Saw neurology for first time today thoughts??

"What if something else is going on and I'm not getting treated".


I understand your fear, Maine - but you have a CDC positive test result for Lyme.

So, are you having an MRI to rule out MS? Lyme can show up on the MRI the same way MS does.

Let's say - you did have MS - well - what caused it? They don't have a known cause...maybe it's Lyme disease...and the way to get better is treating lyme.
There isn't a good treatment for MS - so the way I look at it..you don't really have anything to lose do you...by treating lyme?

And...you have a CDC positive test result for lyme. You do know - not many of us have a CDC positive test. The CDC makes it rather difficult to get a positive result.

I have fear too, still...sometimes. It's like we should add it to the symptom list.

The stocking glove syndrome - that is nerve related - and we know lyme/bart attacks the nervous system.

I know... I at times think crazy thoughts and then I think "what if the llmd are taking advantage of patients and there's chronic lyme and I'm dying of something I need diagnosed and treated". It's so horrible I can't believe I am so crippled and debilitated hyonthig that nobody will acknowledge other than people that charge 300.00 an hour and people don't even get better. It's like the twilight zone. Today I could barely get out of bed, felt flushed, internal vibrations, nausea, severe headache, weakness, right hand numb, left side of fave numb and tingling in my head. I was short of breath and couldn't get off the couch. I started sobbing and I am usually pretty stoic and muscle through and force myslef to do things because I have to... Like many of us. My husband got on the phone and made appointments. I am having one of those times where I don't know what to think anymore....... The neuro np today did acknowledge that lyme can cause lesions.

Maine - I'm so sorry that you are suffering so much.
Are you going to start treatment?
I hope you get some relief soon!

I understand....I still am reduced to tears many days...it's a brutal disease.
It's alright to vent here...that's what we're here for.

I can feel your pain...and I am so sorry for you, for all of us that are suffering.


I'm sending you a hug... Just wish I could give you one in person...

Dear Maine 76,
I exactly know how you feel with the fact of loss of touch or hugs in your life.I think this very awkward disease makes it this way.It is unbelievable that after all we go trough, people can not believe us and sometime we are bullied not loved and hugged and cherished until we get better.I always tell my husband this is what I would do if he would be sick but for the moment I can not prove this.

Maybe or surely our partners miss the normal us too this is why they can not relate properly to us.I was in remission 85% for 5 months and it was heaven, my husband was also extremely happy and now is extremely disappointed by all of this, also unkind to me.

I am not sure how it really should be.The only thing I can say to myself and others is that it is awful to live with such diseases, this is why we schooled seek out proper teatment and get our life back, even if we are extremely fatigued that we can not get off the couch.It will take a long time to recover but, it can happen and this is no life to live.

I read you are consulting with a neurologist and maybe you can get some support for recovering on the neuro part but, you have to kill slowly the pathogens because they want to eat us up.They or the majority of them has to go.

Also Antonio I m very happy that you are out of the extreme gloomy phase.

Greetings and all the best to all of you!

What it comes down to is that if that Neuro wasn't truly Lyme literate, then they simply are not qualified to rule out Lyme because they don't know enough about the bacteria or the disease to know what it is and is not.

You have a positive Lyme test. Get treatment for your Lyme disease before you go looking for more things. For most people, that will clear up their symptoms, and answers their questions. Treatments for things like MS include medications that are meant to lower the immune system, so of course a person that has Lyme instead will get worse while on them because their only means of fighting the infection has just been disabled.

When is have time I will reply properly.for now thank you all
So much...

Little bear: it is hard to understand. I am an RN unable to work As well. I have blackouts too, I can get myself to the floor before I lose consciousness. I word search and I am normally very articulate. I can't think of what things are called and even my neighbors names at times, my kids friends parents who I know! It's insane...
I am scared to self treat without someone following at least labs etc..... I can't afford treatment and my kids have it and one is going down hill again too.... My son who is in 8th grade.

I posted this a link to this last week but I know most often we don't feel well enough to bother clicking links.

Ten things to remember if you love someone who has Lyme

1. They’re not crazy, they’re not lazy, and it’s not all in their head (pun intended)

This gravy train needs to stop. There has to come a point where reality takes hold and reality is that a highly evolved bacteria with lethal intent courses through the blood of a person with Chronic Lyme Disease; literally dismantling the human body in a malicious manner over an extended period of time until death becomes. That’s reality. All other claims are a true reflection of a person’s inability to reason effectively.

2. They’re not stupid. They’re under the influence

So you have the distinct pleasure of having a conversation with a person with Chronic Lyme Disease. Did you notice that they may not appear to be as smart or possess the ability to articulate words much like they used to? Were they not able to recall an obvious time or memory that you both shared? Did they come to a complete stop in the middle of conveying a thought? Don’t worry, it’s not them. Within their brain, there exists a bacteria releasing deadly toxins that are directly interfering with the nerve relapses of their central nervous system.

