I will be sending in my testing to Igenex in another 3 weeks, when I am finally finished with my steroids.
I was going to just order the initial lyme panel.
However, being that I have also ALS-like symptoms (among other things) along with severe air hunger, any reason to also check for coinfections?
Is it possible to have the coinfections without testing positive for lyme (I guess my confidence is shot from 2 negative Elisa's)? Especially if the lyme was contracted more than a decade ago and left untreated?
a good weekend to all!
Posts: 169 | From former Philadelphian | Registered: Jun 2006
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posted
I too have ALS like symptoms.Just had another EMG on the 21st. Normal. Neuro Dr said it is very unlikly to have a normal EMG and ALS. Have you had that test. It tests muscle function. If I were sending blood to Igenex at this point I would test for the whole shebang!
Posts: 408 | From NY | Registered: Jan 2006
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posted
Had an "urgent" EMG done 2 weeks ago, being that I can't move my toes, dragging my feet etc...Dr.was astounded to find that it was nomal. He kept repeating "that's strange" throughout the test. The test was normal in muscles that were exhibiting weakness. He says that he doesn't know what to make of it, maybe an infection?
Even had the test shown ALS, I would still be suspecting lyme because there is so much other stuff going on, ALS wouldn't make sense.
Posts: 169 | From former Philadelphian | Registered: Jun 2006
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posted
Well thank Goodness for a Normal test. That can rule out the Motor Neuron Disease. Do you have fasics or twitching??
Posts: 408 | From NY | Registered: Jan 2006
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SForsgren
Frequent Contributor (1K+ posts)
Member # 7686
posted
Any reason to check for coinfections?
Co-infections are the RULE, not an exception
The average child with Lyme has 2-5 co-infections with an average of 3.
Treatment of co-infections is required and often, they must be treated BEFORE or concurrent with the Borrelia treatment itself.
If you don't test for and treat co-infections, you are not putting yourself in a good position for healing.
Almost everyone with chronic Lyme likely has 1 or more co-infections.
Co-infections require DIFFERENT treatments in many cases. Do not assume that you are covering them with only the Lyme treatment. Many people don't even know which ones they have.
Co-infection testing is often unreliable as well and you need to repeat them over time. It took 4 months for my Bartonella to appear and almost 8 for Babesia to finally appear, but they were there.
If you think you only have Borrelia, odds are you have not looked closely enough.
-------------------- Be well, Scott Posts: 4617 | From San Jose, CA | Registered: Jul 2005
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posted
Steroid use prior to testing can make the test show negative....even if it's many months or years prior. Steroids suppress your immune system, making the immune response too weak to make antibodies.
That said, just find a dr who will treat according to clinical findings. That would be a GOOD LLMD.
Severe air hunger can indicate babesia. Babesia does require entirely different meds than those used for Lyme. And the tests for babesia are not any better than the tests for Lyme.
posted
air hunger is considered a babesia symptom. I was clinically dx w babs and treated for it three times. I had multiple Igx tests for babs and sonoma Co for Wa-1. All were always negative. Finally had an MDL babs elisa that was positive. Fortunately my LLMD didn't wait for a pos test to treat. Also had a dear friend w Babs who was clinically dx. She too had many negative tests and then years into tx a positive.
Good luck Pomegranite
Posts: 309 | From CA | Registered: Nov 2002
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groovy2
Frequent Contributor (1K+ posts)
Member # 6304
posted
AM
Test for co infections are Very Poor- in my openion useless-dont relay on them-
Over 20 All my tests came back Perfect-Clean
I have Lyme and Babs--For Sure
Air hunger = Babs--Jay
Posts: 2999 | From Austin tx USA | Registered: Oct 2004
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posted
Can you wean off STEROIDS sooner than 3 weeks.
If you have been suspecting Lyme. Why would you take steroids?
I am not trying to be critical just trying to help.
How long have you been on them?
They will likely affect your tests.
Get to a llmd asap. One that will treat you for all coinfections regardless of test results.
Maybe they can start you on antibiotics right away.
And yes it sounds like Babs for sure.
lyme x 9
Posts: 399 | From Texas | Registered: Apr 2005
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mlkeen
Frequent Contributor (1K+ posts)
Member # 1260
posted
I have 3 co-infections, two turned positive after 2 years of treatment, and live outside Philly. Our llmd will treat based on a clincal diagnosis, and use the blood work to confirm and track the diseases. See if you can find an llmd that will treat clincially. Then you won't have to worry about the steriods affecting you blood work.
Posts: 1572 | From Pa | Registered: Jun 2001
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I was on steroids because the neuro thought I had myasthenia gravis at first, mestinon was helpful for a while until it stopped working (as will happen in ALS,had a suspicious emg last year, etc., my insurance won't approve IVIG for myasthenia gravis.
There are no LLMD's where I live. I live out of the US now in a tick-free country, no lyme here=no llmd's. I am having too much trouble breathing to safely fly to the US for treatment. At least my gp is also a former Philadelphian.
Got the whole gamut of ALS'like symptoms:
extreme muscle weakness in toes (other muscles not too great either), dragging feet while walking (I use a cane full-time), cramping, breathing, swallowing issues, some twitching and fasics, but that came later, slurred speech when tired, drooped eyelid when tired, hyperreflexia...and good attitude
No one thought to check lyme because it doesn't happen here. I put 2 and 2 together when I was searching to see what this can be if not ALS.
I also have POTS, which doesn't come with ALS, and many many flu-like episodes. Shock-wave chills, sore throats.
Been told I have probable lupus, given malaria medicine, then undiagnosed. Muscle issues were the last to come (following a period of severe headaches in the back of my head that sent me to the ER)
If testing comes back negative, I'm in trouble in terms of getting treatment.
Igenex told me to be off prednisone for one week.
Posts: 169 | From former Philadelphian | Registered: Jun 2006
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