New to forum - Seeking advice

Currently 21 years old, first tick bite at age 4, then three more between the ages of 14-18. Been working with an LLMD since November, though with little result, and I am beginning to reassess whether or not I’m on the right track as I have yet to be able to receive any positive test results for Lyme, Babesia, or Bartonella which is what my doctor suspects I have.

My symptoms first began as a child around age 7 with knee/foot pain and shortness of breath, with unexplained weight fluctuations and stunted growth being concurrent. Symptoms suddenly increased following a random syncope at age 15. I woke up and have felt brain fog incessantly ever since, which has remained my primary symptom. In chronological order it has come to be accompanied by:

Lightheadedness
Head/neck aches
Irregular heartbeat
Fatigue
Memory loss, continually worsening overtime
Difficulty with attention
Frequent urination/incontinence
Extreme hunger/thirst
Hair thinning/receding
Light sensitivity
Visual floaters
Twitching eyes/trouble with focusing
Numbness, twitching, and tingling in arms, hands, legs, feet, and lips
Persistent low grade fever
Histamine responses to strong foods
Constant discoloration/swelling around eyes
Periodically swollen lymph nodes in neck and groin
Sharper, more concentrated head and neck aches
Dry/burning eyes (usually just one eye)
Mouth sores and receding gums
Extreme dizziness and trouble balancing

The only definitive results my blood work shows is high EBV antibody count, vitamin D deficiency, and severe anemia. My LLMD has been treating me for about 5 months with Bactrim for Bartonella and Atovaquone for Babesia, as well as Iron for the Anemia and a variety of other supporting supplements including a cyst breaker.

The only symptoms that seemed to have lessened somewhat after starting treatment were the light sensitivity and the peripheral twitching/tingling/numbness, though they have since returned. Due to the onset of the Histamine responses I described, I stopped the Bactrim and am awaiting further blood-work before starting Minocycline, as I have seen little in the way of improvement or worsening of symptoms, (including herxing, which I don’t believe I have experienced whatsoever) on the treatment and am beginning to suspect something other than tick borne disease like Lupus or even MS, especially since a lot of the symptoms following the Histamine responses seem to be more auto-immune related. I also wonder if it could even be some dreadful combination of infection and autoimmune disorder.

Does anyone think I’m on the right track with an LLMD? Or should I pursue a different diagnosis? I’ve seen a neurologist, cardiologist, ENT specialist, and Endocrinologist over the course of these symptoms developing, none of whom found anything conclusive, though it has been quite awhile since then.

I originally suspected Lyme due to my symptoms and history of tick bites, but I am growing doubtful due to the very sudden onset of my neurological symptoms, my lack of a positive diagnosis and, and my lack of improvement/herxing on antibiotics. Had anyone had any similar experiences?

SicklySkald said...
Currently 21 years old, first tick bite at age 4, then three more between the ages of 14-18. Been working with an LLMD since November, though with little result, and I am beginning to reassess whether or not I’m on the right track as I have yet to be able to receive any positive test results for Lyme, Babesia, or Bartonella which is what my doctor suspects I have.

My symptoms first began as a child around age 7 with knee/foot pain and shortness of breath, with unexplained weight fluctuations and stunted growth being concurrent. Symptoms suddenly increased following a random syncope at age 15. I woke up and have felt brain fog incessantly ever since, which has remained my primary symptom. In chronological order it has come to be accompanied by:

Lightheadedness
Head/neck aches
Irregular heartbeat
Fatigue
Memory loss, continually worsening overtime
Difficulty with attention
Frequent urination/incontinence
Extreme hunger/thirst
Hair thinning/receding
Light sensitivity
Visual floaters
Twitching eyes/trouble with focusing
Numbness, twitching, and tingling in arms, hands, legs, feet, and lips
Persistent low grade fever
Histamine responses to strong foods
Constant discoloration/swelling around eyes
Periodically swollen lymph nodes in neck and groin
Sharper, more concentrated head and neck aches
Dry/burning eyes (usually just one eye)
Mouth sores and receding gums
Extreme dizziness and trouble balancing

The only definitive results my blood work shows is high EBV antibody count, vitamin D deficiency, and severe anemia. My LLMD has been treating me for about 5 months with Bactrim for Bartonella and Atovaquone for Babesia, as well as Iron for the Anemia and a variety of other supporting supplements including a cyst breaker.

