Comments on: The Intesity of Lyme Pain http://www.lymediseaseresource.com/wordpress/the-intesity-of-lyme-pain/ News and resources for neurological Lyme disease and co-infections. Tue, 03 Jan 2012 21:09:24 +0000 hourly 1 http://wordpress.org/?v=3.2.1 By: Jenna Smith http://www.lymediseaseresource.com/wordpress/the-intesity-of-lyme-pain/comment-page-1/#comment-3602 Jenna Smith Fri, 12 Nov 2010 16:51:00 +0000 http://www.lymediseaseresource.com/wordpress/?p=728#comment-3602 Hi Kate - Your compassion is appreciated! Lyme is primarily spread by tick bites. Currently there are primarily twenty strains of Lyme being studied from ticks collected from a wide geographic area. Of these twenty strains, six don't infect humans, ten cause a bulls-eye rash (CDC still uses that as a defining symptom of infectious Lyme however this is not true). ONLY FOUR STRAINS CAN LEAVE THE SKIN AND INVADE THE BODY. The deer tick is especially virulent when it is born at which time it is the size of a pin head. but larger ticks are also infectious. It was once thought the tick needed to be attached 48 hours but we know that there are cases of infection by mosquito, biting flies, sexual contact (really any bodily fluids where spirochetes are evident). Astragulus is a wonderful herb you can take from spring through fall as protection against Lyme according to Stephen Buhner a widely respected herbalist. Dose yourself with tick repellent before you go in the woods of fields and check yourself thoroughly every day for ticks especially spring and fall. Blessings, Jenna Hi Kate – Your compassion is appreciated! Lyme is primarily spread by tick bites. Currently there are primarily twenty strains of Lyme being studied from ticks collected from a wide geographic area. Of these twenty strains, six don’t infect humans, ten cause a bulls-eye rash (CDC still uses that as a defining symptom of infectious Lyme however this is not true). ONLY FOUR STRAINS CAN LEAVE THE SKIN AND INVADE THE BODY.
The deer tick is especially virulent when it is born at which time it is the size of a pin head. but larger ticks are also infectious. It was once thought the tick needed to be attached 48 hours but we know that there are cases of infection by mosquito, biting flies, sexual contact (really any bodily fluids where spirochetes are evident).

Astragulus is a wonderful herb you can take from spring through fall as protection against Lyme according to Stephen Buhner a widely respected herbalist.

Dose yourself with tick repellent before you go in the woods of fields and check yourself thoroughly every day for ticks especially spring and fall.

Blessings, Jenna

]]> By: physical therapy los angeles http://www.lymediseaseresource.com/wordpress/the-intesity-of-lyme-pain/comment-page-1/#comment-3459 physical therapy los angeles Wed, 03 Nov 2010 19:30:50 +0000 http://www.lymediseaseresource.com/wordpress/?p=728#comment-3459 How do you contract Lyme Disease? This is just absolutely awful to have to deal with. My heart goes out to you guys! Kate How do you contract Lyme Disease? This is just absolutely awful to have to deal with. My heart goes out to you guys!

Kate

]]> By: Gay Mcfarlain http://www.lymediseaseresource.com/wordpress/the-intesity-of-lyme-pain/comment-page-1/#comment-3315 Gay Mcfarlain Wed, 27 Oct 2010 01:01:34 +0000 http://www.lymediseaseresource.com/wordpress/?p=728#comment-3315 Great. Thanks for writing this. Its always cool to see someone help out the public. Great. Thanks for writing this. Its always cool to see someone help out the public.

