It appears you have not yet Signed Up with our community. To Sign Up for free, please click here....



Lyme Disease Message Board
Post New Thread   Closed Thread
LinkBack Thread Tools
Old 10-17-2012, 02:05 PM   #16
Member
(female)
 
Join Date: Aug 2012
Location: Reno, NV
Posts: 92
annalisa9397 HB Userannalisa9397 HB Userannalisa9397 HB User
Re: Going on 14 yrs of problems, Derealization, fibromyalgia, chronic fatigue

I am doing so much better. The antibiotics and supplements have really helped me heal. Pain is gone. When I do feel bad, it is more neuro symptoms. The neurologist I saw told me to eat more protein. I was literally dying and he told me I was as perfect as a peach. A naturopath would be a good choice for you too I think.
I am so sorry you've been dealing for so long without answers.

 
Old 10-17-2012, 02:10 PM   #17
Member
(female)
 
Join Date: Aug 2012
Location: Reno, NV
Posts: 92
annalisa9397 HB Userannalisa9397 HB Userannalisa9397 HB User
Re: Going on 14 yrs of problems, Derealization, fibromyalgia, chronic fatigue

I am doing so much better. The antibiotics and supplements have really helped me heal. Pain is gone. When I do feel bad, it is more neuro symptoms. The neurologist I saw told me to eat more protein. I was literally dying and he told me I was as perfect as a peach. A naturopath would be a good choice for you too I think.
I am so sorry you've been dealing for so long without answers.

 
Sponsors Lightbulb
   
Old 10-17-2012, 08:58 PM   #18
Junior Member
(female)
 
Join Date: Oct 2012
Location: northeast,PA
Posts: 13
seniubr11 HB User
Re: Going on 14 yrs of problems, Derealization, fibromyalgia, chronic fatigue

yeah I had to look this up..lol..derealization..I would say so, sometimes I feel when people are talking to me I'm thinking of other things like a floating feeling, maybe like I'm in another place, and it goes along w/my severe depression.

I also constantly have negative thoughts. If I watch something on tv like human or animal abuse, I break down and keep repeating the thoughts in my head.

As for the pain, yes my pain is all the muscles in my body, tender points seem to be all over especially the space between my neck and shoulders. I constantly feel I need to stretch, but it does nothing for me, it actually sets off major migraines. The migraines are in the sides and back of my neck and in the forehead, my forehead burns and is so tight.

When I look down, my spine seems like it's being stretched. All of this pain causes me to be constantly nauseated. Every area of my body hurts. The top of my arms are stiff and burn constantly.

When I got reinfected, at first I still thought I also had fibro because it seemed like there were two different diseases in me, I know it sounds funny but it really did, then further into treatment, the fibro symptoms intensified which I think the treatment is making it worse, so in a way it's working and these fibro symptoms are really lyme.

I know a lot of people w/lyme describe mostly the joint pain, which I have, not so much in my knees, but I would have say I fit the symptoms of fibromyalgia more than lyme, more muscle pain than joint pain. But I look back through the years and when my symptoms first started I did have some neurological symptoms as well, i.e. I was at work my arm went totally numb then traveled up to my mouth my tongue went numb and everything following by a sever migraine, this only lasted about 15 and never happened again. I;ve also went blind a few times by black floater in my vision, again only lasting about 15 minutes each time

I was driving myself crazy trying to distinguish these because I've been so sick for almost 10 years only to be diagnosed w/lyme last year when I had the rash apparently I was reinfected, but I looked back at my wb test from 2007 and I was reactive to band 58 ONLY which now I found out could have been diagnosed as lyme. I have been treating for 1 year now aggresively and sad to say, little progress, but I'm not stopping treatment. I can say my true brain fog I've had all these years is getting better, but now I have confusion because of the intense pain, if that makes sense. And my migraines are getting better.

Also if you type in what you think a symptom that would be specific to lyme in, fibromyalgia also comes up.

