Treated for Lyme disease

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I was taking 250mg of magnesium to no effect then upped it to 500mg, also to no effect (other than things getting awfully loose - if you know what I mean, ha, ha!).

I stopped the magnesium and potassium supplements because after several weeks, the potassium wasn't doing any good, either.

My early neuro exams revealed clinical weakness in arms and legs but the arm weakness, in my opinion, was probably due to bilateral frozen shoulder syndrome.

Not sure about my legs. (frozen leg syndrome, perhaps?):smile:

PZ
 
I know what you mean about the looseness..I've gotten myself into all kinds of a mess with those issues lately. Are you taking anything to prevent LMN involvement or have your neuros given any suggestions? And you have not had any more progression much since your onset right? I have tried to read up on ya but you've been around here awhile with alot of posts lol :)

I'm really starting to confuse everyone now..lol..they were trying to chase me around with all sorts of theories but the fact that my reflexes will be brisk one day and then normal the next...they as well as I are scratching our heads. I can find anyone or anything on the net where this is the case.

Did they just diagnose you with PLS at the loss of anything else explaining the UMN involvement? You said you dont have clonus, you have weakness, babinski? anything else that is standard for UMN ? Did your neuros do blood panels for viruses, deficiency, things like that? I know they always do the typical B12, thyroid, CpK, AnA, blah blah? They just did like 8 panels on me because my doctor says that alot of different things can cause UMN symptoms.

I research so much about everything and anything just wondering about ya because besides the shoulder thing you sound like most of the PNH peeps I have talked to. have they done a muscle biopsy on that shoulder?
 
New blood panels done with each and subsequent neuro visits. CPK and Sed rates were slightly elevated but not enough to point to anything. I was told it was sort of like having a 99 temperature (I never have been able to figure out how to make a degree sign via this keyboard). The slight elevation could be caused by any one of a number of things.

I could have some clonus, it was just never commented on unless interpreted by the 4's charted in reflexes. I wouldn't know it if it knocked on my door and introduced itself!

After MRI's, EMG's, NCV/s and bloodwork, 2 neuro's have the opinion this is PLS. I'll see a new neuro (#4, due to #3 having retired) next month. This is why I feel I can ask about the PNH possibility.

Regarding Babinksi, #2 said it was only lateral and #3 said it was bilateral. No other signs were noted (hoffman, jaw-jerk, etc...).

PZ
 
Well ya def have UMN involvement with the reflexes and Babinski's but if you had Clonus you would know it when they check your reflexes. You would be shaking.. with CpK it can be all over the place if you knock your elbow, fall, smash your finger..blah blah..it can elevate. Its really irrelevant if its not hugely high..this was first test they gave me when they were checking for Lou. I know its wierd me asking but have you been checked for Herpes and those things? lol...you can message me if you like on that one hehe..I get so much crazy information by having my neuro friend that doesnt believe its lymes and thinks MS and Viral...my LLMD with Lymes but with other complications, and then a Naturopath who thinks the molds got me :) All I know is that there are causes of seemingly UMN symptoms that are never discussed in detail on the net..I'm really not sure why some of the research my doctors and I have read is not readily findable unless you know what you are looking for....hmm...conspiracy lol :) But I guess in your case they could give you PLS with 3 outta 5 UMN symptoms but still there has to be a cause behind it all especially with your freezer shoulder. Maybe I will go back and read your symptom list and progression and research..itll give me something to do with my brain besides later thinking problems...I'm such a loser.
 
The blood panels that were done in the past included all of the STD's they usually run. So, I can rest assured I do not have herpes or syphilis. Okay, at least I didn't have them then!
 
Awesome..well thats good news! Its so funny with my family when they run a new test or something..such as when I got my CPK..normal yay!...EMG normal yay!...MRI normal they were like yay and I was no we want that abnormal..they are so confused that now that just ask what the test is and do they need to pray for normal or abnormal lol :) I find it so provocative that with a disease such as Lou that everything can be normal but with one little stick of that needle on the EMG your life is far from normal ever again...so crazy..I'm sure I'll be hitting you up with more questions I look through all your posts bc your case is so interesting to me and you are very helpful here. thank you for letting me bother you for awhile.
 
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