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So, I have a friend .........

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Posted 11/12/2021 11:00 AM (GMT 0)
i mentioned in another thread that i have a friend who was a cross country runner - and now has significant troubles with mental health OCD, Depression, high risk behaviours, as well as digestive issues, weight loss, muscle spasms / cramps. Has been hospitalised with seizures, apparently due to electrolyte imbalances ( poss due to the drugs he was on ....but then seizures are common in lyme etc). pharma psych drugs don't seem to help him much - he has tried many over the course of around 20+ years though i have only known him for the last few years.

i know i am of course looking at the world though a Tick borne infection type lens - where i see the possibilities for this to be the cause of all sorts of illnesses - and this might well be a distortion - and his illness could well be due to an entirely different cause.

but at the same time he is really struggling with his mental health and i am torn between telling him i think it might be at least a possibility worth looking into - as it might actually be a cause for hope and improvement ( he is often in a dark place and sees no possibility of ever getting well)

but on the other hand i don't want to lead him down the TBI rabbit hole - if it is unwarranted - or if in fact might be something he finds overwhelming or even more depressing.

i am not yet decided on which direction to take - its a tricky one …..

open to thoughts and ideas

thanks folks!
Posted 11/12/2021 11:50 AM (GMT 0)
That's a tough one Garzie.

Maybe the concept of a herx could play a role here.
To find out if he ever had one, you could say something general like:

"Do antibiotics ever make you feel off? They sure do for me".

To which he might say:
- No they don't really make me feel any different.
or
- Yes!!!!! They make me feel awful every time!!

Then you have one piece of extra information to make a decision with?
Just thinking out loud, not sure if it's helpful.
Posted 11/12/2021 12:00 PM (GMT 0)
I'm a believer in the saying: "Better the devil you know than the devil you don't."

* If he explores the possibility of a tick-borne illness and finds this is (or, might be) contributing to his health problems, then he has something to work toward treating.

* If investigation reveals it's NOT likely a tick-borne illness, then that's one more thing he can scratch off the list of possibilities.

Basically, he can try something or do nothing. The former offers a chance, while the latter guarantees more of the same suffering.

I think how the idea is framed and delivered to your friend will be critically important.
Posted 11/12/2021 1:14 PM (GMT 0)
Garzie,

Maybe you can ask some general probing questions like:

Are you satisfied with the medical answers and help you are getting, or do you believe you haven’t gotten the right answers yet?

Have you ever thought about seeking help from alternative medicine?

Did you ever have any tick bites or rashes?

Like you said, it may not be tick borne infections.

If he’s an outdoorsman and a risk taker, he could have some type of parasites alone or in combo with other infectious diseases.

You mentioned seizures that could have been caused by drugs he was on. Are you referring to prescription drugs used as prescribed or recreational drugs or drug abuse of any kind?

There have been people who have been here over the years where I wondered if drug use had possibly triggered their illness. I never brought it up, because it’s such a touchy subject. I am sure it can damage people’s bodies and brains. If it causes brain damage or inflammatory response, they could possibly end up with perpetual symptoms related to that. I doubt the medical community has much to say along those lines, but it’s definitely in my line of thinking.

It could be mold or other environmental neurotoxins.

Did he ever have a brain injury of any kind?

If you do ask questions, and he seems like he’s interested and wanting to know more, you could ask further questions especially to find out what happened just prior to the start of symptoms. Was it sudden onset? Did symptoms progress slowly? Did he change housing, job or school locations? A trip? A known bite or rash of some kind? Exposure to a toxic environment, even an isolated one-time event? An accident, injury, concussion?

All I can say is slowly feel him out to see if he wants help finding answers and the willingness to shift his paradigm of the realities of the medical industry.
Posted 11/12/2021 1:19 PM (GMT 0)
I had a friend who kept telling me or my mother that I should see the Functional MD her daughter was seeing. First, I was told her daughter had Lyme. I was locked into thinking that you had to have a tick bite and a bullseye rash to have Lyme, so I was sure there was no way it was Lyme. Then I heard her daughter had mold. I was like, Mold? I thought she had Lyme disease.

