LisaK
Frequent Contributor (1K+ posts)
Member # 41384
posted
Some of you know me here. i have been on a journey, just like everyone else on lymenet, and for the last 25 years been trying to figure out what is "wrong with me"
and although I never want to actually believe in the most hypothesized (by me) answer is that all my crazy symptoms and twisty turny roads = LYME.
I have so many diagnoses now and have seen many many drs/specialists.
I hear my last LLMD top doc in my ear tellling me to, "stop looking! It's all the tick diseases!!"
but how do I really know, right??! and now that I have gone so long with all of it and not treated first off and im super sensative and very sick and can't work and all kinds of stuff, do I just keep giong to drs that know nothing of lyme and everything it can cause to happen when left to fester forever,
for all the body symptoms and diagnosed issues I have ? Or do I ignore the heart and ignore the gallbladder and ignore the brain?
these are pretty major things to ignore. but if I go to the corresponding drs they know nothing that ever helps me!
I need support from people like you, yes, but I really need answers. are there any really out there?!
now I have long covid on top of it as seen in some labs I had done. Do I just let my body curl up and decide what to do for itself? keep going to drs that know nothing or not enough to help me ? waste time and tons of money I don't even have just to be told " it all takes time to figure things out" when its literally been 15 years!!
how can anyone find wellness when this all kieeps happening to them? when the spirit is so broken that you arent sure if it's worth living or not?
DO I make another long wait apt. to see another LLMD ? its like starting all over again for the umpteenth time.
I even went to big time dr. J and the e experience was so horrible. sometimes I think God wants me to just stay right where im at and don't even try any more.
-------------------- Be thankful in all things- even difficult times and sickness and trials - because there is something GOOD to be seen Posts: 3558 | From Eastern USA | Registered: Jul 2013
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posted
Borrelia Burgdorfia, the infective agent that causes Lyme disease, is a spirochete.
They are shaped like a corkscrew, and are not dependent on the blood circulation to get anywhere. They drill into tissue anywhere they want.
So, damage can be anywhere. When an area gets enough damage that the symptoms match a named disease, it's given that diagnosis.
There is one other spirochete that is known to cause disease in humans--syphilis. It's been extensively studied.
Once it was discovered, it was called the disease of a thousand diagnoses.
I am with you on the importance of knowing when something is not LD. It's tricky.
I tend to blame everything on LD.
However, I've been diagnosed with FM and CFIDS, and those symptoms aren't going away (yet).
I don't have symptoms of LD right now, but continue to treat for it.
A very reliable documentary is called "Under Our Skin" and is available on YouTube. It explains a lot.
Posts: 552 | From New Mexico, USA | Registered: May 2007
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posted
Hi, Lisa. I'm sorry you are still suffering and still have no answers.
Have you considered trying ivermectin?
There's a guy on Telegram who says he cured himself of Lyme with ivermectin.
His channel is called Dirt Road Discussions and it contains a wealth of information.
As for going to another LLMD .. I don't know. Maybe.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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Ann-Ohio
Frequent Contributor (1K+ posts)
Member # 44364
posted
Aw Lisa, I am sorry you are still suffering...
When it comes to Lyme disease, until they come up with an absolutely accurate test, we really can't know if we still have it.
As for treatment, there isn "one size fits all" answer. I hope you find a doctor who listens and believes you.
I hope you will find some joy in each day.
Remember, we are all here for you and really care.
-------------------- Ann-OH Posts: 1589 | From Ohio | Registered: Aug 2014
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Bartenderbonnie
Frequent Contributor (1K+ posts)
Member # 49177
posted
Many in the Lyme community have felt the same way as you in varying degrees.
I use the Quality of Life scale. (A Measure of Function)
0. Non-Functioning Stay in bed all day Feel hopeless and helpless about life
1. Stay in bed at least half the day Have no contact with outside world
2. Get out of bed but don't get dressed Stay at home all day
3. Get dressed in the morning Minimal activities at home Contact with friends via phone, email
4. Struggle but fulfill daily home responsibilities No outside activity Not able to work/volunteer
5. Do simple chores around the house Minimal activities outside of home two days a week
6. Work/volunteer limited hours Take part in limited social activities on weekends
7. Work/volunteer for a few hours daily. Can be active at least five hours a day. Can make plans to do simple activities on weekends
8. Work/volunteer for at least six hours daily Have energy to make plans for one evening social activity during the week Active on weekends
9. Work/volunteer/be active eight hours daily Take part in family life Outside social activities limited
10. Go to work/volunteer each day Normal daily activities each day Have a normal social life outside of work Take an active part in family life
Can all your symptoms and illnesses be blamed on Lyme/TBI’s?
Yes!
Lyme is a multi systematic infectious disease. It disseminates through blood and tissues. It has been found in the bladder, heart, brain, joints, kidneys, gallbladder, spleen, tissues, skin, shoulders, joints, central nervous system, ears, eyes, etc,
Of coarse we know this but we want proof. Unfortunately our medical system doesn’t allow for microscopy and biopsies for Lyme although some LLMD’s do provide it.
What to do for a disease that has NO cures? We keep fighting! Recruit researchers and keep praying for research funding. Hope for clinical trials Repurpose existing drugs Create an International collaborative network approach Continued effort to spread information on TBI’s
When facing stormy seas we “Pray to God, but row towards the shore.” In other words, praying alone is not enough. It is up to us to work and put in the effort. So that is our path, keep rowing towards the shore.
