posted
Hi all, some of you LymeNet old timers may remember me as "Kenny from PA" from around 2005-2006 timeframe. My story: After having been bitten and developing facial palsey in 1990, I was treated with IV Abx for 2-3 weeks, Lyme most likely not cured, but held at bay.
I was reinfected for certain in 1995, 1997, 1998, 2000 and the rash or other "fresh presentation" symptoms with swollen joints, and more traditional Lyme stuff (if there is such a thing). Around 2005 I had a classic ALS-like presentation of Lyme with all of the usual toppings of roving joint pains, tinitis, reflux, severe global and localized muscle twitching, cramping, some mild muscle atrophy, insomnia, anxiety attacks, balance problems, wierd vision prolems (undetectable by the eye doctor), chronic sinus infections, etc.
You name it, I had it. It also had a propensity for focusing presention on my entire right side (my dominant side), almost like a line was drawn down my middle. It was never exclusive there, but the brunt of ALS/Neurosymtpoms would present there.
Went through two separate visits to the Neurologist, pre and post a 90 day Rocsphin infusion, and cam away with two negative EMG's and a normal workup, in spite of some mild muscle wasting and the like.
My symptoms, or at least the really bad ones, subided and I layed of of the board (as I was becoming a bit obsessive in hanging out on here) and went on with my life, assuming I was on teh road to recovery.
Over the past 5-6 years I have been treated off and on for continuation of these symptoms but they seemed to be at bay after another 30 days of IV and steady orals about a year and a half ago.
Fast forward to May 2010 where I was bitten several times over a week (gardening, a love I apparently have to give up, the litlle bastaards seem to be drawn to my pheremones). Had a bad reaction to teh one, and went for a prophylactic dose of Abx. Got a month and moved on. Started back to the LLMD in late summer as symptoms started to progress again, mostly joint pain, muscle twitching and some mild atrophy (again).
Now, fresh into 2011 I am back in the hot seat. I went to see the LLMD after christmas complaining of a slight increase in the divot in my thigh muscle and a general sense of being off on my right side again acompanied with roving joint pains (pretty bad ones) in my right and left wrists, left foot, left shoulder and more fun stuff.
He started me on Doxy 100,g twice/day while he sent me off to the Neuro to rule out ALS (again) so he can try to get the Insurance company to cover me for IV thereapy. And presumeably he wanted to ensure we were not dealing with something purely neuro, saying it would be a disservice to me.
I am still active, riding my mountain bike, chasing my kids, going to work every day, splitting wood, running with the family and living life, but things are getting scary again. I started what I presume was an immediate herx and major flare-up of all things lyme, including the anxiety (partially related to the fear of ALS). But lots of other stuff, joint pain in my right hip, left shoulder, right hand, either foot, broad twitching coming and going, tinitis, etc...
LLMD's slantings aside, he has helped me with IV treatments in teh past, and I plan to see if we can pull that off again. If not I will return to anohter LLMD I have seen in teh area ASAP and seek thier assistance (may do both but the other is VERY expensive and we simply cannot afford it).
So, sorry for the novel. but I wanted to paint a clear picture for your perspective (and I know we all have a unique one with this crappy disease) and I am seeking any advice and solace you might be able to share with me at this stressful and scary time. I have some pretty good divots in my right quad and some minor ones in my right calf and right triceps. Not major weakness, but some weakness is coming on in the right leg and my whole right side seems off a bit. Again, still fully functional but on major "alert".
Can any of you share stories of success with actual muscle wasting, any stories of lopsided presentation, major ALS presentations, and of course, in particular, I would love to hears stories of success in treatment and details of what you have taken, done, eaten, etc to beat this.
I am doing everything I can and want to ensure this does not go any further south. The sheer fact that I am still here after a 5-6 year ALS like presentation and still walking, talking, riding, working etc is very positive. However, my newest presentation seems pretty aggressive and I am worried sick, driving my wife nuts and doing my best to find a path back. Trying to take into account the herx & timing of that as well. WOuld love any thoughts of how to beat that and the anxiety too.
Thanks in advance for any feedback you might have, and thanks for taking teh time to read my story (the super condensed version).
-------------------- Battling Lyme off and on for 21 years in one form or anohter, mostly neuro... Posts: 13 | From Philly suburbs | Registered: Jan 2011
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posted
PS: I am not currently being treated for any co-infections but have been in teh past. I plan to take that up with my guy next week, as I know they can severly complicate presentations and symptoms.
-------------------- Battling Lyme off and on for 21 years in one form or anohter, mostly neuro... Posts: 13 | From Philly suburbs | Registered: Jan 2011
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posted
PSS: The rest of this stuff I can certainly live with. However, it is the muscle wasting that I must find a way to both defeat, and to recover from. Once again, it has not stopped me from doing anything yet, and hopefully I can get on IV Abx ASAP and put it on hold and try to recover. But I would GREATLY appreciate any insight, from a treatment protocol, to exercise approach, to Dr suggestions that can help me right the ship. Seeing both the LLMD and the Neuro next week and that, if nothing else, will set things in motion again. Kind regards...
-------------------- Battling Lyme off and on for 21 years in one form or anohter, mostly neuro... Posts: 13 | From Philly suburbs | Registered: Jan 2011
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sixgoofykids
Honored Contributor (10K+ posts)
Member # 11141
posted
The anxiety made me think of KPU. You might look at the KPU threads and see if it resonates with you. Dr. K has found it in 80% of his Lyme patients. He believes either mold exposure or KPU is a cause of Lyme becoming a chronic problem.
I kind of wonder how many of our symptoms actually come from deficiencies the Lyme causes. Your symptom list reads a lot like lists of anemia and vitamin C deficiencies (I've been reading them recently because of my own anemia, so those are the ones that come to mind).