Honestly, I still think what if I treat for lyme and the "fibro" symptoms are still there. One theory I have on this is maybe not all people w/lyme have the fibro symptoms because of all the different coinfections and all the other chronic virus and pnuemonias that come from the immune system being compromised? I have all of these, and most people w/fibro also have these.

But usually once lyme is treated sufficiently , these other infections get better. It's all so frustrating, all I know is if I do fully recover and the lyme treatment clears me up, I'm going after all the doctors that screwed my life up this bad, I know I can't do anything legally, but they're all going to hear my mouth. There is NO reason why one of those doctors couldn't find this.

None of these doctors could have done an infectious disease panel?? for me or anyone else going through this?? I had a lyme done in 2007 but that was by an llmd years after my symptoms started, but he didn't even treat me because I only had the one band. I'm sure if one of these idiots would have done one , I would not be in this position right now.

Ok hope this helps a little, and I'm so curious to know your test results.

 
Old 10-18-2012, 08:20 AM   #19
Senior Veteran
(female)
 
Join Date: Aug 2010
Location: Oregon
Posts: 1,466
thefarm HB Userthefarm HB Userthefarm HB Userthefarm HB Userthefarm HB Userthefarm HB Userthefarm HB Userthefarm HB Userthefarm HB Userthefarm HB Userthefarm HB User
Re: Going on 14 yrs of problems, Derealization, fibromyalgia, chronic fatigue

Annalisa- That's wonderful you have improved so much! Did your symptoms get worst before they got better?

Seniubr- I seen on that movie that things will get worst before better... It took one guy on there 3 yrs of treatment to get better... He was a park ranger & actually had saved the tick that bit him, had the rash & symptoms but still took 5 drs before he got help & by then he needed much more treatment. He had to fly to get to a good dr that would treat him... Just really irritating to see what people had to go through but very worth watching!
For me the derealization is like feeling drunk but not quite drunk or when you wake up in the morning & not quite awake. Maybe like being up for 3 days with no sleep. I guess it's normal for people in stressful situations or no sleep but not normal to have it often. Mines here 24/7 & never goes away. Very frustraitig. I've had it so long I've learned to function but sometimes I wonder how I function at all.. I also describe it as feeling drugged. That's why I don't understand why people take street drugs, not a good feeling...
For me that's the major neurological problem but I'm also extremely forgetful. I don't recall events that may have just happened a min ago. Been tested for seizures & that was normal.
I get those all over headaches also. That's the one thing that will keep me down. With 4 kids I'm up & down allot making myself get stuff done. Even when I'm really sick, if there isn't a headache I'll do dishes & stuff in between vomiting. But I just don't care with the headache lol

On the movie it has a list of people in just one area that died from Lyme, very scary... It also talks about most people that have ms are positive for Lyme. I dunno, just a lot of info on there.

I agree , I'd love to sue the 10-30 doctors I've seen. Lol so many that brushed me off for so long I don't have a clue how many I've seen... Then the couple that listen don't have a clue & I think it's because the medical feild tells them to believe in basic unreliable bloodwork...
__________________
~♥Tori♥~
Fatigue & Derealization (PTSD?) 1999
Hypothyroid~ 2003
Back injury~ 2005
Severe Degenerative Disk, Arthritis, Mild Scoliosis.
Fibromyalgia diagnosed 2009
Neuropathy
Migraines?

 
Old 10-18-2012, 09:33 PM   #20
Junior Member
(female)
 
Join Date: Oct 2012
Location: northeast,PA
Posts: 13
seniubr11 HB User
Re: Going on 14 yrs of problems, Derealization, fibromyalgia, chronic fatigue

do you have a date scheduled for getting tested? I know you said you were low on funds.

