Feelings like a pin pricking you

[Patti D]

Hi all,

Boy there have been some really good posts lately. I have been on AP for 6 months now and have since the very beginning even before I was on AP experienced this very wierd abrupt tiny pain that felt like someone poked me with a pin and then it is gone. This still happens and this feeling/pain can occur anywhere. Does anybody else get this? I would have to say it happens less but it is still happening. Is this the mycos moving around and trying to settle in or are they moving around because of a die off.

I get really nervous as I think it is a deer tick biting me somewhere and this is how my RA started, with lyme. Speaking of ticks , I found an entire fresh hatching yesterday of thousands of pepper sized deer ticks on the flower pot on my patio. Another endearing tick story, go figure:angry:

Happy days!

Patti D

[Maz]

[user=287]Patti D LD 5/07, RA 12/07[/user] wrote:

I have been on AP for 6 months now and have since the very beginning even before I was on AP experienced this very wierd abrupt tiny pain that felt like someone poked me with a pin and then it is gone. This still happens and this feeling/pain can occur anywhere. Does anybody else get this?

 

Hiya Patti,

Yes, I also get this on occasion. Skin prickling is one of those lovely neurological chronic Lyme symptoms. I know what you mean….really does feel like a tick biting you. :sick: Check out LymeNet's symptom list (under neurological). It's pretty common amongst Lymies, I think:

http://library.lymenet.org/domino/file.nsf/bbf2f15334c1f28585256613000317cc/eee9f15bfb66a10
 
Hope you sprayed those little suckers on your plant with a good dose of DEET! :angry:
 
Had one of those “rough” days today…my left ankle just blew up overnight and when I stepped out of bed this morning, I nearly fell head over feet….excruciating. This, accompanied by those trippy flu-like symptoms. Haven't had that kind of pain/swelling in either ankle, though, since this all started. At my last visit to the Lyme doc he said to expect the early symptoms returning for short periods as I improve…apparently, that's common, too….sort of like a “last stand.” Geez…I hope so. :doh:
 
Was reading what you said about working out those painful joints….I think there's some truth in this, too….I always felt better after going to physical therapy, even on days I had to drag myself there. I'll try and get on the tredmill tomorrow and do some of those achilles tendon stretching excercises see how that goes.
 
Was so sorry to hear you knees were troubling you again…maybe you're getting a bit of the “last stand” stuff, too?
 
Peace, Maz
 
 

[whaleharbor]

Maz,

I'm so sorry that you've had a rough day.  You just had a 95% better day the other day!

You are so strong and encouraging for all of us here.  So while I don't have answers for you…I wanted you to know that you are in my prayers. I want to hear about another 95% better day for you…and all of us!

— whaleharbor

Minocycline 100mg every other day with food...lots of food: Zydus brand. Celecoxib 200mg twice per day: Greenstone brand.

[Patti D]

Thank you Maz,

I will go back to that sight, lymnet. I have been there many times but not in the archive library. That pin prick feeling is really strange. My family asks me what are you swatting at as that is what I find myself doing. It doesn't mean things are getting worse does it?  I am sorry your ankle is bothering you. I did not walk yesterday because my left ankle was bothering me too. My achilles tendons are also an issue as well as the tendon that is over the top of my ankle bone. It has been swollen from the beginning. I am measuring it against the other ankle with a tape measure and it is slowly going down. This is the only way I can figure out if my swelling is better is by measurement. Because your body is symetrical it is pretty easy to measure one side against the other. It sounds pretty old fashioned but it is working for me.My joint swelling has never been symetrical as all of the RA indicates.

The rain once again made things worse, just the ankles now but today I am up and ready to go outside to do a little gardening and kill a few ticks:angry: I'll give them “there last stand:X:X:X:X:X:X:X”

 I have never been fond of whiners and always have considered myself “lucky & blessed” if I could get out of bed in the morning and put one foot in front of the other and move freely through the day, have a few laughs with friends/family and enjoy things as they are. This disease puts a whole new perspective on things. I had a 95-96% day this week and realized I spent the entire day giving thanks and gratitute for “getting out of bed and putting one foot in front of the other”:D I am keeping all fellow APer's in my prayers.:blush:

 Happy Days!

Patti D 

[DianeWI]

Hi Patti,

I have this daily.  Its been part of my life for a good 20 yrs.  I can't tell you how many times I jumped out of bed because I thought I had a spider bite, or a tic or even a bee.  It wakes me up at times.  It is totally normal for me to get out of bed and turn the lights on and go through all of my covers, just to be sure something isn't crawling around.   Yesterday I was so sure I had a tic on me that I pulled up my jeans, thinking it was on my ankle.  There was nothing there that I could see.

