Early in June, my 26 yr old daughter was diagnosed with MS when she developed double vision in one eye. Later that month, I was diagnosed with Parkinsons, which can also be considered an auto-immune disease. Now my 18 year old son is being tested for Crohn's disease, another auto-immune. Can this all be related??
Three people in my family diagnosed with ... - Cure Parkinson's
Three people in my family diagnosed with autoimmune disease in 1 summer!
Written by
NewtoPD24
To view profiles and participate in discussions please or .
45 Replies
•
Have there been any unusually stressful situations?
Nothing other than our 13 year old dog dying from lymphoma, which was obviously very sad. Otherwise, everyone (four adult kids) seemingly healthy.
My condolences on the loss of your beloved dog. Grief for a pet can be profound, and although it didn't cause your family's conditions, the timing suggests it could have played a factor in when they were diagnosed. Not sure about the other two, but Parkinson's has a long prodromal period. Many people here have said a stressful event tipped their disease into a diagnosable state. Stress reduction is vital to controlling symptoms.
I asked ChatGPT what your family's conditions have in common, and inflammation seemed to be the most salient answer. So then I asked if a propensity for inflammation is heritable, and got this response;
"Yes, a tendency toward inflammatory diseases can be heritable. Many inflammatory conditions, including autoimmune diseases like Multiple Sclerosis and Crohn's disease, have a genetic component. Family studies and twin studies suggest that genetic factors contribute to the risk of developing these diseases.
Genetic Predisposition: Certain genes are associated with an increased risk of inflammatory diseases. For example, variations in the HLA (human leukocyte antigen) genes are linked to several autoimmune disorders.
Environmental Interactions: While genetics play a significant role, environmental factors (such as infections, diet, and lifestyle) also influence the development and severity of inflammatory diseases. The interplay between genes and environment can determine an individual's susceptibility.
Familial Clustering: Individuals with a family history of inflammatory diseases are at a higher risk of developing similar conditions, suggesting a heritable component.
Epigenetics: Changes in gene expression that do not involve alterations to the DNA sequence can also influence inflammatory responses and may be influenced by environmental factors, adding another layer of complexity to heritability.
Overall, while there is a hereditary tendency toward inflammatory diseases, it is shaped by a combination of genetic, environmental, and lifestyle factors."
Cytokines are known to mediate the inflammatory response, so next I asked which cytokines the 3 conditions have in common and got this;
"In Multiple Sclerosis (MS), Parkinson's disease, and Crohn's disease, several cytokines play a role in the inflammatory processes and disease progression. Common cytokines include:
Tumor Necrosis Factor-alpha (TNF-α): This pro-inflammatory cytokine is implicated in all three conditions, promoting inflammation and contributing to neuronal damage in MS and Parkinson's, as well as intestinal inflammation in Crohn's.
Interleukin-1 beta (IL-1β): This cytokine is involved in inflammatory responses and has been associated with neuroinflammation in MS and Parkinson's, as well as with intestinal inflammation in Crohn's.
Interleukin-6 (IL-6): Elevated levels of IL-6 are found in MS and Crohn's disease, and it may also play a role in neuroinflammation in Parkinson's.
Interleukin-17 (IL-17): This cytokine is particularly important in autoimmune conditions like MS and Crohn's disease, contributing to inflammation and tissue damage.
Interferon-gamma (IFN-γ): This cytokine is involved in immune responses and has been implicated in the pathology of MS and Crohn's disease.
Transforming Growth Factor-beta (TGF-β): Although primarily known for its role in immune regulation, TGF-β is also involved in the pathology of these diseases, promoting inflammation in certain contexts.
These cytokines contribute to the complex inflammatory landscape seen in these diseases, highlighting the shared immune mechanisms involved in their pathogenesis."
Probably more info than you wanted, but perhaps as a family you could explore diet and lifestyle changes that reduce inflammation? Good luck to all of you!
This is excellent information! I am starting to understand that the common source of systemic inflammation is gut pathology ie dysbiosis. To avoid repetition, please see my comment to 'chartist' below.
Might want to look into improving gut health too. Inflammatory bowel disease is a risk factor for Parkinson's.
academic.oup.com/braincomms...
