Guest guest Posted May 3, 2005 Report Share Posted May 3, 2005 Helloooo, Of course, a lot of things can cause a stiff and painful neck, but it is a common trouble spot in Lyme disease. I'd recommend getting tested for Lyme by Igenex Western Blot if you think Lyme is a possibility. My neck is particularly bad. I haven't had good luck with muscle relaxers like Zaniflex, but mostly because my body doesn't tolerate them now. I get relief, though it's never complete, from opiate painkillers I've been prescribed since last July. I started out on a generic form of MS Contin and that was recently replaced by something stronger called " Levorphanol. " Both provide about 30-50% relief on most days (perhaps less when the pain in my neck, lumbar or knees is particularly severe). There's an interesting study I keep meaning to dig up and repost, about how Borrelia burgdorferi can be drawn to pre-existing sites of inflammation along the spine and aggravate damage to discs. My pain specialist points out that the discs are at least as poorly perfused (supplied with blood) as the joints, another favorite target for Lyme, pressumably because the bugs are safer there from antibiotics or the body's own antibodies. Fibromyalgia is a diagnosis of exclusion. Lyme is one of the things that needs to be excluded. I think often it is not tested for, or a poorly sensitive ELISA test is used. With an Igenex Western Blot, your odds of actually excluding (or confirming) Borrelia infection are siginficantly better (but still not 100%). > I have read that the above symptoms are often associated with Lyme > Disease..In the past, I thought the above was due to fibro..and was > treated with Zaniflex, which seems to diminish Substance P..Do any of > you have this symptom and what measures have been effective for you? > and do you think it is more a reflection of LYME? > > TIA.. > > This is the most informative board, ever encountered.. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 3, 2005 Report Share Posted May 3, 2005 Thanks, so much for your expansive reply..I have not, as yet, explored the Lyme angle..so really interested in reading the degree to which you all have explored this area..Yes, I do need to see if that is the source of many of my problems..it is starting to feel that way...have been diagnosed with CFS for numerous years, another wastebasket diagnosis..with severe neurological symptoms..but my pain symptoms are not nearly as severe as yours, ... Interestingly, my father has had similar neck symptoms and Parkinson's Disease (diagnosed by several Neurologists), and he went all the way to the Mayo Clinic..and I believe that they really did not find the true source of his problems..could it be Lyme? He is doing physical therapy, right now, and it is too early to ascertain whether that will be successful...but it is what has been suggested by Mayo and local neurologists. Can one get any doctor to order Igenex, if convinced of the need? We do not have any local, lyme-literate docs..I have been informed that New Mexico has the nearest source. Am I probably going to face a lot of skepticism? TIA!! > [Original Message] > From: Schaafsma <compucruz@...> > <infections > > Date: 5/2/2005 5:47:43 PM > Subject: [infections] Re: Neck Stiffness/Pain > > Helloooo, > > Of course, a lot of things can cause a stiff and painful neck, but it > is a common trouble spot in Lyme disease. I'd recommend getting tested > for Lyme by Igenex Western Blot if you think Lyme is a possibility. > > My neck is particularly bad. I haven't had good luck with muscle > relaxers like Zaniflex, but mostly because my body doesn't tolerate > them now. I get relief, though it's never complete, from opiate > painkillers I've been prescribed since last July. I started out on a > generic form of MS Contin and that was recently replaced by something > stronger called " Levorphanol. " Both provide about 30-50% relief on > most days (perhaps less when the pain in my neck, lumbar or knees is > particularly severe). > > There's an interesting study I keep meaning to dig up and repost, > about how Borrelia burgdorferi can be drawn to pre-existing sites of > inflammation along the spine and aggravate damage to discs. > > My pain specialist points out that the discs are at least as poorly > perfused (supplied with blood) as the joints, another favorite target > for Lyme, pressumably because the bugs are safer there from > antibiotics or the body's own antibodies. > > Fibromyalgia is a diagnosis of exclusion. Lyme is one of the things > that needs to be excluded. I think often it is not tested for, or a > poorly sensitive ELISA test is used. With an Igenex Western Blot, your > odds of actually excluding (or confirming) Borrelia infection are > siginficantly better (but still not 100%). > > > > > > > > I have read that the above symptoms are often associated with Lyme > > Disease..In the past, I thought the above was due to fibro..and was > > treated with Zaniflex, which