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Posted 1/4/2011 1:54 AM (GMT 0)

Hello! Newbie here. I have been having a myriad of symptoms for the past 4 years and have not had any type of diagnosis (besides the usual "you're crazy"). I have done a lot of research and am pretty positive I have Lyme. I was wondering if anybody could tell me if these symptoms sound familiar to their experience with Lyme or any other suggestions at all would be so greatly appreciated. Im afraid Im going to be like this forever!! :(

Here are my symptoms:

  •  I have lost the ability to swallow solid food (this is my worst symptom)
  • always feel short of breath 24/7
  • brain fog
  • extreme fatigue
  • my body will just randomly start shaking, mostly at night (not seizures...been checked for that)
  • muscles are easily tired and sore sometimes
  • feet hurt
  • acid reflux
  • lightheaded
  • irritability
  • depression
  • extreme panic attacks out of nowhere
  • chills
  • twitching face muscles
  • forgetfulness
  • disorientation
  • sensitivity to light
  • TMJ
  • nausea
  • heart palpitations
  • feel warm sensations on my legs, almost like warm water (weird i know)

These are my main issues. So far I have seen 18 doctors who tell me its either GERD or basically that im a crazy person. I am only 25!! I am way too young to be feeling this old and sick. I have two young daughters and all I want to do is be able to take care of them without always having something not feel good. Any advice/help would be so so very greatly appreciated. THanks!

Posted 1/4/2011 4:55 AM (GMT 0)
Hello and welcome to the forum.

I have or have had at one time just about every one of the symptoms on your list, as well as a few extras... My biggest problem right now is that I can't swallow liquids or get my stomach to tolerate enough liquids (I have a feeding tube) to stay hydrated, so I have to get IV hydration daily. Lyme can do this to a person, and so can Bartonella (one of the Lyme co-infections), and I've been diagnosed with both.  See http://thehumansideoflyme.net/viewarticle.php?aid=62 for a great description of how Lyme/coinfections can mess with the digestive system.

I would encourage you to seek a Lyme-Literate MD for diagnosis and treatment, because obviously the doctors you have been seeing aren't savvy enough to put it all together for you. I went through that for a long time myself and finally found a Naturopathic doctor who figured out I had Lyme - I didn't have a clue Lyme was even a possibility when I was first diagnosed, even though it is now clear the I have had symptoms for over 30 years.

Also, I would encourage you to read the thread at the top of the forum that is for those new to Lyme - this thread contains a lot of great information that you may find helpful.

Take care,
Posted 1/4/2011 6:43 AM (GMT 0)

Razzle,

  Thank you so much for your very informative and quick response! I am still in the middle of reading the info on the link you posted but I had to get back to you and let you know that I am sitting here in tears. cry Just at the sheer fact that someone doesn't think I am crazy! I am so sorry to hear that your swallowing is so bad that you have a feeding tube. That is one of my biggest fears. It has been 18 months since I have been able to eat solid food. I live off of Ensure for the most part. It's like my swallowing reflex just disappeared one day. I am trying to find a doctor ASAP. I have been searching for so long for answers and as much as I don't want Lyme, I would love to just have an answer! There are a few more symptoms I forgot to list (Im always forgetting something!) and one of them was headaches. I get severe headaches, but only on the right side of my head behind my eye. I'll have to see if there is any link with that.

Anyways, just wanted to thank you. I went from being an Army medic to a sick, falling apart mental case! I just want someone who understands!! I pray your swallowing gets better.  Thanks again.

Posted 1/4/2011 11:52 AM (GMT 0)
Hi BDubs,

Welcome to the forum! Something that came to mind when I read your post was Hypothyroidism. Have you had your thyroid checked yet? I have Hashimoto's Thyroidittis and had many of the symtoms you listed. Having low thyroid function can mimic Lyme Disease. You always want to rule these things out. If your bloodwork is fine, then I'd say to find a Lyme Literate Doctor so that you can be tested for Lyme Disease.
Posted 1/4/2011 1:10 PM (GMT 0)
Where are you located? Have you been tested for lyme? Is your primary doctor will to take your blood and you can send it to Igenex? It is the best way to be tested for lyme. Rather than waste anymore time, try and get to an LLMD. They will test you for co-infections as well. Keep asking questions. You will get a world of information from this forum.
Posted 1/4/2011 4:07 PM (GMT 0)
Hi BDubs!!!
Welcome to the forum!! I am really sorry that you have a need to be looking at Lyme & other tick-borne infections as a cause for your health issues, but you have found a great place!!! I'm sure you will find us to be a caring, helpful & understanding group!!

Please do feel free to post your questions, concerns & comments as we are all wanting to get to know you & give you the same kind of support that we receive!!
Posted 1/4/2011 6:52 PM (GMT 0)
Hi BDubs, sorry to see you have some horrible symtoms...but you have found a great forum here with some smart members. I expect a lot of the people who use the forum have had many of the symtoms you listed, so LD is a possibility. It's well documented that the longer you have LD the longer it takes to recover from it, so swift action on having your thyroid checked, and if normal, quickly finding an LLMD could greatly benefit your recovery.