 
Old 10-19-2012, 09:42 AM   #21
Senior Veteran
(female)
 
Join Date: Aug 2010
Location: Oregon
Posts: 1,466
thefarm HB Userthefarm HB Userthefarm HB Userthefarm HB Userthefarm HB Userthefarm HB Userthefarm HB Userthefarm HB Userthefarm HB Userthefarm HB Userthefarm HB User
Re: Going on 14 yrs of problems, Derealization, fibromyalgia, chronic fatigue

I gotta call today to schedual it. My drs assistant called yesterday with the number. Can't wait to get it over with...
__________________
~♥Tori♥~
Fatigue & Derealization (PTSD?) 1999
Hypothyroid~ 2003
Back injury~ 2005
Severe Degenerative Disk, Arthritis, Mild Scoliosis.
Fibromyalgia diagnosed 2009
Neuropathy
Migraines?

 
Old 10-19-2012, 01:27 PM   #22
Junior Member
(female)
 
Join Date: Oct 2012
Location: California
Posts: 28
Curious12rP HB User
Re: Going on 14 yrs of problems, Derealization, fibromyalgia, chronic fatigue

Hi going on 14 years of problems...
I too have been diagnose with Fibromyalgia but I do not have tons of pain in my body. I have complained about severe fatigue for a long time now and DRY EYES and DRY toungue. My Dr.'s are thinking I have sjogrens syndrome but my blood work up is proving differently. My symptoms also started after a difficult labor and been consisitent now for over 2 years. I also get severe flushing on my face, chest, neck and arms an it heats up really bad. Now I am having nail issues. My big toe nails have turned a dark purple color with a yellow tint and are breaking off without any pain. I have been tested for RA and Lupus and both negative. Not sure about Lyme disease though? I feel completely off everyday and I feel your struggle. It's awful! Do you have any of the symptoms that I have mentioned?

 
Old 10-19-2012, 08:01 PM   #23
Junior Member
(female)
 
Join Date: Oct 2012
Location: northeast,PA
Posts: 13
seniubr11 HB User
Re: Going on 14 yrs of problems, Derealization, fibromyalgia, chronic fatigue

curious-I've always had dry mouth and dry eyes, and lately my eyes have been stinging, I can't even wear my contacts anymore. I also have the warm flushing feelings.

You said about your toenails turning dark purple..about 3 years ago I had to have both of my big toe nails removed because they turned purple and started bowing up near the tops and breaking off..It was wierd I was in my 20's at the time...so i'm wondering now if this is a lyme symptom or not. My toenails did grow back ok but my toenails all have vertical white lines on them now.

Is there any way you could get tested for lyme?

 
The following user gives a hug of support to seniubr11:
Curious12rP (10-19-2012)
The Following User Says Thank You to seniubr11 For This Useful Post:
Curious12rP (10-19-2012)
Old 10-19-2012, 08:02 PM   #24
Junior Member
(female)
 
Join Date: Oct 2012
Location: northeast,PA
Posts: 13
seniubr11 HB User
Re: Going on 14 yrs of problems, Derealization, fibromyalgia, chronic fatigue

toenails were also so yellow, the doc gave me an antifungal to put on them.

 
Old 10-19-2012, 08:24 PM   #25
Member
(female)
 
Join Date: Aug 2012
Location: Reno, NV
Posts: 92
annalisa9397 HB Userannalisa9397 HB Userannalisa9397 HB User
Re: Going on 14 yrs of problems, Derealization, fibromyalgia, chronic fatigue

Hi - I have Lyme disease. My mom has Lyme disease. We both have whitish deep vertical ridges in nails. My toenails have been yellow.
My naturopath said her lyme patients all have vertical ridges.
Mine were never purple though.
If you google lyme, you can pretty much find that people have unexplainable strange symptoms. Nails seem to be a commonality.

 
The Following User Says Thank You to annalisa9397 For This Useful Post:
Curious12rP (10-19-2012)
Old 10-19-2012, 10:52 PM   #26
Junior Member
(female)
 
Join Date: Oct 2012
Location: California
Posts: 28
Curious12rP HB User
Re: Going on 14 yrs of problems, Derealization, fibromyalgia, chronic fatigue

My nails definitely have the white vertical ridges. My finger nails have this rainbow tint of purple over the white moon cresent part of my nail. But my toes are a different colored, dark purple. I'm not sure if they have tested me for lime disease. I'm going to google that to see if my symptoms match to that.