seems to diminish Substance P..Do any > of > > you have this symptom and what measures have been effective for you? > > and do you think it is more a reflection of LYME? > > > > TIA.. > > > > This is the most informative board, ever encountered.. > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 3, 2005 Report Share Posted May 3, 2005 Hi Carol, yes, any doctor can order an Igenex Western Blot. It may help to persuade them if you relay certain facts: the lab is certified in most states, it is the only lab in the country which checks for multiple strains of borrelia (this was true the last time I checked), and it applies both the CDC's criteria and a second set that are more SPECIFIC for Lyme than the CDC's (less likely to represent a false positive). If you are unable to get anywhere with one doctor, try another. I wound up having to get an out of state friend's doctor to write my lab order, and that one step radically expanded my medical options. (OK, they still suck, but they were REALLY grim before). If you can't get any doctor to write the lab order, write to me off- list and I will see if there is anything further I can do (no promises, but I'll try). Wishing you the best, > > > I have read that the above symptoms are often associated with Lyme > > > Disease..In the past, I thought the above was due to fibro..and was > > > treated with Zaniflex, which seems to diminish Substance P..Do any > > of > > > you have this symptom and what measures have been effective for you? > > > and do you think it is more a reflection of LYME? > > > > > > TIA.. > > > > > > This is the most informative board, ever encountered.. > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 3, 2005 Report Share Posted May 3, 2005 Hi Carol, One possible is poor lymphatic drainage due to infection ...we have lymphatic ducts running from behind the ear to the near centre of the neck ...these are the main detox pathways from the cranium ...massaging along the duct from the ear to the neck does help ...some have found help from small trampolines.... bouncing on one first thing helps quite a bit I'm told..search lymphatic drainage for more info ..Parkinsons is now thought to be infection based . http://www.forme-cfs.co.uk/current_research.html [infections] Re: Neck Stiffness/Pain>> Helloooo,>> Of course, a lot of things can cause a stiff and painful neck, but it > is a common trouble spot in Lyme disease. I'd recommend getting tested > for Lyme by Igenex Western Blot if you think Lyme is a possibility.>> My neck is particularly bad. I haven't had good luck with muscle > relaxers like Zaniflex, but mostly because my body doesn't tolerate > them now. I get relief, though it's never complete, from opiate > painkillers I've been prescribed since last July. I started out on a > generic form of MS Contin and that was recently replaced by something > stronger called "Levorphanol." Both provide about 30-50% relief on > most days (perhaps less when the pain in my neck, lumbar or knees is > particularly severe).>> There's an interesting study I keep meaning to dig up and repost, > about how Borrelia burgdorferi can be drawn to pre-existing sites of > inflammation along the spine and aggravate damage to discs.>> My pain specialist points out that the discs are at least as poorly > perfused (supplied with blood) as the joints, another favorite target > for Lyme, pressumably because the bugs are safer there from > antibiotics or the body's own antibodies.>> Fibromyalgia is a diagnosis of exclusion. Lyme is one of the things > that needs to be excluded. I think often it is not tested for, or a > poorly sensitive ELISA test is used. With an Igenex Western Blot, your > odds of actually excluding (or confirming) Borrelia infection are > siginficantly better (but still not 100%).>> >>>> > > I have read that the above symptoms are often associated with Lyme > > Disease..In the past, I thought the above was due to fibro..and was > > treated with Zaniflex, which seems to diminish Substance P..Do any > of > > you have this symptom and what measures have been effective for you? > > and do you think it is more a reflection of LYME?> > > > TIA..> > > > This is the most informative board, ever encountered..>>>>>>> > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 3, 2005 Report Share Posted May 3, 2005 --- In infections , " carol grahm " Just to say that I have had some really bad bouts of this symptom and it has been so painful and debilitating but I managed to get rid of it within 4 days when I started taking 1 tablespoon first thing in the morning of a good Cod Liver Oil, plus I started sitting in the sun for around 20 minutes daily to raise my Vitamin D. I couldn't believe how successful this was and how quickly it worked. I should add that I have been taking a variety of supplements and herbs for many years but these didn't stop the neck pain from deveoping. I used to have knots along the neck/shoulder muscles and these were agony but it was such