I did not know that this could be a symptom of Lyme. 

And I guess I'm one of those “whiners” because I am always overwhelmed with this disease and how it manifests, and really, how tragic my life has been becasue of it.  I have MCTD with many SD symptoms and M.S. symptoms and a lot of FMS.  But by far the worst symptoms have been the chemical sensitivities.  It prevents me from working and going places and has destroyed relationships with my siblings and friends because most people can not relate to what I live with.  Now that I whined about that….I am better then I used to be.  I'm not down in bed day and night like I once was.  I do praise God for being a little better.

Hugs,

Diane/WI

[Maz]

Sorry, girls, for some reason that Lyme link was broken to LymeNet. Here's the proper link and should work. Skin prickling is mentioned under neurological symptoms, but will cut and paste the relevant bit here, just in case:

http://library.lymenet.org/domino/file.nsf/bbf2f15334c1f28585256613000317cc/eee9f15bfb66a105852567c700120022?OpenDocument

[*]Neurological — headaches, facial paralysis, seizures, meningitis, stiff neck, burning, tingling, or prickling sensations, loss of reflexes, loss of coordination, MS like syndrome [/*]
[*][/*]
 

Patti, the way you described your ankle/tendon swelling is exactly what I'm experiencing, too. All in all, feeling much better today, although the ankle still hurts likes the dickens to put my weight on it. And, although pretty much every joint was affected, it was never perfectly symetrical for me, either. Different fingers would be affected, one elbow one day, the other the next, one knee more swollen than the other…that kind of thing.

I know what you mean about feeling so grateful for every second of the good days. I feel just the same way. On the rough days, I keep myself going and try not to think about it too much, but sometimes those waves (cytokine storms?) of depression hit and it can be more difficult to pull out of the funk. The good part is that once the herx passes…usually the next day….it's like I never felt that down. All in all, not much I can do about the depression when it hits like that, but wait it out and trust all will be well again soon. But…for sure….gratitude is definitely something I'm learning along the way!

Whaleharbor…you're so kind to always drop a little line of support my way. Thank you for your kind thoughts and means a great deal to read your words….especially on those rough days. You're a treasure….and I hope you are feeling a bit better in yourself, too?

Hey, Diane! Yeah, Lyme can mimic pretty much everything under the sun and the crazy thing about it is that you can get infected, think you have a flu bug, get well, and then maybe a decade or so later it explodes into existence. This complicates things even further and probably why so many people get diagnosed with “autoimmune” conditions and only get sicker on immunosuppressants. That said, I'm sure it's a combination of the whole pathogen load picture that we pick up throughout our lifetimes. As a child, we moved to a new developing country pretty much every year or so and in each place the family was exposed to new bugs all the way. It was only when I moved back to the west that I started picking up the more “western” childhood bugs in adulthood – strep, chicken pox, fifith's disease! It was wild…as soon as one of my kids came down with something, I followed, because I just didn't have the immunity from my own childhood. Just found out, too, that chlamydia pneumoniae is pretty endemic to Taiwan where we lived for a while….virtually the whole population of this island are carriers. When I visited the Dr S chat the other night, I asked what the link could be between my brother's MS and my RA and he said, “C. pneumoniae,” without any hesitation. So, I'm going to talk with my doc and see if he'd be amenable to adding a thing or two from Dr S's protocol to see how I go. That said, there is no doubt the Lyme triggered my RA, as the RA came right on the heels, within weeks, of getting Lyme…it was just the last rotten apple added that tipped the proverbial apple cart, I think.

Peace, Maz

 

 

[DianeWI]

Hi Maz,

I have the chlamaydia pneumonia too.  I believe I had it for most of my life.  I never get just a cold, I get chronic bronchitis, which IMO is the same as pneumonia.  I'm going through a spell of it right now.  I've been ill for two weeks, coughing up phlegm and not sleeping well and feeling horrible. 

I have never been diagnosed with Lymes, though my AP doc belives I have it.  So..I need to get on Marshall Protocol sometime.  I'm going to limp through for a time. 

I'm giving the MMS a good whirl.  I have the book and I'm quite impressed with what I'm reading and I have been on the MMS and then I got off and now I”m on again.  I took a large dose today to see if it will knock down the lung infection.  I have taken so many antibiotics in my life, that I would really like to try another avenue if possible and right now, this route seems hopeful.  I will continue the AP at this time.

