Image from Anne Space Coast Photography
Anne LiConti, a myalgic encephalomyelitis (ME) patient and advocate for more than 30 years, shares her story of diagnosis, challenges as well as how she found helpful treatments to improve her quality of life.
She shares her story of survival and perseverance in a series of youtube videos answering our questions and giving insights into how she found hope after many years. Whether you are a newly diagnosed or long-term person with ME (pwme), a doctor, researcher, or just interested in the disease - you will gain much-needed information on what it means to be a long-term sufferer and clues as to what may be helpful in regaining some function.
The videos have closed captions for those who prefer reading the interview. We will give brief info paraphrasing what is shared in each video.
Welcome Anne LiConti to an MEadvocacy.org interview talking about things that have helped patients diagnosed with ME. We are grateful for these videos answering our questions.
Note: Some videos have a few notification bells. For those with sound sensitivity, the auto-generated closed caption works fairly well.
VIDEO #1 - 7:21 minutes
How old were you when you became sick? What year was that?
Anne was 26 years old when she became sick with a definitive crash (1990)
Was it sudden onset or did you get sick over time?
There were some indications as a child of being sickly. Anne’s mother also had the illness so she tried to protect Anne as much as she could but, when Anne became very ill with Mycoplasma Pneumonia in 1990, it put her in a major crash.
What work were you doing when you got sick?
Operating Nurse
How did you first get diagnosed and what label did they use at that time?
At the urging of her doctor, Anne was eventually hospitalized with Mycoplasma (not long after being hospitalized due to high-risk pregnancy carrying twins). Various testing was done to rule out causes for symptoms including dizziness.
“When I got to the floor I realized I was on the cancer floor and my life flashed before my eyes. I was 26 years old and thinking: a cancer floor!”. A lot of testing was done.
“When I went for follow-up he said you won’t be working full-time anymore in the hospital…. You are going to be disabled because of the asthma… He said it is neuromyasthenia.”
Anne didn’t believe the doctor. She didn’t connect it to “yuppy flu” until later.
She took five more months off from work to recuperate. She then worked Monday and Thursday with rest in between.
VIDEO #2 11:11 minutes
The pulmonary doctor who first said Anne would never be able to return to work full time said, “go home and enjoy your kids”.
“It was like we didn’t know how much time I had left”.
Between 1993 & 1994 three doctors (including Dr. Susan Levine) all diagnosed Anne with Chronic Fatigue Syndrome (CFS).
You’ve talked in the past about the importance of diet. Could you give us an overview of your approach?
“I always thought diet was important.”
Anne did the Candida protocol between 1994 & 1996 with help from Dr. Levine who prescribed Nystatin and after that, she improved immune-wise. Anne noticed that when she took out grains and pasta from her diet, her Lipid panel was beautiful/normal but, when she added them back in, it caused the lipid panel numbers to be much higher.
In 2018, Anne started on the Health Coach Plan which basically removes most of the gluten and dairy in the diet.
“In the third week it was amazing how much better I felt. The pain went away”. She has not needed any pain medication since.
Ann then joined a Dysautonomia group after getting a new medical work-up and she found treatment for her orthostatic hypotension. Joining the group led to finding Dr. Trevino. He had a packet of lifestyle adaptations found on the Dysautonomia Website. “The first thing he said was no gluten.”
After having a setback from adding grains back in, Anne did further testing that led to a diagnosis of non-celiac wheat sensitivity. Anne discussed issues with getting a celiac diagnosis and a study showing ME and CFS have non-celiac wheat sensitivity and there is a blood test for it.
Anne also suffers from mast cell disease which had previously put her in anaphylactic shock. Being gluten-free and dairy-free helps stabilize the mast cells. Stabilizing mast cells makes the illness easier to treat.
VIDEO #3 27:05 minutes
In recent years you’ve talked about getting a dysautonomia diagnosis. How did you find a doctor to help you?
