Lyme? I dont want to die from this

2002 - I woke up in the morning with a strange feeling on my chest, looked down and freaked out. There was a bug attached to me and it wasn't a small deer tick like I've seen on pics; it was engorged. I had a sports bra on so I instinctively put my finger nail through it and shook my bra out in the toilet. I didn't think of this until 6 months ago when I first heard of Lyme. I never knew this nasty bite would cause so much damage to my body. I am now 30, in 2002 i was 16.

On October of 2002 I started suffering with reoccurring strep. I now believe this is linked. It continued 3 to 5 strep cases per year; it sucked to say the least. Until 2009 when I became pregnant with my son, horrible joint pain, muscle weakness, the list goes on. My doctor said I was having a terrible pregnancy. I was pre-eclamptic, it wasn't fun. about 6 weeks after my son was born, I went back to work at a restaurant and I found it difficult to be alert, and the joint pain was unbearable. I also noticed a cauliflower-shaped red, puffy rash where I now remember the bite (at the time I didn't know about Lyme so I didn't know these were connected). I'd never noticed a rash there EVER before. My doctor said it was from the tanning bed and that I must be photo-sensitive (they were connecting wrong dots!).

After the first onset, every time a flare starts, I now get that rash. My doctor prescribed me pain pills, tons of them; Oxy, Soma, Vicodin, Tylenol codeine, the list is long! Anti-depressants because it had to be post-partum depression, anxiety medications because I would have uncontrollable anxiety attacks. Everyone around me thought I was nuts; lost all friends because I must be faking and a drama queen.

In 2012, after 2 years of tests, I was half heartedly diagnosed with (sle) systemic lupus on top of my already existing diagnosis (anemia, depression, anxiety etc). He said to move more... Ya that'll work, NOT. I remember him saying "your levels are low but your inflamed". He literally scratched his head. That is why I refuse to medicate for lupus; also, the medication made me violently ill and the doctor informed me it wasn't even lupus meds for regular patients because my levels were so low; it was only a lupus preventative.

2 months ago, a flare started, it took me forever to get into a neurologist for my migraines, insomnia, balance problems, spacial awareness problems when driving (super scary) and loss of bladder control, but I finally saw her on the 15th. She is testing me; the results haven't come back, she thinks it's MS. I would of waited if it wasn't for my terrible onset of chest pain three days ago. Weird sensations in my chest like a knife is sliding in and out. That part is painless. It feels like a knife sliding through butter, again, no pain. I do have chest pain but that part wasn't painful. I now have new symptoms: high heart rate when I stand up for more than a few minutes. EXAMPLE: I took my BP at home and it was 115/90, HR: 160. After I sat down and relaxed for 5 minutes, it was 135/105 HR: 90, so I took myself to a local heart hospital where it was 140/100 HR: 109.

I got a x-ray of my shoulders because they noticed my pain, also a urine analysis and blood work. 20 minutes later my doctor said I was so healthy besides the weird spike in BP and HR. He informed me he was giving me steroids. I said "NO", he said "why"? I said, "do you know whats wrong with my heart?, will this for sure cure this?" he said "I don't know because I don't know what's causing it, but I'll refer you to a rheumatologist for your pain"; that's who diagnosed me with lupus. I left the hospital after they couldn't do anything for me if I didn't want narcotics and steroids. I was on my own and I went home. I forgot to mention because that's all I do is forget, I have terrible memory problems; I mean, if someone tells me their name, I'll forget it almost the second they tell me. I lose everything because I lose chunks of time. I forget to eat if I'm even able to eat food at all and i have the worst insomnia.

