Lyme Story

Here's my abbreviated Lyme experience.

Lyme first appeared at 12 years old in my joints. First in shoulder, then in knee. Had about 10 days of Amoxicillin and "recovered". No tick or rash found.

First noticed symptoms again in 2010 when I was around 26 years old. These symptoms were different, started out slight and increased. Mid-back vertebra going out of place, allergy type reactions to smells, spread to nerves in limbs and face (numbness, tingling), pelvic issues, stiff neck, etc.

Tried LDI in 2017. First dose (Lyme mix and LDA) helped. Neck began to loosen within three days; other symptoms decreased and felt better over the next month or so. But when it wore off, I was worse. Sensitivity to smells was higher and had new symptoms like tightness in sides of head, energy draining out of arm, etc. Continued to try LDI but only had one or two slight improvements after that first dose. I think subsequent doses may have only been Borrelia and LDA. Switched to Dr. TV and tried again and included Strep, Yeast, and Mycoplasma I think it was. No help. So gradually worsened in 2017.

Early 2018 tried Candida diet, liver cleansing, diatomaceous earth, etc. and only worsened further. Got feeling quite bad with sense of smell up even more so pretty much quit everything. Stayed worse.

Continued to worsen through the year until I would say I was extremely sick. Very reactive, even the slightest smells would cause bad symptoms, really bad reflux, gut, and chest symptoms, rotating nerve pain/numbness/tingling, sometimes could barely walk or breathe, ended up having to pretty much be in my room 24/7 for several months. Quite sure reacting to EMFs. It seemed like I couldn't tolerate being in front of my computer or phone screen.

Late 2018 - Had positive Elisa and Western Blot through local NP. CD 57 was 147 I think? Saw integrative doctor who treats Lyme. Said I needed to be built up before could treat the Lyme. Had me start supplements and was pushing the PK Protocol (I think that's what it was). Started SBI Protect and phosphatidylcholine. My gut started to flare bad, reflux worse. Then numbness got really bad and had large black spots in eyes. Ended up in ER because overall symptoms just seemed to spiral out of control. Even had bad swallowing difficulty at this time and lump in throat. Was in hospital a few days because found air in my chest (had thrown up a day or so earlier) and thought possible esophagus tear. There was none. Infectious disease doctor said I didn't have Lyme, and gastroenterologist thought my reflux was mostly anxiety. Recommended PPI, could try inhaler, and Zyrtec and sent me home.

Next day woke up with feeling of throat closed up. Symptoms were still very out of hand. That was when got serious about antihistamine diet. Went back to doctor (still having very difficult time breathing, kind of strange chest symptoms), and she recommended Zantac instead of PPI, prescribed steroid inhaler and said come back in a month. Thank the Lord, I think things did settle down just a little gradually after that, but I was still extremely sick and confined to my room. Didn't use the steroid inhaler. Had tried an albuterol inhaler.

Late 2018-2019 - Went to another LLMD we had heard about. She started me on Weigman Protocol. I did Weigman Protocol for 2 months followed by 2 months of Rifampin and Tribiotics. During those four months, I went from having to stay in my room mostly on my bed to being able to walk 1-2 miles. It took me probably about 3 months before I could stay out of my room. Things were a bit slow. Doctor was suspecting mold so tested for that and found higher levels of two molds. Started using binders for that, but doctor had me off of antibiotics, I think thinking mold was my main issue, and I have relapsed but not to the point of where I was about a year ago, thankfully. Tried Rifampin for another 2 months because I was thinking that helped me the most, but didn't seem to do much for me, and I only seemed to worsen in some ways. Have gotten back on the full dose antihistamines.

More recently have seen LLPA AW in Asheville. Did stabilization with Gabapentin low dose and probiotics. Have now started antibiotic protocol.

Thankful to God for His provision and hope this info can help someone else. This forum has helped me a lot.

Post Edited (ChristianWithLyme) : 11/6/2019 10:41:27 AM (GMT-7)

Thanks and hope you do well also. I was in a more stressful time in my life when I developed symptoms again in 2010.

LDI is Low Dose Immunotherapy. Some doctors think it can make Lyme worse. That may have happened in my case.

I take some herbs also but can't tolerate many of them at this point, even when I try to go slow. Not sure if histamine reaction or what.

Christian,

Welcome and thanks for sharing your story. I, too, have strong chemical sensitivities to smells. I was very interested in what you said about that.

You said, “ I did Weigman Protocol for 2 months followed by 2 months of Rifampin and Tribiotics. During those four months, I went from having to stay in my room mostly on my bed to being able to walk 1-2 miles.“ During this time of physical improvement, did your chemical sensitivities improve also?

I have mold illness in addition to Lyme/co. I was told that mold is often the cause of MCS. I know other people here have chemical sensitivities, but no one else talks about it like I do. The mold and chemical sensitivities are my most disabling and life-altering symptoms.

I moved away from mold 3 years ago, but the sensitivities have only gotten worse over time.