doubt is like a symptom!!! help

New Topic Post Reply Printable Version
[ << Previous Thread | Next Thread >> ]

badticks
New Member


Date Joined Apr 2010
Total Posts : 19
   Posted 4/16/2010 7:31 AM (GMT -7)   

Okay, can anyone relate to this?  First, I know my body very WELL. 

 

I have been paying attention to what I call mild – or tolerable flares.  I decided to start using some of my antibiotics that I had stashed for this occasion.  (not expired!) and work on getting treatment in the mean time.  So I am on just a 5 day of azithromax.  I also have tetracycline and minocycline.  No ceftin unfortunately.

 

Timeline: really ill sep 04- to - july 07. Then did 90 day couse of Ceftin.  Had a baby and felt super- myself again.  Symptoms returning, off and on… but so I could not be sure enough about them I started to think , oh it was a cold, or I am tired.  Thinking maybe this is how I feel now when I am tired, or have a cold. 

 

I find myself back and forth- - back and forth.  I have it – I don’t have it.  If I don’t have it what do I have?  If I do have it what do I do?  This think makes you a mess in your own head.  Now that I believe the symptoms are getting stronger, I question – did I cause them to return stronger?  I found this site not because I was having “strong” symptoms.  Or did my mind lead me here because I sensed it was inevitable? 

 

I was getting worred in Dec, I went to Doctor and started new.  He’s not LLMD but funny thing is, when I went to that appt. I decided I would not mention that I believe I have Lyme, and so we talked and told him what I felt, and the guy – says, have you ever considered LYME?!  We did w. blot though as I look at results I don’t think he actually did blot but a pre-qualification to blot… not elisa.  I don’t know what it is. Anyway.

 

My question, for those of of you who never had lyme definitively diagnosed, or should I say your tests do not show you have lyme and have ruled out everything else… MS,for example, or were diagnosed with CFS, or EBV or CMV for example… do you feel back and forth and sometimes like your own mind is at fault?  I came to a point before where they tried to tell me it was anxiety.. and I finally said okay fine--- treat my anxiety!! Though I knew it was not me but I was willing… and we never had to because I stumbed onto antibiotics which CURED me of all symptoms.- then 

 

It’s crazy, I can see my mind going through the same motions of what I did before… I don’t want to go there again! Help any comments or recommendations?! 

 

Also, I told someone yesterday that I believe I have lyme and then I worried and worried like- - I am liar.. or something.  What is this about?  Why do I want to keep it secret to me and only my husband and his family since they know lyme disease since they have experienced it first hand.

 


scorpio1960
Veteran Member


Date Joined Jan 2009
Total Posts : 914
   Posted 4/16/2010 9:18 AM (GMT -7)   
Boy can I relate although my situation is a little different. I was diagnosed with CFIDS and for years thought that if I only tried harder I could keep it all under control. I always had physical symptoms so docs never thought it was all in my mind but I still wondered at times if I was somehow causing it all. Over time I started to experience major cognitive issues and a change in personality but only after being diagnosed with LD and learning more did I acknowledge the change in personality. I went from being an intelligent, confident, capable person to someone I don't even recognize and at times can barely tolerate...lol! I now have trouble making the simplest decisions, experience a tremendous amount of self doubt and tend to worry and obsesses over the slightest little thing. This darn disease really messes with us big time...sometimes in very strange ways...ugh! Give yourself a break and try not to second guess yourself too much. I know this is so much easier said than done but try to remember that it's probably the infection causing you to feel this way...it's not your fault. It's great that antibiotics helped you so much in the past and I think it's a good idea to nip it in the bud before it gets out of hand. Would it be at all possible for you to see a llmd or test with igenex. Hang in there and good luck.

JELAINEP
Veteran Member


Date Joined Sep 2007
Total Posts : 2017
   Posted 4/16/2010 3:59 PM (GMT -7)   
i didn't read anything but your title"doubt is like a symptom!!! help" and just thought I'd let you know... I was (maybe still am) in denial for the past approximate 6-8 years. I thought I'd get "it" all back... the job, the friends, the energy, etc., etc. Now, for the past 8-12 years, I ask myself, "OK, I ain't getting it "all" back, what is my life supposed to look like now?"