The only symptoms that seemed to have lessened somewhat after starting treatment were the light sensitivity and the peripheral twitching/tingling/numbness, though they have since returned. Due to the onset of the Histamine responses I described, I stopped the Bactrim and am awaiting further blood-work before starting Minocycline, as I have seen little in the way of improvement or worsening of symptoms, (including herxing, which I don’t believe I have experienced whatsoever) on the treatment and am beginning to suspect something other than tick borne disease like Lupus or even MS, especially since a lot of the symptoms following the Histamine responses seem to be more auto-immune related. I also wonder if it could even be some dreadful combination of infection and autoimmune disorder.

Does anyone think I’m on the right track with an LLMD? Or should I pursue a different diagnosis? I’ve seen a neurologist, cardiologist, ENT specialist, and Endocrinologist over the course of these symptoms developing, none of whom found anything conclusive, though it has been quite awhile since then.

I originally suspected Lyme due to my symptoms and history of tick bites, but I am growing doubtful due to the very sudden onset of my neurological symptoms, my lack of a positive diagnosis and, and my lack of improvement/herxing on antibiotics. Had anyone had any similar experiences?

I do think you're on the right track with the LLMD. You had multiple tick bites and multi-systemic symptoms.

It's possible that you may need to try Mepron for Babesia at some point.
Also, for Bartonella, you may need Rifampin or Rifabutin.

Those are the heavy hitters for those two coinfections.
Maybe after knocking down the bacterial load some, your LLMD will change your protocol.

The other possibility is you are herxing (as goshawk stated).

Are you detoxing? Multiple methods daily? If not, I suggest you start - with a few methods...and every few days add in another one.

- Drink lots of water daily
- squeeze some fresh lemon juice into some glasses
- Protect your gut - take probiotics daily
- Protect your liver - take liver support, such as milk thistle seed extract
- take warm epsom salt baths
- dry brush your skin prior to bathing and showering
- light exercise - even if it's a short walk...and/or stretching exercises
- get plenty of sleep

See if you can employ some/all of the above.

Thank you all, I appreciate the input. I do intend to inquire about adding in more antibiotics, I would have sooner but I was hesitant without a positive diagnosis. I also wonder if antibiotic resistance could be an issue, specifically for bactrim which I had taken twice for wisdom teeth infections last year. Is it possible that prior exposure to bactrim for an unrelated issue allow lyme and coinfections to develop resistance?

As for detoxing, all that I am doing is taking Vital Nutrients Detox Formula daily, which I know is not much but even with that alone I have not herxed. I have also eliminated gluten and sugar from my diet and take VSL#3 probiotic twice a day.

And yes, I have had two MRI’s done, but they were both several years ago when my neurological symptoms first began and were clear at the time, though I imagine that things could have changed since then. I did have a CT scan this past March which was clear also, but I am not sure if that is sort of imaging is as reliable as an MRI or if it would show the same sorts of things.

I have been considering once again visiting a neurologist to get a more updated MRI, but my LLMD is naturally very skeptical of mainstream medicine and it seems nearly all of the most trusted neurologists in my area have several month long wait lists. Is a ‘clear’ CT scan sufficient? Or should I get another MRI?

Post Edited (SicklySkald) : 5/28/2018 11:26:37 AM (GMT-6)

You mentioned wisdom teeth infections. Those can be a really big deal with Lyme. Have you seen a biological dentist who is experienced with diagnosing and treating cavitation infections?

You might want to search the forum for posts about dental issues. It can affect your immune system and interfere with Lyme treatment.

Labcorp isn’t a good lab to test for Lyme and coinfections.

If you want to get a WB - try Igenex - the Lyme WB IgM and IgG is $250

Igenex specializes in tickborne disease testing.

Do you know what lab your LLMD is using? Hopefully it’s igenex or Armin Labs

Have you had a full thyroid panel? The sores in your mouth could be caused by sodium lauryl sulfate, a foaming agent in many toothpastes and mouthwashes.