posted
I am not sure if I should be posting this here or not and if it's in the wrong place I apologize. I havent posted anything about myself in a very long time.
I seriously think I'm loosing it. 15 years of this disease and all it's misery is catching up with me. 10 minutes ago I completely lost it and cried like a 3 yr old. I have had oral ABX along with IV abx, alternative treatments over the years and nothing has worked. We would see slight improvemets here and there and then nothing.
I have never tested positive for anything else but Lyme and co infection. I moved to the south from NJ in 2000 with the stupid *** idea that somehow I was going to get better here and I've done nothing but get worse and worse. I did go to the one doctor in the south here but it didnt work out for me and that doesn't make me a bad person nor the doctor a bad person it simply didn't work out. There are NO LLMD's here in south carolina and I am way too sick to travel to another state and financially in no position to either.
I haven't had anything in the way of Lyme treatment since 2000. My LLMD in NJ said she would work with a doctor down here when I moved. She didn't. Soon as I got here she cut me off.
In 2001 I aquired a massive swallowing problem. Ive been to the stomach doctors, had to barrium swallows, the Scopes, only to be told they don't understand why I can't swallow my food. All that was found was irritation from my esophagus down to the intestines and a small sliding Hiatal Hernia.
Since then I've been seeing an MD who is from all places, South Jersey but he doesn't seem the least bit interested in treating my infections or is afraid too. I have given him enough literature and treatment guidelines to choke a horse with. 2 visits ago with him he told me "I seem to think everything is Lyme disease" my last visit he said that since the Ativan seems to relax all the muscles in my throat it has to be a muscle problem but he doesnt know where its coming from.. HOW can he say that given I have told him all of my medical history?
He says that I guess because he's ignoring what I tell him. I have seen SO many md's here and NONE of them have the smallest CLUE about Lyme or it's coinfections.
I am currently 83 pounds at 36 yrs old. Everything I eat is puree'd and I live on soups, ice cream and Glucerna vitamin shakes and thats it. I am SO hungry. I went to pick up my records from the stomach doctor the other day and in his notes this man had the GAUL to say that he thinks I make myself vomit everyday! And that he thinks I am BULEMIC! This sent me right over the edge.
I would NEVER hurt myself in such a way and the truth is I am fearful of throwing up and have been for years! He also said that I TOLD HIM I had been hospitalized for anxiety.. That is a LIE! I have NEVER said anything like that and have NEVER had anxiety that bad where I needed to be hospitalized EVER! How could ANYONE in their right mind think that anyone would EVER want to be like this? How could he think I ENJOY NOT EATING anything and being SICK all the time?
I have an appointment with an esophagus specialist on Monday at MUSC in Charleston. I don't know what he will be able to do for me but I am at a loss and I don't know where to turn. I have read posts where people here use things to treat themselves but the sad truth is my memory and organizational skills to be able to put things together and make sense have deteriorated SO badly that none of it makes ANY sense too me.I cant seem to understand a word of it.
It's So frusterating! I want to understand, it just doesn't go together the right way in my brain and it's like a big ball of nothing but confused thoughts and I dont know how to fix it!
Im sorry if this post is long and I'm sorry if no one wants to hear me complaine it's just I cant stop crying, I am scared I am running out of time, and I don't know where to go or what to do anymore..Emotionally it's gotten to me. I am sick, I am deathly skinny , I am hungry and totally lost.
posted
I am so sorry about what is happening to you. I am not surprised that you feel like this given what is going on. But you need help. Can you find a medical advocate or see a LLMD?
You have my cyber empathy and I wish I could do more to help. We care about you - hang on in there.
Posts: 67 | From UK | Registered: Oct 2006
| IP: Logged |
posted
I am so sorry about what is happening to you. I am not surprised that you feel like this given what is going on. But you need help. Can you find a medical advocate or see a LLMD?
You have my cyber empathy and I wish I could do more to help. We care about you - hang on in there.
Posts: 67 | From UK | Registered: Oct 2006
| IP: Logged |
Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
Hey there...
Not to worry about whining. I am in that very same mode myself right now... so we should be a good "pair".
I'm sorry you are doing so poorly. As you know.. you need a LLMD.
If you email me.. I will try to find one for you.. and get you there.
At your appointment on Monday... MAKE them test you for Lyme, Bartonella.. and especially Babesiosis.
Don't "ask". Tell them you've been in NJ where these things are prevalant and you have had MULTIPLE tick exposures... and no one has figured out anything else.. so you want to be tested.. NOW!
sometimes I think the runaround by the doctors is worse than this miserable disease.
Could it be your doctor isn't far off with the swallowing being a muscle issue?
I have muscle issues from lyme that include swallowing, and they started gradually. A gastro may not be helpful, but an educated or at least sympathetic neuromusclar dr (not regular neuro)may be.
Again so sorry you are in this position.
