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Lyme Disease Support Network

I feel like I was thrown out the door


#1

I’ve been diagnosed with RMSF and Ehrlichia chaffeensis along with Lyme’s. Have been out of work over a year with a mood disorder so I have no insurance. I had all the signs of Lyme, bulls eye rash. Numerous other rashes on my body and arms. Belly’s Palsy. Fever fatigue joint pain. Im using the country health department. The nurse practitioner treated me with 2 weeks of doxacyclin. When I came in for more blood work a week after I completed my antibiotics they basically said that your cured and never did draw blood or want me back in.
I am having a horrible time with pain in my legs and hips, can’t think straight, my eye twitch’s to where I can’t see. Vertigo low blood pressure, Depression and thoughts of just not being here any more. I have no support system. No family or friends who will listen. They say I look fine. Just like when I had to stop working. No one can understand what’s going on inside.
I don’t know what to do or where to go for help. I’m in therapy through the County and they have increased my antidepressants but it hasn’t helped my bad thoughts. I feel lost and very alone.


#2

I completely understand how you feel! Did you have a western blot done?? I live in Louisiana and no doctors would take me serious saying we didn’t have Lyme here. I knew I got bit and put all my symptoms together. I have been treated 3 years off and on with antibiotics and I’m still not better. Amazing how we “look” fine
, but we are so sick on the inside.

Are you seeing a Lyme literate doctor?


#3

No I’m not seeing a LLD. All we have here where I live is the the county health department for people with no health insurance. My Lyme’s test is still down with the CDC supposedly they are back up. They diagnosed me just by my rashes and other problems. I just don’t know what to do or where to go. It’s nice to talk to someone who knows how this feels. I feel defeated.


#4

The test is so inaccurate too that’s the bad part. I have had Lyme 7 years and I started feeling completely horrible again recently took another western blot and 9 out of 12 bands on the igm test was positive but igg only had 2 bands positive and I know I didn’t get re-infected…it’s just crazy


#5

Finely got to see another doctor. I hope this will help. They pulled blood. Have me on doxacyclin for two weeks. And want me to come back in October.


#6

Hello, that is an interesting name. Seems the first best thing to say is YOU ARE NOT ALONE. Yes, for a time you may be in Hell, IT WILL NOT LAST. When i read some folks posts, I tell them that I was deserted by my wife the same week i was finally diagnosed, lost a nursing job I had just started when I started treatment because of that and the stress of my marriage ending, no job, no money coming in and no family for 600 miles, SO I GET IT.
Myself I believe that traditional treatments as done by the establishment do not work, instead they only in some cases get short symptom relief, so we get sick again and again… But thats okay, there are better ways to help you, perhaps you can look up a treatment called LDI or low dose immunotherapy,it is a European treatment, basically in my case it saved my life. I know that with the disease we can want to drink alcohol more to cope and supress the pain and depression, I believe it has a biochemical bases related to the disease, so if you drink, probably important to stop, as it greatly increases body inflamation and changes chemcial balalnces in our brains in a bad way. For learning, there is a spec center web site called envita, it has some great videos on how lyme works, it may help you and your family understand a bit better.
Anyhow, I was sick for ten years, diagnosed and treated for the last three. Finally thank God, my Doc tells me the worst is now getting more and more behind me, HE WAS RIGHT-THIS CAN HAPPEN FOR YOU. Believe me, it was hard to pay bills and survive with most times no help or family, like you I have had many periods of no insurance, my lyme injections are for cash becaue they work, so insurance would’nt cover them anyhow. Thats okay they are now every 4 months and less then 100.00 each, so I can afford that.
Your faith here is your greatest ally, it is in my case. The western blott was useless in my case, a test called the Lyme immuno assay was used to diagnose me. I hope this may help you in your heeling. Its not you, once you are correctly diagnosed and start good tretment you wil get better. My doc also has me on a few natural things, such as cats claw to help kill the disease and tumeric really helps with the pain swelling, but it takes time to start working, it you try it be patient
Oh yes, you may wish to look up something called Biofilm in lyme disease, it is a defense system the disease bacterial has that one can cloke them to antibiotics in your body and two make them immune to the same antobiotics if they are in a life stage where they can be detected, may helpyour oc get it. I have an RN since the ninties, doctor does not indicate smart, either does nurse. Oh yeah also perhaps look up something called a Jarisch-Herxheimer reaction and show it you people you know… Bless you during this time.