3. They’re on a special diet

You may have the intent of asking a person with Chronic Lyme Disease to join you for a meal. Maybe even one that you cooked but not without your love, passion, and hard work. Here is the deal. If your meal or a place you intend to visit for food contains either gluten, dairy, or sugar, they can’t eat it. They’re on a diet designed to deprive their body of food that directly feeds the bacteria within their blood and provide the essential nutrients their body needs to allow their immune system to take hold. In a nut shell, they’re trying to avoid adding more fuel to the fire here. Yes, this includes alcohol.
But no one is denying the food is just as delicious as the bacteria in their body is deadly.
4. They’re not ignoring you. They’re reeling

It’s been a while since your friend or relative with Chronic Lyme Disease reached out to you. Let’s be honest here, living in a constant state of mental and physical pain, accompanied by eccentric, uncontrollable, and unprecedented symptoms, with a life that came crashing down isn’t really something to show for; especially when these truths are in their face at all times and can’t be ignored. A person with Chronic Lyme Disease can’t talk about a party they went to last night, or the degree they’re majoring in at college, or the job they’re working, or simply what they plan to do this weekend. You want to know what they’re doing this weekend? Here’s what they’re doing. They’re most likely laying in bed or on the couch, in a both physically and mentally ailing state, wondering time and time again why they happened to be the lucky person to contract such a life altering disease. Their aspirations have come to a complete stand still as their life now almost 100% of the time revolves around restoring it. Can’t you just see how eager they are to talk about their life with you? They have nothing to impress you with.
Also consider that in addition to the reeling, a person with Chronic Lyme Disease more than likely may be experiencing what is know as floating, and more than likely is exhausted in attempting to explain what they’re going through to members of their own species when they themselves don’t have all the answers.

5. Yes, they had to leave their job or drop out of college; or both

If a person with Chronic Lyme Disease can’t even carry on a simple conversation, how does one expect them to delve into the untouched matters of the universe in their college course or the physical demands of a job. Such societal demands require either an incredible amount of critical thought or physical energy, both of which a person with Chronic Lyme Disease lacks greatly. Chronic stress is usually a constant factor in college and work and it directly compromises the immune system. It’s the last thing a person with Chronic Lyme Disease needs when they’re aiming from every angle to remove a deadly bacterial infection. The ultimatum to leave college and/or work, even though it may be temporary, is never taken lightly by the heart.
“They’re currently struggling for truth and answers as
they’re not easy to find.

Try not to make them feel like they owe you more than

the truth.“

6. Stop saying “Well you look healthy to me”.
Unless you have both microscopic and magnetic resonance imaging (MRI) for eyes, all you can see is the delusional exterior perfectly concealing the destruction that is currently in effect under the skin of a person with Chronic Lyme Disease. A person doesn’t need a visible wound to identify a debilitating physical and mental state of existence. You’ll never find a person with Chronic Lyme Disease whose eyes constantly fall out of their socket because of their condition. Almost 100% of all the visible evidence needed to determine how severe or ill a person with Chronic Lyme Disease is resides within their interior. The debilitation can only be felt and truly understood by them.

7. Yes, they’ve been enduring it for many months or even years

Hopefully by now, you’ve made the rational decision to forget the ignorant notion that 3 weeks of antibiotics are all that is needed to remove Chronic Lyme Disease from the body. If not, you’re going to have trouble understanding this one. From when the first symptom starts, until the day a person with Chronic Lyme Disease is in remission, many years may pass. Why is this you ask? Well it’s very simple you see. Between a combination of doctors who abide by outdated medical standards, ambiguous symptoms, inaccurate and deceptive testing, and when finally a diagnosis is clinically agreed upon because testing failed time and time again, treatment alone for Chronic Lyme Disease will take a minimum of a year because of the highly evolved complexities of the bacteria and possible coinfections. The entire endeavor is no over night fix. It is the ultimate test of patience.
8. Treatment makes them feel worse

The idea that treatment for Chronic Lyme Disease causes a person to feel worse is almost counter intuitive, but only to the unreasoned brain. You see, every Lyme Disease treatment protocol must contain either a non bacteria-resisted antibiotic or a supplement of some kind that boosts the immune system in order to effectively eradicate the bacteria. Got it? Ok. Now when the Lyme Disease bacteria is killed by either the immune system or an antibiotic, toxins are released from the outer member of the bacteria, causing a person with the infection to feel 100x worse than your worst hangover; or worst flu if you don’t drink. These endotoxins flood their internal organs and cause what is known as aherxheimer reaction within the body. If a person with Chronic Lyme Disease kills off too many of the Lyme bacteria in their body at once, the herxheimer reaction can become so severe that it can actually kill them.
For the record, the severity of their herxheimer reaction is a direct cause and reflection of their mental and physical state that day.
9. They don’t have all the answers

