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Old 11-23-2012, 02:19 AM #1 (permalink)
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Default Curious about Lyme and symptoms

Hello,

I am nervous posting here, but I promise I think I have read all of the stickies, and hopefully am not wasting anyone's time.

I know you can not diagnose people, and I am hopeful that I do not have ALS as some of my symptoms don't fit at all, however I am getting testing for multiple diseases that might be causing my problems, and I am a little worried about possibilities.

Here is my background : I have always been clumsy, and additionally I had a surgery several years ago that led to severe on-going pain in my abdomen, when has definitely limited my mobility and energy - partly due to pain, and partly due to medication for the pain. I think these two things made me a little slower to see other symptoms until they had progressed pretty significantly.

Between one and two years ago I started having trouble swallowing saliva and would choke sometimes, I also began to have some trouble breathing and was getting very, very fatigued -- I thought this might be due to a medication I was taking, so I went off that medication --- but the trouble breathing and swallowing stayed the same.

Around this time, or maybe a little later, I also was becoming even clumsier and tripping very frequently, dropping things frequently and losing my balance. Over time it got to where I had a very hard time even doing simple things like filing my nails, or opening a can or texting. Everything became very stiff, and very weak. I don't recall exactly the order of things .. but I remember it wasn't "even" between my arms and legs - my left leg is stronger than my right for example. I was feeling weaker and weaker overall -- and began doing things like switching the time I took my shower to when my husband was home, because I was having a hard time not falling down. I was still working full time, helping out with my grandkids etc ... but being able to accomplish less and less and having to really work at things like fastening the car seat buckle, and was unable to do basic things like wash heavy pots and pans or change the laundry and carry it upstairs because I was just too weak.

I'm sorry this is so disjointed and long -- I delayed getting treatment for a long time due to a lot of other things going on in my life, and a general dislike of doctors. I also started having a lot of pain and stiffness and some tremors , primarily in my arms -- these are the symptoms that are unlike ALS. My Primary Care physician ( when I finally went to see him) referred me to a rheumatologist.

Before I could get in to see the rheumotogoist I had a major 'episode' where my legs went out from under me and I have had a really difficult time balancing well enough to walk ever since ( about 3 months ago ). I was having my foot drop out from me, and tremors in my leg and "wobbling" with no sense of balance. I ended up in the hospital where I had clear MRI's and blood tests and basically was told I'm crazy. They did not do a spinal tap or emg's or any of that. My strength tests at a 2 out of 5. I think my reflexes came out as in the normal range. except for one test, but I dont' remember which one. So they sent me home with a perscription for a walker and a wheelchair and said sometimes it can be a reaction to a virus.

Since that time, I have only gotten worse -- I need help to shower, I can walk with a rollator or holding onto the wall, but barely. My shaking/tremor is much worse - it is kind of like an involuntary twisting of my head and neck and arms and also smaller little shakes. It is hard to get my body to move when I tell it to, if that makes sense.
The one that is scaring me the most though is that I am having a very, very hard time eating without choking, and am still having trouble breathing, particularly when lying down. I have switched to just soft foods, and am careful to only eat when I am not particularly "twitchy" or too tired, as that seems to make it worse. I am trying to adapt as much as possible, but it is very difficult. I am basically homebound and unable to do my job or care for my grandchildren and I hate that my kids are helping me, instead of the other way around.. all of this is so difficult emotionally !

My current Doctor is testing for Paraneoplastic Syndrome ( which was mentioned by a Dr. at the hospital ), various viruses and Lyme. He says he thinks I have some sort of Cerebellar Ataxia caused by one of these things. I am somewhat concerned because I think the virus tests are more based on the dramatic loss of balance that landed me in the hospital - but doesn't account for all the symptoms that led up to it, or the progression of symptoms since then.

I am also concerned about the Lyme test, as I've already tested negative twice, and he sent me to Igenex, which I know specializes in Lyme, but also has some very negative feedback.. I really don't want to have a 'fake' positive Lyme result and go through an uneccessary treatment.

