Fear of Medicine?

Hi everyone! This is my first post here and also my first post sharing any part of my story. I apologize if its long and appreciate the time people have taken to read it.

My main reason for posting is to find out if anyone else struggles with taking their medicines or other forms of treatment due to fear of how it will affect them.

*There are some mentions of self harm behavior, please read only if you're comfortable with those topics*

I've probably had Lyme since I was 10 years old. I got "mono" in 5th grade and then my life emotionally, academically, and physically went downhill. My Lyme started out neurological. I was informed by my LLMD that children more often present with neurological symptoms before physical. I had asked about this because my sister who is 6 years older than me got Lyme at the same time, but received all of the physical symptoms and not the neurological. It took her 5 years of IV antibiotics and 1 relapse later to get better. I'm very proud of her. However, her Lyme is how we overlooked my Lyme, not understanding how different the symptoms can be between people.

Depression and Anxiety and ADD were my first symptoms. By middle school it started to affect my gut leading to SIBO and I started getting POTs symptoms around that time and was unable to stand or do anything extracurricular.

By highschool as a freshman my mental health got so severe. I frequently self harmed, developed an eating disorder and tried to end my life more times than I can count on my two hands. I was too numb and in pain emotionally to even cry any more. I had to take gym online partially to go at my own pace with not being able to stand, and also out of embarrassment for the scars on my legs. I was often pulled out of school my freshman year to be under supervision by my parents for my safety. I also attended out patient rehab for my eating disorder as my kidneys were starting to shut down.

I struggled throughout highschool academically from brain fog unknowingly and frequently missed class. Not sure how I graduated. I could not remember anything that was being taught to me. A teacher talking to me more often than not sounded like the adults in the Charlie Brown movies. Some of my teachers worked really hard with me to come up with ways to assist my memory issues. Others failed me because they couldn't be bothered to help. Unfortunately the grading system at my school was 80% tests, 10% homework, 10% quizzes/labs. Imagine my disappoinment and anxiety knowing I'm going to fail every test I take due to loss of memory and brain fog and not being able to make my grades any better from my other assignments. I constantly felt like a failure because of this disease but had no idea why I was struggling so much. I often just assumed everything was genetic because I have no family history from being adopted and of course never knew I got bit by a tick.

I tried going to college and that didn't work out. Neither did online classes due to a fear of failing. I've been working instead of furthering my education and even got my home health aide certification that I had worked with for 3 years. Eventually I moved onto full time and then my life got turned upside down and I'm now not able to work. I cannot stand up for more than a couple minutes without vomiting and my temperature shooting up to 100.

As of now I am 23 years old and got my diagnosis of Lyme, Babesia, POTs, SIBO, Leaky Gut, C.Diff, Ochratoxin A Mold Toxicity, and some unknown clotting issue that nobody can figure out.

Unfortunately I've hit so many road blocks trying to treat any of these illnesses. My stomach is too sensitive to handle anything oral to be able to treat the Lyme and Babesia. So I have to treat the C. diff and SIBO first and cannot do the antibiotics. I have to do a fecal microbiotia transplant. However, I just got a PE and DVT and have to resolve those now before I do the fecal transplant because doing the transplant while having the inflammation from the clots could potentially overwhelm my body. So I'm stuck for right now just waiting for the clots to dissolve.

I'm posting here today because my hematologist is switching me from lovenox injections to warfarin and I am terrified to try the warfarin and have to manage the INR level. I'm worried I'll psych myself out. A lot of the times I'll have a random pain in my body and freak out it's a blood clot even if I'm taking my blood thinner consistently. I feel like I'll be too anxious about making sure the INR level is correct and worried about if its not.

I'm terrified to try any medication at this point. Over the years I've seen so many doctors trying to get a diagnosis and have been thrown on more pills than I can even remember.

Every time I was on antibiotics for one reason or another I had such an adverse reaction it completely wiped me out. Which I now can maybe contribute to herxing, I just hadn't known that the reaction could be from Lyme.

I tried every psychiatric medication on the market and nothing works without giving me side effects. I cannot take anything with acetaminophen anymore and I used to be able to as a kid.

Its like everything I try gets rejected. A few of my doctors think my liver may not be metabolizing things properly. So now I just have a deep rooted fear of putting anything in my body. I so desperately want to get better but can't when the thought of taking a pill makes me gag out of anxiety. I've tried seeing a therapist and I don't think they truly understand this illness and how much of a mental toll it takes on someone.