]]> By: Martha http://www.lymediseaseresource.com/wordpress/the-intesity-of-lyme-pain/comment-page-1/#comment-1506 Martha Tue, 23 Feb 2010 12:41:52 +0000 http://www.lymediseaseresource.com/wordpress/?p=728#comment-1506 Unlike many Lyme suffers that suffer from muscle pain and join pain, Lyme attacked my endocrine system to a point that I would get sick from just eating two or three bites of food (I lost 57 pound within 6-7 months and now weigh 93 pounds) and on top of it all I have severe bladder pain that is constant, never goes away! The pain meds only worked for a short period of time. I had one pain med that worked for a total 3 days. Some things that I do to lower the inflammation is take inflammaquel, drink mushroom root tea, take pain meds in hope that it may work a little, take vitamin D, vitamin C, Co-Q10, along with other supplements. Yesterday, my doctor prescribed a pill that (in layman terms) will block the pain signals to my brain. He said that the L2/L3 have nerves that send messages to the brain when you have pain. I hope this works, however, it is not a final solution to the problem. It is a little unnerving to me that we are "blocking messages to my brain". I possibly don't understand the entirety of the treatment, but at this point I am desperate for some relief and will do anything. Living with pain day after day, minute after minute is exhausting. I work full time (in pain-which of course no one completely understands}, and I come home and crash because sitting at a computer all day long worsens the bladder pain. Unlike many Lyme suffers that suffer from muscle pain and join pain, Lyme attacked my endocrine system to a point that I would get sick from just eating two or three bites of food (I lost 57 pound within 6-7 months and now weigh 93 pounds) and on top of it all I have severe bladder pain that is constant, never goes away! The pain meds only worked for a short period of time. I had one pain med that worked for a total 3 days. Some things that I do to lower the inflammation is take inflammaquel, drink mushroom root tea, take pain meds in hope that it may work a little, take vitamin D, vitamin C, Co-Q10, along with other supplements. Yesterday, my doctor prescribed a pill that (in layman terms) will block the pain signals to my brain. He said that the L2/L3 have nerves that send messages to the brain when you have pain. I hope this works, however, it is not a final solution to the problem. It is a little unnerving to me that we are “blocking messages to my brain”. I possibly don’t understand the entirety of the treatment, but at this point I am desperate for some relief and will do anything. Living with pain day after day, minute after minute is exhausting. I work full time (in pain-which of course no one completely understands}, and I come home and crash because sitting at a computer all day long worsens the bladder pain.

