Lyme Disease Journey

In 2021, my health journey began when I woke up with troubling bladder issues. Believing it was a bladder infection, I sought medical help and underwent tests that ultimately ruled out an infection. Instead, I was advised to go to the emergency room if my symptoms persisted after three days. This marked the start of a year-long process that involved numerous visits to urologists, with their conclusion being a neurogenic bladder. During this time, I experienced periods of weakness and shakiness in the early mornings, leaving me feeling unwell for weeks.

As time passed, I began to notice unusual sensations in my legs and a tingling feeling in my tailbone. My leg weakness and shakiness persisted, alongside ongoing bladder discomfort. In response to the lack of improvement, my urologists referred me to a pain management specialist due to my persistent back pain. An MRI of my back revealed no issues, and my blood tests consistently returned normal results. I was then referred back to the urologist, who subsequently recommended months of physical therapy. This period was marked by my upper body remaining unaffected, and I completed my physical therapy in three months. Prior to these health challenges, I had been an active athlete, participating in races and hiking along the East Coast. However, my condition brought these activities to a halt, making it difficult to keep up with my two young sons.

During the second year of this journey, I started to experience improvements and was able to resume working out. My bladder issues became more manageable, and I thought I was on the path to recovery. At this stage, Lyme disease had not yet been considered, especially since it is less common in the region of Georgia where I reside.

In the third year, which marks the beginning of the current year, new symptoms emerged. I encountered difficulties with swallowing, along with episodes of dizziness and lightheadedness that persisted for months. A referral to a neurologist did not yield any concerning findings, despite experiencing stiffness in my neck, along with popping and cracking sensations, especially when looking upward. My arms gradually became weak and shaky, and I experienced episodes reminiscent of low blood sugar, causing prolonged weakness and shakiness, although blood tests did not confirm low blood sugar.

Finally, after three years of health challenges, I am undergoing treatment for Lyme disease, even though my initial test for the disease came back negative. I am currently following a treatment plan involving pulsing doxycycline for 15 days on and 15 days off. I've been inspired by the resilience of those in these forums who have dealt with similar experiences for extended periods. I'm curious to know if my story resonates with anyone else who has faced similar health challenges.

Welcome to the forum, Cael! I think you will find that your story resonates with many of us, and we understand the deep frustration of continually seeking specialist care while continuing to develop new disabling symptoms. Some of us also understand the heartache of caring for young children with these complex conditions limiting us.

Are you pursuing Lyme treatment with a Lyme-literate doctor (LLMD)? Has an LLMD evaluated you for the common co-infections and other conditions that tick-borne infections can trigger (dysautonomia, mold illness, mast cell activation syndrome, etc.)?

Is there a plan in place yet to pair other antimicrobials and supportive supplements and other treatments alongside the doxycycline?

Please don't hesitate to ask questions, brainstorm with us, and share more of your experience as you go through this!

Hello and welcome to the forum

again - sorry to hear of your challenges -

my partner had many bladder related issues early on in the course of her lyme disease issues.

similar to your own case - these gradually became more manageable - but other symptoms turned up - this is a very common pattern in lyme disease and co-infections.

it can often be a merry go round of unexplained symptoms that come and go or wax and wane with no obvious explanation - and its not until chronic bacterial infection is in the picture that we start to join up the dots and realise something underlying is driving all of these.

she also developed severe upper body weakness

bartonella was also present in her case (a very common co-infection in lyme patients) and tends to present with pain syndromes, neurological symptoms, and unexplained neuropathies

as above - after being ill for years most LLMDs will treat with multiple antibiotic protocols for extended periods. this may be pulsed or continuous depending on the LLMD

however, there is quite a lot you can do to help yourself also - anything which promotes health and wellbeing will aid your journey - specifically optimising diet, sleep, appropriate exercise, deliberate forms of stress management - and/or mind body techniques that help balance the immune system will all support your system while it fights the disease.

the longer we have been sick the more dysregulated our immune systems get and the more important such a holistic approach to getting well becomes.

its good to hear your doctor is working with a LLMD

monolaurin is a reasonable adjunct to take alongside antibiotics - some well known LLMD's use it top help break up biofilms and it has antimicrobial properties too

doxycycline is a reasonable place to start with antibiotics also. some people react very strongly with die off reactions - so its wise to see how you stabilise before adding more - but you will likely need several.

still step by step is a good approach

its early days from the sound of things - and progress can be gradual - and may kind of creep up on you
we humans are designed to accommodate challenge and hardship - and we rapidly normalise things like pain and fatigue so that we can keep going - but this also means that during gradual improvement we can simply adjust and not realise things are changing.

Good Luck!

When I hear about interstitial cystitis, my first thought is always mast cell activation syndrome. IC can be a symptom of MCAS.

