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Symptoms this is too Brutal
For a while now I have had these symptoms. They have to be the most uncomfortable I could ever imagine. I am wondering if anyone has similar stories? I had an Igenex test not too long ago that appeared to show infection. Doctor wants me to test again soon.
I get woken up after about 4-5hrs no matter what time I go to bed. Major ear pressure with ringing in ears. I feel chilled to the bone and cannot get warm. I have major nerve pain like something is crawling under my skin (no pun intended) in arms and shoulders. I cannot relax my body it feels completely out of whack.
Any similar stories, or ideas here? Thanks!
I get woken up after about 4-5hrs no matter what time I go to bed. Major ear pressure with ringing in ears. I feel chilled to the bone and cannot get warm. I have major nerve pain like something is crawling under my skin (no pun intended) in arms and shoulders. I cannot relax my body it feels completely out of whack.
Any similar stories, or ideas here? Thanks!
Great news! Thanks for letting us know. I've been avoiding doxy, so this is encouraging.
Just wanted to say thanks for all the great insight! These forums and you all, keep me and others going after battling day after day.
A few days ago I started the Doxy and that next morning the numbness and tingling was gone and has been gone since taking. I will keep praying.
Lets keep in touch and Have a great weekend!
A few days ago I started the Doxy and that next morning the numbness and tingling was gone and has been gone since taking. I will keep praying.
Lets keep in touch and Have a great weekend!
Bartonella is known to neurological problems. I recommend looking at Galaxy Diagnostics if you want to be tested. It's a new company, but has the most sensitive test if you want to know for sure. Look them up... they were featured in my local newspaper recently
That is some very great information...thanks so much!
It is so nice having the support of others that know how you feel.
I need to just trust that I do have it, and treat it accordingly. This should be the hard part.
I also have thyroid issues. Started shortly after a major accident. Dx with Hashi's and later found small nodule on left lobe that was removed.
22dreams - a little off subject, but I am assuming you are on thyroid meds. If so, what are you taking? I am on Nature Thyroid and they have changed the formula where my FT3 is super high and my FT4 is way low. I need a new dessicated!
Thank you!!
It is so nice having the support of others that know how you feel.
I need to just trust that I do have it, and treat it accordingly. This should be the hard part.
I also have thyroid issues. Started shortly after a major accident. Dx with Hashi's and later found small nodule on left lobe that was removed.
22dreams - a little off subject, but I am assuming you are on thyroid meds. If so, what are you taking? I am on Nature Thyroid and they have changed the formula where my FT3 is super high and my FT4 is way low. I need a new dessicated!
Thank you!!
oh, and Fuel, the "creepy crawlies" under the skin is evidently pretty common. I went to a new LLMD a couple months ago and that is how I described it to her ("occasional creepy crawlies") and she didn't miss a beat. She knew exactly what I was talking about. They used to be far more frequent.
Ear pressure and ringing are common too, as Jackie mentioned. I still sometimes have "thumping" in my ears.If you are always cold you may want to track your body temperature upon waking and one other time during the day. At one point my body temperature was down around 95.1-95.5 consistently. Some say lyme can do that but the lyme also triggered Hashimoto's (autoimmune thyroid disease) in me. My thyroid antibodies were very low but still there, although conventional tests were "within normal limits", the Md started treating it regardless and my body temperature rose and has stayed a couple degrees or so higher. I'm not freezing all the time. I still feel I'm being under-treated for it but can't afford the out-of-pocket thyroid specialist in the area who acknowledges hidden thyroid conditions. Hidden from standardized testing that cropped up in the early 1970s.
Ear pressure and ringing are common too, as Jackie mentioned. I still sometimes have "thumping" in my ears.If you are always cold you may want to track your body temperature upon waking and one other time during the day. At one point my body temperature was down around 95.1-95.5 consistently. Some say lyme can do that but the lyme also triggered Hashimoto's (autoimmune thyroid disease) in me. My thyroid antibodies were very low but still there, although conventional tests were "within normal limits", the Md started treating it regardless and my body temperature rose and has stayed a couple degrees or so higher. I'm not freezing all the time. I still feel I'm being under-treated for it but can't afford the out-of-pocket thyroid specialist in the area who acknowledges hidden thyroid conditions. Hidden from standardized testing that cropped up in the early 1970s.
Most doctors look at Vitamin d deficiency and want to blast it with supplementation or prescription. As Jackie said, it's actually not a vitamin and who knows what we're really doing when we supplement in high doses.
There's another set of doctors who look at the body, when it's presented with disease, that it becomes deficient as an attempt at trying to remain in statis.
