posted
Please share if you or any one you know with Lyme and Co has had this symptom. A young friend has had this for many weeks now and needs some help.
Thank you everyone!
Posts: 118 | From Here | Registered: Sep 2008
| IP: Logged |
lymeladyinNY
Frequent Contributor (1K+ posts)
Member # 10235
posted
Yes, I used to have this and occasionally still do. I remember it was worse back when I needed a wheelchair a lot. I went to a concert and couldn't clap as I sat in my wheelchair. I think what helped me the most with this symptom was IV antibiotics. IV finally got me walking again and I no longer had tightly clenched hands. Orals didn't do it. I hope this info helps!
-------------------- I want to be free Posts: 1170 | From Endicott, NY | Registered: Sep 2006
| IP: Logged |
posted
Yes, I have this. My hands will stiffen and sometimes close into a fist, usually when I'm sleeping or napping, and will have to pry my fingers open. This was the symptom that told me three years ago that something was really wrong. My PCP was clueless. I did my own research and realized I had Lyme.
I confronted my PCP, TOLD him I had Lyme, demanded to be treated with antibiotics. He said, "Know what? I think you do have Lyme." He was too scared to treat it himself, wanted to send me to Yale, that bastion of Lyme denial. No thanks.
-------------------- Sick since at least age 6, now 67. Decades of misdiagnosis. Numerous arthritic, neuro, psych, vision, cardiac symptoms. Been treating for 7 years, incl 8 mos on IV. Bart was missed so now treating that. Posts: 765 | From nw ct | Registered: Sep 2008
| IP: Logged |
momlyme
Frequent Contributor (1K+ posts)
Member # 27775
posted
I started having this clenched hand(left hand only) when I was 23. I was diagnosed with chronic reactive arthritis.
It mostly happens at night. I wake up with my hand in a fist. Very difficult to open.
I was treated with ultrasound and cortisone shots for a while. Then, when I refused the cortisone shots (because I read that long term use can cause blindness)... they put me on arthritis medicine and pain killers. Nothing the doctors gave me seemed to help.
I went back to college for nutrition and chemistry and started experimenting with different herbs and supplements. The thing that worked for me is grapeseed extract. It has to be high quality in order not to need high quantity. I have been taking this daily for 15+ years.
-------------------- May health be with you!
Toxic mold was suppressing our immune systems, causing extreme pain, brain fog and magnifying symptoms. Four days after moving out, the healing began. Posts: 2007 | From NY/VT Border | Registered: Aug 2010
| IP: Logged |
chiquita incognita
Unregistered
posted
Hi Heather Was it grapeseed or grapefruit seed extract? That is interesting information, thank you!
Actually the grapeseed extract does make sense, it' s high in flavonoids which can combat many bugs.
My LLMD said this was attributable to Bartonella in my case.
I have done only herbs so far, with good success. After six months, no more waking up with fingers curled into the palm of my hands. they do fall asleep, but don't curl up anymore. So there's more to got, but lots of good progress so far.
At my LLMD's suggestion, I have taken Bar 1 by Healthy Directions, Inc in Rohnert Park, CA it's expensive but it works. Herx's were minimal but progress was good.
My LLMD also said that resveratrol (from red grape skin extract) targets bartonella. It also protects the liver but that is mainstream news, of course.
I only did one round of abx so far and suffered miserably. But I have a very sensitive constitution and for myself, I am inclined to go back onto hte herbs and avoid the abx for a while. My LLMD said he thinks we need to "go deeper" with the abx but then again I have read naturopaths on the web who have seen lyme patients get well with herbs alone. Opinions vary and I figure the proof is in the pudding: Progress is key. If I don't make the desired progress then we can talk again about abx, later on. That's what I figure, but that's just for me and I can't advise anybody else.
IP: Logged |
momlyme
Frequent Contributor (1K+ posts)
Member # 27775
quote:About the "Claw hands": My LLMD is very well known FYI and he knows *all* about the coinfections without any need to test for them individually. He said the tests for these are even more inaccurate than the lyme tests and that to diagnose by symptoms/history is best. Anyway, he said that this is one of the bartonella symptoms, for anybody else who can benefit from knowing about that.
****I would love to know if others believe this symptom is Bartonella.
-------------------- May health be with you!
Toxic mold was suppressing our immune systems, causing extreme pain, brain fog and magnifying symptoms. Four days after moving out, the healing began. Posts: 2007 | From NY/VT Border | Registered: Aug 2010
| IP: Logged |
momlyme
Frequent Contributor (1K+ posts)
Member # 27775
posted
chiquita - I should have refreshed before I posted. I was searching for the thread where you mentioned that this symptom is bartonella!!
I take grapeseed extract (not grapefruit)
I have muscle tested for the Bar-1 and I do not test strong for it. I have considered trying it anyway. My son and dog are both having great success with Bar-1!
