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neuro lyme, feels like I'm dying

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Posted 5/10/2013 5:21 PM (GMT 0)
Hi Hana I am new my first day here and this is the first place I went. I have not even been tested yet have an appointment with two different docs one will test me thru igenex but not til Aug. 20th. I recently became aware of the fact that What was wrong with me is Lyme when I accidentally watched under our skin on netflix it was in with scary movies. I had been experiencing a lot of what you have stated and had an MRI with a white spot in my brain. The docs told me it was nothing and blamed it on my depression that I have had for years do to being kidnapped at 14 for 5 months and nearly sold into the sex trade before I escaped. Then a rash of abusive relationships. But no matter what they told me I knew that something was very wrong because I literally feel like I am dying. skull when I saw Under our skin I burst into tears because I knew that that was what was wrong with me. I looked it up and found that the tick bite I had suffered after moving up to the mountains in Bridgeville CA had left me with Lyme. I know with out the test that I have it positively because one day someone said what is that on your leg i looked and on my calf. was a huge red circle and in the middle was a tiny tick. I did not know what Lyme was then. I thought I had an infection so I removed the tick and cleaned the wound it took a long time for it to go away. Soon after I started getting dizzy spells then months later my face went numb and i felt like spiders were crawling up and down my whole body under my skin. i went to the hospital had CT then an MRI they found a white spot in my brain had an MRA they said it was fine I had a lot of numbness on left side and then It got so bad all a sudden that I could not stay standing to do dishes or cook and fatigue hit. I moved back to town thinking that I could die and I was 2 hours away from the hospital. I have 3 kids and this has been hard on me. It got somewhat better for a while in time for me to move my things. And now and then different things would happen. Then i started getting very ill again and so fatigued I feel like I cannot do anything my chest hurt so badly that I thought i was having a heart attach and I went to the hospital they told me nothing was wrong with me that it was in my head. i was so mad. SOOOO mad. And then The pain in my body has gotten soo much worse my legs hurt soo badly its hard to sleep My arm joint hurts horribly for over a month and will not go away. my fingers swell and whole hands hurt I get horrible headaches and I cannot sleep because of the pain. I am bloated and bleeding from my rectum not sure if this is related but suspect it is will have a endoscopy soon. I absolutely feel like I am dying and I have no support or help with my 3 kids I also have an 18 year old adult dependent now who is my 17 year old sons friend his mother is dying and he had nobody either. I took him in thinking that that could be my son and who would be there for him. And though It is so hard for me. I am trying my best to show these two boys my son and his friend how to grow up fast because I am not sure I can be there for them. And I may need my oldest to be there for his younger brothers. Really I need help now but I have always been Mom the one who took care of everyone and my son is not ready at 17 to be on his own yet. He has a slight autism. But I need him to be able to help me so I am trying to help him learn. I put him in counseling and his councilor has done wonders my son is wonderful he told me he is graduating by the first semester of school next year and he will be getting a job to help me pay for the medical bills. And not to worry that he will be here for his brothers and that he knows how to get the help he needs from the community to support him in doing so. When he said this to me I burst into tears. He is the first person to show me they will be here for me. When I was unable to help my family and friends anymore one by one they disappeared and my mother heard I was sick and will not even call me nor do my brothers nor does anyone else. Including my father who was never there for me when I grew up but came back into my life recently. when I told him i was sick he wrote me back on facebook and said that he would be there for me and my boys what ever we need but he has not called me or even wrote me back since. I have a BF who lives with me but is not loveing or supportive and I have told him I want to split up because he does nothing to help me or support me gives me no love or affection and it hurts too much I just want him gone that way I will not have to feel everyday that i just wish he would love me and take care of me or understand. He tells me I just want attention. I have gotten to the point of not wanting him at all my love went viral and is turning to hate. I am constantly mad its driving me nut. And I realize its making it worse he has his brother stay at our house everyone makes a mess nobody cleans it up and then his brother gets mad because Iwill not give him a ride when I have to take one of my kids to the doctor. I told him off and he calls me names and says I am a lazy slob. When he does not clean up his mess in my house. He even told me he hopes the Lyme kills me. And his brother my BF does not tell him off. does not stick up for me. I cannot handle it anymore. Nobody understands or cares what I am going through. It has turned me from Angel to Devil at times. devil I'm sorry that you feel this way Hanna and I hope that you have support. I see its been a while since your post but I hope you see this and know your not alone.
Posted 5/10/2013 6:04 PM (GMT 0)
@dont tear mywings off....sounds like you need me to stop by and kick some serious butt.
Posted 5/10/2013 6:08 PM (GMT 0)
Thank you Opugirl Ur right I wish i had someone who would stick up for me and be there for me and tell the people who are around me what I am going through and how they are making it worse...The worse part of Lyme is feeling like nobody cares especially the ones you need to...
Posted 5/10/2013 9:03 PM (GMT 0)
@DontTearMyWingsOff: Nobody can understand what you're going through other than another Lyme sufferer. Even the supportive people, though their support is much appreciated, cannot begin to understand. I'm guessing that because your docs are testing you with Igenex you've found LLMD's? If so, stick with them. If not, find an LLMD or a Lyme-literate naturopath ASAP. It's expensive but it's worth the money, and you can't put a price on your own health.

