Aa
Lost Tired Frustrated...Please Help
I am loosing it and wishing for answers. I have been battling health problems for over 6 years now. I had every blood test done, Mri, 2 Neuros and nothing but frustration.
I finally went to dr because I had chronic daily headaches with episodes several times a month that would be so painful I would end up in the er. It was found that I had Chiari Malformation (but not bad enough to be causing my problems) so I was put in a Migraine category. (never light or sound sensitive with my headaches) Also did not explain some of the numbness issues I was having. Migraines dont cause constant tremors, loss of gag reflex, and numbness/tingling of face, mouth, throat.
Then things started getting worse and I was told probable MS. More testing and all normal results. (no lesions on the first or second MRI) So I was lost once again and now I have numbness/tingling in arms, legs, face along with muscle spasms and cramping everywhere. Fatigue that is unexplainable and pain in shoulders that would feel like I pulled every muscle from my head to my lower back (even though I had full movement)
So back to Neuro and she says that she now thinks I have Lymes. I was bitten by a tick when I was 7 and did have lumps on the back of my neck and did go to dr but I have not been bitten since (that I know of) I am now 38 and have been having problems for 6 to 7 years. Waiting for results now. She is running Western Blot and several other tests to rule out Lupus and such.
I will put my symptoms below. I feel like a hypochondriac. I feel like my body is having this epic war with itself and all I get to do is watch. I feel out of control, frustrated, lost and full of questions.
First ...can Lyme stay dormant that long or could I have been bitten later in life and not know it or have a rash? (I have been exposed to ticks SEVERAL times. I am out and about in Oregon all the time. Hunting, Horseback riding, camping and such)
Second..... can my symptoms be caused by Lyme?
Third..... since my main issues are Neurological and I have had them for years now and if this is what is wrong, can I be treated and have all these symptoms go away? Or would I be considered chronic and I am doomed to live this way for the rest of my life?
I am freaking out and I am sorry about that but I feel like my life will never be the same. I have 3 kids and have always been physically strong. I was raised to carry my own and work hard, never to depend on someone else and never be afraid to get my hands dirty. Basically to work like a man. I do (or did just that...I just cant do like i used to anymore) Yard work, cars, horses, kids (my husband actually loves that part of me because he knows I dont need him to be my knight in shining armor but I Want him to be that.
Does any of this make sense? I am rambling....sorry. I just need some help and some suggestions. Thank you in advance.
• Headache ***
• Tinnitus/my own heartbeat swooshing
• Visual Disturbances/seeing thing/movement/wavy/dimmed
• Feels as if my eyes shift back and forth very quickly
• Blurred Vision
• Dizziness/Vertigo
• Breathing Difficulties/ Chest pressure
• Swallowing Difficulties /Mouth numbness and tingling
• Muscle Weakness & Pain/Neck/Shoulders/Arms/Legs
• Walking (Gait), Balance, & Coordination Problems***
• Arm/Leg/Face numbness, pins and needles/tingling, twitching, spasms ***
• Loss of time/Memory Problems/Difficulty Finding the Right Words
• Hand Tremors
• Sensitivity hot/cold *
• Heavy arms
• Extreme fatigue and exhaustion ***
• Urinary incontinence
• Bowel problems ***
• Emotional Changes
• Tremor
I finally went to dr because I had chronic daily headaches with episodes several times a month that would be so painful I would end up in the er. It was found that I had Chiari Malformation (but not bad enough to be causing my problems) so I was put in a Migraine category. (never light or sound sensitive with my headaches) Also did not explain some of the numbness issues I was having. Migraines dont cause constant tremors, loss of gag reflex, and numbness/tingling of face, mouth, throat.
Then things started getting worse and I was told probable MS. More testing and all normal results. (no lesions on the first or second MRI) So I was lost once again and now I have numbness/tingling in arms, legs, face along with muscle spasms and cramping everywhere. Fatigue that is unexplainable and pain in shoulders that would feel like I pulled every muscle from my head to my lower back (even though I had full movement)
So back to Neuro and she says that she now thinks I have Lymes. I was bitten by a tick when I was 7 and did have lumps on the back of my neck and did go to dr but I have not been bitten since (that I know of) I am now 38 and have been having problems for 6 to 7 years. Waiting for results now. She is running Western Blot and several other tests to rule out Lupus and such.