IOW: that Disease(s) CAUSES vitamin d deficiency not that the deficiency is the cause of disease which is a common theme in western medicine. I see articles nearly every day with vitamin D deficiency being found with this or that condition, so it's not just lyme.
Over time of course if the cause of disease is not dealt with the continued deficiency has repercussions. That is why a # of Mds will go down the middle and supplement with D3 only.
Hard to wrap one's head around.
and for me, Insomnia was the first overt sign that I had lyme. I've heard many people say that insomnia preceded other symptoms. I also read a doctor's observation that "tense" muscles are found in lyme patients, tense, tight compared to someone without lyme. I neglected to bookmark it though so can't provide the link. I, myself, feel that way. "never fully relaxed" physically so I understand what you are talking about. Even after sleeping, meditating etc, the muscle that are capable of being tense still are. Not the same as I used to be. This a symptom I overlook.
I say "capable of being tense" because I also have what to me is muscle waste but I think that has to do with lack of nerve conductivity with having neurolyme. We need to function neurologically to have healthy, functioning muscles. Alternately, I know someone else with neuro-lyme and she's actually had the opposite effect, high muscle tone despite being bedridden etc. Tick-borne diseases are so very bizarre. The human body is more complex than the simple box that most GPs, specialists and MDs in general want to put it in.
It is so hard for people to believe that a little bug, and even smaller bacteria within a bug can cause such things.
A good watch is a recent NH program on lyme in that state. Someone in the piece actually made that same statement.
It's well-produced and is in 6 parts and shows or describes a couple pretty severe cases but on the bright side that people do get better with treatment. One of the doctors in it, I believe, his own daughter went blind & was bedridden before dx, and he is interviewed among a few others Mds.
Pt 1:
http://www.wmur.com/video/24259080/index.html
There's another set of doctors who look at the body, when it's presented with disease, that it becomes deficient as an attempt at trying to remain in statis.
IOW: that Disease(s) CAUSES vitamin d deficiency not that the deficiency is the cause of disease which is a common theme in western medicine. I see articles nearly every day with vitamin D deficiency being found with this or that condition, so it's not just lyme.
Over time of course if the cause of disease is not dealt with the continued deficiency has repercussions. That is why a # of Mds will go down the middle and supplement with D3 only.
Hard to wrap one's head around.
and for me, Insomnia was the first overt sign that I had lyme. I've heard many people say that insomnia preceded other symptoms. I also read a doctor's observation that "tense" muscles are found in lyme patients, tense, tight compared to someone without lyme. I neglected to bookmark it though so can't provide the link. I, myself, feel that way. "never fully relaxed" physically so I understand what you are talking about. Even after sleeping, meditating etc, the muscle that are capable of being tense still are. Not the same as I used to be. This a symptom I overlook.
I say "capable of being tense" because I also have what to me is muscle waste but I think that has to do with lack of nerve conductivity with having neurolyme. We need to function neurologically to have healthy, functioning muscles. Alternately, I know someone else with neuro-lyme and she's actually had the opposite effect, high muscle tone despite being bedridden etc. Tick-borne diseases are so very bizarre. The human body is more complex than the simple box that most GPs, specialists and MDs in general want to put it in.
It is so hard for people to believe that a little bug, and even smaller bacteria within a bug can cause such things.
A good watch is a recent NH program on lyme in that state. Someone in the piece actually made that same statement.
It's well-produced and is in 6 parts and shows or describes a couple pretty severe cases but on the bright side that people do get better with treatment. One of the doctors in it, I believe, his own daughter went blind & was bedridden before dx, and he is interviewed among a few others Mds.
Pt 1:
http://www.wmur.com/video/24259080/index.html
I'm on the fence about Vitamin D levels. There are conflicting schools of thought on whether low Vit D should be treated or not ... I know there are lots of people who take Vit D supplements, and I've had a doctor or two tell me to take them. But I also read that Vit D isn't really a vitamin, but instead is an immune system suppressor...and I can't quite wrap my head around why I would want to suppress my immune system. So I get a little sun when I can, and let my body decide how much Vit D it wants to make. If my Vit D levels are technically low, then maybe my immune system is ramped up for a reason. Very confusing!
Let us know how you go and what you hear back on your tests --
Let us know how you go and what you hear back on your tests --
Thanks for the info... I started another round of Doxy and liver/kidney supps.
I will look into the book, sounds interesting.
Also, I was looking back at some of my blood work and Mg seemed fine, however Jackie explained why this can be. I do have really low Vit D...which looks to have something to doing with Lymes, or malabsorption.
I am also waiting on my Ion Test that my Doc suggested from Metametrix. This is supposed to show where there are break downs in how you body is working and using fatty acids, minerals, etc.
Thanks lets keep in touch!
I will look into the book, sounds interesting.