I don't know the answer, he1/, it took me 8-10 years to figure out the question!
A small group of committed citizens can change the world-it's the only thing that ever has.-M. Meade


bablymers
Veteran Member


Date Joined Oct 2006
Total Posts : 1458
   Posted 4/17/2010 1:00 AM (GMT -7)   
Hi badticks,

I agree with Scorpio! These diseases mess with us and create an unlimited number of symptoms. If antibiotics helped you before, then go for it again. If you want to try natural methods, then do that. Give yourself a break and be good to yourself! If you can put together a team of docs---llmd and naturopath etc.----then you will have help. Is is not unusual to feel "all over the place" as you do. There is no easy cure---no "one size fits all" type of treatment----no "cook book" recipe to follow. This makes it hard for anyone to feel secure and confident in knowing what to do or how they feel. We lymies are on a "roller coaster" ride, so we need to "roll with the punches". Remember, be good to yourself, OK!

Wishing you all the best, bablymers mom

badticks
New Member


Date Joined Apr 2010
Total Posts : 19
   Posted 4/19/2010 6:41 AM (GMT -7)   

Thanks everyone for your reply and reassurance!   

 

The mind sure wanders when without positive diagnosis about what if I am wrong and it’s this, or that.  (even tho most everything else has been eliminated)  I am gonna stop the mental roller coaster cycle I put myself thru and give myself a break this time.  Instead I am trying to reach a LLMD in MN that I was referred to by MN support group and also have already ordered the Igenex tests. 

 

I don't WANT LYME disease but if i have it- I WANT a diagnosis!!!  It's confusing because i keep hoping for a positive test!  Weird right, but i guess that's how strongly i feel i have it.  of course i want clinical diagnosis and treatment regardless of test but, i'll always wonder.  the key is i don't want lyme disease but if i do indeed have it, i wish a lab could support it.

 

 


Nicki33
Regular Member


Date Joined Apr 2010
Total Posts : 22
   Posted 4/20/2010 9:02 PM (GMT -7)   
As crazy as this sounds, I was relieved when I found out I had Lymes for the simple fact that my body and mind was declining and I didn't have an answer why. I had been to different doctors about multiple symptoms, even diagnosed as ADD due to short term memory and lack of concentration, tested for rheumatoid, thyroid(all negative) and the whole mess so with no answers and being treated like a hypochondriac I finally stumbled upon some literature about Lymes. Being the way my doctor treated me last time I figured was no use to go there so I went to the Lab myself and got tested for Lymes and sure enough it was positive. Finally an answer to why I had been feeling so cruddy for years. Since I have been taking the ABX I feel like the brain fog has lifted a little but my joint and back pain has not eased up. I wake up in the morning with my hands and arms tingling and Im 33 but walk like an 80 yr old woman due to my aching joints and feet. I have had a few days here and there that I have felt absolutley terrible with headaches and fatigue. Also today, I had a new thing arise, when I was watching the TV the last 3 letters in a word would disappear and come back. Anybody experienced that before? The doctors here act like Lymes is nothing so Im having a hard time with pain management and understanding. Ibuprofen dont kickthe pain they also give me Tramadol but it worsens my headaches. Im trying to keep a positive outlook. Im going to fight this! I want to be me again so bad I cant stand it!

achievinggrace
Forum Moderator


Date Joined Nov 2009
Total Posts : 3266
   Posted 4/21/2010 6:50 AM (GMT -7)   
Good for you for wanting to fight. Are you not seeing a lyme literate doctor. As you have had the disease for awhile it will take someone with experience to treat you so that you make a full recovery.

Nicki33
Regular Member


Date Joined Apr 2010
Total Posts : 22
   Posted 4/21/2010 11:02 AM (GMT -7)   
Today I called UVA at the disease specialist center and was told I have to be referred there by my family doctor whom I have absoltuely no faith in. I called and left a message and am now wating for them to call back. My arthritis has become extremely painful the past 2 days, does anyone have any suggestions? The doctor here acts like my arthritis is a joke?

