posted
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 ]
Posts: 431 | From New England | Registered: Dec 2011
| IP: Logged |
Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- 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. -
Posts: 48021 | From Tree House | Registered: Jul 2007
| IP: Logged |
Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- 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. -
Posts: 48021 | From Tree House | Registered: Jul 2007
| IP: Logged |
surprise
Frequent Contributor (1K+ posts)
Member # 34987
posted
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-
-------------------- Lyme positive PCR blood, and positive Bartonella henselae Igenex, 2011. low positive Fry biofilm test, 2012. Update 7/16- After extensive treatments, doing okay! Posts: 2518 | From USA | Registered: Nov 2011
| IP: Logged |
Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- 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. -
Posts: 48021 | From Tree House | Registered: Jul 2007
| IP: Logged |
Kudzuslipper
Frequent Contributor (1K+ posts)
Member # 31915
posted
I am so sorry Antrhopologista. I will keep R in my thoughts. you in a good hospital?
Posts: 1728 | From USA | Registered: May 2011
| IP: Logged |
posted
praying for you
Posts: 428 | From Midwest | Registered: Dec 2012
| IP: Logged |
GretaM
Frequent Contributor (1K+ posts)
Member # 40917
posted
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.
Posts: 4358 | From British Columbia, Canada | Registered: Jun 2013
| IP: Logged |
MannaMe
Frequent Contributor (1K+ posts)
Member # 33330
posted
Prayers sent up for R and you!
Posts: 2251 | From USA | Registered: Aug 2011
| IP: Logged |
posted
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
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
| IP: Logged |
posted
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.
Posts: 431 | From New England | Registered: Dec 2011
| IP: Logged |
posted
Bea, I'm so very sorry that you lost your husband. Thank you so much for telling us this, and for turning your difficult struggle into a learning experience for others.
Posts: 431 | From New England | Registered: Dec 2011
| IP: Logged |
Jane2904
Frequent Contributor (1K+ posts)
Member # 15917
posted
So sorry, hope this all gets sorted out and your husband feels better.
Posts: 1357 | From Massachusetts | Registered: Jun 2008
| IP: Logged |
posted
I want to stress that the fact that if Ativan is working it indicates that the problem is most likely not due to detox issues but due to a central nervous system infection which will require very aggressive treatment -- preferably with combos of meds, herbs and nutritional supplements.
Ativan will make any existing detox issues worse and is an addictive med unfortunately.
Hubby had a minor genetic detox issue which was corrected with nutritional supplements.
For years every dose of meds he took caused seizure-like episodes like clockwork -- depending on the half life or peak dose of the med. Effective herbs also caused similar reactions.
His first med was 2 months of IV rocephin 3 years after he got sick -- I had to stop almost every dose one or two times to give IV Ativan to control the seizure like spells. It never actually stopped his tremors. I was giving daily doses of IV glutathione as well.
Within a week of stopping the IV rocephin the maybe 25 percent overall improvement in symptoms mostly went away and we were back to square one because the bartonella and babesia were initially missed.
After about 10 years when hubby finally found a good babesia treatment protocol his shaking and seizure like spells just went away. 3 times we tried pulsing those meds and within 2 or 3 days the headaches, dizziness, sweats, nausea/vomiting/dry heaves and tremors and seizure-like spells started coming back.
But then we added more meds and after another 3 or 4 months he actually stopped all meds for a couple of months and felt the best he had since first getting sick. But the first new tickbite was while off meds and even before that minor symptoms were coming back.
The 2nd treatment with 6 months of rocephin around year 10 was much more helpful because bartonella had been treated aggressively at that point.
Bea Seibert
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
| IP: Logged |
lpkayak
Honored Contributor (10K+ posts)
Member # 5230
posted
Thinking of you two. Hope it straight ens out. Im glad bea is here to help
-------------------- Lyme? Its complicated. Educate yourself. Posts: 13712 | From new england | Registered: Feb 2004
| IP: Logged |
Catgirl
Frequent Contributor (5K+ posts)
Member # 31149
posted
I'm so sorry to hear this. Everyone has provided great advice above. Hang in there, and push forward. I'm sending good thoughts your way. :)
-------------------- --Keep an open mind about everything. Also, remember to visit ACTIVISM (we can change things together). Posts: 5418 | From earth | Registered: Mar 2011
| IP: Logged |
Kudzuslipper
Frequent Contributor (1K+ posts)
Member # 31915
posted
I am sorry to read that R has not improved. Thinking of you both.
Posts: 1728 | From USA | Registered: May 2011
| IP: Logged |
Sammi
Frequent Contributor (1K+ posts)
Member # 110
posted
Anthropologista, how is R doing today? I hope better.
Posts: 4681 | Registered: Oct 2000
| IP: Logged |
posted
The involuntary movements and speech problems have faded! Still there a little when he's stressed, but on the way out. He's even off Ativan!
I can't thank you all enough for your advice and support. Bea, thank you so much for all your information and for telling your very difficult story about your husband. I'm so sorry he got those 2 new bites.
Given your experience, I'm wondering if R had a huge Babesia herx. He was being treated for Babesia and Lyme together: Mepron, Azithromycin, Plaquenil, Bicillin shot. Did your husband ever have problems forming words?
We've changed to the NP, and will be seeing him + the LLMD on Tuesday. I have some video of R's symptoms, which I'll show them. It would be good if they could give us a sense of what caused them. If nothing else, I hope it'll underscore the importance of starting slowly and ramping up gradually.
