posted
My now 13-year old niece has been diagnosed with motor-neuron disease, or ALS by several medical entities. We believe that she has chronic neuroborreliosis + babesia which triggered a latent Chlamydia pneumoniae. [Her WB was negative by IGeneX standards, but there was evidence that "something" was there and her QRIBb test was the highest; 1:128]. She has been on IV-Rocephin for 9 months and was on Levaquin for about 5 months for possibly Mycoplasma pneumoniae. Since being under the care of a wonderful LLMD in Colorado, we switched to IV-Zithromax and discontinued the Levaquin. Evidently, the Zith is more effective than Levaquin against Chlamydia pneumoniae and Mycoplasma pneumoniae. The doctor believes there is some cross-reactivity between the Cpn and the Mpn. Currently, she is almost totally paralyzed; she does have some trace movements in her arms and legs. She has been speaking and swallowing fine since she was ventilated in March, but interestingly enough, since beginning the IV-Zith. she has had a ton of mucous/secretions in her nose and throat- which we believe is a mild herx. reaction and causing her swallowing and speaking problems. We just started Flagyl a week ago. I'm curious if anyone has personally gotten to this point or known anyone that has gotten to this point, and if so, what is prognosis?
I realize it will take a great deal of time, but is there hope for somewhat of a recovery?
Although the doctor's office hasn't come out and said it clearly, but I kind of get the impression they think her prognosis is limited.
Knowing what I know and sifting through all the research, I have hope that she will once again walk someday and get off the vent., but I feel she will be somewhat disabled.
posted
Lyme disease has been documented to cause ALS-like symptoms, including motor neuron disease. If you want the citation, I will dig it up.
Also, you might want to google ALS +lyme to see what you get, and have a look at www.lymeinfo.net for related material. And look in the lymenet archives for earlier ALS posts.
There have been several newspaper articles about ALS-diagnosed patients who were treated for lyme and greatly improved. However, there is a mixed record in this, not everyone is saved. Don't know what the difference is. This is an area that desperately needs more research. And you may have heard that a clinical trial funded by NIH is underway to use rocephin in treating ALS.
My feeling is that there are multiple causes to nervous system disease, and that is why the lyme treatment sometimes works and sometimes doesn't. It may even be that multiple infectious agents are at work in the same patient, as in your niece. Can't say anything about her prognosis. It depends so much on getting the right treatment for her own individual case, the characteristics of which may not be shared with others who have the ALS diagnosis. A case with multiple infections is a very hard thing to treat, with not a lot of research and publishing to lean on.
Posts: 8430 | From Not available | Registered: Oct 2000
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I will be seeing this doc next month. I figure who better to treat Lyme than one that has it himself. And this one was dx with ALS.
Hope this helps.
-------------------- Sick and Tired of Being Sick and Tired Posts: 185 | From Colorado | Registered: Sep 2006
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CaliforniaLyme
Frequent Contributor (5K+ posts)
Member # 7136
posted
Locally we had a boy diagnosed Juvenile ALS who got out of his wheelchair but like me never got 100% (I am 99.9%) but about 90!
Repost- Kari Mayne's Story- Kari Mayne
I contracted Lyme in February of 1988 - thirteen years ago. I was not diagnosed with lyme until August 1999, after being sick for 11 years (and having a stillborn child - lyme of course.) Before I was finally diagnosed with lyme I exhibited all the classic ALS symptoms, and had lost an uncle to ALS. Thus - the doctors thought they had an ALS diagnosis nailed down tight. Only through my stubborness and refusal to accept the ALS dx did I research the internet and find an llmd. My first visit, even without labs, the doc - God bless him - said I had the worst case of lyme he had ever seen at that time. Subsequent lab tests ELISA and Western Blot both positive.
The symptoms which are now COMPLETELY GONE are: no more severe muscle cramps no more fasciculations no more numbness in face/tongue/forehead I can swallow without difficulty now no more slurring of speech no more limping and severe weakness in legs no more ringing of ears no more confusion/memory loss/lyme fog/depression no more debilitating fatigue I can now pick up pennies off the floor - fine motor skills are back in hands I can lift my eyebrows now I don't choke on liquids Bright light doesn't hurt my eyes anymore Reynaud's syndrome is better No more intense heel/bottom of foot pain No more TMJ or tooth pain No more running into walls, doors because of poor balance or legs "giving out from under me" I can drive without getting lost No more hallucinations I can count to 10 I can raise my arms to shampoo my hair No more pain in joints or numbness in limbs
Of course, there's more symptoms...but you all know what they are. These were just the ones that plagued me most. Everyone, of course, responds differently to medication and recovers at different rates. But, I have no doubt that all of you will get better over time. Probably the thing that helped me most is the Bicillin shots. Behaviorally, plenty of REST and the determination that I would not identify myself as a "sick" person kept my attitude positive and my spirits up even when my body argued the opposite. I have lyme, lyme doesn't have me kind of thinking.