My family doc told me one time, that just about everyone has C. pneumonia, so she was not  at all impressed with my diagnosis nor was she willing to treat me accordingly.   If that is true….I wonder why it clobbers some of us more then others?

Diane/WI

[Maz]

[user=63]Diane/WI[/user] wrote:

My family doc told me one time, that just about everyone has C. pneumonia, so she was not  at all impressed with my diagnosis nor was she willing to treat me accordingly.   If that is true….I wonder why it clobbers some of us more then others?

Hi Diane….good question and I really don't know why, either. Although, my suspicion is that it's probably a combination of factors…environmental, stress, unique body make-up and total pathogen load. Amy Proal mentioned in her recent video presentation (c/o Michele) that science has only been able to name an estimated 0.04% of all pathogens out there. That's a pretty shocking stat. 

 http://www.vimeo.com/990740?pg=embed&sec=990740

I also think there are so many strains of the same organisms (apparently there are about 400 strains of Lyme worldwide) and that some of these are a lot more virulent than others.  This is probably why it's really short-sighted of the medical profession to just make a blanket assertion that probably the whole population carries c pneumoniae or any other pathogen, because the most honest answer is that no one really knows if it's the same species or whether some of the species have evolved in such a way as to be more virulent. And, if researchers like Nicholson are right, there are probably a number of pathogens that have been biologically engineered to be more damaging while also being more stealth-like, as well. :X 

I guess we'll never know the whole picture, but at least we have a means to help us regain our lives and some open-minded physicians who are willing to help us do that.

Hope your MMS experiment helps! Would love to know how you get on with that…I'm just beginning my researches on it. 😉

Peace, Maz

[Jo]

[user=63]Diane/WI[/user] wrote:

My family doc told me one time, that just about everyone has C. pneumonia, so she was not  at all impressed with my diagnosis nor was she willing to treat me accordingly.   If that is true….I wonder why it clobbers some of us more then others?

Diane/WI

Mr Perfect had the entire panel done. And he nas not one single little drop of C. pneumonia at all.

He has Mycoplasma pneumoniae IgG Pos, though.

Blessings

Jo

[Patti D]

Hi All,

Thank you for all of the information you have shared.

Diane: First of all I too am from Wisconsin, between Madison & Milwaukee but I am up in your area too as I have a daughter in college at UW La Crosse. I was disappointed to hear you have had this pin prick feeling for 20 years. You mean this is part of the program:( Oh thanks for letting me be a whiner:) I have found this website to be the perfect place for all emotions to be expressed which has been a huge blessing and relief:D

Maz,

Hows your ankle? My son teaches tennis and has taught me a ankle exercise I do each morning before I get out of bed. Now that I know what a new morning brings aka stiffness I do this before my feet hit the floor. I do the alphabet with each foot. It sounds goofy but I draw out each letter with each foot. You end up doing a full rotation/range of motion several times in all directions using all  of the ankle, and stretching all tendons. Try it. My son learned this from his college teams personal trainer. I also use the big rubberbands on the door I got from PT for my bad shoulders.

I so believe the bouts of depression may come form a cytokine spill or storm. There is no warning when it will happen, but I can safely say I am better able to lift it now. Yesterday it was the weight gain(prednisone recovery) I feel like they should have a 12 step program for prednisone.” Hi I'm Patti and was on prednisone for 3 months and gained 30 pounds. ” I went to the lyme site and found some interesting information about weight gain and lyme and that it may be thyroid related. Of couse they only did a thyroid screen which was negative so no reason to look further. It's almost summer, we have a lake home and I can't seem to loose one pound with cutting out just about everything and exercising daily. Talk about frustratingf:headbang: We all know what stress causes- joint pain !!

Plus the thing that really angers me is doctors know that excess weight is stressful on the joints so isn't there something better than prednisone that can be given??

Diane & Maz,

I am very curious. Did either of you have pneumonia before RA and did you recieve the pneumonia vaccine?? For the record I have had pneumonia once, about 10 years ago and was really sick with it. I got vaccinated with the pneumonia shot 3 years ago. Makes me want to find out what was in that vaccine.

Thanks ladies & Happy days!!!

Patti D

[Maz]

Hi Patti (aka potty mouth???:roll-laugh: Oh no…you don't want to get lumbered with that alias on here! LOL

Hows your ankle? My son teaches tennis and has taught me a ankle exercise I do each morning before I get out of bed.

