Posted 7/13/2021 1:47 AM (GMT 0)
Hello
I first thank you for reading my novel/post and providing feedback. I appreciate your time. I'll do my best to be brief - but this has been a long road and I'm still working on gaining some clarity on what might actually be going on with me. I wanted to first share a rough timeline and symptom recap and then pose some questions. I hope that is OK.
Basic Info:
34 year old male. Live in Nebraska. Married with a 1 year old daughter. Suffered from chronic insomnia for 17 years. Have been on a dozen or so meds over that time period for sleep. I do not remember being bitten by a tick and I do not recall a rash. Prior to the below symptom onset I was out hunting with a friend in Mid-Late May 2020 at my in-laws farm. Tall grass, lots of deer and other wildlife, spent most of our time near a small creek.
Symptom Onset: Late July 2020
Initial Symptoms:
Extreme Fatigue (I could barely walk)
Heavy legs and arms (fell down trying to do a jumping jack)
Numbness and tingling in limbs - frequently awakening with numb arms or hands
Headaches
I initially went to my PCP. They ran basic bloodwork and everything came back normal. I was referred to a local neurologist. He performed a physical exam and indicated it was 'normal' and suggested I was suffering from anxiety. He did agree to order an MRI of the brain with and without contrast. Results were unremarkable. This was completed August 2020. Over the next month or so I began to regain strength and stamina. I did, however, notice I began to react quite differently to alcohol. I found it difficult to drink even 1 beer without getting a headache, tired, and dizzy.
Late August 2020:
My insomnia was really getting to me. I was also having heart palpitations. I ended up in the ER one night after my heart rate shot up to 155 bpm while sitting. Ran more bloodwork, 2 view chest x-ray, EKGs, everything came back normal. Sent me home and told me to come back in if it happens again. My PCP orders a holter monitor that shows 1st degree AV block as well as Mobitz Type I (Wenckebach) 2nd degree AV block. No treatment is recommended.
September 2020:
I began dealing with gastrointestinal issues. Stomach pain, nausea, bloating, and an unusual change in bowel habits. I tried using OTC stuff but it didn't help. I was referred to a GI Doc who suggested a colonoscopy and endoscopy. This was completed with no abnormal findings. Abdominal issues continue so a CT of the abdomen and pelvis is ordered. Only finding are some slightly enlarged lymph nodes in abdomen that radiologist believes to be reactive.
October - November 2020:
I felt better for a time - late September to early October. By mid-late October fatigue returns. I begin to notice occassional muscle twitches/jerks. I continue to struggle with sleep a great deal. While some of my initial symptoms recede I begin dealing with regular night sweats. Unlike anything I have ever experienced. These are drenching night sweats (like the kind where you have to get up and change the sheets or put a towel down). They happen regularly. I return to PCP who is concerned about Lymphoma. I am referred to local Hematologist who performs additional labs/physical exam. He indicates he does not feel anything concerning and does not feel the CT shows anything pathological but recommends a follow-up scan in 3 months.
November 2020 - January 2021:
Symptoms come and go. For the most part the night sweats go away as do the twitches/jerks. I regain most of my strength/stamina and return to my normal workout routine. In December 2020 PCP runs tests for Lyme (ELISA), Rocky Mountain Spotted Fever, West Nile, and a few others. Everything comes back negative. I see a Physiatrist in January for the continued numbness/tingling. He performs NCS on upper body. Finds carpal tunnel in right arm/hand but nothing else of great concern. This was surprising as most of the numbness occurs in my left hand (which continues to this day - left hand often goes numb along with left pinky and ring finger). I experience joint pain (no swelling) in my hips (primarily) and knees. Nothing disabling but more a nuisance.
February 2021:
I feel like I am almost back to 'normal'. I am able to go skiing with no problems. I have a follow-up CT of the abdomen and pelvis that shows the same slightly enlarged lymph nodes but nothing else which my hematologist says is good. Follow up labs are good. I attempt to drink a beer - still unable to do this as I get the same headache/dizziness/sleepy feeling. Otherwise things are better.
