Patients Sharing Stories
January 20, 2017
Ready to go....
PW- 45113, 27394, 44033
Will be sharing this with the patients as you desired- finally got it all together in one spot. Too large of a file to share with you the other way. Thanks for writing it!
Letter to Parents From Daughter
Asking Not For Financial Support
But For Their True Support
TC- Mom and dad will be on my phone appointment with dr. XXX tomorrow. Mom asked if the purpose was to go over test results. I saw this as an opening and I'm going to share what I wrote in case you think it may be helpful to someone who is going through something similar.
Here goes:
No, the appointment is not about testing. It is to discuss my response to current treatment and to ensure that I'm on the right treatment plan. I guess you could say it's analogous to seeing a psychiatrist to discuss symptoms and adjust meds if necessary along with trying to get to the bottom of this--it's like peeling off many layers of an onion since this is all so complex. Peel off one layer at a time, then go to the next layer.
So I'd like you to be open and honest about your concerns and questions, such as when you suggested that this could be due to bipolar. I know we have differing views, *****but I also know from the bottom of my heart you and dad just want what is best for me and want me to get well ******as do I. ******
You also mentioned that he is going by the symptoms I report to him. I know you are just concerned about the effects of the meds and ensuring I have proper diagnoses so we are treating the right conditions.
Remember, all my bloodwork continues to be fine with regards to my kidneys, liver, etc.
I think it could be helpful to think about the following: Dr. **** can't see what is going on inside our brains. We report our symptoms and he treats accordingly.
If we are depressed, he puts us on antidepressants. If we have anxiety, he puts us on anxiety meds. You can't "see" it if someone has a headache, but that person knows they have a headache.
Treat the patient.
***I think it's very important for you and dad to watch the movie, "Under Our Skin" with me. Dr. ****, Dr. ***, and Dr. ***have *all* recommended we do this together.
I think it will give you a better understanding of these diseases, a better understanding of the treatment that goes along with it, and put your mind at rest more. *** It's kind of pointless to question a treatment plan and be at these appointments if someone isn't educated enough about the diseases.
PLease DO NOT take that as a criticism, because that is the last thing I'm intending. I am so grateful you and dad take the time and effort to be in on appointments.
I'm not being ugly by any means, and I've said it tons of times and will keep saying it: IM SO GRATEFUL YOU AND DAD ARE HELPING ME AND SUPPORTING ME THE BEST WAYS YAll KNOW HOW. I have zero doubts about that. IT DOES NOT GO UNRECOGNIZED BY ME BY ANY MEANS.
I'm not asking y'all to read tons of books and do a bunch of research. I'm asking y'all to have a better understanding of what is going on with me and my illnesses and see how the treatment plan is designed to get me the proper care I need. If one doesn't know much about the diseases, one can't know much about if the treatment plan is proper.
***And in continuing to stand by my side, I do know that having a better understanding will help y'all *further support me and build your toolkit to help support me the best way possible.*
There isn't a handbook for this, unfortunately. Y'all have come to be by my side, and we are in this together, and I thank you and dad. Will you and dad take a couple of hours to watch this movie with me?
I also have a couple of people from my support group who have offered to talk to you and dad about their experiences. One person is completely well and thinks it could be important to share how she got well and that Lyme sufferers DO WANT to get well, and many can, but only with proper treatment.
Another person is still ill, but can provide you with her story.
So please be honest with your questions, try and make them succinct, and have a bullet point list ready.
If you question dr. XXXX abilities or treatment plan and don't agree with him, please tell him. we won't get anywhere with this if we aren't honest.
We are all in this together, and I'm sorry about that bc I *hate* to see you and dad worry about me. It truly hurts my heart bc I just want y'all to be happy. 😢
Let's agree to try our best to remain calm and be respectful of each other's viewpoints.
I know I react strongly to some things you say, but it is only bc I've educated myself immensely and received feedback from doc's like dr. ***, dr. ****, and dr. ****.
And these are complex illnesses, so I continue to educate myself and then ask dr XXX if the education is accurate.
It's very painful to "know" that I do have Lyme disease and other tick-borne coinfections and be doubted. I am very aware that there are and could be other things going on with me besides Lyme and coinfections.
My blood smear clearly shows I have a malaria-like illness bc it shows the ruptured blood cells (the Babesiois). Babesiois is a coinfection from ticks.
I can send the pic. I'm very aware that I'm experiencing psychiatric symptoms, too, but this isn't in my head/a mental thing other than infection literally being inside my head.
My insurance would have never covered the PICC line and antibiotics had the Lyme and coinfections not progressed to my brain and caused neurological symptoms.
Insurance companies hate Lyme disease and try to deny as much as possible bc it is so expensive. So it is also telling that I do have Lyme bc insurance covered my expenses.
Also remember that Dr. XXX said that Dr. XXX is not a snake oil doc out to get money, and he also said Dr. XXX is a very well-respected LLMD.