Maybe it would be wise, if the thyroid function is normal, to see if your GP would give you a months course of ABX (Doxy) before you have a WB to see if you have any type of change in the way you're feeling, don't be too surprised if you feel a lot worse before you feel better (Herx) - as no one can find what's wrong with you it must be worth a try. Also if it is LD even the WB may come back negative throwing yet more confusion on to your plate, although if you do have any co-infections and are tested for the right ones these will probably be found, until you have had some ABX to kill off a few bugs. This will enable your immume system to catch up with the "dead" thus producing anti-bodies that can be detected with the WB test, plus the WB test is used to detect bits of the spirochete that have broken down and if they're dead.......then there'll be bits.

Anyway good luck with it and keep us informed.

Mik.
Posted 1/4/2011 7:13 PM (GMT 0)
Hi CajunGrl! Every doctor I have seen has tested me for thyroid problems and all the bloodwork always comes back fine.

Hello Springsjean- I am located in Oahu, HI. My husband is Army and we just got stationed here a few weeks ago. I have not been tested for Lyme. All my docs at our previous duty station didn't feel that I needed to be tested for it. I have an appointment in a few days with my new doctor here whom I have not met yet. I am hoping he will at least run the tests. Funny thing is, my husband works in the lab at the hospital. I wish he could just run my tests but I guess that's kind of against the rules, LOL. When I looked for a LLMD, the only one I found was on a neighboring island so I might have to catch a flight over there if this doc doesn't seem to willing to help. I'll let you know how the appointment goes.

Traveler- Thanks for the welcome to the forum. I cannot believe how supportive everyone is here. Pretty amazing to me after the way I've been treated (and apparently most of you all too) when I go to the doctor.

Mikazmat- Very good info!! Thank you. I have an appt in a few days so I will be asking the doc about that. I'll be sure to keep you posted!!

Thanks again everybody! Even if it turns out I don't have Lyme, I appreciate being able to come on here and bounce around some ideas. :)
Posted 1/4/2011 11:03 PM (GMT 0)
Bdubd...what island is the lyme doc on? can you send me info?
Posted 1/4/2011 11:03 PM (GMT 0)
Bdubd...what island is the lyme doc on? can you send me info?
Posted 1/4/2011 11:03 PM (GMT 0)
Bdubd...what island is the lyme doc on? can you send me info?
Posted 1/5/2011 12:56 AM (GMT 0)
bucci- I would love to send you the info. It was the only doc I could find in Hawaii! She is on Maui. You will have to help me out though, I am new to using forums and have no idea how to send you a message. I tried clicking the little mail icon under your name but it wouldn't let me do anything! What am I doing wrong???!!
Posted 1/5/2011 4:24 PM (GMT 0)
Hi DBubs,
Can you email anyone else here? Once you have clicked the envelope it's supposed to open up the 'mail program' on your computer.

The other thing yo could do is to click on Bucci's screen name & it will take you to her profile where Bucci's email is listed.

Hope this helps.
Posted 1/5/2011 6:41 PM (GMT 0)
Ahhh... it must be my computer. It says default mail client is not properly installed. My husband just bought this computer so I'll have him figure it out. LOL! In the meantime, I'll look up Bucci's email addy the other way! Thanks for the help!
Posted 1/6/2011 3:00 AM (GMT 0)
You're welcome, BDubs. Glad I could help!
Posted 1/6/2011 4:19 AM (GMT 0)
Okay I got your email. by the way do you have cats?
Posted 1/6/2011 6:17 AM (GMT 0)
bucci-- I used to have a cat but he ran away :(

Has anybody on here done the VCS test online from Dr.Shoemaker or know anything about it? I guess it is supposed to test for neurotoxins and it's effects in your body through a vision test. If anybody knows anything about this test I would love to hear your opinion... whether it's worth taking or not. Thanks again!

here's the website: https://www.chronicneurotoxins.com/index.cfm

Posted 1/8/2011 1:10 AM (GMT 0)
BDubs,


There is a lot of good info here already posted here. I also had all the symptoms on your list. Very scary some of those.

Look at the threads: OSB Oral System Biology, and My Dental for a couple of other ideas for possible causes and treatment.

We Well,
Wacko Woman
Posted 1/8/2011 4:52 AM (GMT 0)
Thanks Wacko Woman!

I checked out those threads and listened to the interview with Dr. Robson on OSB. I have seen a doctor who fitted me for an oral orthotic appliance but he wanted to see me weekly to adjust it. He was too far away and it was just too expensive for me to do that often.

Point is.. he thought it was directly related to my swallowing and breathing problems. I guess I am going to have to figure out a way to have my mouth worked on because after listening to that interview, I am extremely convinced that's at least half of my problem!

Thanks so much for the info!
-- BDubs
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