a relief to be rid of them. Pam Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 3, 2005 Report Share Posted May 3, 2005 Interesting My neck went stiff from the start, or when that eased down too weak to hold my head. There are some structural problems there but even so not enough to explain all that is going on. When I had a respnonse to breaking through the fibrin it was followed by retaining lots of fluid and awful bodywide inflamation, I blew up like a baloon and could barely move. Soon after this the fluid would not drain form my ears, 7 months of low dose doxy kept the subsequent infections under control but nothing helped the fluid to drain. I asked my acupuncturist to treat it, one week of throwing up and lots of other horrid symptoms, then the fluid in my ears drained. I use a rebounder for the health bounce to increase lymphatic drainage, though unless someone else provides the bounce I cannot reach anything like the recommended 2 minutes. Unfortunately using it has caused my ears to block up again, can't win them all I guess. Hopefully my acupuncturist will come up trumps again. I do feel part of the problem is my spine, including the cervical spine. As I get stronger, and my muscles more able to tolerate exercise, I am hoping bouncing will help rebuild both my stamina and central core strength. Cheers, Tansy > > > I have read that the above symptoms are often associated with Lyme > > > Disease..In the past, I thought the above was due to fibro..and was > > > treated with Zaniflex, which seems to diminish Substance P..Do any > > of > > > you have this symptom and what measures have been effective for you? > > > and do you think it is more a reflection of LYME? > > > > > > TIA.. > > > > > > This is the most informative board, ever encountered.. > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 3, 2005 Report Share Posted May 3, 2005 Very interesting, ..When my sleep-deprived, exhausted brain can take in more (most of my pain does seem centered within the upper shoulder and neck area)..will give it my full attention. In the mean time, can anyone tell me if the Western Blot Igenex test will accurately diagnose someone who has had, possibly, the neurological borreliosis for over twenty years? (seems to, accurately, refect my symptomalogy)..I have an appointment with doc coming up, soon, and would like to ask about having it performed. Also, how do you find out the cost? TIA to all, Carol [infections] Re: Neck Stiffness/Pain>> Helloooo,>> Of course, a lot of things can cause a stiff and painful neck, but it > is a common trouble spot in Lyme disease. I'd recommend getting tested > for Lyme by Igenex Western Blot if you think Lyme is a possibility.>> My neck is particularly bad. I haven't had good luck with muscle > relaxers like Zaniflex, but mostly because my body doesn't tolerate > them now. I get relief, though it's never complete, from opiate > painkillers I've been prescribed since last July. I started out on a > generic form of MS Contin and that was recently replaced by something > stronger called "Levorphanol." Both provide about 30-50% relief on > most days (perhaps less when the pain in my neck, lumbar or knees is > particularly severe).>> There's an interesting study I keep meaning to dig up and repost, > about how Borrelia burgdorferi can be drawn to pre-existing sites of > inflammation along the spine and aggravate damage to discs.>> My pain specialist points out that the discs are at least as poorly > perfused (supplied with blood) as the joints, another favorite target > for Lyme, pressumably because the bugs are safer there from > antibiotics or the body's own antibodies.>> Fibromyalgia is a diagnosis of exclusion. Lyme is one of the things > that needs to be excluded. I think often it is not tested for, or a > poorly sensitive ELISA test is used. With an Igenex Western Blot, your > odds of actually excluding (or confirming) Borrelia infection are > siginficantly better (but still not 100%).>> >>>> > > I have read that the above symptoms are often associated with Lyme > > Disease..In the past, I thought the above was due to fibro..and was > > treated with Zaniflex, which seems to diminish Substance P..Do any > of > > you have this symptom and what measures have been effective for you? > > and do you think it is more a reflection of LYME?> > > > TIA..> > > > This is the most informative board, ever encountered..