" The gut–brain axis has been hypothesized to play a role in Parkinson’s disease pathogenesis, stimulating a growing body of work on the putative contribution of gastrointestinal dysfunction in Parkinson’s disease initiation.1,2 Inflammatory bowel disease (IBD) is a chronic intestinal inflammatory condition manifested by long-lasting diarrhoea, abdominal pain and bloody stool.3 Recently, a meta-analysis of nine observational studies comprising over 12 million patients demonstrated an interesting bidirectional relationship between Parkinson’s disease and IBD, where IBD as a risk factor was associated with 25–30% increase of Parkinson’s disease risk and as an outcome was 40% more likely to develop among Parkinson’s disease patients.4 A protective effect of anti-inflammatory medications on Parkinson’s disease among IBD patients was also reported by the authors.4 Together with the emerging data from subsequent epidemiological studies, these evidence converged to support a biological link between the two seemingly unrelated conditions.5,6"
"Discovery of genetic overlap between Parkinson’s disease and IBD has shed new light into the molecular underpinning shared by the two diseases. For instance, polymorphisms of the leucine-rich repeat kinase 2 (LRRK2) gene have been robustly associated with susceptibility to both Parkinson’s disease and Crohn’s disease, a subtype of IBD, corroborating the crucial role of the immune system in the two conditions.19,20"
If you have a 23 and me genetic report, it can tell you if you have the commonest of the LRRK2 mutations associated with Parkinson's.
Do you recommend supplementing with a probiotic?? Any specific brands?
Please see my reply to 'chartist' below.
One significant commonality of these three diseases is gut dysbiosis. FMT has shown benefit for all three which is a significant clue about a potential treatment option. Here is a link to a study suggesting that FMT helps maintain remission from Crohn's disease (CD) :
microbiomejournal.biomedcen....
Unfortunately, in the US, FMT is only approved for C. diff despite having a very good safety profile in humans over many years. FMT has also shown significant benefit for PD and MS in human studies. China is more on the cutting edge of FMT and is testing it for many health issues and seems to have better availability for other health issues.
For more info on FMT, this article I wrote may interest you :
healthunlocked.com/cure-par...
On a related note for your son, it may be worthwhile for him to look into the use of low dose naltrexone (LDN) as a prescription medication with an excellent safety profile that has shown significant benefit for people with CD. Here is a starting point for him :
nationalpharmacyrx.com/low-...
Here is a relevant article quote :
' A randomized, double-blind, placebo-controlled investigation tested the efficacy and safety of LDN for 12 weeks in adults with active Crohn’s disease. More than twice as many patients (88%) taking LDN exhibited a 70-point decrease in CDAI scores, in contrast with only 40% of individuals in the placebo group. '
LDN has also shown some benefit for people with MS, but not all, as discussed here :
nationalmssociety.org/news-...
Here is a relevant quote from the article :
' While some of Shinto’s patients have taken LDN for years and find it very effective in managing their symptoms, others do not notice a change. And although some patients feel LDN’s effects about a week after they start taking it, others do not feel the effects until 2 to 3 months later. Shinto adds that unless there is a reason to stop taking LDN, she encourages her patients to try it for 3 months to feel the effects. The side effects of LDN can vary, but the most common side effect reported to her is vivid dreams. '
The following new research (October, 2024) discusses the gut dysbiosis seen in PD and how that can promote disease activity and disease progression :
molecularneurodegeneration....
Here is a relevant quote from the research :
' We propose that the dysbiotic gut microbiome (dysbiome) in PD can disrupt a healthy microbiome and Th17 homeostatic immunity in the ileum mucosa, leading to a cascade effect that propagates to the brain, ultimately contributing to PD pathophysiology. Our landmark study has successfully identified new peripheral biomarkers that could be used to develop highly effective strategies to prevent the progression of PD into the brain. '
Art
I haven't got PD but became aware of the possible dysbiosis connection (via methylation/ neurotransmitter production as well as systemic inflammation) whilst researching for my own dysbiosis/mast cell/chronic fatigue issues. I have decided to take the plunge and do a high dose six day course of ELIXA as I am very impressed with the explanation as to its huge advantage compared with 'trickle dosing' a much lower dose of probiotics. The extremely bright and knowledgeable young man who developed this product provides excellent information on his website as well as answering questions on Facebook and Instagram as well as by email, time permitting.
