posted
I have a 12-year old niece who began having left sided weakness 10 months ago. She has very, very limited movement of her left side now. 3 months ago, she began losing her right side. She now is confined to a hospital bed with the assistance of oxygen. She is conscious and can talk, but we wonder if she does actually have Lyme's disease. One band (I think the 18)showed to be positive, but the others were negative. She has had symptoms though for 10 months. My question is, has anyone else experienced this kind of 'paralysis'? We don't think it is tick paralysis, because we've been told once the tick is removed, the paralysis ceases. Does anyone have any stories of someone they know went through this kind of sequence of paralysis? Thanks you.
posted
I know a woman whose lyme manifested itself as paralysis, not tick paralysis which is different.
Where was the lyme test done?
The problem is that even at the best labs, tests are not entirely diagnostic (for reasons explained in the newby links). What that means is that it is a clinical diagnosis (based on symptoms and history). Meanwhile there is a lot of variability in symptoms and most doctors don't know enough to diagnose clinically.
So, you have to go to a specialist in tickborne diseases. This should be someone recommended by support groups or the patient community. I am not saying this child has lyme disease (maybe plus co-infections), but a specialist in tickborne diseases is in the best position to evaluate such a case.
Posts: 8430 | From Not available | Registered: Oct 2000
| IP: Logged |
Andie333
Frequent Contributor (1K+ posts)
Member # 7370
posted
Mike,
I'm really sorry to hear about your niece. The situation is so sad, and it's got to be really scary for all of you.
I've got first-hand experience with paralysis. I'd been chasing some nasty symptoms for several years before I found a good LLMD, got a Lyme test (strong positive) and started taking antibiotics. That was this past June.
I'd also joined this board and knew from reading here to be on the lookout for any herx reaction from the antibiotics. I didn't expect what happened, though: 28 days after I started treatment, I experienced exactly what you described with your niece.
Although I could think and talk, I couldn't move any part of my body. My SO called 911, and I was taken to the ER. There, we got my LLMD patched in with the ER doc. I was given something via IV and ultimately it all relaxed. In all, the paralysis lasted about 5 hours.
About a month later, the same exact thing happened, with the same duration of symptoms.
I haven't had any recurrence of this, though I occasionally feel weak. I was also getting a tight banding feeling aorund my ankles and wrists, though that hsa significantly improved since I started treating previously undiagnoxed Bartonella with a second antibiotic.
When I read your post, I had some of the same concerns Lou voiced: Is your niece under the care of a Lyme-literate doctor (ie someone recommended by one of the Lyme organizations)? And, as Lou asked, where was the testing done?
You can find out other instances of paralysis by doing a search on the boards for either paralysis or paralyzed.
Again, I'm so sorry to hear about this. If your niece isn't seeing a Lyme literate doctor, I hope you'll try to find one in your area and get her there asap.
Andie
Posts: 2549 | From never never land | Registered: May 2005
| IP: Logged |
Worthless tests & labs, a dangerous vaccine, insurance companies refuse to pay, undertreatment the norm, all about money. MO. Posts: 281 | From CT | Registered: Oct 2005
| IP: Logged |
posted
Thank you all for your responses. My niece, Alex, is being followed by Dr. Charles Ray Jones. We're worried that the WEstern Blot came back with only "one" band positive. The RBb test was also positive. We haven't figured out the coinfections yet, but reading about Dr. Jones, we feel pretty comfortable with him. She now is taking Rocephin (2g/day)and Glutathione (1g/day)by IV. We're unsure if another antibiotic should be used. My main concern was if anyone knew of another case like this- where left-sided weakness led to paralysis on that side...and then the same on the right side. Mike
Posts: 252 | From Iowa | Registered: Mar 2006
| IP: Logged |
posted
Sounds like you are in good hands. Will keep our fingers crossed for her. Tell her a lot of people are thinking about her and wishing a good response to the medications.
Posts: 8430 | From Not available | Registered: Oct 2000
| IP: Logged |
NP40
Frequent Contributor (1K+ posts)
Member # 6711
posted
Mike, I've known more than a few who've experienced paralysis due to lyme. I know one man who was nearly commited to a nursing home because they thought he had alzheimer's.
