Anyone ever doubt is lyme or real problem?

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springsjean
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   Posted 9/1/2010 12:23 PM (GMT -6)   
Although I know I have lyme, Ijust started taking cymbalta which is really helping. 
It continues to make me wonder if the lyme causes the problems or the problems bring out the lyme.  I'm forever trying to figure this out and wonder what meds to be on.  Anyone else ever feel this way?  Cymbalta is known to help fibromyalgia so do I have that too or was that what was causing the depression or has the lyme/bartonella caused both?  Yikes. 

Hippie Hiker Chick
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Date Joined Aug 2010
Total Posts : 77
   Posted 9/1/2010 12:36 PM (GMT -6)   
I seem to be forever second guessing my diagnosis. I tend to question if I'm really ill or just being lazy or depressed. Was talking to an aquantaince last night who is ill will something else (this is terrible, but I can't think of the name of it). She has the same thoughts though and whatever it is that she has is not as controversial as Lyme.

I think the controversy makes me feel a little crazy sometimes too. I think I'd feel much better about it if there was good testing and a straight forward treatment plan(s).

There was one day when my LLMD suggested I ask my ND about bee venom therapy and I called my husband on the way home and was thinking "Man, I sound like a crazy lady who would do ANYTHING - including shooting up bee venom - to get better!"

It's hard to get an accurate baseline with Lyme because it can affect so much!

Simela
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   Posted 9/1/2010 12:42 PM (GMT -6)   
Dr. J from CT doesn't believe fibromyalgia exists on its own, he believes Lyme is the cause of it. I also took something for depression for several months, but my Lyme symptoms did not go away. So, from my own research and from common sense (my common sense, anyway), treating the symptoms (Fibromyalgia, depression etc) will not make the disease (lyme, coinfections) go away.

Eg: My thyroid is all over the place when my lyme symptoms are at its worse. I have been on Levo for 5 years. It keeps somewhat in check when Lyme seems to be "asleep". As soon as the lymes are waking up, my thyroid is out of control (4-5 times higher than it should) although I am on Levo. When my lyme symptoms are calming down, new blood work shows I am taking too much levo, and my doc adjusts the level

I am sick of this! Anyway, those are my impressions, I will bring it up at my next appt w. the GP and LLMD--the above is my own conclussion and I may be wrong--I would be interested to see what others think on this subject!  Nevertheless, many things can go wrong when something messes up with your immune system!!!

diaba
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Date Joined Aug 2009
Total Posts : 175
   Posted 9/2/2010 3:49 PM (GMT -6)   
I don't doubt the diagnosis, just don't know if it's the main problem. I have a ms, lyme, and babesia diagnosis. The lyme probably caused the ms. I just wonder if something else happened in my body that allowed the lyme to really take hold.

I just got a strange diagnosis last month, possible carbon monoxide poisoning, the exposure would have been over 15 years ago when my symptoms started. My llmd thinks this because of i have sensitivities to everything, chemicals, sounds, vibrations, taste(I can taste people's perfume in the air), etc. So who knows, maybe that started it all, or maybe has nothing to do with it.

Also around the time my symptoms started I wasn't taking very good care of myself, maybe my detox systems went south and started the spiral. So like you, I do question what's going on, and how the heck do I fix it.

diana

mainegirl
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Date Joined Aug 2010
Total Posts : 61
   Posted 9/2/2010 4:16 PM (GMT -6)   
Hi I agree with everyone 15 yrs into it I explored every other thing it could be nope lyme test always come back pos, along with all co-infections had a spinaltap in april now it even shows in my spinal fluid. always showed in my brain. I'm there with all of u. sometimes I think my fatigue is being lazy. nope it's fatigue no denying it. I pay for it the following day anytime I try to do anything little. God help us all .


Prayers to u all. and your not crazy. shakehead

marlene

springsjean
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Date Joined Mar 2009
Total Posts : 2154
   Posted 9/2/2010 5:58 PM (GMT -6)   
Yeah I am convinced most days that ALL of my symptoms are from lyme. Just amazing that can wreck such havoc on the human body WITHOUT DOCTORS KNOWING IT! Hopefully in our lifetime, we will see as many advances as we have seen with HIV, polio, etc.
Lyme, erlichosis, bartonella, herpes, EBV. 4 years undiagnosed despite 10 drs.
Current meds: tetracycline, amanatadine, neurontin, xanax, valtrex
Prior meds: amoxicillin, probenecid, doxy. IV refused by insurance.
THERE ARE ROUGH DAYS, TOUGH DAYS BUT ALSO GOOD DAYS. MY BOYS GET ME THROUGH THE BAD AND I SO ENJOY THE GOOD DAYS WITH THEM!

