posted
I'm sitting here crying as I type this, I cannot take this any longer. I'm trying my best to keep myself together and it's so hard. I feel like I'm dying slowly and Dr's are on the sidelines with their snacks watching like this is a football game. I cannot believe how fast my life is changing and how slow this process has become. This is not fair, to anyone! I'm waiting for my LLMD to call back so I can even make an appointment (which could be weeks away). I know they are busy and there are a lot of people who are sick, I totally understand.
I'm declining so bad, my mom actually had to fly down and care for me. She has to leave soon because she has to work. I really need her by my side as an advocate and fear I cannot get seen fast enough for her to come with me. I was going to go home with her to seek treatment there, however, thats probably only delaying the process. These nuerological symptoms are killing me! My neck is stiff my vision is failing and I have such INTENSE pressure in my head. I do not want to die, trust me, but everyday that goes by it gets worse and worse. I feel like a rat in a cage.
I'm sorry I have to be so depressed today, I just can't take this!!!!!!!!!!!!!!!!!!!!!!!! Sometimes I feel like I won't wake up. I have too much to live for. I'm praying that my phone rings and I can get an app't or I don't know what else to do, I'm at a loss!
-------------------- "don't ever write anyone off, you'll never know who or what they will become" Posts: 115 | From la la land | Registered: Apr 2007
| IP: Logged |
I am so sorry your feeling so poorly. This is the toughest battle of my life. Feeling like the medical community doesn't care doesn't help. Coming here helps me get through those tough times.
I have been where you are so I know how awful you feel. Having your mom for support is wonderful. Is it possible to find an LLMD near her that you can get an appt. with sooner? Do you have anyone else to help take care of you? My mom passed away when I was just 19. I miss her so much and I often think things might be a little easier for me if she were here.
There have been many days when I felt like I would go to sleep and not wake up. Some days I really feared that and other days I wished it would happen. Not that I wanted to die, I just didn't want to live like this anymore.
Lean on anyone you can for support to help you through this. I hope you find some relier soon.
Somehow most of us have gone through the same situation....yup...I remember those hopeless days.....my suggestion besides being patient, is to keep fighting this disease and never give up.
I thought my bad days would never end....really... and now that my daughter is really sick these are the thoughts I keep in mind. I know sooner or later all the bad stuff will be something from the past.
It is hard watching your little one hurting, I rather be again in pain.....
It takes time, effort and discipline to get better. You will see: bad days will begin to decrease while the good ones increase...
In the mean time be active helping and spreading the word about The Truth of Chronic Lyme.
Posts: 983 | From The sky | Registered: Feb 2005
| IP: Logged |
posted
I share your symptoms and I know exactly what you're saying.
The pressure, for me, it's behind my eyes and in my lower jaw and around my ears.
And my neck is stiff, too. What is the purpose of all this suffering?
Posts: 353 | From Florida boonies | Registered: Nov 2005
| IP: Logged |
5dana8
Frequent Contributor (1K+ posts)
Member # 7935
posted
Hi Dizzy
Sorry to hear your are hurting & feeling so bad
I went 7 years without a diagnosis & do empathize what you are going threw feeling like the ducks are on the side line with popcorn...while you are suffering.
But hang in there & when you find a LLMD trust me your life will change for the better.
Hang in there till then
I promise things do get better over time with treatment
-------------------- 5dana8 Posts: 4432 | From some where over the rainbow | Registered: Sep 2005
| IP: Logged |
AZURE WISH
Frequent Contributor (1K+ posts)
Member # 804
posted
I understand. This disease is one that is challenging to overcome on so many levels.
It is so difficult watching your life slip away.
Most the time I am more of the " rage against the dying of the light" (dylan thomas)
but believe me I have my moments where " despite all my rage I am still just a rat in a cage" (smashing pumpkins)
The worst of it always passes though. Trust me on that one... On my really bad days I just have to remember that it will get better and I will get through... I always have.