Please let us know! 6 day load dose and what is maintenance?
Will do ! He explains on website that 6 days is the whole course, though if dysbiosis has been severe, to possibly do another back to back, so 12 days total. He thinks that after that maintenance doses shouldn't be necessary (except after maybe antibiotics, GI infections etc.) For a much better explanation than I can give suggest look at elixa-probiotic.com/uk/
Letting you know as promised, that the course of Elixa had a significant positive effect on my symptoms, noticeable after three days! As I'd had longstanding problems, I decided to follow it immediately with a second course to consolidate the benefits.
That's great news for you Bracondale and very happy making. Sorry I missed your earlier reply as I would have responded. The fatigue has lifted substantially then? Such a relief and hope this is the ongoing answer for you. Thank you.
It has taken me years to work out that my relapsing remitting fatigue (aka utter exhaustion) coincides with high histamine, as symptoms are not obvious, and to then work out what might be causing the histamine 'intolerance'. But dysbiosis is a big factor here, and many courses of antibiotics over the decades certainly hasn't helped.
I'm not sure if you wanted me to comment on this probiotic or not, but I will.
Their product is 500 billion CFU per sachet/capsule at a cost of $39.95 per 6 capsules, making it one of, if not the most expensive probiotic, I have ever seen, but if it works for the purpose you are using it for, then perhaps not expensive at all. Their product contains 11 popular bacterial strains. By comparison, the probiotic I take everyday is 300 billion CFU at a cost of about $25 for 60 capsules to be used at the rate of one per day, so a two month supply. It contains 24 popular bacterial strains.
They use just one ingredient that could be considered a prebiotic, potato starch, but they do not describe it as a prebiotic, but rather : ' potato starch is present to provide the benefits of resistant starch with regards to probiotic adhesion and to keep the capsule contents completely dry from atmospheric moisture, ensuring that the bacteria remain in their stable, freeze-dried state until consumption. In any case, the amount seems less than optimal for a prebiotic.
By comparison, the list below is what my probiotic contains as a prebiotic. In addition I take extra Inulin and or Xylitol in a significantly larger quantity to act as prebiotics.
Let us know how your probiotic works for your purpose.
Art
Ingredients
Thank u for this, what is the name of the probiotic u use?
Thank you for your comment Art. Your probiotic looks to be very well specified and good value for money. I particularly like that they have specified the strains of probiotics used (implying that they are studied strains). May I please ask the name of the product and manufacturer? Elixa involves taking one sachet of 10 capsules (each containing 50 billion CFU) per day, but I take your point about it seeming expensive. The headline price for the six day course in the UK is £24.95 (decreasing if more courses are purchased). It was developed by an Oxford biomedical engineering graduate who has put huge effort into ensuring that the probiotics reach far enough along the gastrointestinal tract (ie terminal ileum/colon) 'alive' before being released. I'm not sure that all manufacturers do that. He explains logically in his website material why he purposely does not use prebiotics in with the probiotics, and also why users would ideally be eating a low prebiotic diet just prior to, and during, the course. My understanding from other sources is that prebiotics are helpful for a 'healthy' microbiome (if anyone is fortunate enough to have one of those these days!) or for mild dysbiosis, but can badly aggravate moderate to severe dysbiosis. I plan to slowly increase prebiotics, if all goes well, after the course. I have been using xylitol whilst on a ketogenic diet but am now not quite so keen! nih.gov/news-events/nih-res...
Just to let you know that the course of Elixa had a significant positive effect on my symptoms, noticeable after three days! As I'd had longstanding problems, I decided to follow it immediately with a second course to consolidate the benefits.
Thank you for the update! Can you be more specific on the specific benefits that you attribute to Elixa compared to right before Elixa?
Art
Stools improved from being extremely loose/ liquid, with no form (off the Bristol stool chart!) to soft normal within three days. Sleep became deeper with fewer wakings during the night. I felt generally more relaxed. And this was despite some relatively mild die-off/Herxheimer symptoms (headache, sore throat, aching muscles, feeling chills/feverish/flushed) which weren't nearly as bad as I'd anticipated given how high the probiotic was at 50 billion per day.
I'm sorry for the difficulties you and your family are facing.