Patti, thanks for remembering and asking and also for the alphabet excerises!  I do something similar, but will give that a try as well, before rising, as you suggest. Thanks. Pain is much better, thank goodness, but the swelling is pretty ugly. I've been doing stair rises with my heels over the edge of the bottom step of the staircase and rising up and down as far as my ankles will allow in either direction. Walking is improving, but still look like 3 or 4 decades older than I am. Bummer….I'm not enjoying the thought of telling my LLMD, as he may want to change up my protocol and have me on heavier doses again, since my tick bite a month ago. 🙁 I'm hanging on, hoping it's just a short-lived herx.

“Hi I'm Patti and was on prednisone for 3 months and gained 30 pounds. “

What a hoot!!!!!!!! :roll-laugh: You had me in giggle fits over that one. Well, you're not alone in the weight gain dept. I've also gained as much since last summer. My thyroid still reads on the lower end of the TSH scale, which should mean weight loss would be easier, especially as I eat a good diet, but I'm just not as active as before.

I went to the lyme site and found some interesting information about weight gain and lyme and that it may be thyroid related. Of couse they only did a thyroid screen which was negative so no reason to look further. It's almost summer, we have a lake home and I can't seem to loose one pound with cutting out just about everything and exercising daily. Talk about frustratingf:headbang: We all know what stress causes- joint pain !!

Yup…same here. We could have been twins in a previous life! I'd also heard of thyroid issues with Lyme and also with mycoplasma infection. I feel it's part of what's going on with me, but though my thyroid still falls within “normal” parameters, I'm sure my whole endocrine cascade is out of synch. I haven't been on pred, so can't put it down to that. 🙁

Plus the thing that really angers me is doctors know that excess weight is stressful on the joints so isn't there something better than prednisone that can be given??

I'm wondering this myself. Had heard bee venom shots were pretty good for reducing inflammation in joints (mentioned in The Road Back, too), but have also wondered if I should get some fluid drained off. My LLMD said it would be fine to try the bee venom, if I wanted, but to be sure I wasn't allergic first….haven't quite worked up the courage to find out yet.

I am very curious. Did either of you have pneumonia before RA and did you recieve the pneumonia vaccine?? For the record I have had pneumonia once, about 10 years ago and was really sick with it. I got vaccinated with the pneumonia shot 3 years ago. Makes me want to find out what was in that vaccine.

Yes, had recurrent bouts with walking pneumonia and bronchitis all throughout my later teens and into my early 40s. Don't get much of anything now, though. On the DR S chat the other night, he mentioned chlamydia pneumoniae as being very prevalent amongst those with rheumatoid disease and MS. I just found out that it was first discovered in Taiwan, where virtually the whole population tests positive. My family lived out there for 18 months when I was 11/12 and my brother was 16/17, so very possible we have that in amongst our pathogen load…although it's possible anyone can get it…it's just that Taiwan has become a sort of chlamydia test subject, due to its widespread prevalence. I used to have to have flu shots when at boarding school in England, but haven't had them since…nor would I. Try to avoid any type of vaccination these days.

How are you doing, Patti? Any improvements or otherwise going on?

Peace, Maz

PS Tried to insert my reply in amongst yours, but still haven't worked out how to do that without the boxes…ho hum…

[Patti D]

Hi Maz,

Thanks for asking how I am. Last night was a reoccurrance of 6 months ago. I was awake most of the night with ankle, shoulder and wrist pain. Being new to this, I now try to figure out the trigger. The only thing I could thing of was the red meat correlation. We went to two cookouts this weekend and had burgers at both. I haven't had red meat in a couple of weeks because now that I have publicly announced the issues I have with my chubby butt:doh:, I have been staying away from high fat foods. Now it could be a herx too as I haven't had a big one in quite awhile. The good news is I got out of bed:crying: and was able to take a little snooze on my sofa. I got up and feel ok now. This is good as I have to be to work this afternoon so now I don't know if I should walk or not. The problem is once again a storm is coming, so the joint pain is from the barometer rising??? 

I have found the pneumonia issue quite interesting. I had bronchitis many times too. I have had not even a sniffle since on the ABx. I also usually get the flue vaccine because of the amount of people I work with, but did not get one this year because I read about the formaldehyde used to keep the vaccines preserved with a longer shelf life. Everything becomes suspect:sick:

I tried to register for the AP doctor chat on the other website but it would let me on so I missed the session. I was dissapointed .  Well I'm off to get ready for work.

Happy days & hope today is great for you and me lyme twinnie:roll-laugh:

Patti D 

[Maz]

[user=287]Patti D LD 5/07, RA 12/07[/user] wrote:

The good news is I got out of bed:crying: and was able to take a little snooze on my sofa. I got up and feel ok now.