I slept last night for 5 hours, but before that, since my flare up, it's naps throughout the night; never a solid sleep. Also, the last 2 days I've been suffering from tremors in my jaw and slightly throughout my body. I don't know what this is, but I now know better than to think its a coincidence. I first heard of Lyme 6 months ago; before that, I was convinced I was crazy. Everyone was right because this disease tricks you when you feel good you start to think you are nuts, then a flare hits you and you want to kill yourself and that isn't a dramatization. I think about it everyday, I live through this; you don't know how terrible it is to have pain everywhere periodically and having EVERYONE roll their eyes at you, now this? I don't know what to do, I need help. I'm sitting here typing, my chest still hurts when i talk or breath in deep and I'm afraid I will die before they find out I have Lyme and treat me. I am aware the CDC says that's uncommon but i know how i feel and i feel invaded. I don't know what I expect, I'm just scared. . After i wrote this i looked at my symptom list and realized i forgot a lot so I'm just going to make a list of the symptoms i forgot *tingling in hands and feet like a vibration almost *shooting pain that travels around *severe muscle weakness * cloudy vision like i just got out of a chlorinated pool this is very frequent *nausea, vomiting, diarrhea *tingling all throughout only right side like needles all over my body *itchy right foot that wont subside with itching *back of the neck pain like someone is cupping my neck and head *Severe hip pain *Severe shoulder pain *get gassed out easy *In the bath i become dizzy disoriented and my heart rate increases dramatically (only with warm or hot baths) *feet and hands go numb very easy *I get hot when my back or joints hurt my children love it because I'm so warm like an electric blanket hot to the touch NO FEVER *fevers without a temp *horrible headaches that last days sometimes longer than a week its unbearable *night sweats (I'm freezing but i cant quit sweating, i want to cover up because I'm cold but if i do i soak the sheet or blanket with sweat *shaking when i try to do anything having to do with fine motor skills before i try a task no shaking *shooting pain sensation in cheeks a lot * light sensitivity (SEVERE) * the last 4 days I've had muscle twitching for hours at a time that is visible to everyone. It is only this last week my family is taking me serious because of the visible symptoms they can actually see. I'm tired of feeling helpless please anyone?

Yes on the 15th but my chest pain wont go away if that never started i would be so worried.

Hi Kw!
Welcome to our community! I'm so glad you found us!

I have to agree that it does sound like you have Lyme, and likely co-infections.

If you haven't ​yet​, it would be helpful for you to start with reading through the thread at the top of the forum titled,"New to Lyme?...Start here!!", as it is packed full of important information, symptom lists, helpful links and pdf's, how to detox when one has these infections, information on probiotics and much more. And this is another good list of possible detoxing routines: www.tiredoflyme.com/detox-methods.html Detoxing for us is an incredibly important part of our healing.

For information on finding a​n ILADS ​(International Lyme and Associated Diseases Society)​ trained​ Lyme Literate Medical Doctor(LLMD) in your area, you will need to enable your email option in your profile in order to receive any recommendations, as we don't allow doctor's names and contact info to be posted on the forum for several reasons. You can enable your email option in your profile, under 'edit profile'. Be sure to click the submit button to actually save your preference.


​You can send me an email by clicking on my screen name or the small blue envelope under my screen name. I may have contact information for some LLMD's in your area as well.​ ​Please include your state (or province) and area that you would like to find a LLMD in and I will be happy to share the names I have.​


You can email the Tick-Borne Disease Alliance at [email protected]​ for LLMD referrals.


You can go to The Lyme Disease Association and search for LLMD's 3 times in a month. You have to register first. Here is the link:
www.lymediseaseassociation.org/index.php?option=com_content&view=article&id=277&Itemid=74​​


ILADS has their own referral system as well:
ilads.org/ilads_media/physician-referral/

And www.LymeDoc.org



​ You will want to find a well trained doctor, not one that has self proclaimed themselves as a LLMD or an ID Doc (Infectious Disease Doctor), as ID docs believe Lyme is hard to catch and easy to treat, and don't believe in the reality of chronic Lyme. Go to the ILADS site to read the new (2014) Treatment guidelines to get you started on your healing journey:
www.lymenet.org/BurrGuide200810.pdf

I don't know what could help with your chest pain, could it be related to anxiety? Please drkink plenty of fluids, and adding some supplments for detox, adrenals cant hurt. Vit C, selenium, NAC, l-tryptophan for starters.

Tryptophan acts as an anti inflammatory in larger doses, like 2g per day, specially neuro symptoms.

I know you feel alone in this, but the group here does help and just know healing lyme will take a while. One day at a time thinking might help you cope with the Journey.

Please hang in there for the next few days, keep us uptated?

omg thank you all for responding, i am very well hydrated it is hard for me to eat so i continuously hydrate that isn't the issue i wish. I also am sweating a lot deodorant doesn't help only since the chest pain started. No relief yet, i do not take anything for my issues pills make me violently ill i smoke cannabis concentrate but it is a financial burden so i go without most days. I'm usually good dealing with pain you never get used to it, but living through it gets easier i suppose. Or you get tired of people rolling their eyes at you because i do not look sick I'm 5'5 and 135 people look at me and see a pretty young woman not a violently ill person. This is my ever problem my face and body do not match the inside hijacking that is taking place on the inside.

i almost wish i had lupus or MS like these doctors think because the strange looks and eye rolls get old when my blood, x rays and piss comes back healthy as a horse i want to scream. i live near LA so I'm going to call in the morning to different places, my chest pain isn't lessening its getting worse and i live with anxiety this is a different pain and i know this isn't normal or good.