-------------------- May health be with you!
Toxic mold was suppressing our immune systems, causing extreme pain, brain fog and magnifying symptoms. Four days after moving out, the healing began. Posts: 2007 | From NY/VT Border | Registered: Aug 2010
| IP: Logged |
sammy
Frequent Contributor (5K+ posts)
Member # 13952
posted
My hands used to freeze up in unusual positions. They would look swollen and feel painfully cold. The pain would actually wake me up at night. When that happened I would be unable to move the hand. If I touched that hand it would feel icy cold on my normal body parts. I could not sense anything touching it. It was like my had been cut off and replaced with a block of ice, what I thought I felt was really a burning phantom pain.
This got progressively worse waking me multiple times per night and taking longer to return to normal. I would vigorously rub the frozen hand with my normal hand until it felt better. No one told me to do this, it was just instinct because I was sleepy and in pain.
This frozen hand symptom got better and went away completely after my first couple months of Rocephin. For me this was most likely a Lyme symptom.
I don't think that you can tell for certain what symptom is caused by what infection just by looking at a list. Many of our symptoms can overlap and be caused by multiple infections. Sometimes you have to treat with different medicines to find one that works for your symptom set.
Posts: 5237 | From here | Registered: Nov 2007
| IP: Logged |
posted
I believe this symptom is caused by borrelia, because its onset was preceded in my case by "trigger-finger", first in the middle finger and then in other fingers. I found a case study online of a Lyme patient with trigger-finger who had surgery for it. They looked at her finger tendons under a microscope and found the tendons riddled with spirochetes.
-------------------- Sick since at least age 6, now 67. Decades of misdiagnosis. Numerous arthritic, neuro, psych, vision, cardiac symptoms. Been treating for 7 years, incl 8 mos on IV. Bart was missed so now treating that. Posts: 765 | From nw ct | Registered: Sep 2008
| IP: Logged |
-------------------- Sick since at least age 6, now 67. Decades of misdiagnosis. Numerous arthritic, neuro, psych, vision, cardiac symptoms. Been treating for 7 years, incl 8 mos on IV. Bart was missed so now treating that. Posts: 765 | From nw ct | Registered: Sep 2008
| IP: Logged |
chiquita incognita
Unregistered
posted
Hi Heather Thanks for the info about the grapeseed extract! Cool indeed that it is helping you. As for muscle testing, I don't think it' s always accurate, even if at times it can be an indicator I wouldn't fully rely on it.
Regarding the bartonella symptom: I fully trust my doc, he is really superb and very sharp. For the rest, I can't answer the question more fully about whether or not this is bartonella, but can only say that the symptoms have been improved since using bartonella-targeting herbs.
My husband dx Lyme/MS in early Nov 2010 also has had this clenched fist syndrome, although his started with tingling and numbness. (In his case it's alittle hard to dx symptoms cause he had clinical onset of MS at that time too) another nightmare!! any way....
Got thru 1st tx with 2/3/4 grams of Rocephine for 6 weeks. Hand has lessened in rigidity/clenched reaction and also is now able to write!! )
Had same type of thing as Sammy described, he says as if his hand does not belong to his body/lack of sensation and coldness! But seems to have eased alittle bit.
Chiquita, I would be curious to know what Bart herbs have been working for you??? sounds positive!
Sammy- how long were you doing Roc? our doc wants my husband to do another 6 week round at 5 grams per shot/IV? Kind of worried if this dose is normal,!!!??
thanks for the light Lyme friends!!
Clueless
-------------------- Change is inevitable Posts: 77 | From France | Registered: Jan 2011
| IP: Logged |
chiquita incognita
Unregistered
posted
Hi Clueless Love the name! THat's hilarious, thanks for the humah!! :-)
The herbs are the Bar 1 product (for bartonella) by Healthy Directions in Rohnert Park, CA 1-800-332-7713. They also have a detoxifying formula called Tox-Ease however it didn't work as well for me as other things I have done. Still, my LLMD (who is really tops) says he thinks they are "the best formulated we have seen in our office for lyme". They have other products targeted to specific bugs but I do not know them.
I hope this helps! :-) Healthy and happy healing to your husband and you too on the inward plane as you go through this journey together.
IP: Logged |
Jane2904
Frequent Contributor (1K+ posts)
Member # 15917
posted
our daughter has lack of sensation and coldness in her hands too.
I am not sure what infection is to blame.
Posts: 1357 | From Massachusetts | Registered: Jun 2008
| IP: Logged |
posted
My daughter had clinched fists for a while. After starting IV treatment, this symptom went away. It was a really scary symptom for her.....AND me!
Posts: 677 | From Virginia | Registered: Sep 2002
| IP: Logged |
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!
![[Wink]](wink.gif)
)
Printer-friendly view of this topic