I'm about to try taking a gaba supplement recommended by my Naturopath LLMD and LLMD PCP (I have 3 LLMD's). I'm really hoping it helps calm down some of the neurotransmitter activity in my brain.

I'm just at a loss for how to get over this anxiety and fear from previous doctors never giving me the right treatment and my body never handling anything well. I have zero trust in healthcare anymore and the lack of trust in medicine makes it really hard to believe what they are giving me is actually going to help and not make me feel 100x worse. I can't even go into appointments anymore without crying from panic attacks with how much I've been gaslit and told I'm crazy when I've been right about there being something wrong for the past 13 YEARS.

I know I should trust my LLMD's and they are the most intelligent doctors I've ever spoken to in my life. But I'm still skeptical about the side effects of everything even if its natural or herbal.

Does anyone have any advice about the anxiety of this illness and working around the unknown of how you're going to feel?

Unfortunately I've tried picking up hobbies and activities and things to keep my mind preoccupied and distracted but my brain finds no pleasure in anything so it's deemed pointless when nothing is rewarding or fulfilling mentally. I can't distract myself from this anxiety! I'm so frustrated.

Thank you all for your time and responses and I hope everyone is safe and healthy or on the road to recovery and getting the answers they need!!

Welcome to our forum, Aayla

First off I want to say how sorry I am for you to have these horrible symptoms - for such a long time!

One of my symptoms is short term memory issues.
I have been dealing with Lyme/treatment since 2014.
So I do understand your memory/cognitive issues.

Do you feel you are good hands with your llmd’s?
If you aren’t, or you don’t see improvement after giving it a fair amount of time - then maybe you should try seeing one of the most experienced LLMD’s in the US.
I plateaued with my LLND - and then switched to DrJ after 3 + years
I am now back to a normal life.

You have three Lyme docs on it - and hoping for you to see an improvement soon!

Aayla,

First, I am deeply sorry for the pain and suffering you have endured for so long.
You said about your sister - “her Lyme is how we overlooked my Lyme, not understanding how different the symptoms can be between people.” And about you - “I often just assumed everything was genetic because I have no family history from being adopted.”

Even though those things may not be anyone’s fault, the realities of those facts can leave wounds that hurt deep in the soul. I don’t know if you have ever been to any kind of counseling or ever even thought about it, but it might be helpful. If you don’t like the idea of a traditional counselor, their are some church pastors who also do counseling.

Astroman gave a well thought out response. Like astroman, I was also a child of the 70’s and had many symptoms in childhood but had no known tick bites. Trouble falling asleep and staying asleep every night, aches and pains in my legs, joint cracking, headaches, brain fog, less physical endurance than my peers, no energy for extracurricular activities, hearing loss, sensitivities to sound, light, smells, and touch. Spent my childhood with multiple ear surgeries (anesthesia at hospital) and being poked and jabbed by ENT’s and once suffering severe pain from an unscrupulous audiologist doing experiments on me.

Astroman gave encouraging advice about starting slowly and having hope that you will make it out the other side. As to how to get somewhere from where you’re at, the two most prudent things I thought of were:

1. Make sure you are not currently being exposed to mold.
(You mentioned ochratoxin A and the fact that you were working and then something happened. I am guessing maybe you moved around that time or maybe the workplace had mold.)

2. TUDCA
Astroman mentioned this for the liver. This is the one supplement that was a game changer for me. I was super sensitive and very mold toxic and had horrible chemical sensitivities. I did have some symptom flares when I started it, but for the first time, they were followed by improvements in symptoms. Microbe Formulas/CellCore brand was the TUDCA I used.

Praying for you, that God will comfort your soul and heal your body and give you a new life.🙏

Warfarin Is a blood thinner. No it’s not used for lyme. I took it when I had a DVT leg blood clot. Only took it two weeks though, along with a self-administered Lovenox injections. This is standard DVT treatment until your blood thickness is corrected. For those reading that don’t know DVT stands for deep vein thrombosis. I’ve not had a clot since.

My mother took Coumadin it for years. Coumadin Is the most common name brand. Very common medication among people who have clotting issues.

When people do have clotting issues it’s good to find out why.

In my case I did the extra work to find out why, it’s because I have genes that can make it more likely. Did having a messed up body from herxing on antibiotics make my DVD finally happen? Maybe I will never know.

Blood clots are nothing to fool around with.

Pulmonary embolism or strokes can be the result of easily clotted blood not treated.