 
Old 10-20-2012, 03:16 AM   #27
Member
(female)
 
Join Date: Aug 2012
Location: Reno, NV
Posts: 92
annalisa9397 HB Userannalisa9397 HB Userannalisa9397 HB User
Re: Going on 14 yrs of problems, Derealization, fibromyalgia, chronic fatigue

Let me know your search results. I'm curious to know if your symptoms relate to lyme.

 
Old 10-20-2012, 11:53 AM   #28
Senior Veteran
(female)
 
Join Date: Aug 2010
Location: Oregon
Posts: 1,466
thefarm HB Userthefarm HB Userthefarm HB Userthefarm HB Userthefarm HB Userthefarm HB Userthefarm HB Userthefarm HB Userthefarm HB Userthefarm HB Userthefarm HB User
Re: Going on 14 yrs of problems, Derealization, fibromyalgia, chronic fatigue

Yes I get the flushing feeling in my face, dry burning uncomfortable eyes & uncomfortable dry mouth no matter if I just chugged or sipped water...
The purple nails sound like a circulation problem but I wonder if its a deficiency... I've had dry brittle hair for so long... But I'd I don't take vitamins my hair will break off in patches & falls out... I once had all the hair on top of my head & sides break off in patches different lengths. Some were an inch long. No one noticed though unless I showed them. I take 2 fish oils before bed. I've blaimed brittle hair & nails on my thyroid for years but now not do sure since its really level.
If the biopsy is negative more Lyme testing is my next step. I've had negative bloodwork but naturepath drs have more accurate tests. But sooo expensive & not covered by insurance so would be a long time before I could get it done.
__________________
~♥Tori♥~
Fatigue & Derealization (PTSD?) 1999
Hypothyroid~ 2003
Back injury~ 2005
Severe Degenerative Disk, Arthritis, Mild Scoliosis.
Fibromyalgia diagnosed 2009
Neuropathy
Migraines?

 
Old 10-20-2012, 04:14 PM   #29
Member
(female)
 
Join Date: Aug 2012
Location: Reno, NV
Posts: 92
annalisa9397 HB Userannalisa9397 HB Userannalisa9397 HB User
Re: Going on 14 yrs of problems, Derealization, fibromyalgia, chronic fatigue

My mom has sjogrens disease and Lyme disease. She has very dry brittle hair. I have lyme - no sjogrens. But when my symptoms first started two and a half years ago the first symptom was hair loss. For two and a half years my hair fell out. Then one year ago is when my symptoms hit with a vengeance. The naturopath is who diagnosed me with lyme and coinfections. A month later I got to
a lyme literate dr who confirmed the lyme diagnosis. I hope you can get to a naturopath. I bet they would really help and have answers.

 
Closed Thread




Thread Tools

Posting Rules
You may not post new threads
You may not post replies
You may not post attachments
You may not edit your posts

BB code is On
Smilies are On
[IMG] code is Off
HTML code is Off
Trackbacks are Off
Pingbacks are Off
Refbacks are Off




Join Our Newsletter

Stay healthy through tips curated by our health experts.

Whoops,

There was a problem adding your email Try again

Thank You

Your email has been added








TOP THANKED CONTRIBUTORS



jojo (69), jenj770 (45), tess201 (31), ticker (14), Administrator (11), 6Blues (9), annalisa9397 (7), dganz (5), Katherine777 (5), lala52 (5)

Site Wide Totals

teteri66 (1180), MSJayhawk (1013), Apollo123 (909), Titchou (857), janewhite1 (823), Gabriel (763), ladybud (755), midwest1 (671), sammy64 (668), BlueSkies14 (607)



All times are GMT -7. The time now is 10:41 AM.



Site owned and operated by HealthBoards.comô
Terms of Use © 1998-2014 HealthBoards.comô All rights reserved.
Do not copy or redistribute in any form!