Sister has vague illnesses for 10 years, refuses treatment, mom plays along

On the most basic level, I am trying to figure out where to turn to get help for my mom and sister.

My sister has been "sick" for over 10 years. It's been a lot of vague symptoms, and they do go to doctors sometimes, but if they don't like what the doctor has to say, they dismiss it and go somewhere else until they hear what they want to hear, or just forget about it and come up with a new ailment to obsess over. She supposedly has "chronic" Lyme disease which is causing all kinds of other problems for her, and she is not being properly treated. The ailments and treatments or lack of treatments are always changing, morphing, falling in and out of favor with my sister, who is continually creating new and worse symptoms, and through this, actually making herself weak and unhealthy.

My sister has said she does not like living like this and wants to get better, but there are always all kinds of excuses and barriers to this that she creates, which to her are too difficult to overcome, even if she knows she could get better if she overcomes them. She has been to various specialists and actual medical doctors, they give her a prognosis and prescribe a treatment path. She then spends hours on the internet digging for all of the negative aspects she can find of whatever the treatment is, and always ultimately decides she will not move forward the treatment the specialist has recommended, because she knows more than doctors, obviously. I have deduced from conversations with my mom that doctors have said, in so many words, "I'm sorry, I cannot help you anymore," because they don't go along with the treatment. There is a repeated cycle of going to a doctor, the doctor saying, "You need to do X to get better," then my sister and mom telling the doctor, "We researched X, and we do not think that is the best way to treat her, thanks anyway." My sister does research on the internet, self diagnosing and self medicating because she "doesn't like chemicals," i.e. drugs or medicines that could help, favoring "natural" treatments which do nothing.

Her first symptoms were back pain. It was discovered that she had scoliosis. She went through a few different braces to attempt to correct it, but she found each one of them to be uncomfortable in one way or another. I remember it being a serious project getting her in and out of a rigid plastic one - my mom had to cover almost the entire apparatus with adhesive moleskin like you'd use on your feet or shoes to prevent blisters. Eventually she stopped wearing the braces altogether, and mentions of the scoliosis are now fairly rare.

Then the vague, inexplicable fatigue started - basically "chronic fatigue syndrome" - leg pain, joint aches and pains, muscle aches. They ended up diagnosing her with Fibromyalgia, but to my knowledge, no actual treatment has been given, since she refuses it because it involves medication. She began getting headaches and becoming less and less active, only coming out of her room to eat sometimes. My mom now thinks she has Delayed Sleep Pattern Syndrome, which may be real, but they are taking no action to correct it.

She also has developed "leaky gut syndrome,” which they claim was somehow caused by a brain issue after possible whiplash that happened when she was in a car that was rear-ended. Through all of these other things, her stomach has also become extremely sensitive, and she survives almost solely on a few vegetables, and free-range chicken that my dad has to drive 45 minutes to obtain directly from an all-organic farm. My mom's rationale behind this is that she has all kinds of toxins in her body, so everything she eats and drinks must be as pure as possible, to avoid introducing additional toxins.

The Lyme disease seems to be the only disease she has that is supported by hard evidence from tests. From my own quick research, I found that an antibiotic treatment can help, even if the disease has been untreated for years. I asked my mom why they have not gone this route, and she says that antibiotics make my sisters stomach hurt. From what I understand, they could try something that might get her back to normal, or close to it, but are not because she might get a stomach ache. The conclusion I draw from this is that she would rather stay in her room for the rest of her life, basically in hospice care, because she doesn't want her stomach to be a little upset for a little while. That, to me, is insanity.

It has reached the point now where my sister is deathly afraid of anything "contaminating" the house, forcing my mom to do tasks in a very specific order that she dictates, and making her wash her hands multiple times throughout the process before and after touching different objects or surfaces. My mom complies to all of this, even though she is frustrated by it. If she misses a step or does something "wrong," it is a total disaster and causes a 1-5 hour long process to correct, sometimes involving having to go to the store to buy brand new things, since something got "contaminated." It's all completely irrational to a logical person, including my mom, who complains about it, yet caters to these whims of my sister. She creates new procedures and comes up with new and different things that are "contaminated" randomly and frequently. As an example, one day she might suddenly decide that a certain chair is particularly "dirty," and it must be removed from the house, when she may have sat in that chair the day before. That did not actually happen, but it is very similar to the things she does.
This behavior is relatively new, and all stemmed from her claim that it is painful to take a shower. The rationale is, because of the pain, she washes herself as infrequently as possible, and because she does not clean herself, she must stay as free from contaminants as possible.

Since she is 24, my parents cannot simply take her to the hospital for treatment, because she will refuse it, as she has the legal right to do so. I have suggested getting power of attorney over her to force her to get proper treatment, but that suggestion is met with the argument that she has to be either unconscious/in a life-threatening situation or deemed mentally unstable in some way. This will never happen, because she refuses to be evaluated by any professionals. She is very intelligent and completely cognizant, so she has the competency and capacity to refuse treatment, and there seems to be nothing anyone can do about that. No one can enter the house other than my parents, and my sister will not go anywhere, so it is impossible to get her evaluated to know what’s wrong with her brain.

