posted
Do you think you have to have fatigue to have Borreliosis?
I have unexplained nuerological sensory paresthesias all over (cold water feelings, stinging, stabbing, burning etc) as well as some trigger points muscle pain which has been difficult to treat. The nerve stuff didn't start until I took antibiotics from a "lyme disease doctor", but has persisted for years after stopping. It comes back suddenly and slowly goes away over 6-18 months. It -seems- to come back with upper respiratory infection, though I'm not totally sure yet. I get -no- fevers or "herx" like reactions when this happens and have not taken antibiotics.
I have no fatigue at all and have good energy. Who else here has good energy?
P.S. Does anyone plan to get the new GMU / Ceres Nano nano trap antigen test when it comes out later this year?
Thanks
Posts: 136 | From arlington, VA | Registered: Jun 2010
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hiker53
Frequent Contributor (5K+ posts)
Member # 6046
posted
It's been 11 years and I cannot remember what I felt like then--LOL. Plus I am now eleven years older and my body has aged!
I have enough energy to work fulltime, but am exhausted at the end of the day.
What is the new GMU/Ceres test all about?
Hiker53
-------------------- Hiker53
"God is light. In Him there is no darkness." 1John 1:5 Posts: 8876 | From Illinois | Registered: Aug 2004
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posted
There are lots of news articles posted about the George Mason University partnership with Ceres Nano to release a new Borreliosis test this year.
This test is supposed to address the long standing problem of using antibodies to detect the infection as this test uses the antigens shed by borrelia during active infection rather than an antibody response. It should hopefully bring clarity to the issue.
This test will detect ospA antigens from all strains of the Bb genospecies during early infection before antibody tests will work or later infection.
I believe this test will likely be considered valid and legitimate.
Judie
Frequent Contributor (1K+ posts)
Member # 38323
posted
I know 2 people with Lyme who have TONS of energy. Lyme manifested in other symptoms like joint pain, muscle weakness, brain fog, but they still had more energy than the average person.
Posts: 2839 | From California | Registered: Jul 2012
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I just have these trigger points. But the really scary thing is since trying the treatment for lyme disease to fix the muscle problem I also have this weird neuropathy thing.
It is like cold water feelings in my limbs or skin all over and also burning or stinging. The first time Johns Hopkins said they thought it could be immune mediated. It took a long time and went away slowly after about 18 months I think. It slowly leaves the upper body and goes mostly the the feet. But for some reason it has come back twice and it is all over just like before.
It came back twice since and seemed to coincide with an upper respiratory infection 10 days in or so. It could have been a coincidence and caused by something else like physical activity, I don't know.
After I left the Lyme doctor I decided I didn't have lyme disease and haven't been following this for about 3 years now. I just heard a new test is coming out (The George Mason Ceres Nano trap antigen test), so maybe we will learn something.
The stuff the doctors are doing makes me totally turned off from this Lyme disease idea because they just seem totally nonsensical. Mine was even pushing some kind of tincture in the beginning to make me "herx" which should have been an indicator that it was wrong. Later they were telling me to take homeopathy if I didn't want to take antibiotics anymore. sheesh.
Posts: 136 | From arlington, VA | Registered: Jun 2010
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LisaK
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posted
my experience as I go through treatments at this time- for the last few months- is that all these bugger diseases seem to cause so many, too many, overlapping symptoms that it is impossible to tell where they originate from!
so treat them all and get better
-------------------- Be thankful in all things- even difficult times and sickness and trials - because there is something GOOD to be seen Posts: 3558 | From Eastern USA | Registered: Jul 2013
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dbpei
Frequent Contributor (1K+ posts)
Member # 33574
posted
applewine, sometimes I question my lyme dx as well. I never even tested positive by Igenex, but had a positive PCR instead. Before taking ABX, I was less symptomatic.
I lost almost all hearing in one ear suddenly in 2011 and this was followed by vestibular damage, horrible tinnitus and a 'vibrating sensation' in my very heavy head.
I did develop fatigue at that time - as my brain was having to work much harder to compensate for these losses. But my fatigue was never debilitating like so many here. I also never had much pain, except for when I was on ABX.
After several months of decline, I found a LLMD who diagnosed me with Lyme. I took ABX for a year and did not seem to do any better.
Once off the ABX, I took herbs. I did feel better, but still had (and have) strange parasthesias (tingling, bug crawling sensations, heat and as though liquid or ginger ale was moving through my skull).
This has not left me and seems to be worsening. I do have enough energy to get through the day, but am tired by late afternoon. I don't have much pain either. So I don't seem to fit the profile of many here. But my blood work shows that I have antibodies for many other tick born diseases with a history of untreated tick bites and a summer flu in 2006.
Before getting sick, I had a daily ritual (2 decades long) of aerobic exercise with strength training and yoga. I tried to keep at it, but switched to every other day when taking ABX and not feeling well. There were days I couldn't do any of this. But I do wonder if this regimen might have helped to decrease the pain and fatigue.
I would LOVE to have a foolproof test and know one way or the other if I am treating the right illness! One of the things I am investigating is to see if I might be having a reaction to my dental implant that was done in 2008. Since most of my symptoms are worse in this part of my body and there is a big cyst in my sinus above it, my LLMD, dentist and I all wonder if it is somehow connected to my illness.
I have seen 2 ENT's and 2 oral surgeons and none of them agree on this theory. I am continuing to pursue this and trying to get blood testing done to see if I might be allergic to the titanium in my implant.
Perhaps Lyme contributed to this, weakening my immune system. I don't know. But if I ever do find out, I will let everyone here know! I hope that new test is more foolproof than the awful testing we have now!
Posts: 2386 | From New England | Registered: Aug 2011
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poppy
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posted
What difference would this new test make if you have already decided that no type of treatment is useful?
I have no fatigue (as in the chronic type). Rather, when my muscles are affected, then I have fatigue, but that is different. I also had babesia, which is gone now, but had no fatigue with that either.
Have often wondered if the fatigue element is an additional and undetected coinfection, or perhaps something latent which has now switched on in some people because of the immune dysfunction caused by an immune system that is constantly playing catchup when the borrelia keep switching their surface antigens.
Posts: 2888 | From USA | Registered: Mar 2004
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ukcarry
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posted
Good point, Poppy.
I have a lot of fatigue, but have read accounts by quite a few people with lyme who don't seem to have serious fatigue.
Posts: 1647 | From UK | Registered: Nov 2008
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LisaK
Frequent Contributor (1K+ posts)
Member # 41384
posted
during my lyme treatment- 18 days with herbs- I had THE WORST fatigue I have had since my major relapse in the past summer.
I know it was herx from lyme.
I still get some fatigue though, and I still need treatment for bart and RMSF, so... I really think al these symptoms overlap.
-------------------- Be thankful in all things- even difficult times and sickness and trials - because there is something GOOD to be seen Posts: 3558 | From Eastern USA | Registered: Jul 2013
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