Greta, yes, R still found humor in this scary episode:
--When we met his daughter for lunch in a restaurant near a Shaker museum: "Hey, I can hire myself out as a visual aid!"
--In the Beth Israel ER: "How much shaking does a guy have to do to get the automatic paper towel machine sensor to work?"
Hugs right back at all of you! Posts: 431 | From New England | Registered: Dec 2011
| IP: Logged |
lax mom
Frequent Contributor (1K+ posts)
Member # 38743
posted
Sounds like a good plan switching to the NP +LLMD. I've heard the NP is a very good listener...which is exactly what you guys need right now.
Catgirl
Frequent Contributor (5K+ posts)
Member # 31149
posted
Right on! Stick with them (they're good).
-------------------- --Keep an open mind about everything. Also, remember to visit ACTIVISM (we can change things together). Posts: 5418 | From earth | Registered: Mar 2011
| IP: Logged |
posted
Yes, when hubby had dystonia spells -- he could not move a muscle and also could not speak. Sometimes the dystonia was restricted to his upper body but other times the entire body was involved.
His Bell's Palsy would be activated as well during bad episodes -- mouth would droop and he couldn't open one of his eyes. But his hearing worked fine. He always had stories about what the docs and nurses said about him when I wasn't in the room.
These episodes happened daily for many months and the only thing I could do was give him IV Ativan to relax the muscles. And when that didn't work after a couple of doses then I would wait an hour or so and take him to the ER -- where he would usually get more Ativan. The bad ER episodes usually were triggered by changes in meds or herbs.
In my opinion babesia responds differently to treatment than lyme. With babesia usually if the treatment is working symptoms resolve quickly -- within days or weeks -- and relapses happen just as quickly. For the most part hubby just felt better if babesia treatment was working.
Glad to know things are going better.
Bea Seibert
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
| IP: Logged |
posted
Thank you Bea and Greta! R's movements improved, but have not gone away. The LLMD and NP identified them as chorea-like movements, and think that they're an unusual herx reaction.
But if they're still there 2.5 weeks after the meds were stopped, can this still be a herx? R does, apparently, have extremely clogged methylation pathways, which might explain it. We're worried that this is becoming a new normal.
The NP was wonderful. We were very glad to have the LLMD's input and knowledge, which were impressive, but he was impatient. And he looked at and talked to me rather than R. We both hate it when doctors do that. The NP was totally focused on R, in contrast. He also seems like a person who would call you back during a crisis. So glad we have him.
Posts: 431 | From New England | Registered: Dec 2011
| IP: Logged |
Sammi
Frequent Contributor (1K+ posts)
Member # 110
posted
Anthropologista I am so glad you like the NP, I thought you would.
Is R. doing things to detox?
Posts: 4681 | Registered: Oct 2000
| IP: Logged |
Catgirl
Frequent Contributor (5K+ posts)
Member # 31149
posted
I'm glad you liked the NP. :) He's a good listener and very compassionate. They got 80 calls from people after the doc's appearance on Katie's show, all wanting to become new patients. Maybe that's why he was impatient. Either way, he's worth it, IMO (brilliant).
-------------------- --Keep an open mind about everything. Also, remember to visit ACTIVISM (we can change things together). Posts: 5418 | From earth | Registered: Mar 2011
| IP: Logged |
posted
Thanks, Sammi and Catgirl. Yes, R's detoxing, but cautiously. BW's NT Detox, which he was on initially, was way too strong, so he's adding in one supplement at a time when he's sure it's not making his symptoms worse.
Right now, it's just lemon juice, A-S Gold, and 1 Alamax a day. And we're planning a trip to a sauna.
We saw the doc the day before the show aired, so those additional 80 hadn't called yet. People are complex. And I think it's appropriate for our responses to be complex too.
But we're all human, and most of us are not at our best when overwhelmingly busy. Rest assured that we agree about his extraordinary knowledge, and are keeping open minds.
Posts: 431 | From New England | Registered: Dec 2011
| IP: Logged |
Sammi
Frequent Contributor (1K+ posts)
Member # 110
posted
Slow is better. I am also very sensitive to BW Formulas. I hope that R continues to improve. He is very lucky to have your support!
Posts: 4681 | Registered: Oct 2000
| IP: Logged |
posted
Thanks, Sammi. I'm lucky to have his support too.
We're both getting used to the shaking and chorea movement now, especially since it calms down with Ativan. Although we hope it goes away soon, it's stopped feeling like a huge awful scary symptom--to me at least.
We were out for a short walk in our favorite park this afternoon and ran into one of my colleagues. It wasn't a big deal that R was shaking. People we know should be able to handle a little shaking and arm waving anyway.
Posts: 431 | From New England | Registered: Dec 2011
| IP: Logged |
lax mom
Frequent Contributor (1K+ posts)
Member # 38743
posted
I know what you mean: "I'm lucky to have his support too".
I'm glad you like the NP. He definitely IS someone who will call you back during a crisis.
I hope R starts getting better and better. He is in good hands.
The Lyme Disease Network is a non-profit organization funded by individual donations. If you would like to support the Network and the LymeNet system of Web services, please send your donations to:
The
Lyme Disease Network of New Jersey 907 Pebble Creek Court,
Pennington,
NJ08534USA http://www.lymenet.org/
UBBFriend: Email this page to someone!
![[group hug]](graemlins/grouphug.gif)
praying for you
![[Smile]](smile.gif)
Printer-friendly view of this topic