#7

Raybo Thank you for the information about biofilm and sorry no to be answering you earlier. I have been so foggy and unable to apply my mind to anything. I live in a very rural area and don’t have much choice in my doctor’s. Especially with no insurance. It’s been a rough go. This all has really beat me down the Lyme and my other problems.

I saw another nurse at the Health Department and she said that I should have been given another 2 weeks of doxacyclin. Plus she drew more blood and sent it off. I have never got my results back from the CDC just the state. It will probably come back negative anyway from all I been reading.

This has all made me feel very alone. My family has given up on me. Friends don’t bother with me anymore. I’m glad to have found this group. People who understand.


#8

Jarisch-Herxheimer reaction? Did you look it up? Seems like that may explain some of why your feeling so sick kid. You may be having a lyme die off, which is good and bad at the same time. The bacteria is dyeing, but they release poisons when they do, which makes us sicker. The only real test I know of foe detecting lyme is called the Lyme Immuno Assay, usually the government I believe uses something called a Western Blott, in my humble opinion rather useless, but I get its what you have.
Believe me, there is SOMETHING HIGHER in your life then family and friends, you are never alone, not really. Will they run a test for you called C4A? Its supposed to help evaluate immune system inflamation response. If your pain both mental and physical are increasing, that may show then extent. but again its not widely used. Do you have acces to perhaps a public gymor the like? Infra red sauna can help much for killing Lyme and helping with pain, but you must remember to take a shoer just when you get out as the poisons will be reabsorbed by your skin.
Perhaps you can google/search for LDI treatment places/docs in your area?
YOU ARE GOING TO BE BETTER!


#9

hi there I had a positive lyme test but negative western blot anyone else have that happen? my doctor told me i was positive for lyme disease…


#10

Hey julz, the Western Blot is rather a waste of testing money I believe, many false positives and negatives with from what my understanding is. Your Doc may be going off of your symptomology in addition to your result, if he is, as an RN I believe that’s good, they are not narrow minded as many are. AS you start treatment, hope it is something like LDI (works for me), there will be hard times for you in all likelihood, THEY WILL NOT LAST FOREVER, hopefully you have a great support system with you during this time, praying can help in a huge way. Slow and steady wins the race. Take care.


#11

i had a positive elsa test but negative western blot so i was told that i
got a false positive but i have all the symptoms… i am VERY frustrated!!


#12

so you think i might still be positive?


#13

Well, my personal experiences with Lyme have taught me to never rule anything out. I do know my own Lyme Doc places around zero faith in the Western Blot. My tests were done with Immunosciences Lab for Lyme antibodies.
Listen, I get it, went through the same thing for years, had Docs tell me nothing was wrong, even though I had hormone readings where I should have been dead. Try to understand you are not alone, there are others like you who have had similar things told to them. KEEP THE FAITH .
May I ask what your Doc intends to do from here? I remember my doc having me do something called the cats claw challenge test to help confirm things. It did. Please check out the Envta web site to educate yourself on Lyme, it may help you more then you think, certainly did me. I believe its www.envita.com


#14

Hello Shararradee
How are things going since you saw another nurse? We haven’t heard from you, and we’re wondering how you are.

Seenie from ModSupport


#15

T

Thank you for asking. I am having bad cognitive problems. This brain fog totally gets me down at times. Loose my words, forgetting whole conversations in just a matter of minutes unable to do things that I use to be able to do.

The nurse did some cognitive testing with me last week. She wants me to see a neurologist. But I don’t have insurance so I’m trying AGAIN to get Medicaid. See how it goes this time.

I’m just worn out. It’s a real job getting up in the morning feeling like your loosing your mind. My mental health issues knocked me back. Lyme has knocked down flat.


#16

Shaharradee, I work all over Ben’s Friends thirty communities and I read a lot of very sad stories. One of the things that upsets me greatly is people having to advocate for themselves when they are feeling so poorly. Do you have any friends or a family member who could work with you on your attempt to get Medicaid? What a difference that would make for you.

