What causes the smptoms to keep changing?

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Turquoise Sky
Regular Member


Date Joined Apr 2009
Total Posts : 250
   Posted 5/23/2009 6:14 AM (GMT -7)   
I get that  there are specific reasons for the specific symptoms, but why do they change? 
 
Also does anyone know if the tight musles in the back are caused by the spirochetes being there, or the reaction to them being there, or the reaction to the fact that my body is under physical stress while trying to heal, or just the need to detox? 
 
My other symptoms are mostly under control, other than some slight knee stiffness, and if I don't take my detox bath or drink enough I get pressure around my eyes.  I can still feel that my lymph nodes are still tender.  The other muscle, nerve and joint pain seems to be gone and I can do a little bit around the house. Still need to rest in between, but at least able to do something other than sit or lie around!
 
Thank all of you for all the info you all offer here!
 
 

CajunGrl
Veteran Member


Date Joined Mar 2009
Total Posts : 4717
   Posted 5/23/2009 8:32 AM (GMT -7)   
In my opinion and from some things I have read, I think the symptoms change because the spirochetes move to a different location. Different location=different symptoms. That's how I see it anyway.

I don't have any answers regarding your back. I'm sure someone here can help you.

I wanted to ask....have you always had lymph node swelling? Mine started swelling after a high dose of amoxicillian. It flares up and swells everytime I run fever.
2003 symptoms started
2007 found an LLMD and was diagnosed with Lyme. Didn't start treatment.
2008 symptoms came back with a vengence.
2009 Diagnosed with Lyme plus co-infections....Babesia and Bartonella.
Illnesses:-Chronic Lyme Disease,Hashimotos Thyroiditis, Ulcers, Hypoglycemia
Medications:-Biaxin 250mg to start,Mepron,Ultram,Thyro Complex 60mg,Probiotics and supplements


springsjean
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Date Joined Mar 2009
Total Posts : 2154
   Posted 5/23/2009 8:57 AM (GMT -7)   
Great question. I wondered the same thing. For three years, I had what I thought was every symptom and only upon starting treatment did I start with joint pain and tightness. I can't figure it out for the life of me.

nefferdun
Veteran Member


Date Joined Feb 2008
Total Posts : 900
   Posted 5/23/2009 9:47 AM (GMT -7)   

Me either!

I believe the spirrochetes travel from location to location.  As most of my symptoms come back from time to time, I believe they can remain dormant in locations and then become active again.  But that is must my theory.

My back is also tight.  It often feels like something is pinching the muscles and it changes locations.  I had such bad back pain before I knew I had lyme that I had to take pain killers for a month.  Then it disappeared for about 2 years - very odd.

Now I also have tendinitis in my right arm.  This arm was affected before treatment, again for about a month, so that I could not use it.  The pain came back and got much worse while using Levaquin.  It is my theory that the levaquin set this off in an already weakened area.  I have been off levaquin and all abx for over 2 months but the pain is still there.  It aches so much at night it is hard to sleep.  It if funny that I cannot lay down flat but have to sit with a lot of pillows behind me or it is much worse.  I believe this is toxin build up from the abx which will take a long time to clear out of my system.  I read it is called flox, or something like that.  It is improving very slowly.


Turquoise Sky
Regular Member


Date Joined Apr 2009
Total Posts : 250
   Posted 5/23/2009 11:25 AM (GMT -7)   
Thank you all for your observations.

CagunGirl, you asked if my lymph nodes were always swollen. Yes, and also the glands in the throat, from the very beginning in 2005, when I first found the tick bite in June. It wasn't noticable at first, but that whole summer while I thought I was just fighting off a cold or virus or something, not realizing it was Lyme. In August they became so severely swollen that it caused the intense neck pain that was not relieved by the two different pain meds and musscle relaxers and all I could do was lie flat and try not to move. I also was going to the chiropractor and getting ultrasound in the MD's office. It was the chiropractor who told me that it was my lymph nodes causing the pain. He was also the one who helped me to diagnose myself. As the neck pain was becoming bearable, I began to feel ill again, and went to the MD and asked to be treated, which he did. But only with 10 days of Doxclycline 100mg bid.

I thought I was better, and seemed to be symptom free until March. It appeared to be severe sinusitis, which did cause the lymph nodes and glands to become swollen as well, but they have never gotten to the extent as in 2005. The new thing that came along this time was the parastesia which for me felt like bruising in all of my nerve endings all over my body, especially feet and hands. It would vary in intensity, and move around. As that was beginning to subside, the muscle and joint pain began.