I know of a lady who was confined to a wheelchair because they thought she had MS, but after a year of abx she could walk again. If Dr. J is looking out for your niece, she's in very good hands.
Posts: 1632 | From Northern Wisconsin | Registered: Jan 2005
| IP: Logged |
-------------------- **Eat Chocolate** Posts: 942 | From USA | Registered: Mar 2005
| IP: Logged |
Marnie
Frequent Contributor (5K+ posts)
Member # 773
posted
There is a one sided-electrolyte connection. From old files of mine:
One sided symptoms
"Trace mineral symptoms of excess or deficiency are generally one-sided, depending on their ratios to
other chemical members, and depending which group they are neurologically assigned to. In the event
of calcification, it is not a high calcium level that results in the formation of a stone or spur, but calcium
being high in ratio to associated or interactive elements.
For instance, phosphorus and zinc have both left-sided cell receptors, so if either level is low in ratio to
calcium, calcification would only take place on the left side of the body, whereas the cell receptors of
manganese or magnesium are right-sided, as a result, any calcification would develop on the right side
of the body only.
The same rules apply to most nutrition-related inflammatory or degenerative conditions, so successful,
non-symptomatic treatments require the application of those same principles. Since intracellular and serum levels of nutrients represent different physiological and pathological processes, abnormal levels
seen in one medium are not necessarily reflected in the other, so they need to be interpreted differently." http://www.acu-cell.com/sni.html
Zinc appears to be much effected by lyme too. However, one has to be very careful not to OD this. The right amt. boosts the immune, too much depresses the immune!!!
In her case...she has, as a young person, higher levels of Mg than a "grown-up". It looks like it may have indicated first a phosphorus drop and then a Mg drop.
Rocephin is the RIGHT abx. "H16" issues. Then restore the nutrient balances. Glutathione as a powerful antioxidant...WONDERFUL!
Posts: 9424 | From Sunshine State | Registered: Mar 2001
| IP: Logged |
Marnie
Frequent Contributor (5K+ posts)
Member # 773
posted
A key factor in proper brain and nerve transmissions is the presence of cellular substance called acetylcholine.
Acetylcholine deficiencies are linked with the neurological disorders tardive dyskinesia (involuntary facial grimaces and body jerking), Huntington's chorea. Friedrich's ataxia (speech impairment, irregular movements,
and paralysis),
olivaponto-cerebellasatrophy (wasting away of the brain), Alzhemer's disease (a mind destroying disease that starts with memoiy difficulties), and myasthenia gravis
(progressive paralysis).
(My note: Myasthenia Gravis is caused by too little calcium, the opposite of too little Mg. But...we can't hang onto Ca if Mg drops too far...ultimately).
An unexpected discovery by researchers at The National Institutes of Health (NIH), may help to explain how Alzheimer's disease causes memory loss.
The research shows that beta amyloid, a common protein in the brain, can make cell membranes leak choline, and thus reduce production of acetylcholine in cells.
Choline, an essential ingredient in acetylcholine, has been known for many years to help store and retrieve memories. Two hallmarks of Alzheimer's disease are accumulation in the brain of beta amyloid and reduction of the concentration of acetylcholine.
In Alzheimer's disease, as well as in older subjects with Down syndrome, the brain cells which produce acetylcholine are known to die.
A signal is transmitted from the brain to the end of the nerve attached to the muscle which it wishes to contract. There is a small space between the end of the nerve and the muscle and it is across this neuromuscular space that the nerve pushes small quantities of a chemical called acetylcholine.
When sufficient acetylcholine attaches to the outer surface of the muscle cell, the muscle cell becomes excited and contracts. Should you run out of acetylcholine then the muscles will not be able to contract, even if they are adequately stocked with energy (ATP).
So what does she need? Read the post about the latest Alzheimer's research...my reply today 3/13/06
Posts: 9424 | From Sunshine State | Registered: Mar 2001
| 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!
Printer-friendly view of this topic