I feel you in your anger and frustration when you go to the hospital and they tell you it's all in your head. Nothing is more infuriating when you feel that pain, and that fear, and someone who is supposed to be a "health professional" belittles you for your illness. Countless times I've had episodes where I'm convinced that I'm going to die, the pain is so excruciating and my brain is so jumpy that I'm thinking "this is the end," and I want to go to the hospital because that's where you're supposed to go for emergencies, but I know it's a lost cause because of how they treat me and I just suffer through it at home. It shouldn't be that way.
When you start treating for Lyme, it will get better. It's a long struggle but it sounds like you're catching it early enough that it won't be SUCH a (seemingly) endless road to regain your health. You'll start having "good days," where you almost feel completely normal, and you'll have fallbacks, but the idea and the hope is that the symptoms slowly drop off one by one until your lyme goes into remission. I see a naturopath who's trained under a doc with a PhD in Lyme studies- they are an institute of Lyme specialists- once every two months (it's practically $600 just to walk in the door and it's two hours away, but they give me the initial protocol to follow). Then I have weekly appts. with a local doctor who gives me an IV treatment and monitors my protocol. I urge you to do online research about the best doctor for you. If you can't find one in your area check out ILADs. Since you caught it sooner I might suggest the antibiotics route, maybe even IV antibiotics for your terrible symptoms. Mention these things to your doctor.

Possibly the most important thing is to do everything you can to lower your stress levels. For me, the more stressed I am, the more the Lyme attacks my nervous system and makes me feel awful. This is because stress weakens the immune system so it's defenses are down. You need to do all you can do to strengthen your immune system, which majorly involves removing stressors out of your life. Know what that means? It's time to kick those a-holes out of your house NOW. The last thing you need are two negative idiots hanging around who don't nourish or protect you and who act like parasites to your life and your children's lives. Get them out, live with your children, your loving son, who is working his tush off to help his mother. That is the kind of support you need, he sounds like a wonderful and caring human being. Make sure your boyfriend and his brother leave you alone for good, nurture yourself as much as possible, and let your son nurture you. Make sure he knows he is loved (though I'm sure you do. :) ). If you ever want to contact me via email, let me know. I'll be happy to share some of the things I do to stay well/get well.

It's not easy angel, but we're here for ya.
Posted 5/10/2013 10:00 PM (GMT 0)
Donttearmywingsoff,

You definitely need to start thinking about you, cause living with that kind of personalities is like living next to a black hole, sucking up what's left of your energy...
You need to invest all the energy that's left into getting well, not into black holes... devil

Your son sounds great, it's people like that that you need around you. It's great that he behaves like this at such young age, wanting to take such responsability.

about your BF and his family member: some people are just not capable of loving another person besides themselves. It's hard, but the truth...

And those drs... well, they don't deserve to have that title... trust your own body and what you feel, that's what I did, no dr could convince me into thinking it was just between the ears. It IS between my ears, but not in the way they suggested - lol...

Good luck, you've been through much, you must be strong enough to get through this too!!


Marie

 

Posted 5/10/2013 10:05 PM (GMT 0)
Hi Don'ttearmywingsoff,
Welcome to our little community, where you absolutely will find love and support!!

You do need to put your foot down and get a handle on what's going on in your house. The stress is really, really bad for you right now. For one it makes what pain you have feel a lot worse - and with these infections, the pain is very real and very strong for many.