Stay in the battle Lisa. I am. 💚
Posts: 2977 | From Florida | Registered: Nov 2016
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Bartenderbonnie
Frequent Contributor (1K+ posts)
Member # 49177
Notable Long Haul Covid Docs; Dr Bruce Patterson Dr Mark Houston
Posts: 2977 | From Florida | Registered: Nov 2016
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LisaK
Frequent Contributor (1K+ posts)
Member # 41384
posted
THanks Lymetoo. I asked dr about Ivermectin and he said to look online for a dr that RX and buy it that way, but I have not done thtat yet becaue I looked up some info andim a tiny bit afraid I might react to it.
do yo know anything about this?
plus I have really been overwhelmed with this concussion and all the therapies. I get very mixed up and forget everything - all over again after i was making good strides from TBD.
Ann, TY for always being here to give me positive thoughts
daisys, yes, I have been at this a long time
Bonnie, thanks for that nice chart! I oscillate between 0-5, but mostly 1-5. I am trying to stay in the battle. so many life struggles on top of the chronic pains and diseases,e tc. no real physical /local suppport system makes this extra hard for me since I need people around me to feel my best.
but I will continue to row the boat. but my arms are getting quite weak.
Bonnie, TY for resources!
-------------------- Be thankful in all things- even difficult times and sickness and trials - because there is something GOOD to be seen Posts: 3558 | From Eastern USA | Registered: Jul 2013
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Bartenderbonnie
Frequent Contributor (1K+ posts)
Member # 49177
Lots of different protocols. It might be hard to navigate for you with your brain dysfunction though.
Here is the search function for providers that prescribe Ivermectin and the FLCCC’s Long Covid treatment protocols through Telihealth; https://covid19criticalcare.com/providers/
I can understand your concerns over Ivermectin. So much misinformation, you don’t know who to believe.
The Quality of Life chart helps me get an unbiased view on the daily state of my health. It also helps convey the struggles of daily living to my providers.
Most days I’m a 5 but the whole month of October I’ve been a 3. I had a root canal yesterday and I was a 3, I don’t remember any of it, lol. I’m quite content when I’m a 5.
Hope you have more good days than bad.
Posts: 2977 | From Florida | Registered: Nov 2016
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LisaK
Frequent Contributor (1K+ posts)
Member # 41384
posted
thats a good point Bonnie
when I had to fill out my concussion headache and symptom papers I was forced to write it all down there and it made me see just how bad I feel every day.
I mean, even before the concussion.
when a dr asks me my symptoms I never know what to say becasue I've grown so used to them all.
yesterday at the breast center the nurse kept saying how brave I was and all that I have been through. I didn't even tell her most of how I felt, but she could see a lot in my chart.
my first instinct is to shrug that off when people talk that way. I have no idea ow to respond or react. In my head I hear, "be quiet, no one wants to hear it" and I pretend it isn't me.
I have started telling myself recently that it is OK to stop and look at myself and my physical problems and how I feel about them.
I feel very isolated. and im not sure why. other than it *is* very hard to be around people that don't understand.
-------------------- Be thankful in all things- even difficult times and sickness and trials - because there is something GOOD to be seen Posts: 3558 | From Eastern USA | Registered: Jul 2013
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LisaK
Frequent Contributor (1K+ posts)
Member # 41384
posted
-
**** I had no idea there was a long covid treatment!!
.
-------------------- Be thankful in all things- even difficult times and sickness and trials - because there is something GOOD to be seen Posts: 3558 | From Eastern USA | Registered: Jul 2013
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hiker53
Frequent Contributor (5K+ posts)
Member # 6046
posted
I love that quality of Life scale! I can find the accurate description of my day, unlike other scales that I've tried to use.
Lisa, I'm sure pulling for you. You are a warrior!
Posts: 552 | From New Mexico, USA | Registered: May 2007
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LisaK
Frequent Contributor (1K+ posts)
Member # 41384
posted
thanks Daisy!, thanks again hiker!
what would I do without all of you here????
I see posts on FB about "BFFs" and "a sister is..." etc, and Ihave no one like that in my life, it stings every time I have to see that stuff.
my best friends are far from me and I met most of them through this place! (lymenet).
-------------------- Be thankful in all things- even difficult times and sickness and trials - because there is something GOOD to be seen Posts: 3558 | From Eastern USA | Registered: Jul 2013
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aklnwlf
Frequent Contributor (5K+ posts)
Member # 5960
posted
I'm here for you LisaK! People here on Lymenet have gotten me through my struggles with Lyme and Co. Also a friend here recommended that I should be checked for a mast cell disorder and was right about that too.
I had hardly any support from family or friends because they just didn't believe I was so sick. My 2 closest friends are miles away, one in AK and the other in MN.
If there is anything I can do to help please either PM me or post it.
You are not alone!
-------------------- Do not take this as medical advice. This comment is based on opinion and personal experience only.
Alaska Lone Wolf Posts: 6145 | From Columbus, GA | Registered: Jul 2004
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LisaK
Frequent Contributor (1K+ posts)
Member # 41384
posted
Thanks so much ak!
-------------------- Be thankful in all things- even difficult times and sickness and trials - because there is something GOOD to be seen Posts: 3558 | From Eastern USA | Registered: Jul 2013
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LisaK
Frequent Contributor (1K+ posts)
Member # 41384
posted
Thanks so much ak!
-------------------- Be thankful in all things- even difficult times and sickness and trials - because there is something GOOD to be seen Posts: 3558 | From Eastern USA | Registered: Jul 2013
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