Also, I was looking back at some of my blood work and Mg seemed fine, however Jackie explained why this can be. I do have really low Vit D...which looks to have something to doing with Lymes, or malabsorption.
I am also waiting on my Ion Test that my Doc suggested from Metametrix. This is supposed to show where there are break downs in how you body is working and using fatty acids, minerals, etc.
Thanks lets keep in touch!
I also had a mental block to the possibility that infections could wreak so much havoc. I've been treating for about 20 months, so obviously 3 weeks didn't cut it for me. I'm past the worst of it, but still get knocked around by this disease. Nasty, nasty stuff.
I'd suggest borrowing "Cure Unknown" by P. Weintraub from your library, or considering buying a paperback copy (which is pretty cheap on Amazon, ~$10 last I knew). It's a good mix of technical detail, history, and personal stories about Lyme disease. Reading it helped me in accepting the reality of my situation.
I'd suggest borrowing "Cure Unknown" by P. Weintraub from your library, or considering buying a paperback copy (which is pretty cheap on Amazon, ~$10 last I knew). It's a good mix of technical detail, history, and personal stories about Lyme disease. Reading it helped me in accepting the reality of my situation.
I agree with Wonko, try some magnesium supplements (you might want to check with your MD first). I had Lyme and Babesiosis and was very ill from it ... confusion, fatigue, and bad muscle aches were the first symptoms, and then heart irregularities and palpitations kicked in. I learned later that Lyme bacteria use magnesium in their reproductive cycle, and after a while, they use up so much of your body's stores of Mg that you get problems with muscle cramps, including that big muscle called your heart. Mg is needed to conduct the tiny electrical signals that tell muscles when to contract (which in your heart is a heartbeat.)
Other problem with this situation, so I've read: most of your body's magnesium (Mg) is stored inside your cells (intracellular), and it comes out of the cells into your bloodstream only when needed, in order to keep your blood levels of Mg stable. Over time, as the Lyme bacteria are using up the Mg in your blood stream, the stores of Mg inside your cells are getting lower and lower as your body clears out the stored Mg to keep the blood levels where they should be... until the stored Mg runs out, and then you get muscle and heart problems. While this is happening, blood tests of your Mg levels will continue to show normal, because the tests measure only what is in your blood and not what is inside your cells. When the cellular stores finally run low, eventually your blood will show low levels, but that's when your heart starts acting up. I have read that any Mg supplement ending in "-ate" is all right for these purposes. I am currently taking Mg citrate, have taken Mg malate in the past.
My two trips to an ER in a week in neither case gave me an appropriate diagnosis. One MD suspected something was out of whack, but he didn't know what. The other MD, after calling my internist, threw me out of the ER. I still owe a few MDs some instructive letters on those adventures.
This is a long way of saying, there is not a lot of recognition of the magnesium-lowering effects of Lyme, and the tests don't show low levels until you're nearly out. Magnesium supps are what I used, but you should check with your MD on all this. I'm not medically trained, just telling you what I learned the hard way.
I too have had problems with chills, and with irregular sleeping patterns, and with muscle aches and cramps, and so on. And tinnitus (ringing ears). It will get better once you get treated. What is your MD waiting for to begin treatment? Lyme is supposed to be a clinical diagnosis (that is, based on symptoms), supported and informed by test results, not the other way around, since the tests are notoriously imprecise, missing a fair number of true infections. At least your MD ordered Igenex tests! Many MDs sneer at Igenex as quackery.
My suggestion: go back to your doc and tell him/her about the cramps and so on and ask what he's waiting for. Lyme doesn't just go away by itself, and not even the CDC/IDSA people say anything to the contrary -- they just believe in shorter treatment than LLMDs do.
Separate tests are needed to determine if you have coinfections like Babesiosis, Bartonella, Ehrlichiosis, etc. If your MD is not up to date on these things, I'd be looking for a new MD, while you continue to see your current MD. I know it's hard to manage when you feel so awful, but do what you can and when you can.
Let us know how you do, okay? Hang in there. We've all been pretty sick too, and come a very long way from where you are now. Best wishes --
Other problem with this situation, so I've read: most of your body's magnesium (Mg) is stored inside your cells (intracellular), and it comes out of the cells into your bloodstream only when needed, in order to keep your blood levels of Mg stable. Over time, as the Lyme bacteria are using up the Mg in your blood stream, the stores of Mg inside your cells are getting lower and lower as your body clears out the stored Mg to keep the blood levels where they should be... until the stored Mg runs out, and then you get muscle and heart problems. While this is happening, blood tests of your Mg levels will continue to show normal, because the tests measure only what is in your blood and not what is inside your cells. When the cellular stores finally run low, eventually your blood will show low levels, but that's when your heart starts acting up. I have read that any Mg supplement ending in "-ate" is all right for these purposes. I am currently taking Mg citrate, have taken Mg malate in the past.
