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I feel terrible with episodes of sudden malaise

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Posted 5/22/2015 6:04 PM (GMT 0)
HElp I feel terrible I cannot live likethis anymore. This morning I have been to a professor of internal medicine at one of the mayor teaching hospitals in Belgium where I live. He does not believe in Lyme disease and said that He does not believe in chronic lyme but he does not know what is going on with me. I have been diagnosed with cfs in 2001and MY LLMD has diagnosed me with late stage lyme diseasein may 2014 I took IV antibiotics for 6 weeks rocephin and i had to stop in the middle of the azythromycine iv treatment because i got malaise not a herx reaction Since sep 2014 i have taken samento,banderol and burbur and pinella, with no improvement on the contrary , It feels like iam getting worse I only have one major major major problem that i suddenly become unwell
like I am at the end of the rope feeling like u going to die and this feeling goes up and down like a rollercoaster
Today I was reassonably until 2 hrs ago and then all of a sudden started those terrible waves on uwellnesslikeu feel so bad u r going to die. the last year I did NOT have a problem with joints or musce aches and other typical lyme symptoms I only have brainfog and inabilty to concentrate and feeling of being nervous and sometimes I cannot stand noise.I do think i have lyme disease because i was positve on LTT borrelia elispotand i had increased cytokines IL 8 and PGE 2 as well as a low CD 57(50)
The internal medicine MD that i saw today thinks that I might have a brain lesion that gives the symptoms
HE thinks it may come from a complication due to a heart long machine when I had heart surgery. MY present symptoms started started IMMEDIATELY upon waking from the surgery, my LLMD thinks it can be due to sudden onset of lyme be cause my immune system got worse due to heart surgery
MY QUESTION
IS THERE ANYONE WITH JUST SYMPTOMS LIKE I HAVE no pain no aches just malaise and brain fog
DO I HAVE LYME ONLY OR LYME + BRAIN LESION ?
PLEASE HELP
Posted 5/22/2015 6:15 PM (GMT 0)
jackdg - I'm so sorry you're feeling this bad. What does your LLMD say about how you've been feeling lately? What are his/her plans for your treatment going forward?

Not everyone has pain with lyme disease.

What exactly is the internal med MD saying the brain lesion is? Did you have an mri and a lesion showed up, or is he just going on your symptoms? No one should assume you have a lesion without imaging to prove it.

At this point I would discuss with your LLMD - as you had a positive lyme test...and it certainly sounds to me like you still have an active infection.

Please keep coming back here...and updating us.
Others will chime in and give their opinions, too.
Posted 5/22/2015 6:28 PM (GMT 0)
girlie my MRI showed non specific infarcts that are of no clinical significance very small and normal for an age of 54 Nothing really abnormal
My regulare md says that the lesion is not visible on MRI because it could be too diffuse to see, bit in fact he does not know
My LLMD wants me to start either 100 mg minocyclin or 2x 200mg doxycycline and to continue with cowden protocol athough he said he is not sure the herbs work
Posted 5/22/2015 10:51 PM (GMT 0)
jackdg

As you know, "CFS" is not really a diagnosis, it's a convenient name for symptoms MDs don't understand the underlying cause of. So, it will change your life once you know what is causing the fatigue.

My MAIN symptoms when I first found an LLMD were extreme fatigue (so much that I could not shower or eat) along w/ other typical lyme & confection symptoms, due to very high viral loads. Since a child, I've been prone to consistently "reactivated" Epstein Barr Virus. Nearly everyone is infected w/ EBV by adulthood but many don't ever exhibit symptoms.

But ticks that carry lyme also carry other co infections AND fungal and viral infections. So, while we were waiting on lyme test results, my LLMD also tested me for 4 other viral infections common to lymees and I had high titers for all. My fatigue and malaise was so severe, I could barely function.

One of the first things she did was put me on antivirals. I took very high doses for nearly 2 months and switched to a different antiviral before I felt relief but I finally did. A year later, I am still unable to go off the antivirals w/out all those sx coming back so I am still taking them, much to my frustration. My immune system just cannot handle fighting off these viruses AND dealing w/ the lyme & co.

You could also just not be handling treatment well enough because you are not detoxing efficiently. Hard to say w/out knowing more about your treatment and protocol...

p
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