I will put my symptoms below. I feel like a hypochondriac. I feel like my body is having this epic war with itself and all I get to do is watch. I feel out of control, frustrated, lost and full of questions.
First ...can Lyme stay dormant that long or could I have been bitten later in life and not know it or have a rash? (I have been exposed to ticks SEVERAL times. I am out and about in Oregon all the time. Hunting, Horseback riding, camping and such)
Second..... can my symptoms be caused by Lyme?
Third..... since my main issues are Neurological and I have had them for years now and if this is what is wrong, can I be treated and have all these symptoms go away? Or would I be considered chronic and I am doomed to live this way for the rest of my life?
I am freaking out and I am sorry about that but I feel like my life will never be the same. I have 3 kids and have always been physically strong. I was raised to carry my own and work hard, never to depend on someone else and never be afraid to get my hands dirty. Basically to work like a man. I do (or did just that...I just cant do like i used to anymore) Yard work, cars, horses, kids (my husband actually loves that part of me because he knows I dont need him to be my knight in shining armor but I Want him to be that.
Does any of this make sense? I am rambling....sorry. I just need some help and some suggestions. Thank you in advance.
• Headache ***
• Tinnitus/my own heartbeat swooshing
• Visual Disturbances/seeing thing/movement/wavy/dimmed
• Feels as if my eyes shift back and forth very quickly
• Blurred Vision
• Dizziness/Vertigo
• Breathing Difficulties/ Chest pressure
• Swallowing Difficulties /Mouth numbness and tingling
• Muscle Weakness & Pain/Neck/Shoulders/Arms/Legs
• Walking (Gait), Balance, & Coordination Problems***
• Arm/Leg/Face numbness, pins and needles/tingling, twitching, spasms ***
• Loss of time/Memory Problems/Difficulty Finding the Right Words
• Hand Tremors
• Sensitivity hot/cold *
• Heavy arms
• Extreme fatigue and exhaustion ***
• Urinary incontinence
• Bowel problems ***
• Emotional Changes
• Tremor
Best Answer
I'm going to start high dose of antibiotics also I'm on another medicine to kill the Babesiosis..I'm also Gabapentin for my tremors...I'm also on muscle relaxer and another Medicine they normal give to Parkinson patients( but used for different things) and Ceferloin ( food for the brain } thank goodness...I'm also getting shots twice a week one is b 12 another one is to stable auto system.
I haven’t slept through the night in over two years because of the constant tremor in my stomach/ legs ...I also jerk in my sleep which is constant waking me up some times I would jerk so hard it would literally rattle my brain...or I would have lightning flashes ( crazy I know) I also a couple of nights a week would sweat through my clothes when I would sleep I would have to get up an change them.
I will let you know how it’s going soon...
Good luck....
I haven’t slept through the night in over two years because of the constant tremor in my stomach/ legs ...I also jerk in my sleep which is constant waking me up some times I would jerk so hard it would literally rattle my brain...or I would have lightning flashes ( crazy I know) I also a couple of nights a week would sweat through my clothes when I would sleep I would have to get up an change them.
I will let you know how it’s going soon...
Good luck....
Thank you for the first straight forward test breakdown for Lymes. Western blot, ELISA and PCR and history of symptoms. All these will surely point towards an answer. It has taken me 2 years to get this information alone and this, I predict, is yet another stage of finding treatment!
Thank you : )
Thank you : )
We do have a lot in common! What treatment are they going to do for you? I am curious to know what to expect if I do have this. That was one thing I did not ask in my other posts.
I do hope I get some of my previous life back. I used to be able to through a 50# bag of grain over my shoulder and take it out to the barn for the horses with NO PROBLEM!!!! Now I use the wheelbarrow or a dolly (handtruck) to move bags. I dont have the strength anymore. Or my muscles are so tight already it hurts.
But i was born and raised in the Midwest and I will never give up. We Polish people have a "cannot fail" attitude. :)
Thank you so much. Hope all goes well for you. Keep me posted on your treatments.
Jen
I do hope I get some of my previous life back. I used to be able to through a 50# bag of grain over my shoulder and take it out to the barn for the horses with NO PROBLEM!!!! Now I use the wheelbarrow or a dolly (handtruck) to move bags. I dont have the strength anymore. Or my muscles are so tight already it hurts.
But i was born and raised in the Midwest and I will never give up. We Polish people have a "cannot fail" attitude. :)
Thank you so much. Hope all goes well for you. Keep me posted on your treatments.