I see a great spirit of helpfullness and positive thinking in these emails which makes me want to respond. In various lyme chats and online discussion I have sometimes encountered "poor me" kinds of attitudes. NOT IN THIS NEWSLETTER - Renee and Sean you're awesome! I haven't really participated in any support groups or discussions such as this in a while. Since I've gotten better, I don't like to be reminded of my lyme nightmare (even though I am still taking Bicillin shots twice weekly.) But you people are so sharp and caring I felt I needed to tell you a good news story. Bicillin shots have almost cured me. Been taking them a year now...99% of my symptoms are gone. Lyme can be defeated! I started seeing improvement (dramatic) in a couple of months after I started with the Bicillin shots. My doctor was amazed. It's wierd, you sometimes don't notice that you're getting better because THERE ARE SO MANY, MANY THINGS that are hurting or not working right. Then, it will just come to you "Oh, I didn't slur my S's today" or "My left hand doesn't feel as stiff and numb as it did." or "The sun didn't hurt my eyes today." Sometimes it takes awhile to notice because to you the changes seem small, but they all add up. The biggies for Mike - like getting out of bed unassisted - take longer because there are more muscles/nerves/joints/etc. involved in doing them. Each muscle/nerve/joint has to heal (and there are many, many of them) before the motion gets easier. That's a lot of healing. That's why you'll see the small changes first - such as ears stop ringing. Not as much is involved. My response is that Mike is probably improving dramatically, but it may not be in the areas that worry him most.
Regarding the Bicillin shots. Yes, you will find hard lumps at the injection site. There's no way to avoid it. They will eventually get smaller - but not go away. You see, it's scar tissue under there. Every time you get a shot, it damages the tissue. These shots are powerful. You will experience times where it's very difficult to insert the needle because you'll run into a lump of scar tissue built up from continuous injections. It really hurts when this happens. Yes, sometimes I have bicillin leaking back out of the injection site. It doesn't worry me. It's usually because I got active too fast before my body absorbed the Bicillin. Just slap a bandaid on their and wait a couple of minutes before attempting to move.
I sympathize with dilemma re: childcare when you can't get out of bed. My doc told me to put my 2 1/2 year old into daycare last May. This month - we took him out because I am well!
-------------------- There is no wealth but life. -John Ruskin
All truth goes through 3 stages: first it is ridiculed: then it is violently opposed: finally it is accepted as self evident. - Schopenhauer Posts: 5639 | From Aptos CA USA | Registered: Apr 2005
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posted
Mike, I just returned from my 4th visit to Colorado. I had been diagnosed with PLS (upper motor neuron disease) but also tested positive for Lyme. In Jan 2005 Istarted 2mg rocephin and ketek. I did that for 6 months. Then I went off everything. My speech became worse and I started walking with a cane. In Feb 2006 I started Zinacef and zithromax. I started using a walker. In May we went to CO; my protocol is 125 mg rocephin,125 mg zithromax, larium and soon to start flagyl. This last visit My husband and I came away with the same feeling, that we should be thankful I haven't gotten worse but quietly hopeful. We go out next in 4 months; if we don't have any improvement we are wondering if we should stop treatment. I am also sending you a PM. Debbie
Posts: 39 | From NJ | Registered: Nov 2005
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I am so sorry to hear that your niece has experienced this. I too am an AlS/lymie(not as sick as your neice). It's bad enough to have it happen to adults ,but to a 13 year old it sucks .
I don't have much to add except that she is being taken care of by a llmd who I believe can't be beat.That particular llmd also is complemented by some awesome colleagues who also have impeccable credentials/knowledge levels and they all collaborate on cases.
From my prior career I can tell you that if anyone can get off that vent and return to some level of functioning it's a 13 year old compared to us geezers.
I and my family will keep your niece in our most fervent prayers .
Take care and good luck to your niece.
Travlr1
Posts: 66 | From West Coast | Registered: Jul 2006
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I have a gentlemen here at my facility that was misdiagnosed with ALS. He has 40% lung capacity and an almost non functioning diagphram. He was given 5 months to live...
He was Dx with Lyme 3 months ago, started HBOT one month ago and just got back from Colorado too. With a picc line
He's doing better and I am hopeful that he will have a good recovery. To say the least I doubt he will make that 5 month appointment that almost killed his wife...
Blessings to you and your niece.
Julia
-------------------- Please consult your LLMD before making any changes to your treatment regimen. Posts: 641 | From NJ, USA | Registered: Oct 2001
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