And please remember that depression is also a symptom of lyme and sometimes it is like clouds blocking out the light. Believe me the light and heat of the sun is still there even durring the times you cant feel it.
Things will get better with treatment. Hang in There
I wasnt diagnosed for 13 years so I also understand you frustration with the medical community.
I know how you are feeling - I share lots of your symptoms too at the moment.
Please hang in there. We have to keep on the battlefield, and we can't let this illness beat us...... I know it's hell, and I,too, find it all way too much at times, but there are better times ahead! Keep believing that!
Sending healing hugs your way. You are not alone. Elaine
Posts: 261 | From Herx-ville!! | Registered: Aug 2006
| IP: Logged |
posted
Thanks everyone, really from the bottom of my heart! If it wasn't for this board I would be locked up in an asylum right now and thats the truth. I hate having to drug myself up just to be able to deal with these feelings and pain, but I have to at the moment. My symptoms increase 10 fold just going to the store. It's like ANYTHING that I do that involves physical exertion kills me. Sometimes I don't do anything and it kills me. It's so crazy!
I just read somewhere that Dr. C (in FL) is stopping treatment? Is this really true? It's like just when you have some hope....BAM!
Thanks for making me tolerate this a little longer, you all are great. I've been feeling sick for almost 10 years, all these symptoms fluctated and I was learning to deal with them (a little). Recently, I had to totally stop working (went out on Short term Dis.). I could not stand one more day barely getting my job done and then comming home and crashing. I let things get really really bad, and I hate myself for that. I promised myself to never let things go when it comes to your health.
I have a whole new look on the medical field now. It's practically inhumane the way HMO's and ducks operate. I guess that's why they call it "Health Insurance", it's only good for when you're healthy!
Thanks again all, I'm trying so hard to keep myself together. I'm sitting tight with my teeth clenched waiting for this call, UGH!
-------------------- "don't ever write anyone off, you'll never know who or what they will become" Posts: 115 | From la la land | Registered: Apr 2007
| IP: Logged |
posted
Hang in there Mrs. Dizzy I understand completely where you are coming from... I have been going through this for over 10 years now and probably have been infected for most of my life! I am 44... I have 2 small ones also that I have to be here for (7 & 10)... it is such a struggle some days I wonder how I've gotten this far... sometimes it all seems like too much, but I've made it through every time.. and plan on continuing to do so. I am going through a very tough time right now also, but will keep on going... the though of not being able to work for me is devastating... two weeks ago though I felt like I wasn't able to work though and missed several half days and one full day.
Do you have any small children to care for? It can make it much more difficult the stress of that in addition to not feeling well, some days I have little patience, but am trying hard to do better in that area with them. It certainly isn't their fault I am sick. I do have windows of times that are pretty "normal" or normal for me I should say, and that helps me.
Try and do good things for yourself, relax, pray, watch a funny tv show, all those things will help you while you recover.. and you will get better, believe me you will, it takes time and experimenting with different things, etc. etc.
I understand your anger with the medical community... I'm right there with you... so many doctors that just don't know a thing about lyme and look at you like you are crazy when you mention it. UGH!
Well take good care of yourself and try and hang in there.. take it a minute at a time if you have too... there will be light at the end of your tunnel! I'll say a prayer for you also!
Stephanie
-------------------- Stephanie Posts: 802 | From Reading, PA, USA | Registered: Aug 2001
| IP: Logged |
I GOT THE CALL! I'm going to see Dr. C tomorrow due to a cancelation! This is so uplifting! I thought for sure it would be weeks (since they said they were behind about a month). I owe it all to you guys! Thanks for all the support and positive thoughts. I'm amazed and in shock, this is awesome!
I feel hope, finally!!!!!!!!!!!!!
-------------------- "don't ever write anyone off, you'll never know who or what they will become" Posts: 115 | From la la land | Registered: Apr 2007
| IP: Logged |
trueblue
Frequent Contributor (1K+ posts)
Member # 7348
posted
Yay! Good luck, mrs Dizzy!
