His symptoms are much worse. The shaking's spread from his left arm to all over his body, he has a lot of involuntary movements--arm waving and jerking that's way beyond a tremor--and he's having difficulty forming words.
His movements are unlike any movement disorder they're familiar with. He's got an emergency appointment with a Movement Disorder Center on Monday.
Since all this started after being on his new meds for 8 days--and the day after his Bicillin shot--that suggests that they're related. But after 2 weeks off the meds, he's getting worse instead of better. The glutathione treatments are helping less and less each time, even though the dose is increasing each time.
But next week he has his apppointment with his PA and LLMD. They still haven't called back--beyond a very short email message delegated to a staffperson last week. We've let them know what's going on and asked if the LLMD can spend more than the scheduled 10 mins with him.
We're scared, and really hope he can work out what's going on.
[ 10-04-2013, 12:15 AM: Message edited by: Robin123 ]
Posted by Keebler (Member # 12673) on :
- I've had this happen and the ER actually kicked me out for "trying to throw myself off the table" - they were so wrong.
My mother also had the symptoms you describe. Now I know so much that could have helped her then, nearly 30 years ago.
While there are likely various aspects to this (scans of the brain and spinal cord should be done to check for any nerve impingements), to help calm regardless of the cause (and magnesium deficiency could be the underlying cause, though)
MAGNESIUM is the place to begin. And TAURINE, too. With certain other nutrients.
IV Magnesium (or any form until that might be obtained) might help save the day and calm the spasms (myoclonus).
LIVER & KIDNEY SUPPORT & and several HERXHEIMER support links, too. -
Posted by Keebler (Member # 12673) on :
- CRANIAL-SACRAL THERAPY, too. Google: UPLEDGER INSTITUTE to find those near you who do this safe method.
Never let anyone suddenly twist the neck or spine though (can cause damage for those with lyme).
MASSAGE
ACUPUNCTURE, too (they can use points in the still parts of his body.
MYOFASCIAL RELEASE
FELENDENKRAIS
These kinds of body work techniques may be able to target places where pressure is triggering movement. Just a thought to ask those who do these. -
Posted by surprise (Member # 34987) on :
Could it be Sydenham's Chorea? This is brought on by infections-
In children with PANS, a high dose IVIG is sometimes used- You may want to google Sydenham's Chorea.
Sending good thoughts- God bless-
Posted by Lymetoo (Member # 743) on :
Most medications deplete magnesium... so make sure he is getting lots of GOOD mag.. not oxide.
Keep us posted. We care!
Posted by lax mom (Member # 38743) on :
Oh my goodness! I hope he is able to get some relief ASAP.
10 minutes with the Dr is NOT enough. Heck, the phone appts are approx 30 min.
Thankfully, he has you advocating for him.
Sending positive thoughts your way.
Posted by Keebler (Member # 12673) on :
- You say the glutathione is not working as well as expected. Be certain that no acetaminophen is taken as that BLOCKS all body cells' ability to use glutathione.
Many meds contain acetaminophen, so do a search for all ingredients. Even one dose can block glutathione in the entire body. Then the toxins are much more stuck with us.
See that detail in the liver support thread. -
Posted by Kudzuslipper (Member # 31915) on :
I am so sorry Antrhopologista. I will keep R in my thoughts. you in a good hospital?
Posted by daynise (Member # 39609) on :
praying for you
Posted by GretaM (Member # 40917) on :
Anthro-that sounds so scary. I am glad that you are there for R and from what you've mentioned about him before...I bet he's still making some funny jokes to lighten up the situation.
I still chuckle about his brushing teeth joke when I brush my teeth...
Lots of prayers heading your way.
Posted by MannaMe (Member # 33330) on :
Prayers sent up for R and you!
Posted by seibertneurolyme (Member # 6416) on :
Believe me when I say I can relate. Hubby had parkinsonian tremors for about 10 of the 12 years he was sick. It progressed to seizure like episodes and myoclonus and dystonia. No Parkinson's meds helped and neither did seizure meds.