Sorry for the long novel, and I'm sure I still managed to leave things out ! Thank you for your patience if you took the time to read this !
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Old 11-23-2012, 07:28 AM #2 (permalink)
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Default re: Curious about Lyme and symptoms

Sorry, I forgot to ask my main question !

I found this site when I was actually searching regarding Lyme disease and noticed that there seemed to be many people on Lyme sites talking about a connection between Lyme and ALS with people being diagnosed with ALS only to discover later that it is actually Lym,e or that everyone with ALS also tests positive for Lyme.

I hadn't thought of ALS as a particular possibility for things that are wrong with me until I was trying to find lists of easy to swallow foods, and ALS kept popping up.

The actual question I have is if anyone knows if it is harmful to be treated for Lyme if it is actually ALS, or is there some benefits from antibiotics prescribed for Lyme overall, in anyone's experience ?
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Old 11-23-2012, 09:03 AM #3 (permalink)
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Default re: Curious about Lyme and symptoms

I am sorry that you are in such a difficult situation.

Lyme sounds like one of your best options. Even if it comes back negative, you will have the mental peace of knowing you tried all of your options. If it is positive, even at a risk of false positive, it would be worth tryign to treat it. Viral tests may also be of some benefit, because a previous condition can be worsened by something like that. I truly hope it isn't paraneoplasty!

I'm glad you have a doc who's willing to to drill into this thing for you, he sounds like a good one. Let us know how it goes, and if you need any practical advice, we're here.
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Old 11-23-2012, 05:00 PM #4 (permalink)
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Default re: Curious about Lyme and symptoms

Hi

It certainly sounds as if you have had a rough time of it, and the uncertainty about what is causing this is an added burden for you.

You may never get a definitive explanation; 'in a minority of cases there is no clear cause why the cerebellum and spinal cord become damaged as is the case with idiopathic late onset cerebellar ataxia (ILOA).' A close family member who is a doctor informs me that 'idiopathic' is doctor-speak for 'we haven't a clue what's causing this'.

On the other hand I personally would prefer that to one of the more unpleasant possible causes, and your doctor is pursuing various possibilities to rule those out. Have you raised your concerns about ALS/MND with your doctors, and if so what did they say?

I appreciate your worry about Lyme but I think you should stop worrying about it; in the end the choice as to whether to take medication is yours. No one is going to force feed you antibiotics...
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Old 11-23-2012, 08:17 PM #5 (permalink)
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Default re: Curious about Lyme and symptoms

Wow. I'm so sorry to hear about the difficult time you've had. Personally, I think the Lyme stuff is a bit over-hyped. There are very few cases where a neuromuscular condition has been linked conclusively to Lyme, but of course anything is possible. Whatever's going on with you, I hope they sort it out for you soon. Even more importantly, are you getting any supportive treatment -- a cpap / bipap to help you breathe at night, speech therapy to learn safe swallowing strategies, etc? That's huge and you should advocate for support for these potentially dangerous symptoms. Best of luck to you
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Old 11-23-2012, 10:54 PM #6 (permalink)
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Default re: Curious about Lyme and symptoms

How are your hands doing? If you are having a Lyme test, make sure its the Western Blot, not the Elisa, which is unreliable.
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Old 11-23-2012, 11:52 PM #7 (permalink)
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Default re: Curious about Lyme and symptoms

Thank you for the responses !
Grateful -- I had tried to do a follow-up post, but it went to moderation -- I haven't said anything to my Doctor about ALS yet, I stumbled across the ALS symptoms while looking for easy to swallow/soft foods , and then I saw the similarities ( and the differences ) to what I am experiencing. I will have a Dr. Appointment to get my test results shortly - and was wondering if people had any feedback on antibiotic use, Lyme diagnosis etc... as I saw that many people seem to be diagnosed with both ? And I am concerned about this particular lab, but if the antibiotics can't hurt, and the test comes back positive - it seems worth a try. I know no one can force me to take them, I'm just looking for some experiences to weigh when deciding options.