Tala3
Regular Member


Date Joined Sep 2009
Total Posts : 233
   Posted 4/22/2010 1:28 PM (GMT -7)   
Nicki33,
Try taking the Tramadol with a couple of ibuprofen. I have the same problem, gives me a terrible headache, but it does knock down the pain very well for me most days - when the pain is really bad it doesn't help as much, but it's better than nothing! Good luck!

Nicki33
Regular Member


Date Joined Apr 2010
Total Posts : 22
   Posted 4/25/2010 7:12 AM (GMT -7)   
Thank you and good luck to you!

I just found out from my aunt that her doctor recommended that no one on our blood family take Tramadol becasue it has caused 2 members in the family to go into seizures. She said it made her sick like it has been doing me and then she went into a bad seizuire so Im not going to take it no more. Also, my brother said it made him sick too. Going to be safe instead of sorry! =)

+Lyme
Veteran Member


Date Joined Apr 2009
Total Posts : 1304
   Posted 4/25/2010 10:13 AM (GMT -7)   
God bless you all -- your searching and your fighting is amazing. The grief that you suffer is amazing, as well. Here is a question and I wonder if it could be the answer to some aspects of Lyme:
This does not apply to the physical pains you are suffering, but I am talking about the mental, emotional, and cognitive aspects:

Perhaps this should have been a different post, but I thought about this while reading others' suffering above. Maybe this must be treated on its own, maybe treatment for Lyme does not address the damage done to our adrenals. And so maybe some of you are actually getting better from the lyme, but left w/ damage done by lyme?

Adrenal fatigue. I KNOW that I am suffering w/ this. Given my history, (30 yrs hypoglycemia, stress and emotional episodes, each manifesting worse than the one previous, etc etc) the lyme and how I feel now, it seems impossile that I wouldn't have it.

When I had an LLMD, he noted it in my blood work. When I look it up, I have almost every symptom and I relate to so many things, many of which can be attributed to depression, but many which differ from classic depression. A friend at the dog park loaned me her book by JW on Adrenal fatigue. (and yes, once I have survived the blackness that descends on me each day, sometimes, not all the time, I am able to pack up my dogs and take them out-- I have to)

According to the 'test' in this book, mine is severe. The list of symptoms describe me to a T. You know, I REALLY got it when he described difficulty in making decisions, even the simplest, like what to wear.

This sounds SO stupid and petty. But seriously, I suffer standing for as long at 15 min at a time, staring at my closet, unable to pick out something to wear. My mind feels blank, the decision seems impossible and insurmountable. This is one reason I pack the same foods to take to work each day -- so I do not have to think about what I will eat.

What is disappointing tho, is the same ole, same ole. Most Drs don't believe in it, they do not know how to accurately test for it, and they do not treat it. This has been discussed here before. I hope to find some answers in this book, once I can get thru it -- I can only handle a couple of pages per day.

What I'm getting at, is adrenal fatigue seems to account for most of the symptoms I have now, except for the back and neck pain, which I've learned are progressively worsening scoliosis, and the occasional return of sore, throbbing mouth and muscles, which could be lyme, I don't know.

I had hoped it would resolve, as the lyme resolved, but evidently not. JW's book even states that if you also have low thyroid (which I do and most of you also probably do), the adrenal fatigue should be addressed first.

I am wondering if it is possible that many people who have received lyme treatment are still suffering from adrenal fatigue which has not been addressed. Adrenal fatigue describes almost everyone's symptoms here, from the depression, lack of motivation, anxieties, lethargy, feelings of hopelessness, thoughts of 'S', cognitive issues, etc etc etc.

Since Lyme causes adrenal fatigue, it would only make sense that these present as symptoms of lyme.

I may still have lyme, I don't know. I am still on LLMD waiting list, but I can't keep waiting to address the issues I'm having now which are ruining my entire persona and life. (thyroid and adrenals)

I know many of you are receiving treatment and/or are working on the Adrenal fatigue aspect. I would like to know if you if you are progressing any, or experiencing any improvement. And do you believe that I will necessarily need alternative medicine to get a diagnosis (even tho LLMD did) and any kind of treatment?

This would explain to me WHY my depression feels so different and so physical, and why it hits me out of the blue, often at the same time each day.

In some way, I hope this helps others to think about this and this possibility. Because if you have adrenal fatigue, then abx and other lyme treatments may not help this. And so you may continue to feel hopeless. Has this been discussed by anyone?


