Could this be Lyme Disease

[JeanieB]

Grateful for any ideas about these symptoms:

symptoms for just over 3 months -had brain/spine scan, E.M.G and NCS. I am still awaiting results from   consultant but the doc who did EMG said there was no evidence of MND or nerve damage apart from my carpal tunnel. Thinking maybe PNH/BFS but when I asked if this could cause my throat symptoms and weakness he said not.

I requested anti depressants when my symptoms first began as I was very worried about ALS. So some bits of symptoms could be side effects. I am quite calm about things now so isn't the cause. Convinced finally that not ALS by people on forum as ALS wouldn't be affecting so many areas so early on, Dr's comment on EMG (would have shown up Lower motor neuron damage), and even tho my sensory symptoms are minimal this wouldn't be in ALS.

Present symptoms are:
Fascics - jerks(? myoclonus - ?tablets),fluttering,up and down movements I can see and feel, or shallow rippling under the skin - can sometimes feel if leg in certain position and can sometimes be seen. Lots of rippling in sole of foot makes toes move side to side. Have days where don't notice much twitching. Areas that I have noticed twitches - left arm, left leg, right ankle area, left foot, left buttock and groin, throat,neck, tongue, face(especially jaw/chin area), left eye (had twitchy eye in past but seems to happen bit more often)

Have slight tremor in hands , which seems to be getting worse (?tablets).

Cramps - lots of areas - can be very short lived, or can continue for ages leaving the area very achy - both legs and feet, both arms and hands, buttocks (all these more so in left), tongue, throat, jaw, cheeks, roof of mouth.

Feeling of stiffness in hands and toes

Swallowing liquids feels odd - can do it but get lots of wind, feels gurgly and as if wants to come back. Throat stings sometimes.

Speech beginning to feel slightly affected - tripping on tongue
Biting tongue and inside cheeks as I speak and I think when I sleep - mouth full of ulcers

Cough feels shallower -

Chewing feels slightly affected - notice if chewing raw veg/nuts - take ages.

Sensory symptoms - very minor - had some numbness and tingling in left hand and foot initially but not so much now - if I do seems to be after lots of cramp in that area .Bits of tingling - short lasting and not often - eg fingers
Mild burning sensations - various areas - across top of back, limbs.

Joints feel vulnerable - especially knees, elbows, ankles. May have bits of arthritis that could complicate this but not aware of this before except in right knee. Hear lots of clicking in joints - especially right ankle.

Weakness - left hand feels slightly weakened and clumsy - drop things and hurts in hand and arm when pick up objects e.g. mug of tea. Hand sometimes feels tender to touch. Left foot feels as if not holding me steady e.g. when getting dressed and lifting up right leg. Feel my walking slightly odd to balance myself.

Muscles feel softer and wonder if signs of atrophy - behind left knee, left arm and hand, face looks a bit droopier than normal, my left buttock feels uncomfortable when sitting and sole of left foot sore on standing - wonder if atrophy - buttock looks a bit saggy.

Did wonder about CIDP but apparently would have shown on EMG??

Really appreciate anyone responding. Sorry so long but didn't want to miss anything out.
Best Wishes
Jean

[JackieCalifornia]

Thank you, and best to you as well!  Stay in touch with us.

[JeanieB]

Hi Jackie,

Sorry some of the terms I used didn't make sense. I'm not a medic either (I am an Occupational Therapisy but no expert in neurology) and hate it when people use abbreviations without explanation. Just trying to keep it short as I tend to go on a bit!!

Been taking magnesium for a little while so will see if it starts to make a difference.

Thanks for your input. Found a doc only few miles from me (I believe he recommends herbal)so may contact once I get results from consultant neuro.

Good luck in your recovery
Jeanx

[JackieCalifornia]

Jean, yes, I had Lyme and Babesiosis, then got another tick and got Lyme and Ehrlichiosis.  I had a reaction to the antibiotics, so am treating (I can't believe I'm saying this) with herbal meds.  Will go back on antibiotics as and when possible.  It's a long story.  :)

I have read (tho I'm not medically trained) that Lyme bacteria use up the magnesium in your body, which can lead to muscle twitching and cramping.  I take magnesium supplements now and they do help -- I was getting very painful calf cramps before I started taking magnesium supplements, and it also is soothing to the nerves and helps one sleep, in my experience.  (One brand of magnesium I used to take was set up so I had to take 3 pills of it per day to get the daily dose.  If I took 2 in the morning and 1 in the evening, I was sleepy for several hours during the day -- so I switched it to 1 in the morning and 2 in the evening, and I wasn't sleepy during the day anymore and slept quite well!  I am however very sensitive to everything.)  I am definitely much less jumpy when taking magnesium.  

I have also read that magnesium malate, orotate, aspartate and/or citrate [all ending in '-ate'] are the most easily absorbed by the body, and also that if you take too much, it will give you loose bowels, but otherwise not risky.  (Checking with your MD first is the cautious thing to do.)  I am taking some now that have three of the four '-ate' forms listed above.

Just a thought.  Hope you find a friendly MD soon and that you feel better too.  

[JeanieB]

Hi Jackie,

That's really helpful, thank you. Also got some tips on another forum with Lyme section.
There are people much worse off than me. Frustrating and worrying to not know what this is and spasms annoying but nothing is dreadfully painful and I can still walk, talk and hug my kids and husband!

Hope you aren't suffering too much. Do you have a diagnosis?

Regards
Jean

[JackieCalifornia]

Here's an organization I found a reference to:

BADA (Borreliosis and Associated Diseases Awareness UK)

You may wish to look them up for suggestions on finding a Lyme specialist.  Borreliosis is the proper name for Lyme disease.

[JackieCalifornia]

Welcome to MedHelp --

You've been through a lot, haven't you.  Sorry to hear it, but good for you for continuing to figure it out and take action.

There is much in what you say that I don't have the background to understand, but given that your other MDs have not nailed the diagnosis, and given that a number of your symptoms could be Lyme or a similar disease, you may wish to go for a work up with a Lyme specialist.

I see you are in the UK ... I understand that there are slightly different strains of Lyme there than here, and the wild card in Lyme is that it often comes with co-infections that confuse the symptomatology and make diagnosis more difficult.  

I've just googled 'lyme disease manchester uk' and there are several references there that may lead you to a Lyme specialist for an evaluation.  

Best wishes -- let us know how you do or if we can be of further assistance.