Have you read through our "New to Lyme? Start here!" thread yet? If not, I really wish you would!! It's packed full of really important information that will lay the basis for your learning about these infections and it also has a lot of helpful info in it - like detoxing!! There are also symptom lists for the different diseases, which doctors use to diagnose most of the time. That way you can figure out which infections you most likely have. With your leg pain, I would guess Bartonella is responsible, and for the trouble breathing and the chest pains I would guess Babesia. Did you happen to take a picture of that rash? That would be ideal, as the Bulls eye rash is all you need to confirm Lyme disease, as that's the skin form of the disease. Just take a look at those symptom lists to see what you believe you most likely have.

Of course we are here to help you find the info you need as well! There are many different types of protocols to choose from for your healing from these infections depending on things like whether or not you wish to use abx (antibiotics) or natural medicine to heal from these infections - yes! natural meds - herbs and homeopathic meds - really do work to heal these diseases! Many will combine herbs and abx, others will use only abx, and others, like me, use only herbs. The choice is yours.

If you wish to use abx, we have a list of places that you can contact to get the names and addresses of LLMD's (Lyme Literate Medical Doctors) who know how to treat tick-borne infections.

There's a ton of information to learn, but we are all here to help guide you along the way - no matter which protocol you use!

Above all, you are NOT alone in this! smilewinkgrin
Posted 5/11/2013 6:33 AM (GMT 0)
Thank you all for your support. Traveler I very much wish that I had a picture of my rash but I did not realize that I would need it. I have eye witnesses who could describe it thats about it. I did take a look at the beginners page and it has a lot of info. I am so happy I found your site. Though it is hard right now for me to concentrate and read all that I need my eyes are also doing funny things. That are not so funny... I would love any information you can give me. And I am interested in treating without antibiotics. I am not sure what antibiotics are used but I am allergic to penicillin and amoxicillin. I am having really bad stomach issues as well. The detoxing seems like a sensible thing to do and I can see how it would be good for you. I am having memory problems and walking and talking strangely stammering and not thinking of the words I need to use. I have so many more of the symptoms on the list I can go on and on. I am not so sure that I got to it early I think I may have had it at least a year. That does not seem too early. I am having the late symptoms as well. If you would like to email me my email is the same as my name just lower case and gmail. Thank you so much for your support. I also wanna thank Hanna and Mariel for her support as well and I wanted to say that I am planning on moving to WA. Last night I spoke with an old friend of mine and she told me she wants me to move there and she will take care of me. I have decided that thats what I am doing and today I asked her to start looking for a larger house for us and she is and she is looking for doctors for me there and is actually looking up Lyme to see how she can help me get better. God has answered my prayers. Someone I love actually cares enough to care about me. and Look into what I am going thru. My BF will not be going with me. I had asked him over and over to move I am the one with the kids. you would think he would be man enough to do that but he is too selfish so I am moving. You are right all of you I need to remove the negative from my life no matter how bad it hurts it will only make me hurt worse to keep it there. Thank you all for being there for me.
Posted 5/11/2013 10:28 AM (GMT 0)
Hi Wings,

Welcome!

I agree with the advice you've been given. The stress will make everything worse.

Can we help you find a Lyme Literate doctor or naturopath?
Posted 5/11/2013 11:34 PM (GMT 0)
Yes please I need help finding one I am moving soon to Spokane WA and I need to find one there and perhaps they can get me in before the doctor here does. I am hoping to get moved there before the summer is over so my children can start school there. By the way I have been trying to tell myself I am imagining it or its just a case of copy cat but I am starting to suspect my 8 year old is having some similar issues that I had in the beginning. Can you tell me how to check my son for symptoms he is young and I am not sure he can describe how he is feeling as an adult would. Will they test him if I suspect it without me knowing of tick bite? I want to tell myself that its not possible but what if I am wrong? I don't want him to have to suffer as I am. Please help me he is having problems in school and stammers a lot says his leg hurts a lot I thought this was growing pains also says he does not feel good. and his stomach hurts. And he has tears in his eyes when he is not sad. I told his doctor but he dismissed it all as if it were nothing. does this sound like Lyme? What should i do? My childrens Dad was recently diagnosed with brain disease and institutionalized I have no help...
Posted 5/12/2013 3:43 AM (GMT 0)
The doctor who used the Erchonia Cold Low Level Laser is in Vancouver, Wa. He doesn't cost much if you are interested Andy and Hanna. He uses it to reboot the immune system so it will attack the Lyme. You can email me if you want his office info.
Posted 5/12/2013 4:07 AM (GMT 0)
For those of you in Washington state... isn't the well known Dr. Klinghardt in Seattle....? If I lived in Washington, he'd be the first doc that I'd try to get an appt with. You might think about considering him.
Posted 5/12/2013 6:25 AM (GMT 0)
I see a woman at Sophia Health, Klinghardt's practice. She and everyone who works there have trained with him and use his protocol.
Posted 5/13/2013 4:09 PM (GMT 0)
Thank you I will try to get in to see him then. Hanna how long have you been seeing Kinghardt? How much has it helped you? Do you feel better then you did? What can I expects?
Posted 5/13/2013 8:08 PM (GMT 0)
DTMWO- I've been seeing a female doctor who has trained under him. I've only seen her twice in person, but she also does telephone appointments as check-ups, so I've been doing those as well. Their methods are more unconventional than a Western doctor because she is a naturopath, but I trust them because Dr. Klinghardt is a revolutionary in Lyme medicine and has had a huge success rate with his treatments. You can expect dietary changes and a very strict protocol that you MUST stick to, even though there are about a billion things to remember. The protocols are lengthy- in the beginning I had to make this nasty drink and drink half in the morning and half at night, with also about 23 different supplements in the morning and at night. She also did some B-vitamin injections while I was there. The idea is that the further along you get, the less supplements you have to take. They're all about building up your immune system to be able to fight off the Lyme while also taking powerful supplements that have been shown to kill off Lyme.