Traveler
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Date Joined May 2007
Total Posts : 35695
   Posted 9/2/2010 6:46 PM (GMT -6)   
I think just about everyone who enters into chronic Lyme & had the 'pleasure' of living with it for a while goes through that type of doubt & confusion, I know I did. I spend too much time sitting around thinking about how to know which illness is causing which symptom. I keep feeling like if I knew what was causing what, I could get it fixed!!! Doesn't seem to work that way, though.
Even the mightiest oak tree was once a little nut who held it's ground!!!
May we all find peace along the journey to find healing.
"Absence of proof is not proof of absence" - Dr. Edwin Masters, great LLMD & researcher -RIP
Trav

springsjean
Forum Moderator


Date Joined Mar 2009
Total Posts : 2154
   Posted 9/2/2010 7:15 PM (GMT -6)   
Yeah I think half the battle is feeling well enough both physicially and psychologically to keep ourselves busy otherwise. I have tried and tried and am hoping perhaps the cymbalta will enable me to do this.
Lyme, erlichosis, bartonella, herpes, EBV. 4 years undiagnosed despite 10 drs.
Current meds: tetracycline, amanatadine, neurontin, xanax, valtrex
Prior meds: amoxicillin, probenecid, doxy. IV refused by insurance.
THERE ARE ROUGH DAYS, TOUGH DAYS BUT ALSO GOOD DAYS. MY BOYS GET ME THROUGH THE BAD AND I SO ENJOY THE GOOD DAYS WITH THEM!

CajunGrl
Veteran Member


Date Joined Mar 2009
Total Posts : 4717
   Posted 9/2/2010 7:16 PM (GMT -6)   
This is what my Rheumatologist said and it made alot of sense to me. I told him that I may have chronic Lyme and it may have gotten into my bones, tissue, muscle, etc. and that is why I am hurting so bad(Fibromyalgia). He told me then it's pretty much too late if that is the case and we have to concentrate on the pain for now. I started thinking about it and maybe he is right. How would antibiotics get into our bones, etc to get the bacteria out? I think that once our immune systems are back on track, then our bodies will handle it on it's on. I also think that if you have been treating for a while and you are not feeling better, then maybe it has gotten into the bones, tissue, etc. I hope I don't upset anyone here. This is just my opinion and what I am doing to feel better and function again.

Springsjean- I am about to start Cymbalta too. Have you had any side effects from it?
Lyme disease, Fibromyalgia, Hashimoto's Thyroiditis, Adrenal Fatigue, Rheumatoid Arthritis
Prescription Meds: Cymbalta, Tramadol, Hydrocortisone, Plaquenil
Supplements: Thyro-complex, CMK, Folic Acid, Fish Oil, Probiotics, GI Repair, Vitamin D 50,000IU and Joint Supplement


Co-Moderator Lyme Disease Forum

rosesinjanuary
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Date Joined Oct 2007
Total Posts : 748
   Posted 9/2/2010 7:19 PM (GMT -6)   
I quit thinking about it. I am resigned that "lyme" is a term that can indicate 100 or 1000 different viruses or bacteria. All's I know for sure is I had the picture perfect rashes and since then my life did a 180. I too believe fibro is more of a symptom than a real diagnosis. I have had all 3 diagnosed fibro ms and .lyme. I realize ins. co's and drs need diagnosis but doubt they are written in stone. I don't care what it is I think i am doing and or not doing what I would do if I had either of the 3 or even something else autoimmune related. Funny thing I have always liked the color green including lyme green (maybe its lime) there was this lyme green stuffed bear I wanted to win sooooooo bad at the fair when I was little. I looked at it every day even asked my brothers to try. well, I hate lyme now. Ha a little factoid but I truly do hate that word!!

CajunGrl
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Date Joined Mar 2009
Total Posts : 4717
   Posted 9/2/2010 7:31 PM (GMT -6)   
I think that it comes to a point where we have to do what we have to do to function. If that means taking cymbalta or whatever it may be to lessen the pain, then that's what we have to do. At least, that's where I am now. I cannot take antibiotics because of my liver, so this is where I am now. Just trying to function and get out of bed.
Lyme disease, Fibromyalgia, Hashimoto's Thyroiditis, Adrenal Fatigue, Rheumatoid Arthritis
Prescription Meds: Cymbalta, Tramadol, Hydrocortisone, Plaquenil
Supplements: Thyro-complex, CMK, Folic Acid, Fish Oil, Probiotics, GI Repair, Vitamin D 50,000IU and Joint Supplement


Co-Moderator Lyme Disease Forum

springsjean
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Date Joined Mar 2009
Total Posts : 2154
   Posted 9/2/2010 7:44 PM (GMT -6)   
Wow god bless. I am feeling so much happier on cymbalta. Enjoying work and no headaches and no anger, so yes it is helping me. Have you tried milk thistle for liver and I am also convinced that the human body is possible of so much so keep trying and it will turn itself around. Cymbalta may lift the spirts and that may be just what is needed.
Lyme, erlichosis, bartonella, herpes, EBV. 4 years undiagnosed despite 10 drs.
Current meds: tetracycline, amanatadine, neurontin, xanax, valtrex
Prior meds: amoxicillin, probenecid, doxy. IV refused by insurance.
THERE ARE ROUGH DAYS, TOUGH DAYS BUT ALSO GOOD DAYS. MY BOYS GET ME THROUGH THE BAD AND I SO ENJOY THE GOOD DAYS WITH THEM!