Jen
Thank you so much for all the information. It was very informative.
Yes my neuro is looking at the symptoms first. I didnt have insurance for a while because of losing my job over all this so when I went in to see her on Monday she asked how things were going and I handed her a printed calendar that I have been keeping to try and see a pattern or something in my symptoms and a list of those symptoms. She read through all that first and then asked my if I had ever been bitten by a tick.
My husband had that look on his face like the "ding ding ding" Lyme! He had never even thought of it and I had of course no clue.
She also said that if the first test comes back negative she will send to another lab and have another test done.
So yes she is on board. I guess Oregon has a lot of Lyme and she is well aware of it. I have also started with Magnesium and Calcium supplements. She told me they may help. i am also taking Gabapentin to try and control the muscles. They spasm so much every day that I feel like I have done a workout 24/7. I now walk funny most days cause my legs ache.
When i was first seeing her my initial complaint was headaches. Not untill the last year or so has all the neurological sx become really bad. I think that is what she noticed more. She simply said that both my mris were clear and that she understood that this was way more than a headache.
I was happy with the visit. Just frustrated still. An answer cant come fast enough for me. Wish me luck! lol
Jen
Yes my neuro is looking at the symptoms first. I didnt have insurance for a while because of losing my job over all this so when I went in to see her on Monday she asked how things were going and I handed her a printed calendar that I have been keeping to try and see a pattern or something in my symptoms and a list of those symptoms. She read through all that first and then asked my if I had ever been bitten by a tick.
My husband had that look on his face like the "ding ding ding" Lyme! He had never even thought of it and I had of course no clue.
She also said that if the first test comes back negative she will send to another lab and have another test done.
So yes she is on board. I guess Oregon has a lot of Lyme and she is well aware of it. I have also started with Magnesium and Calcium supplements. She told me they may help. i am also taking Gabapentin to try and control the muscles. They spasm so much every day that I feel like I have done a workout 24/7. I now walk funny most days cause my legs ache.
When i was first seeing her my initial complaint was headaches. Not untill the last year or so has all the neurological sx become really bad. I think that is what she noticed more. She simply said that both my mris were clear and that she understood that this was way more than a headache.
I was happy with the visit. Just frustrated still. An answer cant come fast enough for me. Wish me luck! lol
Jen
Wow we have a lot in common I too was bitten by tick when I was 7 I'm also 38 with 3 kids...A LOT of the symptoms you listed are the same symptoms I'm suffering from too. I too was told it could be MS my last Neruo ran the Western Blot which came back positive..( I have been told these test are not 100 percent accurate) ....She wanted me to see an infectious disease Dr. but after doing my research and getting advice from this forum I decided that was not the best option for me. I just traveled out of state to see what is called LLMD ..who dx me with LYME .....I'm starting treatment soon and hopefully I will get my life back ...Don't give up hope there are some awesome people on this forum who are really educated on LYME ....
My journey started over two years ago I too was full of energy"people use to say I wish I had your energy or I wish I could bottle up your energy" that day is long gone but I hope soon it will return!!!!!!!
Stay strong don't give up
Have an Answer?
You are reading content posted in the Lyme Disease Community
Fearing autism, many parents aren't vaccinating their kids. Can doctors reverse this dangerous trend?
Can HIV be transmitted through this sexual activity? Dr. Jose Gonzalez-Garcia answers this commonly-asked question.
A breakthrough study discovers how to reduce risk of HIV transmission by 95 percent.
Dr. Jose Gonzalez-Garcia provides insight to the most commonly asked question about the transfer of HIV between partners.
Before your drop a dime at the pharmacy, find out if these popular cold and flu home remedies are a wonder or a waste
Fend off colds and the flu with these disease-fighting foods
Sorry you have reason to be here, but good for you for plowing ahead and *Not Giving Up*.
First off, you have achieved a near-miracle: your neuro "says that she now thinks I have Lymes." Wow! Neuros as a group do NOT like to diagnose Lyme -- they tend to think Lyme is very rare, very hard to get, and very easy to cure.
"She [the doc] is running Western Blot and several other tests to rule out Lupus and such."
This is good, that she is testing you for Lyme, but be aware that the W.blot test is NOT very accurate, and even if it comes back negative, you could still have Lyme.