I have found the pneumonia issue quite interesting. I had bronchitis many times too. I have had not even a sniffle since on the ABx.

I tried to register for the AP doctor chat on the other website but it would let me on so I missed the session. I was dissapointed .  Well I'm off to get ready for work.

Hi Patti,

Sounds like it must have been a herx, as it passed so quickly for you…thank goodness. Hope you made it to work and all was well after that. I often find that after a bit of nap the herx symptoms have passed when I reawaken. Would be good to retest that red meat connection again in a few weeks to see if that's the issue or not, though. Plenty of opportunities now with summer almost here and everyone cranking up the BBQs.

Yea, I try and avoid vaccines now, too, really just because I'm so hypersensitive these days I don't need anything else (live or dead vaccines) to trigger anything else. You're right, though, some of these vaccines do contain some nasty little toxic additives. I've had so many during my lifetime, because of all the traveling we did as kids….yellow fever, tetanus, cholera, typhus, typhoid, Hep C, gamma globulin, etc, etc….on top of all the usual childhood ones. Really does make me wonder how these are dispensed willy nilly and we take them out of necessity (we're told), but what the overall picture might have been in cranking up the immune system and exhausting it. Of course, now, they're pushing the newer HPV vaccine on pre-pubescent girls and already there have been deaths associated with reactions to it. :doh:

They have a discussion thread on rheumaticsupport.net where members have added notes they took from that chat session, if you want to read up on what Dr S shared in the chat.

Ankle pain not so bad today and swelling down a fraction…actually made it to the gym for a gentle workout, but now my middle finger has shooting pains that come and go, curling it up. Ugh…oh well, handy for making rude gestures while driving, if needed…not that I would, of course. :roll-laugh:

Peace, Maz

[Patti D]

Hi Maz,

I guess I spoke to soon about feeling better. Today I have a sore throat, brain fog, and still ankle pain. I did the epsom salt bath last night which helped. So herx or not I think I 'm winding it down a little. I have had very little exercise because my ankle is so sore. The good news is my neck & shoulder pain is gone. I so hope you are better. My middle finger is finally down in swelling. It took 4 months. I used to tell everyone God had such a sense of humor and knew what swelling to leave in place a little longer:cool:, so consider that middle finger of yours to be of some use:roll-laugh:Naughty! If it uncurls soon draw attention to it with a large mood ring:dude: That will get peoples attention checking to see if your ring is blue or black;)

Don't get me going about the HPV vaccine. I read everything I could about it and my OB/GYN  also advised against it for my daughters. So many have been suckered into that vaccine:(

I am going to try to check the rheumaticsupport.net discussion pages. What happened was I registered, picked a user name and password and was sent back a notification that my account was not activated until someone from the board got back to me . No one has got back to me yet. I will try again tonight.

Thanks again and lets hope our beautiful puffy ankles are able to keep us moving this weekend.:D

Happy days & Peace!

Patti

 

[Maz]

Hey, the mood ring is a great idea, Patti!!!! Would be good to keep everyone at bay on those herx days. :roll-laugh: Could just stick that middle finger ring in the air everyone would know!

Sounds like you lucked out with your pediatrician. I could have stuck my sore middle finger in the face of the my youngest (16) goes to when we were in there last year and she was pushing it on her. I responded that it was such a new vaccine that I wasn't comfortable about the long term effects…she pooh-poohed it, of course, and continued to direct her hard sell to my daughter. When I went out of the room for my daughter to have her “adolescent exam,” I could hear the doc telling her, amongst other things, that “Parents always worry too much and you should have the HPV shot just to be safe.” By the time I was invited back into the room, my daughter was sold. :X Just one of those instances where MDs exert their authoritative power. Thought it was really bad, though, to direct her sell to my daughter, who is a minor. Maybe these docs get some type of kickback for all these in-office vaccinations?

Don't know what your weather is like, but ours is weird…chill in the air, but so humid and 'close.' Everything feels damp and the sky is a mucky, dark grey, but no rain. Woke up with muscle aches all over till the Advil kicked in. Middle finger pain miraculously gone and even swelling in ankle, though still there, wasn't so bad today, though. Forced myself to go to the gym and managed half an hour on the recumbant bike, some leg presses and abductors, abs and even a few arm/shoulder workouts. It's the most I've managed in a long time. Weird how we've both had the same type of body parts affected. Maybe my good day is a good omen that yours will be clearing up soon, too! Do hope so, Patti.

Feel better soon!

Peace, Maz

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