Hypoglycemia

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Oesophageal Cancer Survivor

Hi I have set up this group as I didnt find another one like it on here. I was diagnosed with esophageal cancer 15 years ago and had chemo and Ivor Lewis Surgery. As anyone who has had the surgery will know, the operation is massive and many people also get complications. I was one of the people who got complication and had a leak, pneumonia, collapsed lungs and fluid in my chest cavity. I had to have a tracheotomy and was in ICU for 4 weeks and then the normal ward for 2, I was nil by mouth for 5 weeks and on a feeding tube. Once I got home from hospital I was in a very weakened state and it took me over a year to be able to walk round the block without getting out of breath. My partner was having to help me to bathe etc. I was not my old self and stayed like this for 8 years, before a friend said she didnt think the way I was feeling was right and advised me to see my GP. I was given counselling and the counsellor said it was CPTSD that was what I had, I knew I was on the road to recovery when I laughed at something on tv for the first time in years. Also from the operation I have Reactive hypoglycemia/Post pandrial hypoglycemia/dumping syndrome - its called all these things. And have to take PPIs and sleep well propped up to avoid horrendous bouts of exorcist acid reflux. Share youre experiences and Im hoping we can build a wonderful supportive community

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Are Coinfections Making Your Lyme Treatment Harder?

When I was doing the research for my book “Love, Hope, Lyme: What Family Members, Partners, and Friends Who Love a Chronic Lyme Survivor Need to Know,” I was unaware that a tick can transmit additional diseases known as coinfections. Coupled with Lyme disease, the coinfections can make managing a person’s health very challenging to say the least.

On the Love, Hope, Lyme podcast, GLA CEO Laura MacNeill discussed the coinfections and the difficulties in managing them. We discussed the work GLA is doing to improve treatment, diagnostics, and patient care for those who have these diseases, most commonly Bartonella and Babesiosis.

“You can get multiple coinfections from one tick bite, or you might get several bites. I’ve heard stories from people who have encountered tick nests, and they find hundreds of them at once. You need to be aware that these coinfections are not going to all have a bullseye rash, which is sometimes a key sign that you have been bitten by a tick. It’s going to be a very complex treatment process for you to go back to health if you have multiple things happening at once,” she said.

The two most common coinfections are Bartonella and Babesiosis. Unlike the bacteria borrelia burgdorferi that causes Lyme disease, these two are caused by parasites that also are transferred from a tick bite.

“This parasite destroys your red blood cells and leads to symptoms such as air hunger, which is the need to take a deep breath all the time. You can have lightheadedness and feel weak. Other common symptoms are high fever, night sweats, headaches, chills, and maybe even hypoglycemia,” she said. “You’re very sick if you’ve been infected with Babesiosis, especially in the later stage of that parasite infection.”

The challenge in treating these parasitic coinfections has led to GLA funding specific research for treatment.

“Antimicrobial drugs are used for treatment and are often administered in conjunction with homeopathic remedies. They can have some severe side effects. There’s a risk of drug resistance that can be developed, and they may or may not completely eradicate the full parasite,” she said.

To discover better treatment approaches, MacNeill said that GLA is supporting Dr. Choukri Ben Mamoun at Yale in his research.

“It’s a dual therapy approach. What his study highlighted that if you put two different drugs together, the antimalarials tafenoquine and atovaquone, to treat Babesiosis in mice, they have the potential for not only a complete cure, but they show immune protection against reinfection of the Babesia parasite. He’s been able to show that in mice, but then outside of a human host, just in the lab, he’s been able to show that this combination effectively kills three diverse Babesia species. It’s very exciting,” she exclaimed.

“This is very promising, but it doesn’t work for everybody. We need more research and more resources around this work so that we can further the research into clinical trials and continue to resolidify these amazing results he’s had in mice,” she said.

“Bartonella is a stealthy pathogen with a very slow growth period, which gives it the ability to evade detection for a very long time,” she said. “This can cause a range of symptoms including high fever, enlarged lymph nodes, to severe chronic illness that can infect multiple organ systems.”

“Plus, there’s also neuropsychiatric implications with Bartonella as the infection can get into your central nervous system. Testing can become very challenging, and you can have a lot of false negatives with Bartonella,” she said.

“If you think that this might be something you’re exposed to, you must be your own advocate to continue to get testing. Unfortunately, right now, the only good test we have is just going to be looking for it in your bloodstream,” she said.

“We need to have a better diagnostic for Bartonella, so we recently initiated funding for what we’re calling the Bartonella Discovery Project. The study aims to unveil these various hiding spots within the body, including the heart tissue, tissue in the brain, and find if bartonella is inside the cells or is it outside of the cells, or is it in the biofilms within those tissues? They are taking a deep look at where it is when it’s inside the tissues and not in the bloodstream, so we can better understand and find it,” she said.

MacNeill said this research is being done with Dr. Monica Embers at Tulane University, a specialist in Borrelia burgdorferi and Lyme disease.

“She’s evaluating antibiotic efficacy against Lyme disease, identifying treatments to eradicate Lyme disease and other infections, and looking at infections and looking for a cure for all of this. Over the years, she’s expanded her research to include Bartonellosis.”

MacNeill said, “You must have the resources available for scientists to even begin setting up a lab and setting aside a couple of years of their professional life to look at this. The GLA is providing those resources so that the scientists can choose Lyme disease and Babesia work. For GLA, that only happens through generous donors. We’re fully funded by the generosity of individual, corporate, and family foundations. Every gift that’s given helps us say yes to projects like Choukri’s, which is making a huge difference.”