My two trips to an ER in a week in neither case gave me an appropriate diagnosis. One MD suspected something was out of whack, but he didn't know what. The other MD, after calling my internist, threw me out of the ER. I still owe a few MDs some instructive letters on those adventures.
This is a long way of saying, there is not a lot of recognition of the magnesium-lowering effects of Lyme, and the tests don't show low levels until you're nearly out. Magnesium supps are what I used, but you should check with your MD on all this. I'm not medically trained, just telling you what I learned the hard way.
I too have had problems with chills, and with irregular sleeping patterns, and with muscle aches and cramps, and so on. And tinnitus (ringing ears). It will get better once you get treated. What is your MD waiting for to begin treatment? Lyme is supposed to be a clinical diagnosis (that is, based on symptoms), supported and informed by test results, not the other way around, since the tests are notoriously imprecise, missing a fair number of true infections. At least your MD ordered Igenex tests! Many MDs sneer at Igenex as quackery.
My suggestion: go back to your doc and tell him/her about the cramps and so on and ask what he's waiting for. Lyme doesn't just go away by itself, and not even the CDC/IDSA people say anything to the contrary -- they just believe in shorter treatment than LLMDs do.
Separate tests are needed to determine if you have coinfections like Babesiosis, Bartonella, Ehrlichiosis, etc. If your MD is not up to date on these things, I'd be looking for a new MD, while you continue to see your current MD. I know it's hard to manage when you feel so awful, but do what you can and when you can.
Let us know how you do, okay? Hang in there. We've all been pretty sick too, and come a very long way from where you are now. Best wishes --
Yes, muscles feel tense. You know how when things are right, you can take some deep breathes and feel your muscles relax...I cannot do that usually ever.
I am not doing any treatment as of now. I did a 3 week Doxy a few months ago. I have everything to do another round, but am contemplating taking all the pills. (Doxy, kidney supp, liver, supp, multi...etc) It is so hard for me to think that this is all related to a little bug!
I am not sure about co-infections. My gut says yes, I think so, but who knows.
Usually, I don't have the symptoms this bad unless I have a physical day...I didn't do anything yesterday, so I am very confused.
I am not doing any treatment as of now. I did a 3 week Doxy a few months ago. I have everything to do another round, but am contemplating taking all the pills. (Doxy, kidney supp, liver, supp, multi...etc) It is so hard for me to think that this is all related to a little bug!
I am not sure about co-infections. My gut says yes, I think so, but who knows.
Usually, I don't have the symptoms this bad unless I have a physical day...I didn't do anything yesterday, so I am very confused.
I have not experience the major chills that you describe. Do you also have a fever, or are you getting sweats?
When you say that you can't relax your body, do you mean your muscles feel tense? Many Lyme patients feel (at least a bit) better supplementing magnesium (chelate or citrate forms are adsorbed better than the oxide MgO). I don't understand the details of how, but magnesium can help with muscle twitches and cramping.
I went through a phase where I could not sleep long before symptoms would interrupt and wake me up, it actually took me a long time with treatment before I started to sleep restfully again. Very hard, since the body is so exhausted from the illness. I also had stabbing ear pain and tinnitus, though for me my ears only starting to ring when I was lying down (somehow I guess the pressure in my head changed with posture?).
Do you have co-infections? Babesia can cause sweats (which might be related to your chills) and Bartonella can cause ear symptoms (or at least that is how my LLMD explained my ear symptoms to me).
What treatment are you on at this time? Do you think your worsening is a Herxheimer reaction, or do you just feel like your illness is flaring?
Hang in there.
When you say that you can't relax your body, do you mean your muscles feel tense? Many Lyme patients feel (at least a bit) better supplementing magnesium (chelate or citrate forms are adsorbed better than the oxide MgO). I don't understand the details of how, but magnesium can help with muscle twitches and cramping.
I went through a phase where I could not sleep long before symptoms would interrupt and wake me up, it actually took me a long time with treatment before I started to sleep restfully again. Very hard, since the body is so exhausted from the illness. I also had stabbing ear pain and tinnitus, though for me my ears only starting to ring when I was lying down (somehow I guess the pressure in my head changed with posture?).
Do you have co-infections? Babesia can cause sweats (which might be related to your chills) and Bartonella can cause ear symptoms (or at least that is how my LLMD explained my ear symptoms to me).
What treatment are you on at this time? Do you think your worsening is a Herxheimer reaction, or do you just feel like your illness is flaring?
Hang in there.
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