]]> By: Bill Garner http://www.lymediseaseresource.com/wordpress/the-intesity-of-lyme-pain/comment-page-1/#comment-1270 Bill Garner Sat, 26 Dec 2009 05:44:04 +0000 http://www.lymediseaseresource.com/wordpress/?p=728#comment-1270 Dear Casey, I understand completely. I have no idea if Lyrica is helpful to me at all. I have some sensitivity to it that makes me a drooling, walking into walls idiot. And trying to explain this pain issue to anyone in the 'normal world' is hopeless. They don't see any gaping wounds so... I am a friend of the Invisible Disabilities Network & purchased a t-shirt that says; 'But you LOOK so good!" I battled the pain issue (& still do) for so long. At times when vertebrae bone grated vertebrae bone the pain was so intense my b/p shot up to 210/140. Likely 1 of my "previous neuro events". I've been to Chiropractors calling themselves Pain Doctors. Had one rural hospital anesthesiologist hang out his shingle as a pain specialist & he gave me 11 epidurals in less than 2 years. Say hello to osteoporosis & osteonecrosis. If the LD didn't get me, 1 of these MDs would run a close 2nd. Many try to limit their time 'in room' (w/ patient) to 10 minutes or less so they can triple book & maintain a suitable profit margin. If I knew where an acceptable QUIT button was I would have punched it a 1,00 times over. A sympathetic GP prescribed Vicodin for me when he could.... I was a grown man crying & whimpering like a baby struggling to get in a piping hot shower for SOME relief! Then God blessed with a miracle & a truly board certified anesthesiologist with an intense fellowship in Pain management & 3rd generation MD who just happened to have an obsession for wind surfing heard that Corpus Christi, TX was a windsurfers heaven! That was in late 2001 & it (he) saved my life. These are MDs that understand pain & what it does to body, mind & soul. And they treat pain in a multi-faceted approach. In certain flare ups trigger point injections bring things down from a critical level. I have some blown discs & there have been PERIODIC, properly time spaced epidurals & on... And yes there are pain meds. But they have a whole quiver of arrows to draw from. I wore the fentanyl patches for years & they were a godsend. No feeling of narcotic stupor etc... Unfortunately I live in a coastal, extremely high humidity area & they became problematic for me. I now have a med infusion pump that delivers a sustained morphine microgram dosage directly into my spine. We use Cymbalta & Rx NSAIDS for the general body pain but other techniques he has taught me. I am never 100% pain free. I do not need to be & keep my dosages as small as possible to maintain what is an 'OK' level for me. Nothing comes completely without side effects & to go high enough to give absolute comfort brings a malaise or drowsiness sometimes so it's my trade off for staying as spry as I can:)) I also sought out & keep a very good psychiatrist on my team. Pain, depression & other issues are all processed in the same small region of the brain. He also has bio-organic ways of dealing with chronic pain. He is integral in the process & prescribes the Cymbalta & trains me in relaxation techniques & how to improve my sleep. Another piece of the vicious pain cycle. I cannot say emphatically enough that you need to find a true anesthesiology trained, board certified MD with a Pain Management fellowship & specialty. If you have to drive 400 miles round trip once a month - DO IT! It is hard to express how it will change your life & outlook. Turn some of that frustration & despondency into anger & become 1 tough advocate for yourself. Pain & the stress it manifests is a killer. I can only promise you that there ARE well trained MDs in pain & understand it fully. They are much more common & well trained than even in 2001. Just Google till you find the 1 closest to you & get there. Just this guys 10 cents. Dear Casey,
I understand completely. I have no idea if Lyrica is helpful to me at all. I have some sensitivity to it that makes me a drooling, walking into walls idiot. And trying to explain this pain issue to anyone in the ‘normal world’ is hopeless. They don’t see any gaping wounds so… I am a friend of the Invisible Disabilities Network & purchased a t-shirt that says; ‘But you LOOK so good!”
I battled the pain issue (& still do) for so long. At times when vertebrae bone grated vertebrae bone the pain was so intense my b/p shot up to 210/140. Likely 1 of my “previous neuro events”. I’ve been to Chiropractors calling themselves Pain Doctors. Had one rural hospital anesthesiologist hang out his shingle as a pain specialist & he gave me 11 epidurals in less than 2 years. Say hello to osteoporosis & osteonecrosis. If the LD didn’t get me, 1 of these MDs would run a close 2nd. Many try to limit their time ‘in room’ (w/ patient) to 10 minutes or less so they can triple book & maintain a suitable profit margin. If I knew where an acceptable QUIT button was I would have punched it a 1,00 times over. A sympathetic GP prescribed Vicodin for me when he could…. I was a grown man crying & whimpering like a baby struggling to get in a piping hot shower for SOME relief!
Then God blessed with a miracle & a truly board certified anesthesiologist with an intense fellowship in Pain management & 3rd generation MD who just happened to have an obsession for wind surfing heard that Corpus Christi, TX was a windsurfers heaven! That was in late 2001 & it (he) saved my life. These are MDs that understand pain & what it does to body, mind & soul. And they treat pain in a multi-faceted approach. In certain flare ups trigger point injections bring things down from a critical level. I have some blown discs & there have been PERIODIC, properly time spaced epidurals & on… And yes there are pain meds. But they have a whole quiver of arrows to draw from. I wore the fentanyl patches for years & they were a godsend. No feeling of narcotic stupor etc… Unfortunately I live in a coastal, extremely high humidity area & they became problematic for me. I now have a med infusion pump that delivers a sustained morphine microgram dosage directly into my spine. We use Cymbalta & Rx NSAIDS for the general body pain but other techniques he has taught me. I am never 100% pain free. I do not need to be & keep my dosages as small as possible to maintain what is an ‘OK’ level for me. Nothing comes completely without side effects & to go high enough to give absolute comfort brings a malaise or drowsiness sometimes so it’s my trade off for staying as spry as I can:)) I also sought out & keep a very good psychiatrist on my team. Pain, depression & other issues are all processed in the same small region of the brain. He also has bio-organic ways of dealing with chronic pain. He is integral in the process & prescribes the Cymbalta & trains me in relaxation techniques & how to improve my sleep. Another piece of the vicious pain cycle.
I cannot say emphatically enough that you need to find a true anesthesiology trained, board certified MD with a Pain Management fellowship & specialty. If you have to drive 400 miles round trip once a month – DO IT! It is hard to express how it will change your life & outlook. Turn some of that frustration & despondency into anger & become 1 tough advocate for yourself. Pain & the stress it manifests is a killer. I can only promise you that there ARE well trained MDs in pain & understand it fully. They are much more common & well trained than even in 2001. Just Google till you find the 1 closest to you & get there. Just this guys 10 cents.

