posted
Omg: My arms are so hard to move that it takes a lot of power to even do simple things. Also my face muscles become more and more difficult to control.Its getting worse since months: Cant smile, its difficult to speak and keep my eyes open sometimes. Panic. I dont want to be paralyzed.
These symptoms get worse when I take any oral meds which could be due to a leaky gut syndrome. But even when I tried substances that are supposed to calm the gut like zinc and fish oil I only got more fatigued and lost more of my ability to control my face and and my arms. How should I get rid of this stuff if I cannot take anything?
When i lie down this is even more severe, very strange. These are the worst symptoms i have ever experiened. Im unsure if all this is typical for lyme and/or leaky gut as is my llmd. Have you heard of anybody with a similar history? Did any of you have this and how did it go away?
TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
I know a doctor who is now treating lyme since he has it. He has had it for 4 years. At one point, his patients told me that he could barely move his arms and that he had terrible brain fog.
Haven't heard anything about him lately, so I can't say what is going on. But, he is still practicing medicine and seeing lyme patients, one year after these reports. So, my guess is that he is doing OK.
Posts: 9931 | From Maryland | Registered: Dec 2007
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nonna05
Frequent Contributor (1K+ posts)
Member # 33557
posted
which co-infection mimics CFS???
Did it start with any new changes in meds???/
Seems like I've read about similar symptoms here and it was one of the co's kicking up.
Any possible stroke stuff???
Read the "MY Story" by lady who wrote Sea Biscut.
It's short just Google Sea Biscut (was a movie)
Then look for her story , not the actual book.. ..
Many here talk about arm's, numb, palsy etc/
Feel better soon, Nonna
Posts: 2563 | From Denver,CO | Registered: Aug 2011
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nonna05
Frequent Contributor (1K+ posts)
Member # 33557
posted
Maybe put CAN"T move.....edit
Trouble moving arms etc.
I know I've seen several post's or remarkes about this .
I'm supprised more haven't joined in this.
Do you have a LLMD to ask which CO-infection causes this???usually//Or is he open to calling another LLMD and asking..
I know that's a stretch...............
Blood flow issue?????
I hope somebody, Keebler, TuTu, Sixgoofy,Brussels, GiGi.....some of the guy's will respond.
It must be so scarry.....
I've had pain that stopped me from moving parts at times and total weakness.
One minute ,I'm typing here....and in an hour I could use/ need help to turn head to drink water.....If no help then I just sleep and hope better in a while.
Same with getting up for bathroom , have put it off for hours cause just so knocked out..
This whole illness just bites, pun intended.
Take care I just shed a tear for you and prayer.) Nonna
Posts: 2563 | From Denver,CO | Registered: Aug 2011
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manybites
Frequent Contributor (1K+ posts)
Member # 33750
posted
I have had the same thing once I relapsed due to the car accident.It was the fry protozoa bug and babesia untreated.Now that I have been in treatment for almost 1 1/2 year I can controll the face movement better . You need to take high dosages of medication to reach the brain.I am in biaxin plaquinil Mepron and artemisin .It feels better than it used to be.My arms could not move as well 5 years ago .I had neurolyme , bart and babs .Bart was treated for 2 1/2 years and Lyme as well with antibiotics and bionic so I know it is babs and the Fry bug that makes the skin hang and can not controll the face muscles , neck shoulders and arms are week. Are you sure you do not have babesia Duncani ?
Posts: 1379 | From disable | Registered: Aug 2011
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posted
manybites, did you test positive for babesia duncani? Through which lab? I have weak arms, neck, and shoulders as well. I think it is babesia. I get slightly off balance too and pressure headaches in the very back of my skull/neck. I have been treating babesia for 16 months, but I pulse treatment. I have taken mepron, malarone and daraprim. currently on daraprim and have been for the last year. Daraprim treats the Fry bug too. I am way better than I was a year ago.
I sure would love to know 100% if it is babesia -- that way, I can continue to focus on treatment. It is hard when you don't know for sure and you are taking so many meds.
Posts: 618 | From NC | Registered: Oct 2009
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posted
Yes, babesia is indeed one possibility as is bartonella. Its so hard to fight against a hidden enemy. But babesia meds like malarone didnt really help when i tried them.
Posts: 214 | From Home | Registered: Apr 2011
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gmb
Unregistered
posted
I too struggle with heavy, weak and sore arms with stiff shoulders. Especially in the am when drving to work. But neck crack/snap/n'pops have diminished greatly in the past six months, so some things are improving.
I try to use a pair of 3-lbs dumbells to lightly exercise the arms a few days a week, but can't over do it with a PICC line in my arm.
I've been treating for two years, and right now I am on week 9 of IV Rocephin with oral Zith, and 5th week of Rifampin to hit Bart.
I did 5 months or Mepron thru last summer into fall to knock down the Babs, but LLMD said we most likely will need another round later.
It's hard to figure out what's what with overlapping symptoms and staggered phase-in of different ABX classes.
posted
gmb, rocephin plus oral zithro helped me a lot earlier on in my disease (well not on the long run unfortunately).
do your heavy arms also feel like its a neurological problem from the spine? are they also more heavy at night?
Posts: 214 | From Home | Registered: Apr 2011
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gmb
Unregistered
posted
Sickmate,
My heavy weak arms are mostly in the am. Can't tell if they stem from my spine, but I do see a holistic Chiro every other week who keeps by back well aligned, as well as providing various detox therapies.
Saw my LLMD yesterday, Liver Enzymes remain good. They had elevated last Nov and Dec while on Rif/Zith/Doxy oral combo and took some time off.
Next week I increase dose IV Rocesphin to 2x/day for 4 days, then 3 days off. Zith stays the same all week.
If I'm OK after the first week of double dosing, I stop Rifampin and switch back to Mepron. Occational lite night sweats and recent bruise marks show Babs trying for a comeback. I kind of knew that 5 months on Mepron was too easy.
posted
Night sweats are a good sign since they show that your immune systeme is working hard. Glad to read you re still able to work.
Posts: 214 | From Home | Registered: Apr 2011
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Rumigirl
Frequent Contributor (1K+ posts)
Member # 15091
posted
It sounds like maybe you need an LLMD who knows what is going on better or how to address it better? I know that no one knows everything, but some have way more experience than others.
It also sounds like you could use a LL neuro, also. There are a few, not too many, all depending on where you are located or willing to travel to.
Posts: 3771 | From around | Registered: Mar 2008
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posted
Thanks rumigirl, ive tried several llmd, but after such a long time only getting sicker from everything even they seem a bit like they dont what to do with me anymore. Especially if you cant stand any medication anymore
Posts: 214 | From Home | Registered: Apr 2011
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I just shed a tear for you and prayer.) Nonna
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