I am definitely hoping for something treatable - and hopefully something that I at least know what degree of disability might remain, how long to treat, etc.. it has been very difficult to know what to do regarding my job, finances etc...I can do very minimal work online from home right now, but even that is becoming very challenging, and not really something I can do long term.

Helen- My hands, particularly my left hand, are very weak and stiff ..and I guess uncoordinated is the best term..it is very hard to type correctly, and that is what I have to do for work. They also tend to kind of cramp and spasm ( sorry, not sure if those are the right terms ) and sometime tremble. This has been going on for awhile - maybe a year or so.

I have had two negative Elisa tests ( I live in a very Lyme endemic area ) so my Doctor is sending to Igenex Lab that specializes in Lyme for I think the Western Blot... which is something i have mixed feelings about - if the lab does a great job detecting Lyme when others dont'= great ! But if they have too many false positives and suggest long term antibiotics that aren't needed - one I can't afford it, and two I'm worried about wasting time /energy / having side effects if it's something else.

Thanks for the feedback ! I really appreciate it !
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Old 11-24-2012, 06:49 AM #8 (permalink)
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Default re: Curious about Lyme and symptoms

As far as I know, there's no harm to be treated for Lyme in your situation - no other possibility reacts poorly to antibiotics.

I don't know what kind of work you do, but there are a variety of typing aids, both hardware and software, out there for those of use with poor hand use. Are you filling in forms, typing in prose, what kind of typing does your work require?
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Old 11-24-2012, 06:52 AM #9 (permalink)
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Default re: Curious about Lyme and symptoms

Hi again

Obviously your next step must be to ask your doctors about the possibility of ALS/MND, bearing in mind your swallowing difficulties, but usually people start having problems with fluids rather than solids so that is a hopeful aspect.

I entirely agree with Luke's suggestion that you need to get whatever help's going with your breathing problems etc and like him I think the Lyme's thing is over hyped. Unfortunately there are unscrupulous people hoping to make money out of people's very natural fears though I am sure that your doctor is not one of them since he is checking the range of possibilities.

But antibiotics can do a great deal of damage so the doctor prescribing them must weigh the possible benefits against the possible harms; this rather important fact tends to be overlooked by Lymes spammers.

Please let us know what your doctor says, and good luck!
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Old 11-24-2012, 07:16 AM #10 (permalink)
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Default re: Curious about Lyme and symptoms

There are a number of paraneoplastic disease that mimic ALS/MND, and some of them have a cerebellar ataxia, further the can xause atrophy and have a distinct liking for the bulbar muscles.
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Old 11-25-2012, 12:40 AM #11 (permalink)
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Default re: Curious about Lyme and symptoms

As an update - my doctor phoned today and said my tests came back with a high number for HHV 6, one of the viruses he was testing for. It seems to be a virus almost everyone has had as a small child, but can reactivate, or if caught for the first time as an adult can have more serious complications - generally a mono or chronic fatigue type - but rarely primarily CNS. He recommended I try Valcyte medication and see if it helps. He said I should be able to tell within 2-4 weeks if it makes a difference, and if it does the HHV 6 is probably the cause of my problems. Thank you so much for your feedback, and I'll check in after I try this medicine. Incidentally, he also asked if I wanted to wait for the Lyme test to come back -- but then also said this particular lab always gave some sort of positive ! So I wonder why he sent me for a $500 out of pocket test ! My husband said it's because they need test results in order to try any treatment and have it covered .. but still...
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Old 11-25-2012, 12:47 AM #12 (permalink)
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Default re: Curious about Lyme and symptoms

Rami, thank you for that info regarding paraneoplastic syndrome and bulbar muscles. I admit it is something that I am concerned about due to having a pre-cancerous ovarian condition previously. I figure I will try the Valcyte ( despite some horrible sounding side effects ! ) and hope that it turns out to be HHV 6 complication that responds to treatment. If that doesn't work, I guess go from there.
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Old 11-25-2012, 06:57 AM #13 (permalink)
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Default re: Curious about Lyme and symptoms

Good luck, and let us know how it works out.
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