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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GiGi
Frequent Contributor (5K+ posts)
Member # 259
posted
Lowering the body burden is prime if you want to get well.
posted
Thanks so much sixgoofykids and GiGi. I will look into these. Kind regards...
-------------------- Battling Lyme off and on for 21 years in one form or anohter, mostly neuro... Posts: 13 | From Philly suburbs | Registered: Jan 2011
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posted
You might want to search the archives for ALS, because this has been discussed many times before. Dr. M had the most of these lyme patients and found that aggressive treatment helped some, made some worse faster. So, he started everyone on low doses and worked up until it became apparent which group you fell into.
Apparently it is an inflammation problem that makes some people worse faster with the ALS presentation of lyme. Why that does not affect everyone with these symptoms is unknown.
So, although I can't offer you a success story, I can suggest that you might keep a lookout for this kind of result. If the herx increases the muscle wasting, then you will have to back off on the dosage of meds. If it doesn't then you are in good shape and just need to clobber the ketes.
** edited to remove doctor's name, please see terms of use **
[ 01-19-2011, 09:31 AM: Message edited by: sixgoofykids ]
Posts: 8430 | From Not available | Registered: Oct 2000
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posted
Thanks Lou. I remember exchanging messages with you back when I first presented these symptoms. Glad to see you are still here fighting the good fight and providing advice to those in need.
I don't have an ALS diagnosis (5-6 years ago the neuro said it was BCFS - Benign Cramp Fasciculation Syndrome) and I most likely will not come away with one next week in spite of the muscle troubles, although you never know. If I do I think it will be a stretch for them.
The trip to the neuro seems to be the Ducky underside of my LLMD covering his feathers. May be time to find a new one in SE PA. We'll see though, as he has helped me out twice with IV treatments, each of which led to a healthy remission.
I have done a good deal of research on here and elsewhere but will of course continue. Can't say just yet if the herxing makes the muscle wasting worse, as my rate of wastng is rather slow and over a long period of time but is starting to show more significantly , which is very worrisome & my main concern besides the associated weakness which is not major, but is noticeable at times.
I did herx like he!! last week when I went back on the Doxy though, which made me feel much worse on all fronts. I just have to suffer through this next neuro exam and get back to my LLMD, figure out how to pay for treatment and move on. The good news for me I think, is that it has taken 5-6 years for the symptoms to progress as far as ALS would in about 6 months to a year. So as long as I can get the right treatment regimen dialed in I should be here to see my kids through college. Still, looking for any help I can get, any protocols that are actually productive in this type of presentation, research suggestions, etc. So thanks for your post.
-------------------- Battling Lyme off and on for 21 years in one form or anohter, mostly neuro... Posts: 13 | From Philly suburbs | Registered: Jan 2011
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posted
I have had all the symptoms you describe, going back about as long. I have never been told it might be ALS, nor did I ever worry that it was....until now, after reading your post. I got the Lyme diagnosis 2 1/2 years ago, and have been treating since then.
Before diagnosis and treatment I would have episodes of weakness in an arm or leg that would resolve on their own with p/t. I was told it was all osteoarthritis.
In my case, many of my leg symptoms were caused by central spinal stenosis. Cramping and twitching were so severe I had to sleep in a sitting position. The central canal was completely blocked. I believe borrelia infection is what caused this. Likewise, I have severe spinal degeneration overall, same with shoulders. Have had total shoulder replacement. Again, I blame the keets for eating all my cartilage!
I had spinal decompression surgery (without fusion) to open up the spinal canal, and this relieved alot of the leg symptoms. Of course when I herx, they do return but not as bad.
You might want to get an MRI to see if you have central stenosis. In my case it was a follow=up myelogram which really showed the blockage and the urgent need for surgery.
I myself have made good progress doing strength training at the gym, no cardio for me. Funny, I can do leg presses with 170 lbs doing one leg at a time, but standing up from a crouching position can still be a b***h for me.
I have not done IV abx yet, but I think it may be in my future at some point. Let's hope that ALS in not in my future, or yours!
-------------------- 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
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posted
paulieinct, that was not teh intent of my post. I was just looking for an uplifting story and some treatment regimen/detox tips. As to you, I'm not a medical professional, but I think you've got nothing to worry about with respect to ALS. If you've made any progress with strength training then you do not have ALS. As I understand it, ALS patients never make progress.
As to me, although I am concerned and scared of receiveing an ALS diagnosis, it is not likely. It is more likely I'll get some "unknown neuro-muscular disease" type thing, especially due to teh slow rate of progression. Even if I did get one, I would continue on my Lyme treatment course, as my situation has clearly been caused by Lyme Disease. I also had a near complete remission of my major neuro symptoms after the 90 day round of IV Rocephin therapy I had 5-ish years ago. The challenge is that I was actualy re-infected multiple times since then, including May/June of last year which is why I believe my symptoms are freaking out again.
The year before I was also reinfected and did 30 days of IV Rocephin with another near complete remission, but the insurance company cut me off at 30 days and I ran out of cash at teh time, or I might not be here agin now.
To look at me you would not even know I am sick, like most Lymies, but we all know how that feels. This time I will findf a way to pay for 90- 180 days of IV as I have a family with two young daughters that need their dad so I aim to get well.
The bottom line is that I will fight this as Lyme because that is what it is. I turn to the kind folks at this forum for some support during tougher times, and to date, they have been very supportive and helpful. Peace...
-------------------- Battling Lyme off and on for 21 years in one form or anohter, mostly neuro... Posts: 13 | From Philly suburbs | Registered: Jan 2011
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