My First Video Of 2009 - An Update

A quick video to update you on how things are going. I have been on Doxycycline for Lyme disease for nearly three months but haven't seen any improvement so far. I have seen an increase in symptoms rather than a reduction.

Category:

People & Blogs

Tags:

• lyme disease
• me/cfs
• parkinsons disease
• parkinsonism
• involuntary movements
• movement disorder

[taniaaust1]

Hi paul, sending you a hug if it's accepted. At one point with the ME I too started wondering if I was getting Parkinsons disease due to the hand tremors etc. I looked so much like a Parkinsons patient that when i was in hospital the nurses there all thought I had that. Fortunately that symtpom (like all my various coming and going symptoms esp when triggered) seems to be gone for the time being. Im very sorry to hear about your recent losses. I hope this year is a much better one

[kaazoom]

Hugs are always accepted. Thank you. I know that parkinsonism has been a feature of ME, especially the epidemic type. There were a number of opeople who went on to develop full blown PD during the outbreak in Iceland. Interestingly encephalitis is thought to be one cause of PD. My symptoms do not seem to vary too much these days, although there are differeces in intesity.

[laurenvparrott]

Hi Paul - I am so sorry to hear about your mother. Last year, my grandmother died a few weeks before Christmas and it was very difficult. I can't even believe what a strong person you are. I know that your son and mother are watching over you, and I pray for you all the time. Good luck with everything and please keep making videos!

[kaazoom]

Thank you for the encouragement and prayers Lauren.

[cleric1104]

Hey Paul. I'm so sorry about your mother. I agree with you that if the Psych. tells you your symptoms are just externalizations of interior emotions, he's wrong. Still, I do know that the amazing stress that you have been under outside of Lyme works hand in hand with Lyme keep you sick. I got sicker with ABX for about four months before I started seeing some change 2 months ago. Not saying that's your case but fighting lyme is fighting an internal war.Very tough. You are amazing. Keep fighting.

[kaazoom]

Thank you. I am sure that the stress of the past few months must have some effect on my symptoms, but as I think you will agree this is different from saying that it has caused them. i will keep taking the ABX. I am encouraged that you saw results after 4 months. I might just need to give things time.

[DysautonomiaMD]

You and everyone else ~ you're coming to my site and my little bed-ridden world is now filled with all of you lovely people who are is such dire need. God Bless us All, and may we learn more and more about dysautonomia, ME, MS, CFS, fibromyalgia and publicize it as a remaining disease to research. Perhaps once we know what Dysautonomia is, we'll know more about the remaining diseases. Praying that this is just around the corner. XX to you all. Really good XX

[neelubird]

I think muscle rippling occurs in both ME and LD and I get that too- I think the twitch looks as though there's a tiny frog under the skin that's jumping up n down.Another weird movement symptom I got was I was wiggling my toes and all the toes moved up n down simultaneously except for the 2nd largest toe which stayed still and upright- surely that's not normal.Your walking demo- that's how I walk on a good day.I worry that I'd never pass my DLA renewal medical if I walked to that extent:S

[greenpeel1969]

I am so sorry you have so much to bear at the moment. You are an inspiration because you are so strong, but I am sure God sent you your gorgeous grandson to help you through the months ahead, he is beautiful isnt he? God Bless you and your family.

[kaazoom]

I do get night sweats and tingling in my arms and legs. But I also get muscle 'ripples', you can see the muscles rippling under my skin, usually in my legs, arms and hands.Fingers and toes will move on there own too.

[kaazoom]

I had tests for Lyme done at Igenex, but they were negative. My diagnosis is a clinical one. I don't think I have had pronounced herx reactions, it just seems that whatever I have got is still progressing. Not having a positive test result still leaves me uncertain about the diagnosis, although I know that the tests for Lyme aren't very accurate especially after all the years I have been ill.

[thane17]

Hi Paul, Thanks for continuing to keep us posted with the videos. Sorry to hear about your mother. Did you have a positive Lyme test? Or was it clinical? I can't remember but my questions is whether you have pronounced herx reactions from the antibiotics? If you do then you at least know its bacterial and most likely Lyme. Hang in there man!