What you have written hit powerfully close to home for me. It gave me hope knowing you've got an appointment.
-------------------- more light, more love more truth and more innovation Posts: 3783 | From somewhere other than here | Registered: May 2005
| IP: Logged |
YAYYYYY!!!!!!! Good luck at your appt. tommorow. Maybe all of our energy zoomed your way.
Have a list of questions..written down..with you. Sometimes when I goto my LLMD I am so excited to be with someone knowledgable all I do is babble. Then I remember everything I wanted to ask after I leave.
5dana8
Frequent Contributor (1K+ posts)
Member # 7935
posted
miss Dizzy
good luck tommorow
-------------------- 5dana8 Posts: 4432 | From some where over the rainbow | Registered: Sep 2005
| IP: Logged |
Boomerang
Frequent Contributor (1K+ posts)
Member # 7979
posted
Good news for you dizzy. That was a very good suggestion that was offered to you. You really need to write down all of your thoughts and questions.
I'm happy for you.
Take care.
Posts: 1366 | From Southeast | Registered: Sep 2005
| IP: Logged |
posted
Just wanted to say that I wrote posts like yours-near death feelings. I used to only be able to empty the dishwasher one shelf at a time, resting in between.
I cried every day months. The pain is excruciating and unrelenting.
But now, 17 months into treatment, I have my life back and I am shocked every morning cause I actually did get better. I never thought I would survive.
I still have neuro symptoms--arms and legs tingling, headaches (now more managable), difficulty breathing sometimes.
You are going to be well again--the best thing to do is stay calm and love yourself alot-find small goals to boost your mood.
Come here often--we are in this together.
Kim
-------------------- We are spiritual beings on a human journey...
map1131
Frequent Contributor (5K+ posts)
Member # 2022
posted
Dizzy, I'm so sorry that anyone has to go through this ordeal. I remember when I too knew I was dying a slow death. Nobody can feel like this for days, weeks and months and recover??? Wrong, improvement can happen.
May your LLMD have something that will give you some relief and hope that better days are ahead. It will be trail and error trying different meds. Learn all you can about detoxing your body.
Pam
-------------------- "Never, never, never, never, never give up" Winston Churchill Posts: 6478 | From Louisville, Ky | Registered: Jan 2002
| IP: Logged |
posted
Dizzy As I read your post like soooo many here, I can re-live my own experience through yours. Some of us go years, learning how to adjust our lifestyles to accommodate the Lyme that has gone undiagnosed.
The good news is, THINGS DO GET BETTER. It's a very slow process, but it's still progress. My mantra: "patient and positive" I thought about having a t-shirt printed, needing to be reminded constantly that it will get better.
Kim's advise was perfect, stay calm, have faith and love yourself.
Good luck tomorrow and remember to be patient. Nancy
Posts: 69 | Registered: Jun 2005
| IP: Logged |
posted
Thanks all, you are the best!!!! I went to my appointment and I'm totally wiped out. I was in there for over 2 hours and got a lot of great info! Dr. C called IGENEX and got my results, the nurse said my results indicate BB exposure. (I got so much info my brain is spinning).
He wants to start me on IV Rocephin, Flagyl and 3 other meds (1 for brain swelling, potassium??, and I forget the other one LOL). Anyway, his staff was really nice and he was as well. All around it was the best Dr's appt I've had in a long time. I could tell him all these stupid little things and he didn't care. He was great! He knew a lot of symptoms without even me saying anything. My mom was shocked (she was int he room). He said "do you get cancre sores a lot"? I was just talking to my mom the night before and was complaining about all my cancres. It was funny.
Anyway, the only thing I have to worry about now is my PCP accepting his DX and protocol etc. I'm not gonna sweat it, yet!
I had all my medical records faxed over from my PCP and Nuero to him. He thought I may have intersatial (sp?) cystitis. All my urine cultures (about 5 or 6 of them) were positive for WBC, bacteria etc and this was only a 2 year span.