Posts: 169 | From former Philadelphian | Registered: Jun 2006
| IP: Logged |
AZURE WISH
Frequent Contributor (1K+ posts)
Member # 804
posted
First I just wanted to say I am so sorry that you are having such a terrible time.
Drs can be quite rude... I had some bad expereinces with stomach drs myself.
They like to jump to false conclusions sometimes because it is easier than trying to figure out what is really wrong and how to fix us.
can I add erlichia (sorry my spelling sux) to tincups list.
I dont know how prevelant it is in nj but I am from nj (got infected here) and tested positive for it years ago.
posted
Thank you all so much for your replies. I don't usually post about myself and I don't like to complaine to others, I guess it's just one of those days where the damn broke and that was that.
Tincup, you think I should ask the esophagus guy I'm seeing on Monday to rerun all my tests? Thank you for the offer of help I will surely be emailing you. Even if you can't help I do thank you for throwing out a life raft to me.
Am36: Yes I am sure it is a muscle thing being caused by my infections.
Over the years when I was in NJ I have tested positive for Lyme, Erlichia, and Babesia.. Negative for Bartonella... I have all these tests here with me so it's not like I don't have proof of what I have...
Thanks again everyone for your support I am just in a very deep dark place at the moment
Carol in PA
Frequent Contributor (5K+ posts)
Member # 5338
posted
From what I understand, a swallowing problem can be because the cranial nerve to that area is affected by the Lyme bacteria. Sorry, cannot remember the name of the nerve.
When I first found LymeNet, I read about cat's claw, and began taking that, until I could find an LLMD. I figured that might help my immune system to kill the Lyme bacteria.
My sister has difficulty swallowing, and her esophageal motility is affected too.
In all the reading I've done, coconut oil has repeatedly been recommended for digestion problems. You can get this at various places, including Walmart.
Although you can't get to an LLMD right now, there are some supplements you can take that may help you.
Wishing you the best, Carol
Posts: 6947 | From Lancaster, PA | Registered: Feb 2004
| IP: Logged |
Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
Yes.. I do. It's been a while since the last ones.. and they will say they are in the past... you've already been treated.. blah blah blah.
Plus ducks like to be the one to "discover" your problems rather than treat for what others have already found and decided... especially before they may decide to treat.
Good luck.. and do write. Put "Lyme" in the title.. or down the cyber tubes you will go!
posted
It's possible that your swallowing problem could be due to cranial nerve involvement. I would suggest chiropractic exploration.
I get chiropractic care for my entire spine. I notice that a good neck adjustment stops my swallowing difficulty temporarily.
I ask the chiropractor what bones they adjusted. Usually it's C1, C2, C5 or C6 causing swallowing difficulty.
I also take a half-tab of ativan sublingually as needed after an adjustment.
Posts: 13116 | From San Francisco | Registered: May 2006
| IP: Logged |
bettyg
Unregistered
posted
I'm so sorryto read about the runaround you've been getting and how sick you are.
I'll send you a PM now with a LLMD name who is a member of ILADS..the good, long-term antibiotics member in YOUR state!
83 lbs.; are you gluten intolerant or dx with celiac disease?
When you are feeling better, I'd type or write a letter of ALL WRONG THINGS IN YOUR MEDICAL FILE and present it to CEO of the clinic, etc. so the records CAN BE AMENDED!
If you have applied for SSDI, disability insurance benefits, I'd make extra copies so that can go with your claim.
If you are getting, SSDI, I'd make a copy for your files there since they will eventually check up on you, and you want current documented info on what they recorded was wrong!
I'll send the PM before I forget on the LLMD. Meanwhile, lots of prayers/thoughts,
IP: Logged |
BostonLyme2005
Unregistered
posted
Hi,
If you cannot find a good LLMD there, then you MUST travel or MOVE!
You NEED to $ave money where ever you can in your budget, go without everything you can be without with, and save!
You must fight the co-infects also...Take your pro-biotics....Watch your diet!
IP: Logged |
Geneal
Frequent Contributor (5K+ posts)
Member # 10375
posted
Hi. I am sorry you are feeling so poorly. It must be pure misery to be hungry and not be able to eat.
I am a Speech Pathologist. There are many Cranial nerves involved with swallowing.
There are also four phases or stages of swallowing.
Have you thought of adding ensure or some other high calorie/protein drink to your diet.
If it is too thin, and makes you cough/choke you can mix it with ice-cream in a blender.
Most foods can be pureed. I know the food doesn't appear to be appetizing, but think about what food looks like after you chew it.
Are you able to swallow meds? If not you need to discuss this with a LLMD as some medicines cannot be crushed..it affects how they work.
My thoughts and prayers are with you. If I can be of any help to you please let me know.
Sincerely, Geneal
Posts: 6250 | From Louisiana | Registered: Oct 2006
| 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!
![[Big Grin]](biggrin.gif)
![[group hug]](graemlins/grouphug.gif)
![[kiss]](graemlins/kissing.gif)
Printer-friendly view of this topic