Took me about a year of prodding before I ventured to that doctor and uncovered through lab testing the surprises of a lifetime - mold AND Lyme.
Posted 11/12/2021 3:41 PM (GMT 0)
Thanks for the thoughts and ideas.

I perhaps should have mentioned that one of his main coping mechanisms is denial.
In that if i even ask. “How was your week?”
He will generally avoid answering the question.

Its a bit frustrating but when i have asked him about it he says that for him - talking about his health - or even how his week has been somehow makes his struggles seem larger and more “real”

This of course points to the denial i mentioned. Which is not my way of dealing with things.

So having a proper discussion about his health pretty much never happens - the bits i know are just snipits i have picked up over the years.

As far as i know his troubles started in his teens but have been worse in the last 2-3years.

He is a really decent generous guy and i would like to help but i cant see a way of raising the topic to him without either turning him off all together or freaking him out.
Posted 11/12/2021 3:58 PM (GMT 0)
How about:

I have been through life changing illness myself and I have learned how to get better. If you ever want to talk more, I can help.

Then leave that in his court. You can repeat it now and then.

You could drop some hints by sharing bits of your own symptoms and experience without pressuring him to talk. A little at a time.
————-
Here’s the thing. For the most part, active members on this forum know about far more than just tick infections. We know the failings of the medical system - both conventional and alternative. We know about helpful practitioners all over the world, and not just ones who treat Lyme but ones who decipher and treat chronic illnesses and bodily dysfunction of all kinds. We know how to ask the right questions and make educated guesses to help people check out different things. We know detox methods, diet solutions, and supplements that are likely to help with xyz symptoms/problems. It’s what we do every day for each other.

People outside of this world, for the large part, have no knowledge that such things exist. They simply go to doctors thinking there’s no other reasonable options. Whatever they do know about any medical help outside that box is probably at least half-truths at best and likely negative. Because of this, their minds can’t translate that what we know or experience can solve any of their problems.

Like my ignorance about how you get Lyme and what the real symptoms are kept me in a mental block. I was searching in the wrong direction and sitting in fear doing nothing for 6.5 years while feeling my body increasingly going rogue all the while. All because of ignorance.

Post Edited (WalkingbyFaith) : 11/12/2021 9:11:27 AM (GMT-7)

Posted 11/12/2021 4:13 PM (GMT 0)
P.S. - When I read the story of your friend, Dr. Mary Ackerley came to mind.
Posted 11/12/2021 4:18 PM (GMT 0)
Rather than discussing it with him, perhaps putting your concerns in an e-mail or letter would be easier for both of you. That way, you don't have to worry about rebuttals on-the-fly and he doesn't feel the need to be defensive or try to deflect. In your note, you could assure him you will not bring it up in person, so he doesn't have to worry about if/when something might be said. But, you could mention that you're open to discussing further, if he so chooses. Express your concerns for him, etc. It's likely that he would read the message more than once.

I can somewhat relate to your friend avoiding answering the question "How was your week?" I don't like questions like "How are you doing?" and "How's your day?" I feel like there's no good way to answer. The honest answer is usually "crappy." But, in addition to sounding negative, I don't think most people really care enough to hear the truth. I think it's just something many (not all) people say/ask out of habit.
Posted 11/12/2021 7:33 PM (GMT 0)
thanks WBF - he knows about my illness - and because he has been through strange things himself - he is quite accepting of it - and i don't mind talking about it - but it doesn't seem to create any real curiosity in him - or for him to compare any if his symptoms - again part of the don't talk about it and maybe its not happening type thinking i think - he just isn't curious about his health like a lot of us here are.

Dude - i had actually started writing an email - but by the time i had put in print why i thought it might be worth him looking into - its pretty long.

i guess the biggest risk is that he files it under - "that guy is crazy" "he thinks everything is Lyme disease"
which i can quite understand
perhaps i should start with that

ref people asking how things are - i tend to take the opposite approach - i generally briefly tell them
-if they were not interested they have to listen anyway - which i guess serves them right for being superficial
-if they were they get an honest response - which was what they wanted
i see it as a win/win smile
Posted 11/12/2021 8:57 PM (GMT 0)
From all the symptoms you mention, it seems to lead back to what I would ask doctors who scoffed at Lyme after I was finally diagnosed after 11 years with three positive Lyme bands and many symptoms - "So what else can this be?" They would then muddle their way around an answer.