>>>>>>> > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 3, 2005 Report Share Posted May 3, 2005 I think the cost is a little under 300 USD or was it 200? And I believe some have difficulty getting insurance to cover any/all of it. I think mine was about 1/2-covered. I think the sensitivity of the test is indeed an issue. It measures your antibody reactions (seroreactivity), and its seems that seropositivity can be iffy in both borreliosis and syphilis. I wouldnt know how to quantify the sensitivity of the IGeneX WB in particular, because it is known to be somewhat more sensitive than most WBs... in short, no well-demonstrated test can give an absolute diagnosis (alas). There is a test that seeks to demonstrate the bacterium directly using fluorescent antibody (Bowen)... there is some controversy regarding that since they seem not to explicitly attest *any* negative results in anyone. This may be due to near-universal human infection, with asymptomatic persons perhaps infected with a non-virulent strain whose presence (in low amounts) sustains partial immunity to virulent-strains (roughly like a vaccine). Or that could be totally wrong - no one knows today. At any rate as a practical matter the number of doctors who will be satisfied by the Bowen test at this point is probably low. It is not FDA-approved for diagnosostic purposes - I dont think IGeneX is either, but IGeneX and in some cases Bowen enjoy the esteem of the set of doctors that frequently treat chronic lyme, and of some others. At any rate the " accepted standard " screening, ELISA followed by WB in case of positive ELISA, is certainly rediculously inadeqaute (except its totally not funny). Let me know if thats not confusing enough ...long story short, theres no absolute or nigh-absolute test. > Very interesting, ..When my sleep-deprived, exhausted brain can take in more (most of my pain does seem centered within the upper shoulder and neck area)..will give it my full attention. > > In the mean time, can anyone tell me if the Western Blot Igenex test will accurately diagnose someone who has had, possibly, the neurological borreliosis for over twenty years? (seems to, accurately, refect my symptomalogy)..I have an appointment with doc coming up, soon, and would like to ask about having it performed. Also, how do you find out the cost? > > TIA to all, > Carol Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 3, 2005 Report Share Posted May 3, 2005 WOW, thanks for the effort..but as usual, nothing is simple...or certain, but thanks for many sides of the argument. Alas, is Samento considered effective for Borreglia? Going into antibiotic treatment, not knowing what is being targeted gives me much pause..I have used OLE, Transfer Factor, Anticoagulants. amd a whole slew of other nutritional supplements, but the neurological component is the least resistant for positive outcome. TIA > [Original Message] > From: Hodologica <usenethod@...> > <infections > > Date: 5/3/2005 11:35:36 AM > Subject: [infections] Re: Neck Stiffness/Pain > > I think the cost is a little under 300 USD or was it 200? And I > believe some have difficulty getting insurance to cover any/all of it. > I think mine was about 1/2-covered. > > I think the sensitivity of the test is indeed an issue. It measures > your antibody reactions (seroreactivity), and its seems that > seropositivity can be iffy in both borreliosis and syphilis. I wouldnt > know how to quantify the sensitivity of the IGeneX WB in particular, > because it is known to be somewhat more sensitive than most WBs... in > short, no well-demonstrated test can give an absolute diagnosis (alas). > > There is a test that seeks to demonstrate the bacterium directly using > fluorescent antibody (Bowen)... there is some controversy regarding > that since they seem not to explicitly attest *any* negative results > in anyone. This may be due to near-universal human infection, with > asymptomatic persons perhaps infected with a non-virulent strain whose > presence (in low amounts) sustains partial immunity to > virulent-strains (roughly like a vaccine). Or that could be totally > wrong - no one knows today. > > At any rate as a practical matter the number of doctors who will be > satisfied by the Bowen test at this point is probably low. It is not > FDA-approved for diagnosostic purposes - I dont think IGeneX is > either, but IGeneX and in some cases Bowen enjoy the esteem of the set > of doctors that frequently treat chronic lyme, and of some others. At > any rate the " accepted standard " screening, ELISA followed by WB in > case of positive ELISA, is certainly rediculously inadeqaute (except > its totally not funny). > > Let me know if thats not confusing enough ...long story short, > theres no absolute or nigh-absolute test. > > > > > Very interesting, ..When my sleep-deprived, exhausted brain can > take in more (most of my pain does seem centered within the upper > shoulder and neck area)..will give it my full attention. > > > > In the mean time, can anyone tell me if the Western Blot Igenex > test will accurately diagnose someone who has had, possibly, the > neurological borreliosis for over twenty years? (seems to, accurately, > refect my symptomalogy)..I have an appointment with doc coming up, > soon, and would like to ask about having it performed. Also, how do > you find out the cost? > > > > TIA to all, > > Carol > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 3, 2005 Report Share Posted May 3, 2005 Likewise ,your symptoms are interesting , wow, traumatic