My guess is that your husband has a very severe babesia infection and that is the primary cause of the movement disorders.
Very very very aggressive babesia treatment stopped both hubby's tremors and all movement disorder symptoms and seizure like spells.
But then he was rebitten twice and died from ARDS (lung failure) and a splenic infarction (bloodclot in the spleen) on 10/9/12 due to a CDC confirmed case of babesia.
Hubby saw 30 or 35 different neurologists. Supposedly 3 of those were LLMD neuros. The only neuro that helped suggested IV rocephin indefinitely. After 6 months on IV rocephin we moved on to aggressive babesia treatment as lyme treatment didn't seem to be helping at that point.
A brain SPECT scan could be helpful to track progress and would probably be abnormal. But that really needs to be done at Columbia Presbyterian in New York or some place that really is very lyme literate.
Detox and supplements may help slightly but the underlying infections are the key. We probably spent 300 or 400 a month on supplements for 5 or 6 years until we finally got the aggressive meds needed to fix the real problems.
CoQ10 may help -- but it needs to be at least 400 mg and the ubiquinol form is best although it is more expensive. Also ALA max -- a specific brand of alpha lipoic acid -- helped hubby more than glutathione. That supplement is needed to help your body produce glutathione.
Both lyme and babesia deplete the body of choline which upsets the balance between acetylcholine and dopamine. The symptoms of too much or too little choline are the same and are primarily related to tremors and peristalsis.
Phosphatidylcholine by IV is best but terribly expensive. Phoschol is the next best thing. Hubby said it tasted like burnt motor oil. That supplement is available mail order. It will also help with liver detox and helps rebuild and protect the myelin sheath.
Ativan either oral or IV was the only thing that kept hubby from visiting the emergency room on a daily basis for many years.
Also a slight possibility that bartonella could also be a factor.
For hubby the thing that helped him finally get on the road to recovery was treating all 3 of his known infections -- lyme, babesia and bartonella at the same time. Once he finally got a clean bloodslide with no coccobacilli then we moved on to the lyme and then the babesia. And then anaplasma showed up as well in year 11 before the 2 new tickbites.
Hubby was undiagnosed and untreated for 3 years and then had less than adequate treatment for the next 5 or so years. Hopefully your husband has not been sick too long.
But in my opinion aggressive treatment will definitely be needed for symptoms of his severity. I would suggest a blood smear from either Clongen Lab or Fry Lab to see if bartonella is really a factor. And it could show the babesia even if it is a strain that is not normally tested for. The Clongen bloodslide is not listed on their website -- just call the lab for info.
Bea Seibert
Posted by Anthropologista (Member # 35483) on :
Thank you SO much, everyone! R's on Ativan, which is keeping the shaking and speech problems under control. Kudzu, the Movement Disorder Center's in Beth Israel. Surprise, SC has some similar movements, but has its onset in childhood.
Keebler, definitely no acitominophen. It sounds like you went though some very painful times with your mother's illness, in addition to your own. And thanks--I'll look up those links. Every doctor I've asked says that Mag deficiency shakes are different. And we eat a lot of pumpkin seeds, which are a great natural source.
Right now we have concerns about the PA, and perhaps the LLMD too. We know they've helped a _lot_ of people, and do a huge amount of good, under extraordinarily difficult conditions. But they may not be right for R.
We told the PA again and again, in the first appointment, that R has trouble clearing medication from his body. I don't know if she listened. He now feels she harmed him by treating too aggressively. She called today, finally. No expression of concern. She said R needed to detox more before the glut can help. She's probably right about that. But she was haranguing R, and pushed him way beyond the edge of trust.
We'll go back there, but we don't think we can see the PA again. We'll do everything we can for detox--short of taking proprietary blends, which R now feels are suspect until proven innocent. And try and create a more relaxing environment. My crazy job is not helping. Tried an Epsom Salt bath, which was great and reduced the shaking and speech problem.
It means so much to know you're thinking of us, when you have your own problems to think about.
![[group hug]](graemlins/grouphug.gif)
praying for you