CajunGrl
Veteran Member


Date Joined Mar 2009
Total Posts : 4717
   Posted 9/2/2010 8:18 PM (GMT -6)   
I tried Milk Thistle and it does help but I've never stayed on it long because it detoxes me. I sweat really bad and feel like I'm herxing. It's probably detoxing my liver and that's why I feel that way.

Thanks for the information on Cymbalta. I have been putting off taking it because I usually do not do good on anti-depressants. I will try starting tomorrow. I need the relief.
Lyme disease, Fibromyalgia, Hashimoto's Thyroiditis, Adrenal Fatigue, Rheumatoid Arthritis
Prescription Meds: Cymbalta, Tramadol, Hydrocortisone, Plaquenil
Supplements: Thyro-complex, CMK, Folic Acid, Fish Oil, Probiotics, GI Repair, Vitamin D 50,000IU and Joint Supplement


Co-Moderator Lyme Disease Forum

Simela
Veteran Member


Date Joined Aug 2010
Total Posts : 552
   Posted 9/2/2010 8:23 PM (GMT -6)   
rosesinjanuary
Do you like yellow? My 6 yr old son calls it the lemon disease! LOL

mainegirl
Regular Member


Date Joined Aug 2010
Total Posts : 61
   Posted 9/3/2010 12:37 PM (GMT -6)   
cajun girl, are us saying that its like a herx ? does it hurt help your liver ? my Dr gave me some and I was a little bothered about taking it . I don't mind herxs if it means there helping me

Thanks marlene/mainegirl

CajunGrl
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Date Joined Mar 2009
Total Posts : 4717
   Posted 9/3/2010 7:17 PM (GMT -6)   
Hi mainegirl,

It did help. I can always tell when my liver is inflammed because I can feel it in my side/back. When I take Milk Thistle, the swelling goes down and I feel better. The herx feeling wasn't bad at and not everyone goes through that. In fact, it took me a while to find someone else that had experienced it. I was also told that something in it "acts" like a cyst buster and that could be what I was experiencing.
Lyme disease, Fibromyalgia, Hashimoto's Thyroiditis, Adrenal Fatigue, Rheumatoid Arthritis
Prescription Meds: Cymbalta, Tramadol, Hydrocortisone, Plaquenil
Supplements: Thyro-complex, CMK, Folic Acid, Fish Oil, Probiotics, GI Repair, Vitamin D 50,000IU and Joint Supplement


Co-Moderator Lyme Disease Forum

Deejavu
Veteran Member


Date Joined Aug 2005
Total Posts : 4282
   Posted 9/4/2010 6:21 AM (GMT -6)   
Hi springsjean and everyone else,
 
In my case I was relieved to find out I had lyme and ehrlichiosis after 5 years from going to one doctor to another without any diagnosis.   I was really desperate to know what was causing my pain, fatigue, etc. and because doctors could NOT tell me what was wrong I did my research and diagnosed myself.  All I needed was medical proof which I finally had gotten. 
 
What took away all my pain was detoxing, detoxing, detoxing..  Personally I don't believe in taking a pill because my view is that a pill is not going after the "cause" but just adding more toxins..  I kept it simple, using Dr. J's botanicals and addressing the toxins, my stress levels, diet.   When I became strong enough I was able to start exercising after being bedridden for many years.  
 
I don't believe fibro is a disease but a symptom of an underlying cause such as lyme bacteria.   I guess everyone has a different mindset..  Some people find it easier to just pop pills and mask their pain whereas others think outside "the box" and put in the work (detoxing, etc.) and go after the cause. 
 
Just my opinion from my own personal experience.
 
Hope everyone feels better,
Denise

Traveler
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Date Joined May 2007
Total Posts : 35695
   Posted 9/4/2010 2:35 PM (GMT -6)   
As for me, I have gotten to the point Cajungrl is talking about several times so far, just doing whatever it takes to just get through the day. It's a miserable feeling, & I know that I'm just kind of complicating things for my body by just taking more pills - but, like I said - sometimes you just gotta do what you gotta do in order to just survive the day!!!

Fortunately, I am no longer at that point, thanks to my acu doc!!!! turn smilewinkgrin

I have been diagnose with Fibro- with 18 out of 18 'points' being positive, but I figure that the healthier my body is the less symptoms from whatever I'll feel.
Even the mightiest oak tree was once a little nut who held it's ground!!!
May we all find peace along the journey to find healing.
"Absence of proof is not proof of absence" - Dr. Edwin Masters, great LLMD & researcher -RIP
Trav

rosesinjanuary
Veteran Member


Date Joined Oct 2007
Total Posts : 748
   Posted 9/5/2010 5:12 PM (GMT -6)   
gosh what is it with cymbalta? My dr. recommened it just last week, but mentioned it is expensive, It helps pain and depression? Anybody on it that would like to give a review since I willl have to pocket pay for it?

Simela
I hate lemons I suggest we adopt your little boys name for it instead, what a cutie.
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