I know that there are people here who have experience in getting themselves on Medicaid. Why not write a post asking for advice? That’s what we’re here for: supporting eachother.

All the best to you

Seenie from Moderator Support


#17

I am sorry to say bad news, but it may be a blessing you have no insurance, my lyme doc stopped taking it beacuse of communist government pressure and the cdc… So I pay for all my shots in cash that are very reasonable and een the offive calls every 3 months are doable. Things are going to start looking up for you, just when it appears no way they will.


#18

Not having insurance is really hurting me in other ways. I have periodic limb movement disorder which does not let me get into deeper sleep. My meds for that have been working well and I would wake up feeling rested. I believe that Lyme, no I KNOW that Lyme has done a number on my brain and my meds are not working like they did.

I need to see my neurologist again but can not afford to. Not just for my legs and sleep problems but cognitive problems too. The health department did cognitive testing and I have problems there. Can’t remember what the nurse said for me to remember I couldn’t even remember which hands went where on the clock. My poor balance and constant shaking inside and which is now showing up in my hands, head and legs on the outside is slowly killing me. I feel slow and ignorant. I really feel like giving up.

I’ve applied for Medicaid and am just waiting to hear from them. I hope they can see the trouble I’m in and will let me have it. But I’m not going to hold my breath.


#19

Okay kid here is the diehard rule we have to go by-GIVING UP IS NOT AN OPTION.
Trust me, I do get it, I was deserted by my wife the same week I was diagnosed, then until lately went through three years of insurance and no insurance when having episodes. Been broke several times selling retirement stuff to pay bills, God will restore, exactly when and how we aren’t expecting it, seen it. I really pray you get medicaid, and a genuine caring Lyme disease doc. ,
Perhaps you may want to look up some articles on CBD (pot oil with out the get stoned chemical in it), you can probably get it for around 90 bucks a month or so, been using ti myself at docs suggestion, it really7 helped my ability to heal and function better, no script needed here in Michigan I know. It seems to help many many people heal from lyme.You may also want to check out a web site called envita.com, they have great videos to help you understand what you are going through, and interviews with people who had very symptoms as well, they made it SO WILL YOU,


#20

Shaharradee,
I know your pain. I also suffer daily from lack of insurance and this damned crippling disease. Sure, we look fine, but i’d like someone to say that to my face in the middle of the night when i’m squirming from lack of sleep and pain. From self loathing. I manage to stay working and despite all the setbacks I actually have managed to keep my family in the black, but only barely. You’re right, people can’t understand this kind of disease and the many and changing symptoms. Clinics look at us like we’re bugs. Because they know they can’t help, they’ve heard about lymes, and what can happen. In many ways, the debate over whether chronic lymes is even a thing has only recently been resolved, which means it still hasn’t sunk in for much of the profession. My best advice is this: research and support your diet, make the changes, avoid the sugar (hard!); support your emotional health (Sam-E does wonders for me), and find a willing and sympathetic herbalist. Not wholistic health practitioner, they’re generally useless, and sugar water has never worked for me after 20 yrs of trying anything i could afford. Get a job! I know, honey, i know, but you cannot avoid the need for income. it will help in many ways; just get something you can tolerate, even like a little. any income will do; try to be around people but not need to heavily rely on team efforts, so you don’t risk emotional “misunderstanding”. And here’s the best tip of all, one i must always remind myself of (um, because we forget stuff), SEEK OUT OTHERS LIKE YOU. Get involved with these forums as much as you can. The worst part is feeling alone but Shaharee, you aren’t. space is all that separates us, my heart is there with you, right now, touching you on your shoulder, to remind you that you must persist. You can do it. each day, try a little. get a little further. let the stress of failure and want melt away each day by making an effort each day. even making your bed every morning is a step in the right direction. your emotional state must be your first goal, because when you haven’t got much it’s all the wealth you possess. find one person who will listen. there is someone in your life, mom, aunt (yes mostly the women), who will hear you, and in most cases you will have to show that you aren’t looking for someone to solve your problems for you. life is a hard place, especially for us. i will think of you with love, and i hope you will find some strength by doing the same for me. best.