Bit 1972: Acute and chronic tonsillitis, UTI, miscarraige, appendicitis, hypoglycemia,  chronic neck pain w/ crushed vertibrae, chronic severe back pain, mitral valve prolapse, depression, resolution?
 
Bit Mother's Day 2007: Lyme, Babesia microti, hypothyroidism, EBV, HHV6, Parvovirus B19, low adrenals &misc other hormones, depression, anxiety, more of the above.

Post Edited (+Lyme) : 4/25/2010 11:18:22 AM (GMT-6)


Nicki33
Regular Member


Date Joined Apr 2010
Total Posts : 22
   Posted 4/25/2010 7:21 PM (GMT -7)   
I have had my thyroid checked and it was all normal. I have had the fatigue for several years but has worsened over the past year or so. The first week after I took my ABX I felt like I was 16 again and I thought to myself, YAY, Im me again! LOL Got shot down real quick this week, back down to blah again. I had just told my husband tonight that I could deal with the pain if I could just have my energy and mind back to the way it used to be. Thats what bothers me the most and I think thats where the depression sets in because of that. Just wanting to be NORMAL AGAIN!!!

Kimmiepop
Regular Member


Date Joined Dec 2008
Total Posts : 28
   Posted 4/27/2010 9:01 AM (GMT -7)   
Bad tick
  Hi I understand. I lived 18 years thinking I had MS. In a fight my nero said its like only a lil ms, Now At the time I couldnt walk lol, so sick! I read a dug up info I took western Blot, Boom Posotive for babesia! Now I have lesions on My mris last 18 years also.
It was tuff to swallow information, I seen LLMD last year and he confirmed the Lymes.
 Its really hard to let it sink in.....But as most my help has come from people on here, I agree see a LLMD. What ever it takes just do it! Atleast you can feel better about whats going on and get the truth from other sourcse
 Your in my prayers, And You know what, YOUR NOT ALONE!
Big Hug
 

Kodak
Regular Member


Date Joined May 2010
Total Posts : 74
   Posted 5/15/2010 9:11 AM (GMT -7)   
MY homeopathic doctor said I have adrenal exhaustion. I had the same depression symptoms too. With no energy, shaking, and crying alot, its hard to think straight.
Since taking her protocol, the first thing I noticed was my nerves were not as raw and my energy was sloooowly returning. Its very slow, but its in the right
direction, so I'm happy. It feels good to see things as bright again and not so dark and gloomy. I know it might not be an easy road and I have to go with the
flow of healng, but theres no other way. I'll let you know as I continue as I've only been on this program for 3 weeks.

Healing wishes to all.

InfectedinFL
Regular Member


Date Joined May 2010
Total Posts : 59
   Posted 5/15/2010 11:12 AM (GMT -7)   
The jury is still out on whether or not I do have Lyme disease. But only six weeks in, I seem to question myself quite a bit. Due to the up and down symptoms, it just makes you wonder. Just going to keep taking my meds and see what the test says next week.
 
Jeff

wild orchid
New Member


Date Joined May 2010
Total Posts : 2
   Posted 5/16/2010 2:36 AM (GMT -7)   
JELAINEP said...
i didn't read anything but your title"doubt is like a symptom!!! help" and just thought I'd let you know... I was (maybe still am) in denial for the past approximate 6-8 years. I thought I'd get "it" all back... the job, the friends, the energy, etc., etc. Now, for the past 8-12 years, I ask myself, "OK, I ain't getting it "all" back, what is my life supposed to look like now?"

I don't know the answer, he1/, it took me 8-10 years to figure out the question!
Ditto I feel that way!!!
New Topic Post Reply Printable Version
Forum Information
Currently it is Saturday, December 16, 2017 2:00 PM (GMT -7)
There are a total of 2,906,194 posts in 318,928 threads.
View Active Threads


Who's Online
This forum has 158270 registered members. Please welcome our newest member, Hfsgdgsdfr.
309 Guest(s), 9 Registered Member(s) are currently online.  Details
DBwithUC, GG1947, lucyiou, TracyMSP, Manzanita2, InTheShop, stephen, Connor77, Potter86