Post Edited (astroman) : 10/1/2022 10:11:03 PM (GMT-7)

AaylaRev99

Edit because I originally did this on my phone speech thing. The auto correct should be called auto mistake.:

There are theories that lyme or maybe some of these other tick infections can cause thick blood. These are theories, I don’t know if there is concrete proof I’m guessing someone will follow along with that here.

That said, before blaming this on tick infections you need to find out if it’s caused by other things which is what I provided below:

***Advice I can give you is that you definitely need to take the gene test to find out if this is why you are getting blood clots. **Your doctor should know this if they don’t it’s something you can Google I believe there are three known genes that cause clotting issues . These are conventional medicine gene tests that are accurate and covered by insurance if you have it****

I have one and a half of them. Meaning I have double copies for one and one copy of the other. The double copy one is somewhat dangerous. So I keep an eye on it. Now that I know what a clot feels like, I pay more attention.

your meds for your DVT - those are usually a short time until your blood thickness is corrected.

If you had the guts to do the self-administered Lovenox shots, the warfarin is nothing. I hated the shots especially in the gut. My belly looked like I got hit by a shotgun after two weeks lol.

Post Edited (astroman) : 10/2/2022 11:01:26 AM (GMT-7)

Blood clots? Did you take the mRNA shot?

What about Nattokinase as a replacement for warfarin? Lots of results of "nattokinase replace warfarin"

And let’s not try to get people riled up here, Coumadin, warfarin maybe used for rat control but it is not a poison.

Basically if any living mammal takes too much of it it will cause internal bleeding, that’s how rats die from it they flavor it , so they like it , eat way too much of it, .....and then internally bleed.

When its used with humans its dosed in small increments and used along with the blood test for monitoring the correct levels.

If you could trick a rat with flavoring into eating too much natural blood thinner that could actually cause death to them as well, not much difference. If that were the case, that could also be termed as rat poison.

With a DVT you do not all of a sudden want to break the clot free, that can kill you.

It’s gradually done with Coumadin and then you’re gradually taken off of it / if / when the body can control the correct coagulation rate on its own, that’s usually how it’s done.

I’m not guessing here I have experience with this, how many people here have had blood clots that were life-threatening?

Post Edited (astroman) : 10/2/2022 2:59:39 PM (GMT-7)

astroman said...

If you could trick a rat with flavoring into eating too much natural blood thinner that could actually cause death to them as well, not much difference. If that were the case, that could also be termed as rat poison.

That's how warfarin was discovered. Cows were eating moldy hay and dying. It was found to work on rats too.

astroman said...

I’m not guessing here I have experience with this, how many people here have had blood clots that were life-threatening?

I got a blood clot, not life-threatening. I don't know if it was directly from lyme/bart, or indirectly from the endocrine effects, but it caused so much muscle damage that I got a clot in my leg. It didn't embolize and eventually went away.

AaylaRev99,

I just looked at the beginning of your post again and realized many of us responded to details of your story in the remainder of your post rather than the question you asked, which was the purpose of your post. Sorry about that!

You asked: “My main reason for posting is to find out if anyone else struggles with taking their medicines or other forms of treatment due to fear of how it will affect them.”

Yes. I have avoided treating with antibiotics because of fear of how it would affect me (herxing, possible allergic reactions) as well as the fear of taking antibiotics long term and what effects that could have on my gut and my body in general.

I have also avoided certain herbs and supplements for fear of herxing or fear of hives (andrographis). I was extremely sensitive to many things when I began treatment and was very mold toxic and had pretty bad chemical sensitivities. I am not as sensitive now, but I am still careful. Herxes for me can be not only physical but also neuro/psychological. The psych symptoms have been scary at times.

The most sensitive people seem to be so due to any combination of: mold toxicity including living in a moldy environment; have difficulty getting toxins out via poop, pee, and sweat; have MCAS. My subjective opinion is they also frequently have bartonella. Yeast overgrowth, like Candida, could also make people especially sensitive. Yeast, like mold, is a fungi. Fungal toxins and metabolites can really cause a lot of pain and misery for some people.

Factor 5 Leiden is one of the blood clot genes.

Any conventional doctor has access to this insurance covered Gene blood test. There’s also another similar gene and I forget which one that is.

23 and me also picks up Factor 5 or Factor V.

23 and me is only as good as the reporting service that you used to extract the information. The cheap free ones only have basics being anywhere from 50 to 200 genes being reported.

I used MTHFR support V2 from probably six years ago, which at that time was $50, but the report is 35 pages long, with an average of 35 genes per page, So that’s roughly 1200 genes that tells me about, it was well worth $50.

Post Edited (astroman) : 10/12/2022 10:50:39 PM (GMT-7)