A friend with IC had extensive mold exposure from a previous workplace, which often leads to CIRS and MCAS. She has had many other MCAS symptoms in an ongoing way, and her IC is flared by MCAS triggers (primarily stress and high-histamine foods). My cousin also has debilitating IC, and every time we discuss it she tells me the trigger for an episode was a high-histamine food.

Tick-borne infections can trigger MCAS (as can COVID and mold exposure) so it's something to consider when you have IC. MCAS would not explain all of your symptoms, but if it's part of the puzzle for you, then addressing it could bring down your overall level of inflammation and allow your body to heal more quickly.

This was all I could see on the test they ran.

Lab tests - Blood, Venous
Results
A. Phagocytophilum Ab IgG

Value
<1:64
A. Phagocytophilum Ab IgM

Value
<1:20
Interpretation

Value
No value
ANTIBODY NOT DETECTED

REFERENCE RANGE:
IgG <1:64
IgM <1:20

Anaplasma phagocytophilum is the tick-borne agent
causing Human Granulocytic Ehrlichiosis (HGE).
HGE is distinct and separate from Human Monocytic
Ehrlichiosis (HME), caused by Ehrlichia chaffeensis.
Serologic cross-reactivity between A. phagocytophilum
and E. Chaffeensis is minimal (5-15%).

This test was developed and its analytical
performance characteristics have been determined
by Quest Diagnostics. It has not been cleared or
approved by FDA. This assay has been validated
pursuant to the CLIA regulations and is used for
clinical purposes.

Babesia Duncani (WA1) Antibody (IgG), IFA

Value
<1:256

REFERENCE RANGE: <1:256

INTERPRETIVE CRITERIA:
<1:256 Antibody not detected
> or = 1:256 Antibody detected

Babesia duncani, also known as WA1, has been associated
with symptoms similar to those caused by Babesia microti.
Little, if any, cross-reactivity occurs between Babesia
microti and WA1.

This test was developed and its analytical performance
characteristics have been determined by Quest Diagnostics.
It has not been cleared or approved by FDA. This assay has
been validated pursuant to the CLIA regulations and is
used for clinical purposes.

Babesia microti IgG

titer
Value
<1:64
Babesia microti IgM

titer
Value
<1:20
Interpretation

Value
No value
ANTIBODY NOT DETECTED

REFERENCE RANGES: IgG <1:64
IgM <1:20

Elevated antibody levels to B. microti indicate
exposure to the organism. Human babesiosis
infection is transmitted by the bite of an
infected Ixodes tick or less frequently from
transfusion with blood from an infected donor.
Definitive diagnosis is made by identifying
intraerythrocytic organisms in peripheral blood.
In patients with low parasitemia, antibody
detection by IFA is recommended. IgG levels
greater than or equal to 1:1024 can be detected
in acute phase patients with parasites in blood
smears. The IFA assay can be used as a
seroepidemiologic tool to study the frequency and
distribution of B. microti in endemic areas
especially in persons with mixed infections also
involving Borrelia burgdorferi.

This test was developed and its analytical
performance characteristics have been determined
by Quest Diagnostics. It has not been cleare
d or
approved by FDA. This assay has been validated
pursuant to the CLIA regulations and is used for
clinical purposes.

Lyme Disease AB Screen
View trends
INDEX
Value
<0.90

REFERENCE RANGE: <0.90

Index Interpretation
< 0.90 NEGATIVE
0.90-1.09 EQUIVOCAL
> 1.09 POSITIVE

As recommended by the Food and Drug Administration (FDA),
all samples with positive or equivocal results in a
Borrelia burgdorferi antibody screen will be tested
using a blot method. Positive or equivocal screening
test results should not be interpreted as truly
positive until verified as such using a supplemental
assay (e.g., B. burgdorferi blot).

The screening test and/or blot for B. burgdorferi
antibodies may be falsely negative in early stages
of Lyme disease, including the period when erythema
migrans is apparent.
Ehrlichia chaffeensis Antibody, IgG
View trends
Value
<1:64
Ehrlichia chaffeensis Antibody, IgM
View trends
Value
<1:20
Interpretation
View trends
Value
No value
ANTIBODY NOT DETECTED

REFERENCE RANGE:
IgG <1:64
IgM <1:20

Ehrlichia chaffeensis has been identified as the
causative agent of Human Monocytic Ehrlichiosis
(HME). Infected individuals produce specific
antibodies to E. chaffeensis that can be detected
by an immunofluorescent antibody (IFA) test.
Single IgG IFA titers of 1:64 or greater indicate
exposure to E. chaffeensis. A four-fold rise in
IgG titers between acute and convalescent samples
and/or the presence of IgM antibody against
E. chaffeensis suggest recent or current infection.

This test was developed and its analytical
performance characteristics have been determined
by Quest Diagnostics. It has not been cleared or
approved by FDA. This assay has been validated
pursuant to the CLIA regulations and is used for
clinical purposes.