]]> By: Jenna Smith http://www.lymediseaseresource.com/wordpress/the-intesity-of-lyme-pain/comment-page-1/#comment-1264 Jenna Smith Wed, 23 Dec 2009 22:12:07 +0000 http://www.lymediseaseresource.com/wordpress/?p=728#comment-1264 Dearest Casey - You are NOT alone! There are others, like me, who understand completely how you feel right now. I would be dead (suicide) many times over if my husband, family and frielends hadn't stepped up to get me the strongest pain meds available! I realize that many who read this blog are against taking prescription medication for their own personal reasons, and I totally respect each person's individual decision how to manage their own unique disease. You don't have any other choice. Get to a compassionate pain doctor and get on a patch program. The doc will start with the lowest dose (25 mcg?) every three days and increase it as needed - I am on 125 mcg every two days and that keeps me sane and partially functional. You will never be able to recover until the pain is eliminated so you can rest DEEPLY - although even on the major meds I am on I still wake up every time I move in the night due to pain. So I understand. Pain is very relative and some people have a low pain threshold and others a very high pain tolerance - don't compare yourself to anyone else. Your body is unique and special. You deserve to be pain free as your treatment continues (my opinion). Please don't take your life! You will be helping people yourself some day - if anything else, Lyme teaches us compassion for others less fortunate. Email me anytime you need a hand to hold...jennasmith1@gmail.com...please call, and PLEASE go to a pain management doctor asap! Blessings, Jenna Dearest Casey –

You are NOT alone! There are others, like me, who understand completely how you feel right now. I would be dead (suicide) many times over if my husband, family and frielends hadn’t stepped up to get me the strongest pain meds available!

I realize that many who read this blog are against taking prescription medication for their own personal reasons, and I totally respect each person’s individual decision how to manage their own unique disease.

You don’t have any other choice. Get to a compassionate pain doctor and get on a patch program. The doc will start with the lowest dose (25 mcg?) every three days and increase it as needed – I am on 125 mcg every two days and that keeps me sane and partially functional. You will never be able to recover until the pain is eliminated so you can rest DEEPLY – although even on the major meds I am on I still wake up every time I move in the night due to pain.

So I understand. Pain is very relative and some people have a low pain threshold and others a very high pain tolerance – don’t compare yourself to anyone else. Your body is unique and special. You deserve to be pain free as your treatment continues (my opinion).

Please don’t take your life! You will be helping people yourself some day – if anything else, Lyme teaches us compassion for others less fortunate.

Email me anytime you need a hand to hold…jennasmith1@gmail.com…please call, and PLEASE go to a pain management doctor asap!

Blessings,

Jenna

]]> By: Casey Mac http://www.lymediseaseresource.com/wordpress/the-intesity-of-lyme-pain/comment-page-1/#comment-1263 Casey Mac Wed, 23 Dec 2009 18:06:50 +0000 http://www.lymediseaseresource.com/wordpress/?p=728#comment-1263 Hi my name is Casey. It's incredibly painful for me to even type. It's too painful for me to be able to read this blog in it's entirety. So forgive if what I write is off topic or whatever. My quality of life is ZERO that scale or steps to mange pain I read above must have been written by someone who wasn't in chronic pain. Fuck Lyrica it doesn't work. What I am about to say is TRUTH: Someone who is in pain through out their entire body as I AM will understand when i say I think about ENDING IT ALL THE TIME. I am insane with pain every second of every minute of every hour of every day or every week of every month of every year. Boredom is just a word to me, i don't get bored because my mind is fighting the pain ALL THE TIME. If I didn't love my family so much I would have already shot myself in the face. I love life I want to be here but it doesnt seem right for someone to suffer like I do, I should be euthanized. No joke this is exactly how I feel. Doctor's just talk to you, go on to theiir next patient, eat their lunch, make some phone calls and go home at the end of the day to their family. I was just another patient that gets forgotten about and they sleep snug in their beds at night and are comfortable and completely unaware oof the amount of suffering someone like me experiences. I will try to keep up on this blog but am incapable of pretty much everything so I will try........... Hi my name is Casey. It’s incredibly painful for me to even type. It’s too painful for me to be able to read this blog in it’s entirety. So forgive if what I write is off topic or whatever. My quality of life is ZERO that scale or steps to mange pain I read above must have been written by someone who wasn’t in chronic pain. Fuck Lyrica it doesn’t work. What I am about to say is TRUTH: Someone who is in pain through out their entire body as I AM will understand when i say I think about ENDING IT ALL THE TIME. I am insane with pain every second of every minute of every hour of every day or every week of every month of every year. Boredom is just a word to me, i don’t get bored because my mind is fighting the pain ALL THE TIME. If I didn’t love my family so much I would have already shot myself in the face. I love life I want to be here but it doesnt seem right for someone to suffer like I do, I should be euthanized. No joke this is exactly how I feel. Doctor’s just talk to you, go on to theiir next patient, eat their lunch, make some phone calls and go home at the end of the day to their family. I was just another patient that gets forgotten about and they sleep snug in their beds at night and are comfortable and completely unaware oof the amount of suffering someone like me experiences. I will try to keep up on this blog but am incapable of pretty much everything so I will try………..