“So many people are sick right now, and they can’t quite clear it with the current treatment. We’re talking 10s to 20s millions of dollars to be able to get it from what we know now, to get it to a clinical practice where you walk in your MD’s office and they say, “Here’s your combination therapy. You’re going to be just fine.”

“We continue to push forward our mission so that we can get these drug therapies to the doctor’s office with great understanding, so Lyme survivors don’t have to worry about it anymore,” she concluded.#

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Quick Tip Thursday: Keep Snacks and Meals on Hand at Work to Manage Blood Sugar Levels at Work

Keep healthy snacks and meals on hand so you can easily manage your blood sugar levels while at work. Having food on hand at work can especially help prevent hypoglycemia (Low Blood Sugar).

#Diabetes #DiabetesType1 #DiabetesType2 #lada #mody #ChronicIllness #MightyTogether

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How to Work Unto the Lord when I'm so Tired?

Hi,

I have HPA axis Dysfunction, which has caused my body to make very low levels of cortisol. Which has caused my adrenal glands to have severe reactive hypoglycemia whenever I eat anything other than meat. I eat broccoli, and immediately feel so tired I could pass out. On top of this, my adrenals crash if I take any vitamins or medications. So, I'm very malnourished, although I try to eat healthy, & I cannot take a steroid to help.

My question is: one of my sins is I can be prone to sloth. So, I'm mindful to try & "work unto the Lord." But I'm so exhausted. And with adrenal issues, rest is important. I already pray & read the word 2 plus hours a day. Some say to just stay in prayer & the word all day to work unto the Lord if you are ill. But I really struggle with more than 2-3 hours. How else can I work unto God while essentially sitting/resting much of the day? What can I do with my time that wouldn't be considered sloth? EDIT: I don't have a job right now, & don't feel well enough to get one bc of the reactive hypoglycemia. I've been trying to do things around the house, but I'm so exhausted, like someone gave me sleeping pills tired, all day.

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worrying about never getting an answer

hope i can find some advice on here!
any idea on what could be causing all this?

i started having symptoms in February 2023, my first symptom was Abdominal pain.
these are some of my current symptoms

abdominal pain (February 16) (achy,stabbing, sharp, cramps, /sometimes spasms)
temperatures/ fevers (99.0-102.1)
joint pain
heart palpitations when standing
dizziness
feeling extremely full after eating something small
nonexistent appetite at times
vomiting/nausea
upper stomach pain (achy/cramps)
abdominal pain getting worse after eating (about an hour after)
Upper stomach pain getting worse after eating (30-40 minutes)
(lower and middle)back pain (cramps and achy)
SOB when standing or sitting up too fast
lightheadedness when standing or sitting up too fast/ everything going black
stomach hurting/ feeling full after a sip of water
waking up with weak arms/legs
my hands feel like puffy and stiff when i wake up?
horrible Salt cravings (I can’t stop 😩)
Headaches upon waking up and last for a couple days
purple nail beds
Fingers curving in
Food feeling stuck in throat

i have been diagnosed with

(AMPS) Fibromyalgia
Joint hypermobility
Chronic pain
Chronic Nausea and Vomiting
Visceral hypersensitivity
Chronic gastritis
Abdominal Pain
Hypoglycemia
Vitamin D below Reference Range
Iron Deficiency Anemia
Elevated Blood-pressure Reading without Diagnosis of Hypertension
Excessive Weight Gain
Tachycardia

possible EDS as well
i don’t fully believe the IBS because i continuously get undiagnosed and then diagnosed with it/ my doctors don’t agree on anything.
i was also diagnosed with somatic symptom disorder but have been cleared from that.
my psychiatrist says they don’t believe it’s “my mind causing my symptoms” because our “minds are powerful but not to this point”

i have seen a GI doctor, rheumatologist, and awaiting to see an endocrinologist.
i have had fevers since i got sick, i believe my highest one was 105F (this happened while i was in a helicopter being transported)
i had abnormal labs back in March 2023 and some of them are still a little strange.
(i think these are all?)
lab work:
low WBC
low MCH
high RDW
low neutrophils
low lymphocytes
high CRP
mildly elevated ESR
mildly elevated Alanine Transferase
(barely) low Creatinine Serum
low Ferritin (has gone up now though)

i have had 4 CT scans (some doctor claimed he saw inflammation in my right side, however i have been told that is not true)
MRE
brain MRI
MRI to rule out arthritis
colonoscopy
Endoscopy
Ultrasounds
HIDA scan
i also have been tested for POTS but was told everything was normal and that i will grow out of it

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Sick of Sjogren’s Symptoms

Anyone else out there suffering with Sjogren’s Syndrome ?

I haven’t been formally diagnosed but my ENT and rheumatologist believe I have it ( along with my diagnosed psoriatic arthritis, asthma, IBS and hypoglycemia ). ANA bloodwork is positive but all other bloodwork for Sjogren’s is negative. ENT did not recommend a lip biopsy to help with a diagnosis because my dry mouth and other symptoms are too severe and recovery would be brutal ( his words ). So, instead, I have been diagnosed with sicca complex, even though I probably have seronegative Sjogren’s. We are treating the symptoms, with not much luck overall.

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