When Dr. C was reading over my records from the nuero (the one I posted about that said I think you have LD) and he said "who is this guy, and where is he from?, he's brilliant". Dr. C said I got lucky for a Dr to even bring that up.
Thank you everyone for all that you've done. Even though I feel like sh** I know there are good things to come of this. I'm on the right road thanks to everyone here. I'm so glad I have a good family too that supports me and knows I'm really sick!
Here are my Igenex results (I wasn't positive on many bands). I was on my 5th day of augmenton (for a UTI) when I got this blood drawn. I'm not sure if it effected it at all. Should I retest now without anbx in my system?
Thanks again:grouphug:,
Mrs. Dizzy
Igm western blot 23-25 IND 31 + 39 IND 58+ 66+ 83-93 IND
-------------------- "don't ever write anyone off, you'll never know who or what they will become" Posts: 115 | From la la land | Registered: Apr 2007
| IP: Logged |
22: Possibly a variant of outer surface protein C.
23-25: Outer surface protein C (osp C).
28: An outer surface protein.
30: Possibly a variant of outer surface protein A.
31: Outer surface protein A (osp A). 34: Outer surface protein B (osp B).
37: Unknown, but it is in the medical literature that it is a borrelia-associated antibody. Other labs consider it significant.
39: Unknown what this antigen is, but based on research at the National Institute of Health (NIH), other Borrelia (such as Borrelia recurrentis that causes relapsing fever), do not even have the genetics to code for the 39 kDa antigen, much less produce it. It is the most specific antibody for borreliosis of all.
41: Flagella or tail. This is how Borrelia burgdorferi moves around, by moving the flagella. Many bacteria have flagella. This is the most common borreliosis antibody.
45: Heat shock protein. This helps the bacteria survive fever. The only bacteria in the world that does not have heat shock proteins is Treponema pallidum, the cause of syphilis.
58: Heat shock protein.
66: Heat shock protein. This is the second most common borrelia antibody.
73: Heat shock protein.
83: This is the DNA or genetic material of Borrelia burgdorferi. It is the same thing as the 93, based upon the medical literature. But laboratories vary in assigning significance to the 83 versus the 93.
93: The DNA or genetic material of Borrelia burgdorferi.
The significant antibodies, in my opinion, are the 18, 23-25, 28, 30, 31, 34, 39, 58, 66 and 93.
[from the above link by Dr C of MO]
I'm so glad your mother was able to go with you. It's always great to have your relatives HEAR with their own ears what is REALLY going on!!
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
| IP: Logged |
Thats a great explanation!!!!!!!!! Thanks! Well guys, I hate to say it, but I'm official. I know this sounds crazy, however, when you're sick for so long (7-10 years) it's almost relieving to find a DX. It's finally something that makes sense to me, I thought (don't laugh) I had syphilis for a long time.
I was seeing an eye Dr, an ENT, a Nuero, PCP, and a pain management Dr. all for seperate symptoms, I knew all along EVERYTHING was related!
Atleast now I know how this can be treated and although it's a long road from here, atleast I know the directions!
I have an app't with my PCP tomorrow, we'll see how she takes it. I have faith in her (I have to). It's good that I have my mom here with me. Dr's act so differently when you have someone with you in my experience.
Thanks again, if it wasn't for this board I would have died never knowing!
-------------------- "don't ever write anyone off, you'll never know who or what they will become" Posts: 115 | From la la land | Registered: Apr 2007
| IP: Logged |
The Lyme Disease Network is a non-profit organization funded by individual donations. If you would like to support the Network and the LymeNet system of Web services, please send your donations to:
The
Lyme Disease Network of New Jersey 907 Pebble Creek Court,
Pennington,
NJ08534USA http://www.lymenet.org/
UBBFriend: Email this page to someone!
![[group hug]](graemlins/grouphug.gif)
![[Smile]](smile.gif)
I'll say a prayer for you also!![[woohoo]](graemlins/woohoo.gif)
miss Dizzy![[hi]](graemlins/hi.gif)
Printer-friendly view of this topic