r/lymedisease

I see a really good LLMD who basically saved my life. She tested me through IGNEX and found my chronic anaplasmosis with no other test didn’t. She uses just IGNEX and galaxy labs for testing.

Many people on Facebook and here use vibrant Wellness for testing I see. I brought it up to her and she immediately started going off on them. She said she used to use them but found they were very unreliable and prone to false positives. She’s saying that they use a very Broad antigen panel that is very sensitive and not specific at all. Leaving people that think they have like three types of Lyme disease. She also doesn’t like how it uses colors to show your exposures level without a clear positive and negative. She also told me that on vibrant’s website to cover their asses they said that these test should not be used to diagnose.

Hi everyone. I’m looking for some experiences/advice. I am 36 yo male, I was bitten by a tick on July 1. At the time, it didn’t appear to have been attached for more than a few hours. I wasn’t able to get prophylactic antibiotics, so I monitored for a rash. No rash ever appeared.

Week 2: I developed almost daily low-grade temperatures (~37.4°C), sore throat, mild congestion and fatigue. I assumed it was a viral infection.

Week 3: After playing a few volleyball games, I developed pronounced muscle aches/spasms in my back and saw a physiotherapist, which seemed to help, but eventually the pain migrated elsewhere.

Week 4: I developed lower-back pain, shoulder/neck stiffness, sensitive scalp/skull, and headaches that were worse when moving my head. At this time I requested an appointment with my family doc, but had to wait for it.

Week 5: In addition to all previous symptoms, I lost my appetite and developed worsening pain in my lower back, buttocks and legs, along with some mild tingling in my hands and legs. I was managing the pain with ibuprofen and a muscle relaxant over these weeks, which helped for a few hours.

After 6 weeks after the bite, I finally saw my doctor and was prescribed doxycycline 100 mg twice daily for 28 days.

Interestingly, by Day 2 of doxycycline, I felt much better. Most of the pain, including my back/muscle pain, neck stiffness and scalp pain had improved, and my low-grade temperature sort of went away. For the first time in more than four weeks, I didn't need Advil for the pain and fever.

I continued feeling better on Day 3, although I still have significant fatigue, some brain fog and a slightly confused/unwell feeling.

Then on Day 4, the low-grade temperature returned (~37.5°C) and has persisted. I’ve started taking ibuprofen again.

I’m wondering if anyone experienced something similar after starting doxycycline. Is it normal for symptoms, particularly a low-grade fever, to fluctuate during the first week? Could this potentially be a Jarisch-Herxheimer reaction, or does the return of the fever suggest that the antibiotic isn't working?

I’d appreciate hearing from people who had fever/flu-like symptoms and neurological or muscle symptoms and how long it took before things consistently improved after starting antibiotics.

Federal public health officials say West Nile virus cases are at an all time high for this time of the year, the highest number of human cases reported in June since 2004.

West Nile virus is the most common and serious mosquito-borne disease in California that can be fatal to humans and some wildlife, according to the California Department of Public Health. 

In Los Angeles County, cases began to pop up in May, firstly in Pico Rivera and Long Beach, according to the Greater Los Angeles County Vector Control District. Now it’s up to 27 within its coverage area.

At the same time, more mosquitoes carrying the virus are being found.

Read more about why cases are growing and how to stay safe at the link.

Friday I started to feel a little weird. Saturday and Sunday I started to feel joint pains, headache, intermittent fever.

At that point I didn’t know what it could be but it was bad enough that got me worried and I was able to get a time with an NP Monday (yesterday) morning.

And the first thing she said was that sounded like Lyme. Got me on doxy right away (for 14 days to start) but she said to wait for a few more days to get tested because I might not have the antibodies yet.

The thing is that I never saw a tick (I usually check all the time) never had a bullseye. So I don’t know when did I get a bite. Now I’m freaking out. Don’t know if starts of the symptoms meand early enough.

My pcp is not available (out on leave) until September and I already have an appointment with him then.

I'm trying to decide between the BCA1 Broad coverage assay panel or
the 4IB (4 ImmunoBlots) from IGeneX.
My symptoms are fully present, so I don't see the value in FISH testing considering I know the infection is active.

I don't mind spending the money as long as it's reliable testing so I can finally start non-blind treatment.
I have Medicaid and just asked my LLMD (Dr William Rollow) to send a note to my PCP to request prior authorization for IGeneX testing. I don't trust him to help me to be frank.