Anne talks about what she did in the1990s with getting a tilt table test that showed she has orthostatic hypotension (OH). She had moved from New York to Florida so had to find a new doctor. She looked for another infectious disease doctor like Susan Levine who also treated chronic fatigue immune dysfunction syndrome (CFIDS) patients. Dr. Levine was using the Myers cocktail which helped patients. Anne was frustrated that no one seemed interested in treating her OH which she knew from her nursing school days could be pretty dangerous.
Anne talks about being hesitant to try medications after a few attempts with Florinef were unsuccessful.
Found one doctor via the Co-Cure doctor list. The list isn’t current but can be found in the archived website: http://web.archive.org/web/20140629121155/http://co-cure.org/USA_FL.htm
Anne leans towards doctors in their own solo private practice as opposed to medical groups.
When needing a new doctor in 2018, Anne did a search for a chronic fatigue syndrome doctor and found one nearby.
The new doctor suggested Midodrine but it took Anne a couple of years to trust him to try it. She found immediate good results because it helped stabilize the mast cells. “First dose of the Midodrine the brain sort of switched on.” Anne could also walk her dog now without a crash after the walk. Anne began to think this might have been dysautonomia all along. This led to Anne joining the dysautonomia groups to find out what doctors were in her area.
Until starting on the Midodrine, Anne was basically bedbound most of the day. She had extremely low blood pressure and had some episodes of near syncope. She felt “deathly ill”.
Anne talks about watching videos from Dr. Jeffrey Boris https://www.jeffreyborismd.com/. She talks about the history of dysautonomia which can overlap with ME with both being known in the past as neuromyasthenia.
Joining the dysautonomia groups led her to find Dr. Trevino who is an expert in dysautonomia. She looked into him to verify he would also prescribe antivirals which he does. She went to a meeting of a local dysautonomia group and was impressed with all they offered and notes that this isn’t something we see in the ME community.
From what you’ve shared with us, it sounds like it is important that anyone with an ME, CFS, or ME/CFS diagnosis who has any of the dysautonomia symptoms should get properly tested by an experienced doctor. What medical treatments did getting that diagnosis lead to?
At 21 minutes Anne talks about meeting with Dr. Trevino and his approach to treatment including Midodrine medication dosage, mast cell protocol, and IV fluids by a home care nurse. She talks about the improvement she experienced from these treatments and how amazing the difference from getting the IV fluids regularly. “Patients would have had a better quality of life with just the fluids.” “They (IV fluids) also help clear up mast cell flare-ups.”
What dysautonomia diagnosis do you have?
Anne covers some of her diagnoses including ICD code G90.3 which is multi-system degeneration of the autonomic nervous system which includes neurogenic orthostatic hypotension (nOH).
See links and info on dysautonomia, orthostatic hypotension, and neurogenic orthostatic hypotension at end of the blog.
VIDEO #4 14:47 minutes
How many years had you been sick when you learned about what you have and started the treatments that have improved your quality of life?
2 years and 8 months ago. (about 28 years).
How is neurogenic orthostatic hypotension (nOH) different from typical postural orthostatic tachycardia syndrome (POTS) that many with ME have been diagnosed with?
Orthostatic hypotension is a systolic blood pressure drop of 30 and POTS is the heart rate increase of 30 beats per minute on standing. See video for specifics. Diagnosis with tilt table test or orthostatic diary.
Do you think your ME diagnosis was correct or do you think all your symptoms are caused by nOH?
Can’t answer that because of the lack of research in ME. Patients with ME have dysautonomia. “I have the immune stuff.. “ Anne talks about how much research has been done on dysautonomia and how shameful it is that ME has not received the same level of research.
What testing did you go through to get that dysautonomia diagnosis?
Tilt table test
Echocardiogram
Event monitor for a month
Orthostatic diary for a week
Video from 2018 “How the M.E Patient Can Get Their Foot in The Cardiologists Door“ https://www.youtube.com/watch?v=YzQ2DoW2rM0
What day-to-day things do you do to help deal with dysautonomia?