I believe my sister wants to stay this way for some reason, and my mom is assisting her in this goal, probably inadvertently, but it is very sad to watch.
My mom caters to her every need. The two of them are definitely extremely co-dependent. My mom has always been just a mom, and she seems to have a very strong need to care for someone or something at all times. My sister is the youngest of the family, and probably just wants attention, no matter what it is, so they are prolonging all of this nonsense probably without even realizing it. If the symptoms go away, my mom will have nothing to do. She doesn't seem to have any hobbies or interests, is very out of touch with the real world. Maybe she is afraid of change or breaking out of this cycle. My sister also doesn't really know what its like to live in the world at the age of 24.

We (my dad and myself along with my wife) want to stage some kind of intervention to put an end to all of this and help them get better.
What type of medical or psychiatric professional should we contact to intervene with us?

Our loose plan so far is to find someone to bring into the house to show them what's going on, but we don't know who that someone should be. We know that my mom and sister will go completely ballistic when we walk in the door with an actual doctor, and that is kind of the point. My mom said my sister would have a panic attack or even a heart attack if my mom simply stopped doing all these insane things she does for her because the stress would be too great, so bringing in a third party would be just as bad, but I think that's a risk that needs to be taken.

Hello, BrotherTryingToHelp.



Sincerely,

Rainy

Brother,

It's admirable that you want to help. These are complex dynamics and issues, it seems.

I think a psychiatrist is the best place to start. You'd need a whole team of various specialists to make a "house call" - I don't see that happening.

Clearly, Mom and Sister are ill. That could be mental illness, physical illness, or both.

We can't diagnose here but we are here to support you. A psychiatrist can evaluate and refer out to other medical specialists, as needed. Psychiatrists can recommend therapists. I think that could serve as an excellent adjunct to their treatment plan. You may learn you cannot solve their problems. Regardless, I hope it goes well for you and your family.

Take care of you, too. This is stressful and your health is important.

Sounds like a case for Dr Phil. Have you tried writing to him? Sometimes he does home interventions.

Really don't have any idea. Maybe dad can take mom on a two week vacation from it all and let sister cope on her own, it seems doubtful that anything bad will happen to her. Then maybe the insanity of it all will hit your mom when she returns.

I would go on the Anxiety and Depression Association of America (ADAA)'s website. Only a professional can diagnosis, but it seems she has OCD symptoms. Mom is making it worse trying to appease her. The ADAA has a list therapists from all over the country. Hopefully there is one near you. I would start with you going ( take Dad and wife too!)and talk to a therapist that specializes in OCD and other anxiety disorders. Some therapists do go site--it often depends on the insurance company.

At least you would have some clarity with some of the symptoms and perhaps a game plan. I wish you well!

I was diagnosed with chronic Lyme. I'm not attached to the diagnosis, and it's something of a catch all and more investigation is needed to get real clarity on root issues. There are a handful of issues that tend to cluster together -- chronic infections like Lyme, heavy metal toxicity, exposure to toxic environmental mold, severe nutrient depletion, to name a few. Seems a lot of suffering can come from dysregulation in the endocrine system especially HPA axis and thyroid.

Leaky gut, yep this could also be a key problem. When the gut lining is damaged by antibiotics, NSAIDs, processed food, pesticides, etc you're looking at potential systemic collapse. Its our primary defense against the outside world. It's where many neurotransmitters are synthesized. Sick gut = sick brain.

The mainstream medical system is not set up to deal with these complex, chronic illnesses. My advice is stay away. I have heard many stories of terrible treatment from ignorant and arrogant MDs in cases like this. Typically the best you will get is some sort of synthetic drug cocktail that will knock down symptoms, while various disease processes continue unabated. Good chance you will also get a lot of "it's all in your head" responses. Lyme is also controversial and politically charged. Many mainstream MDs will deny its existence and will get quite hostile.

As for psychiatrists, i can't think of a worse option.

Naturopaths and Functional Medicine MDs are good place to start. Practitioners of chinese medicine are also worth trying.

Lyme disease is known to cause chronic inflammation of the brain and nervous system, which can lead to pretty severe psychiatric symptoms. Mercury toxicity also can cause terrible brain symptoms. I used to have stable mood, reasonably robust mental health, and excellent physical health. Now i am a mess on all levels.

Not saying your sister does not have psych problems that are independent of these physiological conditions, but when you have a large constellation of symptoms, then i think treatment needs to be holistic and comprehensive. Not sure about the germaphobe stuff. That is a bit concerning. Maybe an OCD type thing? If it's new, I'd wonder what has changed in her brain.

Is it possible the research she is doing is legit and she is refusing the treatments offered based on sound reasoning?

I also suggest finding a biological dentist to evaluate oral health.

You might find this interesting:

“Doctors can destroy patients by telling them that a true, physical disease is all in the head,” says psychiatrist Virginia Sherr of Holland, Pennsylvania…In the Lyme hot zone of Bucks County, she sees a new case of Lyme encephalopathy every week. “I am a psychiatrist. These are not people who are referred to me because they have Lyme disease – they are sent because they have panic attacks, hallucinations, obsessive-compulsive disorder, and depression. They are in agony – not only neuropsychiatric pain, but physical pain as well. They have never been hypochondriacal in their lives, but that is how they are labeled. They are encephalopathic, but they have been told they are not by physicians who wouldn’t know a case of encephalopathy if they fell over it. They are physically sick, but are blamed by doctors who say: ‘You belong to a cult if you think you have Lyme,’ or ‘You look okay to me.’”