After this long for your friend, it seems logical to test for Lyme, but your point about "leading him down a Lyme rabbit hole" is a good one. Yet, at the same time, it seems all avenues have to be explored, which, of course, is up to him. WBF's suggestion on maybe how to approach it sounds like a good one.

With all our different personality types, it will depend on what type he has - is he like most of us on here who want to search for answers, or someone who would be skeptical of answers that aren't always solid, like Lyme?

Final thought would be wondering if he is mentally able to make a decision like that, based on psych symptoms (which doesn't mean he is crazy).
Posted 11/12/2021 9:27 PM (GMT 0)
thanks RW

he is quite lucid and rational most of the time - quite sharpe in fact on many things - but like so many of us has his blindspots - i think he is a long way from considering there might be a treatable cause for his mental health issues. i think, in his mind, its been there since his teens, is just the way he is, and therefore will never change. so i don't think he thinks about solutions.

he basically tries to distract himself from thinking about them or from spending time alone where he might think about them.

i have got him taking walks in nature - which he says helps more than most of the psych meds he has tried -

beyond that though he seems to prefer not to think about it or talk about it - and just goes through whatever regime of psych meds they put him on - which often seem to have radical side effects - like his face swelling up to 2x its normal size

its a shame - he's a really nice guy - i got to know him after he did me a huge favour out of the blue - not too many people like that around.
Posted 11/12/2021 11:23 PM (GMT 0)
Dr Mary Ackerley, who I mentioned, is an integrative psychiatrist who is mold and Lyme literate. She’s one of the founders of ISEAI. She can do long distance consultations and work with his doctor, I believe.
Posted 11/13/2021 11:35 AM (GMT 0)
Great advice in this thread.
Just wanted to add that you sound like a great friend Garzie.

Also, this gave me a chuckle:

"that guy is crazy" [...]
"which i can quite understand"
"perhaps i should start with that"

Of course I left part of your sentence out, but that's how I read it and it made me laugh 😀.
Posted 11/13/2021 11:57 AM (GMT 0)

WalkingbyFaith said...
Dr Mary Ackerley, who I mentioned, is an integrative psychiatrist who is mold and Lyme literate. She’s one of the founders of ISEAI. She can do long distance consultations and work with his doctor, I believe.

thanks WBF _ i looked her up - sounds like they might be a good match for him - he is still very much in the conventional medicine world though, so not sure how receptive he would be - good to have an option that does telemedicine though.


btw - the medical system works v differently here in the UK for most - the vast majority of people have all their medical care through the national health system - at least for all PCP's - there is of course private medical doctors - however, these all operate inside the same system ( typically doing work for the NHS as well as private) - so they are governed by the same bodies and follow the same rules and training etc. any doctors that step outside the current guidelines in treating chronic disease are then at risk of having their licence revoked by the medical board
so in essence we only have the worst of conventional medicine - and not the variety of approaches and perspectives that are available in countries with a private medical system - and you are a customer - able to shop around and pay for the type of service your want.
its mainly why i opted to self treat -
i only mention it to help explain why it might be hard to find a Dr to work with another abroad
Posted 11/22/2021 3:25 AM (GMT 0)
Any updates on your friend Garzie?

That's good to have that option WBF gave you.

Dr. MR offers one on one video chat sessions too.
Might be another option if it turns out to be Lyme.
Posted 11/23/2021 4:27 PM (GMT 0)
hi Rainy

i've not broached the subject yet - he moved around 4hrs away and have only spoken to him once in the past few weeks and the timing didn't seem right - he was on an even keel but only just and in a kind of just coping place so i didn't want to raise anything that would rock his world at that point.

it may take a while .....
Posted 11/24/2021 12:10 AM (GMT 0)
Ah no worries Garzie ! Thanks for the update.
I also read in the other thread that you have some changes going on yourself, if I recall correctly it was moving to a new place, so please take your time and don't forget to take care of your own needs as well 🙂
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