]]> By: Broken Leg First Aid Stories http://www.lymediseaseresource.com/wordpress/the-intesity-of-lyme-pain/comment-page-1/#comment-1102 Broken Leg First Aid Stories Fri, 06 Nov 2009 14:24:01 +0000 http://www.lymediseaseresource.com/wordpress/?p=728#comment-1102 Hi there, I found your blog via Google while searching for broken leg first aid stories and your post regarding 8217;s Lyme Blog « The Intesity of Lyme Pain looks very interesting for me Hi there, I found your blog via Google while searching for broken leg first aid stories and your post regarding 8217;s Lyme Blog « The Intesity of Lyme Pain looks very interesting for me

]]> By: Bill Garner http://www.lymediseaseresource.com/wordpress/the-intesity-of-lyme-pain/comment-page-1/#comment-623 Bill Garner Tue, 26 May 2009 00:23:55 +0000 http://www.lymediseaseresource.com/wordpress/?p=728#comment-623 I will email you. Another prob I have is I have to have fairly regular, powerful epidurals to keep my lumbar & cervical spine under control. I just had a lumbar epidural on May 1st & there's debate on how long we need to wait until we go in on the cervical. I've shot up 101-12 lbs since the 1st. Steroids no doubt brought on the osteoporosis at age 40. Also the osteonecrosis at top of tibia that will eventually cause joint to collapse & have to have a TKR. But they are calculated risks - w/ the bone issues, the radical testosterone deficiency + all the complicating factors - they are doing all they can to stall surgeries as long as they can. Not a chance I'll come out of the 3-4 section cervical surgery intact. But (esp w/ metabolic issues) small nicks on my skin take too long to heal & scar. Will I be able to recuperate from these surgeries at all? You have to consider; I live alone (beside my 2 beloved dogs) & isolated. Then you have anesthesiologists balking at the severe stroke risks. ie... I may be left w/ only the epidurals & steroid tools for as long as I can hold up. It just doesn't add up. I will email you. Another prob I have is I have to have fairly regular, powerful epidurals to keep my lumbar & cervical spine under control. I just had a lumbar epidural on May 1st & there’s debate on how long we need to wait until we go in on the cervical. I’ve shot up 101-12 lbs since the 1st.
Steroids no doubt brought on the osteoporosis at age 40. Also the osteonecrosis at top of tibia that will eventually cause joint to collapse & have to have a TKR.
But they are calculated risks – w/ the bone issues, the radical testosterone deficiency + all the complicating factors – they are doing all they can to stall surgeries as long as they can. Not a chance I’ll come out of the 3-4 section cervical surgery intact. But (esp w/ metabolic issues) small nicks on my skin take too long to heal & scar. Will I be able to recuperate from these surgeries at all? You have to consider; I live alone (beside my 2 beloved dogs) & isolated. Then you have anesthesiologists balking at the severe stroke risks. ie… I may be left w/ only the epidurals & steroid tools for as long as I can hold up. It just doesn’t add up.

]]> By: Jenna Smith http://www.lymediseaseresource.com/wordpress/the-intesity-of-lyme-pain/comment-page-1/#comment-622 Jenna Smith Mon, 25 May 2009 23:01:10 +0000 http://www.lymediseaseresource.com/wordpress/?p=728#comment-622 Dear Bill- Please don't give up! You are not alone and there are LLDs in Texas that could help you with aggressive therapy...the steroids are disasterous for us Lymies...but I know how you get to that point of desperation...wanting something or someone to take the awful burden of trying to find the path to health while suffering with a disease that impairs your ability to think! I have two names of practitioners in Texas that may be able to help you. If you are interested email me at jenna@LymeDiseaseResource.com Blessings, Jenna Dear Bill-

Please don’t give up! You are not alone and there are LLDs in Texas that could help you with aggressive therapy…the steroids are disasterous for us Lymies…but I know how you get to that point of desperation…wanting something or someone to take the awful burden of trying to find the path to health while suffering with a disease that impairs your ability to think!

I have two names of practitioners in Texas that may be able to help you. If you are interested email me at jenna@LymeDiseaseResource.com

Blessings,

Jenna

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