Also, sometimes docs don't trust the W.blot because it can give a false positive result, meaning that it says you DO have Lyme, when really you don't, so if it comes back positive, the doc may then run a second test called ELISA, which has a high rate of false NEGATIVE results. The idea behind doing both tests is to try to cancel out the weaknesses of each test, but really what you have are two lousy tests.
A Lyme-aware doc will also use a test called a PCR, which directly looks for bits of Lyme bacteria DNA in your blood, instead of looking for your immune system's reaction to Lyme, which is what the lousy W.blot/ELISA tests do. Unfortunately, some docs do not trust the PCR test and will not use it, so you are left with the imprecise W.blot/ELISA.
A good doc will look at your history and symptoms and not just the test results, and I hope your doc does that. If she does not, then you might want to see another doc. We can get into that later if need be.
(***Be sure to get copies of all the tests the doc does.*** They may be useful to a future doc, since figuring out and tracking Lyme is a detective job and needs all the clues you can find. Doc's office staff people are often not keen to make copies later, and you will never know if you get everything if you wait to ask later.)
==========================
"I feel like a hypochondriac. I feel like my body is having this epic war with itself and all I get to do is watch. I feel out of control, frustrated, lost and full of questions."
I think if you fear you are a hypochondriac, it is evidence that you are NOT one. What you are feeling is normal, in my personal experience.
==========================
"First ...can Lyme stay dormant that long or could I have been bitten later in life and not know it or have a rash? (I have been exposed to ticks SEVERAL times. I am out and about in Oregon all the time. Hunting, Horseback riding, camping and such)"
Lyme is good at hiding in the body in places where the immune system cannot reach it, and the immune system can keep it in check for a long time, until you get another illness, have an accident, have surgery, or encounter a lot of stress that taxes your immune system. At that point, the corral your immune system has built around the Lyme bacteria in the places they like to hide in the body can break down and the symptoms flare up. Not uncommon. And since you are outdoorsy, that goes double for you.
"Can my symptoms be caused by Lyme?"
Lyme looks different in everyone, because our immune systems are all different, and I suspect there is a genetic component to how we each react. Also, Lyme ticks often (maybe half the time) carry more than just Lyme, and each of the other 4 or 5 diseases that the ticks often carry has its own set of symptoms, so it's mix-and-match time with how the symptoms are expressed in each of us. There is no strict list of symptoms that one size fits all. Lyme is sneaky.
"Since my main issues are Neurological and I have had them for years now and if this is what is wrong, can I be treated and have all these symptoms go away? Or would I be considered chronic and I am doomed to live this way for the rest of my life?"
To my understanding, all Lyme is treatable. Different people react differently to various treatments, and it also depends on what co-infections you might have. I had Lyme and babesiosis, which is similar to malaria. The 'babs' was a pretty easy cure. There are other co-infections that may be tougher to beat, but never say never, and it's definitely worth trying. There is some thought that some diseases may not be entirely eradicated, but are just squashed down to the point that your immune system can keep them in check. It acts as a functional cure, and that's good enough for me, if that's the case.
"I am freaking out and I am sorry about that but I feel like my life will never be the same."
It is normal and even common to feel that way. Lyme with a lot of neurological involvement (happens more in some of us than others) irritates the brain, and Lyme also messes badly with the whole hormonal system (for example, chilliness is common). Hormones and brain involvement definitely affect mood. I was frantic when I was sick, partly because I had neurological involvement and partly because I couldn't find a doc who understood what was going on. With treatment, life gets better. It's NOT you that is causing these seeming changes in your approach to life; it's the infection. Explain it to your family, and I bet they will understand.
"Does any of this make sense?"
Absolutely.
In the list of symptoms you included above, I don't see anything I have not heard mentioned by someone with Lyme. You might try magnesium supplements for the muscle pain and aches -- Lyme use up magnesium in their reproductive process, but the low levels don't show up in blood tests until they are dangerously low. Be sure to tell your doc you are taking the supps, if you do, so that can be taken into account, and also tell the doc if it seemed to help you. I am NOT medically trained, however, so don't rely on me for advice like this -- it's just an idea but may be very wrong for you. It did help me a lot, and I still take a magnesium supplement every day. Any variety of magnesium ending in "-ate" is supposed to be easily absorbed: citrate, malate, orotate, etc.
See what the neuro says and get copies of the tests, and let us know the results if want to. We can give you some ideas of what we would do then.
Hang tough -- and take care --