I do feel better, but with Lyme it's an uphill battle that sometimes feels like you're losing. But then I have to remember "okay, last winter I had such bad sciatic nerve pain I could barely walk, and the pain in my neck at night was so bad I'd wake up screaming." I am having neither of those things anymore.

I would ask about chelation. Chelation is a treatment I've received with a doctor more locally, but it's helped tremendously, maybe more than anything else. There are oral chelators and IV chelators. Some people combine both but it's important to know what kind of supplements to take with this treatment because they're intense. I'm doing an IV chelator, which is where you go in for a weekly IV treatment that is a shot of vitamins and then a shot of something called DMPS, which takes out the heavy metals in your blood. Apparently Lyme spirochetes can bind to metals and become weighed down, so they're much harder to flush out. When you flush out heavy metals, you flush out some Lyme, and then your immune system has also been built up to better fight it, so the leftovers are easier to get rid of.
I did chelation all last winter and all summer I felt GREAT, like a totally healthy and normal human being. I was an idiot about it though, and since I was 22 all I wanted to do was party party and have a good time because of how much I've missed out on. That meant I didn't keep up with any sort of protocol though- I stopped taking everything, stopped going to any doctors and did a lot of things to compromise my immune system because I felt like I could. "No more doctors!" I thought, "I'm a normal person again!"
Do NOT ever do this. If you feel good, keep up with the treatments. I was whacked harder this past fall than I ever have been and have been sick since. I made very poor choices because I thought I was better, this is a bad mistake to make. Not worth it.
But my point is, I did chelation and it made me feel tens of thousands of times better. It might not be for everyone, but maybe ask about it and see what they think.

Best of luck to you here in WA. Feel free to ask me any questions you might have.
Posted 5/13/2013 9:27 PM (GMT 0)
I'm sorry all, but it's time to start a new thread. My post makes 40 in this thread and it's hard on the server to have long threads.

Please start a Neuro Lyme Part 2 thread. :-)
Posted 6/1/2013 1:24 AM (GMT 0)
I had all of those sx. The rushing feeling for me----which is terrifying -- was caused by multiple pvcs in a row. Magnesium helped. Also i have and inthink that was responsible for some of the other feeling. Get to an llmd and if u can't afford it gets natural abx, in understand how u feel. I really 100% thought I was dying. :( hang in
Posted 6/1/2013 6:30 PM (GMT 0)
Something that has helped me SO much is 'Heel Inc Detox Kit Oral Drops'. I put 30 drops of each of the 3 bottles in a bottle of water each day and sip on it all day. It has greatly helped my vertigo, headaches, dizziness and head pressure, NOTHING has helped like this has! I will keep using this on a regular basis because of the improvement while using it!

http://www.amazon.com/Heel-Inc-Detox-Kit/dp/B0012M0U28/ref=wl_it_dp_o_pC_nS_nC?ie=UTF8&colid=193UFHWKBZOHJ&coliid=I34T8X4M50XR3W
Posted 6/4/2013 7:12 PM (GMT 0)
Okay, Folks - this thread has too many posts in it. The servers have a hard time with long threads, so if anyone wants to post more on this subject, please start another thread (make it "part 2" so that people can easily find it!), otherwise I'll have to lock this thread.
Posted 12/3/2014 10:49 PM (GMT 0)
same problem Andy, I can't contact you no email address
Posted 12/3/2014 10:59 PM (GMT 0)
Welcome to our community. Andy has not been seen on this forum for over a year now.