March 2021:
Feeling OK. Still not my normal self but tolerable. I then experience food poisoning while on vacation in Florida and get extremely ill. A week or so later I begin dealing waking up each day with headaches and feeling dizzy/confused. My balance begins to suffer. I still struggle with sleep despite trying many different medication combinations. The headaches and dizziness are almost unbearable. I also begin to suffer from nausea on a daily basis. My heart palpitations return - along with chest/upper back pain - but much worse than the time before. I am referred to a Cardiologist who performs another EKG, Heart Echo, and 7 day holter monitor. Same findings as before but my lowest resting heart rate has now gone down into the upper 20s. Despite this Cardiologist says the heart is healthy and does not have any further concerns. I experience skipped beats on a regular basis - sometimes as many as one every 10 or so beats.
April 2021:
Above symptoms continue. I see a rheumatologist for the continued numbness/tingling in the left hand and joint pain. Several repeat and new labs are ordered - some even sent to Mayo. Nothing remarkable is found.
May 2021:
Daily headaches and dizziness continue, as does nausea. Early May my PCP refers me to Urology for another change in bathroom habits, nocturia, pelvic pain & discomfort. Urologist suspects Prostatitis and prescribes Bactrim for 21 days. Symptoms persist and she indicates it is likely chronic prostatitis/inflammatory and will eventually go away on its own. Late May after visiting Estes Park the fatigue returns. Again it is severe and disabling. My muscles feel tight and sore. I am unable to exercise. Every muscle feels extremely fatigued upon waking. At the same time I notice rapid weight loss of roughly 14 lbs in 2 weeks.
June 2021:
Same symptoms as above except I begin experiencing muscle twitches and cramping. At first I notice them in my right calf, then left. They quickly progress to my quads, feet, shoulders, triceps, occasionally biceps and abdomen. My hands and forearms begin to cramp after typing for long (like this!). I experience constant pain in my right achilles tendon. I go back to my PCP and describe the twitching. My blood pressure has gone from a typical 120/80 to 98/75. He refers me back to the same local neurologist who agrees to see me again and perform an EMG. I seek out a local LLMD (registered with ILADS). She has me complete Horowitz Lyme/MSIDS questionnaire. Score is around 90. She clinically diagnoses me with Lyme. Also suspects mold and/or parasites. She orders more labs including a WB through Quest. It comes back negative for Lyme (only band 41 positive). She suggests Lyme must not be the problem and that we continue to looking for a root cause elsewhere.
Late June 2021 to Present:
I return to my local LLMD and ask about getting a more thorough set of Lyme/Co-infection testing done. She suggests we can request a Babesia test through Igenex. I reply asking why not do a Lyme Panel through Igenex to ensure we are not missing anything. She says that is possible but not cost effective. I request the panel and have the blood draw completed. Results are positive for Lyme ImmunoBlot IgG (23 IND, 28+, 31+, 41+++), Bartonella & TBRF. I am scheduled for the EMG on Monday July 19th, 2021.
Questions:
To anyone who actually (bless your heart) read all that:
-Do these sound like Lyme/Bart/TBRF symptoms?
-Is it common for these things to come and go and keep changing?
-How trustworthy do you feel Igenex Labs are?
-Are you familiar with many false positives from Igenex?
-Is it possible for a false positive for all 3?
-What advice do you have for someone in my position?
Honestly the last year has been the most challenging of my life. If its not one thing it is another. I've missed more work in the last year than in my entire life. I did start seeing a LLDC back in January and he has had me on some various Cellcore protocols but I have not experienced much if any relief at all. The symptoms just keep coming at me. I've had 3 CT scans, 3 MRIs, multiple x-rays, and been poked and had more blood drawn in the last year than my entire life combined. I'm desperate to feel better but unfortunately I can't seem to find any relief. Thank you for listening to me rant and thanks for any advice.