I was bitten by three ticks in the Cotswolds, which is a red zone for Lyme. And the next day or two, I got a red circle rash on my leg and started getting pain throughout my body, which was more noticeable at night. And so I started taking doxycycline at 400 milligrams a day. But when I moved down after a few days to 200 milligrams, I started getting burning feelings in my feet and involuntary twitching and jaw jerking at night.

Anyway, so I then continued on the doxycycline, I think 400 milligrams per day. And then my doctor also gave me azithromycin at the time in case I had co-infections. But then I did the Armin labs test and it came back positive for Babesia, Bartonella, and ehrlichia as well as Borrelia. So I've now continued on doxycycline, but I've sort of gone to 200 milligrams a day because I've been taking so many other things like cefuroxime and azithromycin, and I've just started atovaquone for the Babesia. But I'm basically on week 11 of oral antibiotics. And in between this time, I've had about 10 IVs with either ceftriaxone or a mix of ceftriaxone with doxy and azithro.

Iv probably had six IVs of the mixed cocktail, and the other three, I think were just ceftriaxone. But anyway, so I still get symptoms. If I even stop the antibiotics for one day, I start getting the twitching comes back and the pain throughout my body or burning sensations.

So I know that this doctor in London who's saying that to do a two-week protocol of the cocktail IV of ceftriaxone, doxy, and azithro every day for two weeks so I am considering this although it is so expensive. But I just wanted to see what else worked for other people and if they found antibiotics helpful and if so how many visor example helped in the end and what doses ? But yes, any advice would be much appreciated. Thank you.

I am ten days into doxycicline treatment, but I feel like absolute hell. This is unreal. I was diagnosed about a week after the bite and had classic bullseye rash. My doctor did a steroid burst starting at the same time as the antibiotics, and that gave me a few days of relief, but it was fleeting and the fatigue is unbelievable. Unbelievable. I could stay in bed twenty hours a day, and on the weekends I have been staying in bed except for around a couple hours twice a day.

I have really hot flashes periodically, and had terrible joint pain the first few days, and again after the steroids wore off. Had some wicked headaches.

I didn't think I could get so sick after catching it early. But here I am, in hell, barely functioning.

Has anyone felt like there blood pools in their legs and feet. Every-time I work my feet are killing me(i wear expensive sneakers with foot inserts) and I only get relief when I lie back with my feel elevated. Then my blood pressure fluctuates like crazy, but the doctors dismiss it cuz it’s normal when they check it. Just wondering if anyone else has experienced this with lyme.

We removed a tick from my wife’s leg twelve days ago. The redness that developed seemed to be subsiding during the first week, but then it grew larger. We went to see the doctor. He said it didn’t look like a typical symptom of Lyme disease, prescribed an ointment and booked an appointment for a test two weeks later. She has been using the ointment (Fucicort) for three days now. The redness hasn’t gone down; in fact, it has become more pronounced, and there is a slight itching and a sensation of warmth.
Should we wait for the test, or are these symptoms sufficient to indicate Lyme disease?
We will travel to South America in 4 weeks, we would like to be treated before our trip. That's why it stressed us out.

For those of you who are in remission from Lyme, could you please list the top 3 treatments that helped you the most?

I'm 35, female, and I've been dealing with chronic symptoms for 10+ years. I've done a lot of testing and seen a lot of providers, and I still don't feel like anyone has put the whole picture together. Posting this in case it looks familiar to someone, or in case anyone sees something I've been missing.

What I Deal With Daily

Energy & brain

Fatigue that's completely out of proportion to what I've done

Brain fog, head pressure, that "out of it" feeling — worse after stress

Racing thoughts and intrusive thoughts, constantly

Crashes after exertion or after stressful events

Never had a day where my head felt clear

Mood & nervous system

Anxiety, mood swings, easy tearfulness

Panic episodes

PMDD — luteal phase wrecks me (exhaustion, fog, low mood, irritability, sore breasts)

Physical

Chronic constipation

Temperature dysregulation / cold intolerance

Salt cravings

Sleep that isn't restorative

Seborrheic dermatitis (scalp and ears)

Hair and eyebrow thinning

Heavy bleeding and bad cramping days 1–2, nausea very emotional around ovulation

Right lower abdominal pain post-ovulation (history of ovarian cysts + endometriosis)

Orthostatic (I have POTS)

Heart pounding, lightheaded on standing — especially mornings

Standing HR jumps significantly, settles when I lie down

Surgical history: endometriosis surgery 2012, gallbladder removed 2015, breast implants 2021

I no longer have insurance, so everything is out of pocket now. That's a huge part of why this has stalled.