Like you said mom, many people are fortunate enough to get well quickly. Most of these people were fortunate enough to catch their Lyme disease early and didn't already have delicate immune systems or didn't have coinfections. There is also false information out there.
We have to think about how I've been sick with migrating symptoms from one area of my body to another (bladder, Ibs, joints, etc.) for about ten or more years and I received many misdiagnosis that coincided with the particular symptoms at the time.
This is extremely common with Lyme and coinfections. Lyme is called The Great Masquerader because it does a great job of masquerading what is really going on and masquerades itself into many "illnesses," and hence, misdiagnoses. Unfortunately, it's going to take a while to get well since I have been sick for so very long. The longer the infection goes untreated, the sicker you get. Plus, if you have coinfections, you are sicker than people who only have Lyme and it is harder to treat and takes
longer.
Also, CDC guidelines for Lyme disease were developed for surveillance purposes, not diagnostic purposes. In fact, CEnters for Disease control recently changed the diagnosis to a clinical diagnosis rather than a laboratory diagnosis and states lab tests can be helpful at times.
When I first got my Lyme diagnosis, I had 2 out of 3 IGM bands, and some IGG bands. You either have to have 2 out of 3 IGM bands or 5 out of 10 Igg bands to be counted as a positive report for *surveillance, not diagnostic purposes* by the CDC.
Unfortunately, it is two-tier testing and the first doctor didn't do the two-tier testing on me, so I can't be reported. You "are supposed" to do a western blot "only" if the other test (ELISA) suggests one might have Lyme. If you have a positive Elisa, then it is suggested it be supported by the western blot, which is a more sensitive test, but still flawed. Here is their updated version of things regarding clinical/lab diagnoses.
Also, I recommended someone who thought her husband had Lyme go and see dr. *** (from the Lyme support group).
Dr. *** told them that although he did seem to present with some symptoms and his lab tests may indicate Lyme, he wasn't sure and didn't want to put the husband on antibiotics bc he thinks something else may be going on.
I don't have all the details from the couple. So dr. XXX isn't just diagnosing people with Lyme left and right and pushing antibiotic therapy on everyone.
I want to be clear that I am not lecturing or coming down at all on y'all. I'm truly grateful and fortunate for you and dad. I cry as I write this because I don't know what I'd do without y'all, so thank you.
What I'm trying to do is educate so *we can do what is best for me to ensure I get well. I desperately WANT to get well.*
I want to get back to the old ***** (my name) and live my life, not just exist.
Mom, you've commented on how proud you are that I exercise on days I feel well. It's still not easy to exercise on my good days. I'm grateful you recognize that I'm trying really hard, and I know dad knows I'm trying hard too. I wouldn't force myself to exercise if I didn't want to be well. I'm not crying wolf or trying to get extended attention.
I know this has been a long text, but I feel it's important for us to address concerns to ensure I get proper treatment to get well. Thank you for taking the time to read this.
Thank you, thank you, thank you for all you and dad do for me. You two are two blessings that don't go unnoticed by any means.
All my love and with the best intentions,
Your Favorite Middle Daughter😉😘😘😘😘😀
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I've told them almost all this info before. I've asked them to watch "under our skin" on several occasions, and three doc's recommended they do it too. but I think the info you've provided me with that I haven't pointed out before *may*, (fingers and toes and all extremities crossed,) make a dent.
That psychiatrists don't do lab tests to diagnose depression, etc. , and you can't see headaches. That is another piece of amazing info to be pointed out.
Results of Asking For Support
My family has had a hard time understanding this.
There have been heated "debates," tears, etc. Throughout my Lyme and coinfection experiences, many people on this site have helped me try to develop ways to get through to my family.
I had a phone appointment with my LLMD this morning, and my dad was on the call. I think some headway with my dad *might* have been made????? I will have to see what he says after he talks to my mom. And if headway is made, it can always revert again.
It seemed like my LLMD may have gotten through to my dad some.
XXX & XXX recommended that my parents hear information (I.e., education) from my doctor rather than me. Many thanks, XXX & XXX.
Although they have heard it from my dr. many times, I think I pushed too hard for my parents to try and understand because I want/"need" them to understand so badly. And I think I pushed them away from the Lyme diagnosis further by trying so hard.
So near the end of our appointment this morning, I asked my doctor if he could please spend a few minutes explaining (again), in very basic terms, my case, why I need antibiotic therapy, and the risk/benefit ratio. I was actually able to keep my mouth shut this time when I wanted to stand up for myself (yay, me!!)! Keeping my mouth shut seemed to help more.
After the call, Dad seemed much more receptive. He had originally agreed to only 1 month of Iv antibiotics and said that the month would almost definitely be it. After talking to my LLMD, dad said I could do at least another month and we would evaluate it along the way. However, he hasn't discussed it with mom yet, so who knows (please mom, start being more receptive)????!!!