or what ..reading the list , I wonder if you would relate to "Cushing syndrome" http://www.medhelp.org/www/nadf4.htm we are steered towards this with our inappropriate immune response ..what do you think?... -----Original Message-----From: infections [mailto:infections ]On Behalf Of tansyapSent: 03 May 2005 14:46infections Subject: [infections] Re: Neck Stiffness/Pain Interesting My neck went stiff from the start, or when that eased down too weak to hold my head. There are some structural problems there but even so not enough to explain all that is going on. When I had a respnonse to breaking through the fibrin it was followed by retaining lots of fluid and awful bodywide inflamation, I blew up like a baloon and could barely move. Soon after this the fluid would not drain form my ears, 7 months of low dose doxy kept the subsequent infections under control but nothing helped the fluid to drain.I asked my acupuncturist to treat it, one week of throwing up and lots of other horrid symptoms, then the fluid in my ears drained.I use a rebounder for the health bounce to increase lymphatic drainage, though unless someone else provides the bounce I cannot reach anything like the recommended 2 minutes. Unfortunately using it has caused my ears to block up again, can't win them all I guess. Hopefully my acupuncturist will come up trumps again.I do feel part of the problem is my spine, including the cervical spine. As I get stronger, and my muscles more able to tolerate exercise, I am hoping bouncing will help rebuild both my stamina and central core strength.Cheers, Tansy> > > I have read that the above symptoms are often associated with Lyme> > > Disease..In the past, I thought the above was due to fibro..and was> > > treated with Zaniflex, which seems to diminish Substance P..Do any> > of> > > you have this symptom and what measures have been effective for you?> > > and do you think it is more a reflection of LYME?> > >> > > TIA..> > >> > > This is the most informative board, ever encountered..> >> >> >> >> >> >> >> > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 3, 2005 Report Share Posted May 3, 2005 Hi Must admit I get totally confused over the HPA in my case, even more so during my last prolonged herx when it was like being hyperthyroid, only worse than at any other time. What I did become aware of years before the neuroborreliosis was Dx was how much the symptoms related to the HPA, along with everything else, cycled; so much so I learned to wait most of the symptoms out because eventually they would lessen or go to the other extreme. In the summer of 2003 I did the 24 hour saliva test, my cortisol was typically low am and noon, in the middle of the range 4pm and midnight, DHEAs low am, high end of normal noon, then mid range again. This was when I was having typical hyperthryoid symptoms during a heat wave. It does not look like clear cut Cushings, thanks for that link though it has given me more food for thought. My GP is as foxed as I over all this but with things as they are in the UK just now, we're both going by guess work most of the time. I have distinct neuropathic issues specific to some of the cranial nerves so I do wonder if its neurological in origin, ie the nerves controlling the thryoid etc. The best description that matches my reaction when I broke down the fibrin was septic shock as against toxic, allergy, or coagulation (the latter two were considered possible risks in my case). I just think, like my herxes, it caused too high a load being released too fast for my body to cope with. My initial candida die offs years ago were a breeze by comparison. I have no doubt our immune responses are part of the symptomology we each have, sometimes mine seems to go into overdrive without being too successful, then at other times seems very low. Others describe their immune responses in similar terms. These illnesses are often referred to as autoimmune even though we may not produce the specific autoantibodies that define recognised AI illnesses. Intracellular pathogens would explain this. I was misDx with SLE due to raised DNA binding, told them it was just my IS doing its job, was eventually convinced otherwise. The steroids were a disaster: the candida, and what I now know is neuroborreliosis, bit back with a vengeance. Wouldn't it be great to have a simple explanation and equally simple solution. Cheers, Tansy > > > > I have read that the above symptoms are often associated with > Lyme > > > > Disease..In the past, I thought the above was due to > fibro..and was > > > > treated with Zaniflex, which seems to diminish Substance > P..Do any > > > of > > > > you have this symptom and what measures have been effective > for you? > > > > and do you think it is more a reflection of LYME? > > > > > > > > TIA.. > > > > > > > > This is the most informative board, ever encountered.. > > > > > > > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
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