But all along I've had these tight back muscles, with a pinchy and sometimes tingling feeling. It was just at the top and up into the back of my neck, then the middle, then more in the lower, andnow its the middle and the top. At first I was blaming it on being weakened and still working. Since I started the IV ceftriaxone, I have been off work, and finally able to rest. Now everything seems to be subsiding, except the back stuff, a little bit with the knees, and the lymph nodes. I feel a lot better overall, but should these still be present?

JELAINEP
Veteran Member


Date Joined Sep 2007
Total Posts : 2017
   Posted 5/23/2009 1:13 PM (GMT -7)   
Turquoise Sky said...
symptoms, but why do they change? 
Because that IS the nature of the beast

Never doubt that a small group of thoughtful, committed citizens can change the world. Indeed, it's the only thing that ever has.  - Margaret Meade
06/00- The beginning, 08/01-LD positive, 10/01- Igenex and CDC LD positive, 10/02-LD positive, 11/03-LD positive, 10/07-Bartonella positive, CD57=3, possibly just tested positive for koseri IgA, Morganella motgani,Rocky Mountain Spotted Fever (RMSF - yay! another acronym), Typhus Fever, Klebsiella pneumonia, Proteus miabilis, Citrobacter i IgA, Hafnia alvai IgA, NKC4, Interleukin 4 (IL4), IL8, Immunobillin (IM01). 
Current Rx's 11/12/08: Wellbutrin 300mg, Paxil 60mg, Xanax 5mg, Acidophilus, Lyrica 600mg
"How much more can I take?", songhttp://www.youtube.com/watch?v=5gHiR1xeOSs


CajunGrl
Veteran Member


Date Joined Mar 2009
Total Posts : 4717
   Posted 5/23/2009 2:58 PM (GMT -7)   
Turquoise,

Do you think you were treated properly? 100mg doesn't seem like much at all. Or maybe it's toxins stuck in the Lymph nodes. I've heard of that before too. How long were you treated?

When my Lymph nodes swell, I usually have the sinus flare up too. My throat hurts right along with it and I've never had a sore throat since I took my tonsils out when I was little. I even have a swollen Lymph node under my left arm that bothers me really bad. I think I may need to have it checked.
2003 symptoms started
2007 found an LLMD and was diagnosed with Lyme. Didn't start treatment.
2008 symptoms came back with a vengence.
2009 Diagnosed with Lyme plus co-infections....Babesia and Bartonella.
Illnesses:-Chronic Lyme Disease,Hashimotos Thyroiditis, Ulcers, Hypoglycemia
Medications:-Biaxin 250mg to start,Mepron,Ultram,Thyro Complex 60mg,Probiotics and supplements


Turquoise Sky
Regular Member


Date Joined Apr 2009
Total Posts : 250
   Posted 5/23/2009 5:11 PM (GMT -7)   
CajunGrl,

Originally, in 2005, it was only the 10 days of Doxycyline, then I went to the health food store and went on Cat's Claw and Wormwood, also NAC and Clorella. I might have taken other things as well, but I can't remember. After about a year I went off of the herbal stuff, because I seemed to be fine. I also take my multi-vitamin and probiotic, those I didn't stop.

In March, when it appeared to be a sinus infection, I was put on Biaxin for 3 weeks. THen when the parastesia became worse, I was put on the Doxycycline 100 mg bid, sent for an MRI and set up with an appt. with an ID MD. I was on the Doxycycline for approx. 5 weeks, until the PICC line was inserted and started the Ceftriaxone. I am improving, but not sure if I will be completely well with 28 days of the IV. That is what the ID MD agreed to prescribe, even though according to the Western Blot I don't have enough new reactives to call it positive for a new infection (it did show positive for an old infection). She also doesn't believe in chronic Lyme, but agreed that the first time I was treated it wasn't enough to kill it. She believes that the 28 days is enough to kill it, and if I didn't improve it wasn't Lyme in the first place, and she would send me back to the MD to explore what else it could be. So I was just happy to be treated.

Either way I will be going on the herbal treatments, a blend that contains teasel and other herbs. I also heard of someone in my area (Reading PA)that makes rife machines, but I haven't checked into that. I actually was told this by one of the nurses who helped to put in the PICC line. She knew of a nurse who used it and was effective for her. She said that the Drs. wouldn't treat her for Lyme at all.
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