Echoing Traveler - start with the resource post - and WELCOME! I'll pass on what others passed on to me. I thought I was dying last December. SO much BETTER!
1. Eat to make an inhospitable environment for bacteria: for me that translated into - no sugar, no caffeine, no alcohol, no dairy, no gluten.
2. Don't wait to find a Dr. to begin helping yourself. Herbs for many here have worked great, and for me, they were my only option. I have benefited greatly from Stephen Buhner's work (down the line, you may want to buy his books. I began with Cats Claw I could pick up at my local health food store and ordered Japanese Knotweed online.
3. DETOX DETOX DETOX. Get used to research. Just google - detox lyme and see what pops up.
and..yes.. ask questions.
and.
welcome
Today is the day you begin to get your health back.

kw661 said...
Yes on the 15th but my chest pain wont go away if that never started i would be so worried.

Does your chest pain start with pressure and you get sharp pains when you try to breath, especially breath deep?

That was my first symptom that sent my to the e.r. thinking I was having a heart attack. The very first one came while I was asleep. There is a medical name for that, Traveler, I think, has mentioned it a couple of times.
What she said is significant because the e.r. doctor told me the cartilage in my chest was deteriorating. (I translated that as "rotting" and didn't believe him.)
Turns out spirochetes attack cartilage.

Do you feel your heart racing, short of breath, tingly, when you have the chest pains? I had that checked out, as you should if you haven't already, but this is part and parcel of what Lyme and co infections do to us.

Try to relax sitting down, and unless the room temperature makes this too uncomfortable, cuddle a heating pad on warm against your chest. I ended up calling these my chest muscle spasms, because of one other odd sensation I've never heard anyone else describe, it felt like worms crawling around in my chest. So, not sure if it was muscle fasciculations.

kw661, I am in CA so if you are referring to our LA and not Louisiana, I will be glad you help you look for a LLMD.

Multifacetedme gave you some great tips and I will say them again.

1. Begin to eat as healthy as you can afford and make it organic if you can afford it. Cut out the garbage food! This is extremely helpful.

2. Drink lots of water to flush out the toxins. These are the dead bugs and other "goop" we are exposed to every day. I know you said you drink a lot of water, but take your weight, divide it in half and turn that number into ounces - that is a good rule.

3. Get as good and as much sleep as you can. Dark room, turn off all electronic devices that you can.

4. No watching horrible news, scary movies or nasty YouTubes. What goes in your mind has to be good and clean also.

This is where you start. If you can't get into see a doctor right away there are herbs you can do to start the process. Most LLMD's don't take insurance. Some of the tests may be paid by insurance, but you might need to ask first.

If you can get an appointment and it is only a month away, you will be lucky. And if that happens you can go to a clinic and say you had a tick bite and a rash and you suspect that you have lyme disease. Most clinics will give you 28 days of doxycycline (an antibiotic) and this is a good start until you see the doctor in a month.

There are many options. And the reason there are many options is because there is not a one pill cure for this insidious disease. It is generally a trial and error fix.

But, here is the good part. You can heal/remission. I did it. I made a lot of mistakes in my treatment and still made it. I am your hope.

Hugs to you because we all need hugs. Especially when we haven't felt like hugging in awhile.

take ivermectin for chest pain

kw661 said...
YES all of that is me, even the crawling sensation but that was last night hasn't happened since its scary as hell. the pain is getting worse.

Putting that together with everything else, I would say it's the Lyme. It's been 30 years since that started with me, and I didn't know what it was. I can't remember how many trips I took to the e.r. because of that, and every test they ran on me said there was nothing wrong with my heart, it was working fine.
Don't hesitate to get a medical opinion on that for yourself, though.

I bought myself a stethoscope back then, so I could listen, and it soothed me, hearing it beat like it was supposed to.

Try to keep calm, you're headed in the right direction for help finally. Do what you can to de-stress so your body can put more energy into keeping the Lyme disease symptoms under control.

Welcome to our community. You came to the right place! The people here are wonderful - supportive and compassionate and very knowledgeable.

One of my first symptoms when things started getting bad was this weird chest pain. I went to the doctor three different times in a span of 4-6 months - they could not find anything cardiac related. They diagnosed it as anxiety and put me on xanax. The xanax did help; it at least let me get some uninterrupted sleep.

Fast forward a year and a half and my LLMD said it was probably joint pain in the chest/rib cage.

Bottom line: it's hard to tell if it's anxiety or joint pain, especially when it's happening. I found that dandelion root tincture in water helped tremendously, as does lemon water (just make sure you are using at least one full lemon). Hope it helps.

Please keep us posted and don't be afraid to ask any questions.

Much good advise here but just wanted to say glad you found us and welcome. We are here for you just ask any questions you may have.
Nicolas