Exposure to synthetic chemicals, including herbicides and dry cleaning solvent, are known risk factors for Parkinson's. I wonder whether your household might in the past have been exposed to any such chemicals, for instance from agricultural spraying or factory fumes?
possibly pesticide such as flea powders for dog, or house spray for insects , or on fruit or veges? Or diet ? Do you eat deep fried food, and processed food? Are you gluten sensitive? Something in the water?
there is also the dog as that might also be the same cause if it’s a chemical exposure.
Very very sorry to hear this. A lousy ordeal.
Wanted to add to all the aforementioned scientific info my less scientific contribution. I was dxed with PD the year my beloved Lab died and my 2 beautiful goats.
It was only this year I learned PD is considered autoimmune (a nurse mentioned it). This seems to be rare knowledge. No one else had suggested that. Is it true?
I have read that PD can be considered an autoimmune in the case of those with genetic predisposition, Ironically, I have no family members with PD and in 23 and Me it said I was not likely to get PD.
The connection I see here is that both PD and autoimmune disease may have gut dysbiosis in common.
a good idea would be to check your house for hidden mold. That could cause all the things you mention, even your dog’s lymphoma.
This group is of great guidance m.facebook.com/groups/toxic...
I have a mold kit I am going to use, given to me by my functional med doc. Willl see!
If you are testing your house, I know the most accurate test is the ERMI where you collect dust samples and send them to the lab to be analyzed. You can learn more about this in the group I shared above.
Yes, this is the one I am doing. Will see.
Covid. as well as other viral infection may be related to the onset of autoimmune diseases. Having an undiagnosed familial genetic profile that is associated with autoimmune disease can hasten the onset of the diseases. I developed RA in my early 20's after a viral infection. Turns out other extended family also had issues.
Do you farm or live near one? Your 4th family member had blood cancer - lymphoma is autoimmune disease too. It matters because our pets can be a sentinel for environmental exposure to toxins - this includes the contaminated food we eat and the chemicals used on our yards and in our homes.
This is your wakeup call to change your lifestyle. This cluster of illnesses isn't a coincidence. No doctor is going to tell you this.
Been there,
SE🕊️
I do not farm or live near one. Fortunately, we just got test results back from bloodwork and CT scan for my son and he does not have Crohn's. "Only" my PD and my daughter's MS and of course our beloved dog's lymphoma. But will take any victory I can get. We are doing a mold study of our house, so we'll see.
Could be related to thie diet, all sorts of things cantrigger auto immune diseases in different people, trouble is that it could be different things. youtu.be/BMx_nHvJesA?si=R2n...
Early on it was found that THE JAB was causing autoimmune problems.
big rise in neuro diseaes after spanish flu after WW1. Could be increase after covid as it neuro related
For MS, look up Terry Wahl. There was also a Cellist who had supposedly reversed MS
That is alot to process for you all, I'm sorry. Do you all live in the same house? Have you had your house checked for mold? Mold can cause a lot of neurological and physical issues.
Not what you're looking for?
You may also like...
Are there any people with Parkinson's who have been diagnosed as being celiac?
I am looking into the possible role that gluten may have in the onset of Parkinson's. if you have...
What were you told when you were first diagnosed with Parkinson’s disease?
I was diagnosed with Parkinson’s disease in 2018, but had many of its symptoms years before that....
Breathing problems in Parkinson’s disease: a common problem, rarely diagnosed
Im 52 and down to 48% vital lung capacity due to PD.
IBreathing problems in Parkinson’s disease: a...
Can Exercise Help People with Parkinson’s Disease? 5 Things to Know
According to a study that tracked 237 patients over a five-year period, those with early-stage...
UCB Announces Global Partnership to Bring Disease-Modifying Therapies to People Living with Parkinson’s Disease
UCB to partner with Novartis on development of UCB0599 with an opt-in to develop UCB7853, two...
Related Posts
Help Congress END our disease! Participate in a 1-on-1 meeting with this Congresswoman
Diet and auto immune disease.
HYPERHOMOCYSTEINEMIA AND ITS TREATMENT IN PATIENTS WITH PARKINSON’S DISEASE 2016 (Treat it with folic acid?)
Statin could boost treatments for people with Parkinson’s disease – Oxford
Brother in law with Parkinson’s disease need help for him and my sister