“My focus is more on the nOH and mast cell… lifestyle stuff and medication. Compression, salt, fluids, IVs.. Sleep with bed at an angle.”
She talked about how the ME community has known for years about the IV saline helping but it took her almost 29 years to get them and she had to go through a dysautonomia doctor to get them.
The home care nurse comes to the house twice a week.
Anne discusses the financial issues with getting IV fluids regularly and shows what is shipped to her house.
She discusses Midodrine as well as Northera (very expensive medication) that is specifically for nOH.
Anne repeated the importance of diet - eating clean especially avoiding gluten.
You have talked in the past about tracking your own blood pressure and heart rate. Please tell us a bit about how you do that?
Anne shows us the watch she uses - continued in the next video.
VIDEO #5 9:23 minutes
This watch monitors heart rate, steps, blood pressure, oximeter, and monitors sleep.
Anne talks about the importance of measuring blood pressure as well as heart rate because a lot of people are possibly missing orthostatic hypotension.
Are there any other tips about dysautonomia you’d like to share with us today?
She finds getting out in the sun an important part of her routine to help her mental well-being.
Anne covers the importance of various aspects of lifestyle including fluids, salt, electrolytes, and like any chronic disease taking good care of oneself will lead to doing better. It’s important to try one treatment at a time. She continues to use a scooter when needed and continues to pay close attention to symptoms.
Anne closes the interview recognizing that due to the lack of research or understanding we never really knew how treatable the illness is and she now believes we are treatable including getting thyroid checked, IV fluids,
She discusses that there are diagnoses that are missed that could be treated.
How have those treatments changed your daily life?
Life has changed a lot including significant improvement which has allowed her to return to work part-time remote from home.
She decided to do these videos to give hope to those who didn’t know how much the kind of treatments and lifestyle changes she has done could improve her quality of life.
“We do have hope.”
We hope this interview brings some hope to the patients who have been sick for many years.
LINKS:
Managing Dysautonomias from Dysautonomia International
https://www.dysautonomiainternational.org/pdf/PAM_7_Managing.pdf
Lifestyle Adaptations for POTS
http://www.dysautonomiainternational.org/page.php?ID=44&fbclid=IwAR3VxGW37at76ZUUa2NSL_6f0Uk5gxxk0FHB4YGm_B7nhZIX3qGUb4qoZoo
Information on Orthostatic Hypotension
“By definition, the drop in blood pressure must be greater than 20mm Hg of mercury in systolic BP and/or more than 10 mm of mercury in diastolic BP within 3 minutes upon standing from sitting or from a lying down face-up (supine) position.”
https://rarediseases.org/rare-diseases/orthostatic-hypotension/?fbclid=IwAR0zVbvT-bMMjOw62wqCeudXGPm8cewcWkv2ci8T2hgawQ7dcdblQMrCwfg
Are you experiencing neurogenic orthostatic hypotension (nOH)?
Symptom Checker for nOH- fill out and download results.
https://www.nohmatters.com/symptoms-neurogenic-orthostatic-hypotension/symptom-checker?fbclid=IwAR3GLoJza5Xsr5AAFZPDpOxNk1qkrnkrPDhzCAmF4znUAYFCT6S3XewLAzg
Understanding OH and Tippy the fainting Squirrel
Tippy fainting video - https://www.youtube.com/watch?v=NZhsc9bc7VM
Tippy doesn’t have OH - https://dysautonomiainternational.org/page.php?ID=170&fbclid=IwAR3GaeKc7WcNTy7z13LWywf_aTWiADVE_53H49hwaQ0cWhpQ3pAL4TiF8QM
Should you be screened for nOH? https://www.nohmatters.com/noh-screening?fbclid=IwAR0ZB7JgFiW_17xqps3z7CDCBuNQwbomm-YjdM3rBu3blld5RclMxIpQ-JA
*Always seek the advice of a Medical Professional before deciding the right treatment option for you or your child. Any advice given is for educational and informational purposes only, and should not be considered medical, legal, or financial advice.
Anne with Greybaby
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