I don't know if it's the same doctor that Andy was talking about, but I do have a listing of a LLMD in Portland. If you will email me, I'll be happy to share the contact info with you of that doctor and any in nearby areas as well. You can send me an email by clicking on the blue envelope under my screen name on the left.
Posted 12/3/2014 11:45 PM (GMT 0)
Hi Hanna, I have been on here since the spring. My son is 16 and has neuro lyme. He had a knee swell in 2010, 4 wks amox. and they said he was cured. All fresh. yr. he was psychotic, beating himself, screaming all night, raging, it was NUTS (and he used to be like top 10 in class). NO ONE listened, all the dr.s therapists, etc. said he was OCD, ODD, TICS and Bipolar finally after a mental ward stay - which he still hates us for. It was a nightmare year and he would not tell us ANYTHING. Almost jumped out of car several times on way to a dr., now maybe I have an idea of what was happening to him. Dr. B was pres of ILADS and he was where I started. He did say it could be really bad stuff in his head.

My other son is 22 and was also infected they were in a tent together for scouts. He refuses to take precautions on a protocol and I pray he stays well - he's tall and strong and works out and if he starts raging, I'm done!

A good lyme dr. will help you, but so far, my younger son is 6 months on protocol and is FINALLY just turning a corner. Home instruction for school and does NO work - and he was SO competitive, I feel bad he is missing the cool stuff like Mock Trial, Math Team, etc. like my older children did at South.

Hang in, and these wonderful people on this site will keep helping you. It's saving me. A couple of weeks ago I was pretty much at the point of suicide, and I'm "only" the caretaker.... it's an AWFUL disease. I'm trying to think of a way to spread more knowledge about it, those who have made strides, but it needs more. SO MANY are undiagnosed or misdiagnosed. They say 40% in prison and mental wards... I totally believe it. SO TICKED (sorry the pun) at the psychiatrists at the hospital. DON'T trust any regular medical people - they don't know or want to know anything....

PS SORRY Traveler, I did not see your message until after my post - so trying to still squeeze in! Love you!

Post Edited (Lovemychildren Mom) : 12/3/2014 4:52:47 PM (GMT-7)

Posted 12/4/2014 10:51 PM (GMT 0)
No problems, LMC Mom!! We all work together to try to help each other!! :-)
Posted 12/5/2014 2:15 AM (GMT 0)
Hi hanna rose i feel the same way i was scared to go to sleep.from my heart racing waking me up and my head shakes body jerking jaw clenching down felt like a loony toon i also wondered about sleep apnea i do take ativan at night without it i would not sleep so hang in there i still go through it and it is terrifying just want to be the old me i pray for you all hugs jennifer
Posted 12/30/2016 2:54 PM (GMT 0)
mine has same issue but then i stop taking probiotics then all went away..due to immunocompression some people can" t tolerate this simple thing.i hope your problem will go away
Posted 5/7/2017 3:39 AM (GMT 0)
Wow, what a great supportive forum! I am so glad I've found others that can relate to what I'm going through! First of all I too feel so sad you are so young and going through this horror! I too am 45 and the past 2 and a half years have been like a nightmare! I finally got diagnosed after a year and a half of seeing many, many doctors! I don't know how many times I heard that it could be my hormones!!!! I've been on antibiotics for 7 months and thought I was starting to get better but the last two weeks I feel again like I am slowly dying! I was also diagnosed with babesia a few months back and have only been doing some herbs for that and we haven't gotten far. I am having horrific neuro symptoms: occipital neuralgia, shakiness, dizziness and panic. I feel lost because every time I try a medication to get relief it gives me horrible side effects! I don't know if I am having a flare or a very long herx or if something else is going on with me! I am so, so scared! The only thing that I did differently was I increased my herbal drops 2 week a ago and then I just started falling apart! It's so hard going though this, I have 3 children, my youngest is 5 and I just want to be well enough to be a good mom! Thanks for listening to me sob, that is one thing I do a lot of lately!!!
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