pain, especially right foot feels like muscle is tight in arch
pins and needles in hands and feet
tmj like jaw tightness
cardio issues
shortness of breath, air hunger
shin and calf pain
severe depression/suicide thoughts ( I think most from affect of this on life/family)
numbness on LS of face, comes and goes
left arm bicep pain and weakness, aches and feels very heavy
numbness tingling in back just below both shoulder blades- moving arms aggravates
headaches
vascular burning sensation in arms and back of legs
crushing brain fog
painful urination
**I have not had any GI issues with any of this which seems very much the exception from what I've read. Just some slight constipation.
Researched LLMD and found one somewhat close. ILADS recommended. Just had first appt, waiting for follow up. Tons of tests order. ISpot Lyme neg. He put me on Biaxin 500mg 2x daily. Made it 2 weeks and stopped because of heart palpitations. Side effect? No noticeable herx or change in symptoms. I know 2 weeks isn't long enough but I read how some of you feel a change or herx immediately. Also tried cats claw and some jap knotweed. Felt nothing.
In meantime, began ozone and IV immunotherapy with ND in area who is highly recommended with great success stories. I could barely walk unassisted at this point. Saw improvement in pain and some Neuro symptoms, but not what I hoped for. Walking better now. Got really sick from symptom flare after first few treatments but nothing after that. Follow up with LLMD on Monday.
So, long story but here's where I'm hoping to get help. Should I stop searching for answers a accept this as Lyme? No one seems to be willing to say for sure- although still have follow-up Monday with LLMD. I'm concerned about lack of progress or change in symptoms with treatment.
A few symptoms have me really worried this is more than Lyme but maybe someone else can relate to these: 1)the heavy aching left arm. 2) the tingling burning spots on back under shoulder blades. 3) the weak voice.
Sorry for long post but now you know my story. Thanks for any insight and help on my search for health. Have come close to giving up on all this but I'm still in the fight, doing what I can for the wife and kiddos.
Regards