It’s human nature to inquire about a friend or family member whom you know is not feeling well. You yourself want to understand what is currently disrupting their health and if possible, help them along and expedite the healing process even if it’s just by a few good words. When confronting a person with Chronic Lyme Disease for answers, you will find yourself leaving the confrontation with less knowledge than you had expected to leave with. The reason it that they don’t have all the answers nor do they remember the few they have due to their faulty memory. This also includes a timely explanation of why their life is not adhering to the exceptions you may have had for them. They’re currently struggling for truth and answers as they’re not easy to find. Try not to make them feel like they owe you more than the truth.
10. They’re not bipolar

If you find yourself around a person with Chronic Lyme Disease often, you’ll notice that their mood or condition changes quite frequently. One day they’re happy, feeling great or coming off quite intelligent, and the next day they’re sad, depressed, irritable, or feeling physically horrible. Though these continuous fluctuations in a person with Chronic Lyme Disease may lead you to believe there is something else wrong. There isn’t. This is actually quite normal because their bodies have been biologically hijacked by a highly evolved bacteria with the intent to kill and cease their biological function.

This is me to a T. A friend posted this on Facebook. Seeing things like this make me feel more normal. The link is http://www.goforhealth.co/2015/11/01/2886/
Janet

Thank you all, I am sending you all hugs too.

Antonio, fini (I will call you for short), girlie, trav, Limey, sunfun, little bear, all of you... And last but not least mister Mike. Thank you all, it does help to hear your replies. <3.

I appreciate it so much. Tonight my husband and I went out to grab a bite and I was feeling unwell when all day I had a few hours where I was able to leave the house and dress normal and not feel as though I was literally dying... Well then tried to go to dinner with hubby. Somewhat suddenly felt so weak I could not walk normal, it was an effort to talk, chest was heavy, had vertigo etc. I managed to force myself and had a salad. I am on the couch now watching tv and I am OK, I don't feel normal but o don't feel
Like I'm dying. Hands are kind of numb and my right foot. This illness is sooooo freaking weird, I will never get over my awe at how bizzare it behaves.

So trav, it seems like you don't think I should have the MRI? I know they may tell me I have ms, but they may tell me I don't... Idk things are so messed up and do need medical help. I have to find a way to get lyme treatment regardless

hI

forgot to add can any of you tell me.what is it that cause severe muscle weakness in arms legs have lost my mobility. Legs give way getting off raised toilet seat collapse back into wheelchair beside me?

Is it lymes or one of coinfection?

love
elaine

As Girlie said, Lyme causes muscle wasting and weakness, and Bart can make any Neuro issues worse, causing more weakness. I used to have my legs lock up on me - they wouldn't bend or move, not even from the hips. If I was standing, there was no walking over to sit down, or walking anywhere for that matter.

I've also lost my grip without losing muscle. I couldn't hold on to much of anything.

These infections can cause a number of distressing issues, and when they combine, it's usually worse.

Maine76,

One thing to remember is that everyone here has walked in your shoes. We may not have exactly the same symptoms but we all know how you are feeling. We've all had moments of despair and this is a good place to come for a pick me up.

You know how when you go on an airplane and they do the briefing they say if your oxygen mask drops put your own mask on before helping others in your party. Well, your 3 year old needs you to put your own oxygen mask on. Sorry I don't remember if it was a boy or girl, but you did say your child was getting treated. You need to get treated as well.

My son was about that age when I was diagnosed with Fibromyalgia (13 years ago) and I had been sick for 23+ years already (35+ years total). I hit a point when I reached my lowest. I decided I needed help with my mental health. I got hooked up with a psychiatrist and he was one of the best things that happened to me. He asked me if I had thought of suicide. I said yes, but while it would have been better for me (no more pain) it wouldn't have been better for my kids. So I picked myself up and kept going.

Your 3 year old needs you. You have an answer for something you definitely can be treated for. As parents, we do lots of things that are hard. Nothing is harder though than putting our selves first. We can't take care of our families without taking care of ourselves.

While I was waiting for my test results, my dog brought in a tick. I flipped out and was on to my vet to see what I could do to prevent the dog from bringing more into the house. While we were talking, he mentioned his 18 year old had just been diagnosed with Fibromyalgia. He said that "Fibromyalgia" is just a big word that means "we have no idea what is wrong with you." He's right. MS really is not much different except something shows up on an MRI.

With both they are really only treating symptoms. With Lyme there is a known cause, it's what is the best treatment for you. So like everyone else I suggest the right course is to treat yourself and look for what works best. Don't forget to detox because many have had trouble because they did not detox.

Hug your 3 year old tight,
Kim

P.S. jrpsf, #3 when I was looking into food sensitivities the doctor wanted me on a diet of chicken, rice and salt. My husband said, we could work with that. He said there were lots of way he could cook chicken. I said no there is only one way to cook chicken with salt. He said no, there were lots of ways he can cook chicken. His way of supporting me was to cook chicken in ways I couldn't and then eat it in front of me. LOL. We all do what we must.