Labs & Testing I've Had

Lyme & Co-Infections — IGeneX, 2018

Lyme Western Blot IgM — POSITIVE by both IGeneX and CDC/NYS criteria (bands 23–25, 41, 58)

Anaplasma phagocytophilum — POSITIVE IgG (≥1:80)

Babesia microti — negative

Bartonella henselae — negative

Never had adequate treatment or follow-up testing after this.

Related markers (2021):

CD57 — 42 (low)

Complement C4a — 1328.7 ng/mL (high) — reference range 0.0–650.0, so more than double the top of range

Thyroid — 2026

TSH 4.89 (high) — down from 6.19, drawn off all medication

Free T4 1.20 (normal), Free T3 3.3 (normal)

TPO antibodies <9, Thyroglobulin antibodies <1.5 — both negative

Tried Tirosint 25 mcg for about a week in May, couldn't tolerate it (anxiety, head pressure, sedation). Currently deciding on a lower dose.

HTMA (hair mineral analysis) — 2026

Four Lows pattern — all four main minerals low:

Calcium 27 (ideal 40–50), Magnesium 4.2, Sodium 6 (ideal ~24), Potassium 1 (ideal ~10)

Phosphorus 14 (low stomach acid marker)

Copper 0.7 (ideal ~2.3) — bio-unavailability

Selenium elevated

Na/K ratio 6 (ideal 2.4) — big elevation

Ca/K ratio 27 (ideal 4) — sluggish thyroid marker

Zn/Cu 25.71 (ideal 8)

No heavy metals currently being excreted

OAT (organic acids) — 2026

Arabinose 43 (high) — yeast marker

Tricarballylic 0.81 (high) — Fusarium mycotoxin, consistent with mold history

2-Hydroxyhippuric 1.7 (high)

Ascorbic acid 9.6 (low)

Mitochondrial, methylation, detox, and neurotransmitter markers all optimal — which surprised me given how I feel

Stool — Genova GI Effects, 2021 (old, needs redoing)

Dysbiosis score 6 (moderate)

Klebsiella pneumoniae 4+ overgrowth

Lactobacillus — no growth on culture

Low Roseburia, Ruminococcus, Akkermansia, Collinsella

Inverted Firmicutes/Bacteroidetes ratio

Digestion, inflammation markers, SCFAs all normal

Parasitology negative

Iron & Related — 2026

Ferritin 47 (up from 39), Iron 102, Saturation 31%, TIBC 326

HFE C282Y heterozygote (carrier) — one copy, H63D negative

Other bloodwork — 2026

B12 499, Folate 14.9, MMA 99 (all adequate)

Copper 101, Ceruloplasmin 25 (low functional), Zinc 71, RBC Magnesium 4.4

Vitamin D 33

Urine iodine 67

Aldosterone 18, Renin 3.729, Aldo/Renin ratio 4.8 — all in range

CBC and CMP unremarkable

Other

MARCONS — previously positive

Documented mold/biotoxin exposure history

C4a 1328.7 (high, 2021) — see Lyme section above

Vaginal microbiome testing (Evvy) — 97% protective flora, STIs negative

Genetics

Homozygous slow COMT, CBS upregulation, MTHFR C677T, MAO-A, VDR FokI, MTRR, HFE C282Y carrier. I don't tolerate methylated B vitamins — do better with folinic acid and hydroxocobalamin.

Where I'm At

I'm extremely sensitive to supplements and medications. I do best with slow, low-dose, one-thing-at-a-time introductions. No gallbladder, so I need ox bile support with fats.

What I'm sitting with: an untreated elevated TSH, a Four Lows mineral pattern, a positive Lyme and Anaplasma history that was never properly treated or rechecked, a low CD57 and a C4a more than double the top of range from 2021, POTS with an unknown subtype, PMDD, and 5-year-old gut testing that probably needs redoing. Plus trauma history and a physically demanding job.

If you've dealt with a similar combination — especially Lyme plus thyroid plus a Four Lows pattern — I'd really like to hear what actually helped you, and in what order. I'm also open to hearing from anyone who's navigated this without insurance.

Mostly I just want to know I'm not the only one. Thanks for reading this far. 💛

Did anyone notice an increased burning in feet/lower legs a few weeks into minocycline? I can’t tell if it’s a side effect of the medication or just the Lyme itself.

I am positive for Lyme and IND for Bartonella. My symptoms have been primarily burning tingling sensations, weakness sensations to where I can’t work out and have limited activity, brain fog, fatigue, increased anxiety and cry very easily and all the time but mostly due to fear and stress over symptoms