XXX pointed out something very important that I had never thought to tell my parents. Mom had said, "So you just tell your doctor your symptoms and he goes by what YOU say to treat you?!"
Anyway, the point XXX brought up is that you can't "see" if you have a headache, but you know you have it. When a person goes to a psychiatrist, the psychiatrist doesn't look into their brain to figure out if their patient is depressed, anxious, whatever. The psychiatrist bases his/her treatment plan on the symptoms.
I know I have tried and tried and tried to educate my parents and family, and it seems to have pushed them away. I think I gave them too much info in general and especially with the IDSA/ILADS controversy in effort to try to get them to "see" what is really going on to convince them I do have Lyme and coinfections and need long term antibiotic treatment.
So my point is, it seems that keeping it simple, letting a doctor explain in very simple terms, and making analogies to other clinical diagnoses like headaches or depression, may be more effective when trying to educate SOME people. Or, it may not.
I just wanted to share this information in case anyone may find it helpful in their own particular situation.
I'm hoping that there will be a better breakthrough with my parents after this.
Please keep your fingers, toes, and all extremities crossed for me that this is a breakthrough for my family in understanding these diseases/me better. You can braid your hair, too if you think some more crossing may help. Please send positive vibes, prayers, or whatever it is you do.
Much love to the wonderful people in this group! Thank you to everyone who has guided me and supported me throughout this.
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TXXX, I'm sooooo sorry. I know how terribly painful this is. I wrote many posts similar to yours for many months while my family relations were very, very strained.
Although my mom and dad have come around some, I think it is more they know not to suggest this is a mental/in my head thing bc it always ends in a huge argument and crying and they see the progress I've made since starting antibiotics.
They went to two psychiatrists with me who told them I really have lyme and it wasn't in my head and they STILL weren't convinced. They wouldn't educate themselves or listen to me when I tried to educate them. It brings up anger just thinking about it.
One sister still tells me it's in my head. It made me so mad that I called her a name, and that is very, very uncharacteristic of me. Like super uncharacteristic. Bottom line is I was so mad bc it hurt soooooo much.
You are not alone in this. I'm so sorry that your family doesn't understand the reality of the situation and sorry that you hurt.
The good news is you found a great group of people to support you. Hugs.
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XXX, I understand your pain. My family didn't believe me for about 8 years.
I kept getting misdiagnosed, would have some treatment for the misdiagnoses, and kept getting sicker. From their perspective, I was a hypochondriac because I was getting "treatment" for my "diagnoses" but kept deteriorating. It wasn't until I got even sicker and it effected me more ( although before the "more," I was sick enough), that they believed/believe I'm sick.
I lost several friends bc I have been trying to get well. As you know, that requires major lifestyle changes.
To say this is terrible, every little and big aspect of Lyme and cos, is a gross understatement.
Know that even though you feel alone, as I have felt and feel many times, you are not alone. What has been comforting to me is connecting with people on lymenet who "get it." Someone once posted "you don't get it 'til you get it." I've developed a few close friendships with people on here whom I communicate with regularly.
You can always pm me. I get it. I've been beyond hopeless before and thought I'd never get well. I've made a lot of progress, but I have a good way to go. There is always hope, even when you feel from the deepest depths of your heart that it is hopeless. Keep fighting.
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XXX, it's normal to be scared and feel the way you do in this mess.
Know that other people on here know what it's like for people to think you're not sick when you are terribly ill. It is very hurtful. My family didn't think I was sick for 8-10 years.
You are not alone and you have many people on here to help you get through this.
You can always PM me if you need to vent or have someone "listen."
I've actually made a wonderful friend on here, and we email each other and talk on the phone often despite the fact that we are many states away from one another. We are a great support team for each other. We vent, laugh, distract each other from tough times and are just lucky to have become friends.
Even though you may feel like you don't have the fight in you, you do. You are in this support group trying to get help. That in and of itself is a way of fighting to get better. I know it's tiring, exhausting, and miserable to put it mildly.
You ARE a warrior and can do it. We will help you through this. So many wonderful people on here have helped me educate myself more and are so supportive.
All the best to you.
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I am so sorry you are going through this. I was in the same position for about 8 years, and my family thought I was making everything up.
It took 2 another two years to convince my family I have Lyme, and they believed many "top docs" who said I didn't have Lyme in the meantime.
It wasn't until I started making progress with Lyme treatment that they started to believe that this whole Lyme thing is real. Although I've made progress, I have a long road ahead of me.
I know how painful it is when your family doesn't believe you. If you want to PM me and vent or get your feelings out, I'm here for you.
I agree that "Under Our Skin" is a great resource. I could never get my family to watch it (to this day), but I hope your family will. Fortunately, my family came around. I hope your family does too.
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6/28/16