Aa
Undiagnosed
Hello,
I need a little help figuring out some really strange symptoms that have bothered me for several months now. I started with hand tingling, which has now spread to my arms, legs, tongue and head. At this point I have full body head to toe tingles continuously, with varying degrees of sensations. Along with the tingles, I have had bugs or worms crawling on me sensations that literally kept me awake at night.
In March, I completely lost my appetite for three weeks, and at the same time had a golfball sized lump feeling in my throat. It was a little hard to swallow. After losing 15 pounds in three weeks (Bonus!), my appetite came back, the lump went away, and then I noticed when I swallowed I could only feel one side of my throat muscles.
Then I had an electric shock I described as an intense and forceful, buzzing electrical shock that ran from the crown of my head down to my tailbone. I noticed my ears were ringing more often, I kept looking for new reading glasses, and had a few new muscle jerks in my arms and legs.
Several weeks ago, I nearly passed out three times at home and once at yoga class within a 2 week period. At that yoga class I noticed when we were lying flat on our mats on the floor, I was leaning far to the left and could't use the top of my left leg muscles to push myself back to centered. It was an eerie feeling and I thought stroke ? And of ignored it and moved on (life is so busy).
The muscle jerking is uncomfortable and inconvient at this point and seems to happen when I am about to do something. If I am working and about to move my mouse, my arm may jerk uncontrollably.
Everything seemed to escalate to a point in June. My left leg seemed to be weaker and my left foot didnt want to pick up like usual. I actually tripped and fell flat on my stomach while running. Then, my left knee didnt want to lock. My lightheadedness went from occasionally to continuously and the ringing in my ears is conituous as well. I am asking my kids to look at me when they talk to me. I kept having to hold onto things around my home because of dizziness and lightheadedness when I turned too quickly, and had to keep side-stepping to keep from falling over while I was bumping into doorways.
For seveal months I felt as though I were standing on a buzzing wire that was so uncomfortable that I dropped between 15-20 lbs int he month of May without trying. And yes I know that's not healthy weight loss. Now, however, it is either going away or I'm getting used to it.
And finally, after a hot shower several weeks ago, I literally could not walk for about 30 mintues until my left leg would work again and my right leg cramps went away. This was the culmination of several months of all of these symptoms which have all but completely subsided at this point. Now I have that constant ear ringing, prickly tingling, episodes of lightheadedness and a light buzzing on my insides. Still no appetite and still down an easy 20 lbs from May.
My PCP ordered an MRI of the head which was negative. Now I am waiting to see the Neurologist but still don't have an appoinment scheduled as they are supposed to call me.
Thanks,
Marell
I need a little help figuring out some really strange symptoms that have bothered me for several months now. I started with hand tingling, which has now spread to my arms, legs, tongue and head. At this point I have full body head to toe tingles continuously, with varying degrees of sensations. Along with the tingles, I have had bugs or worms crawling on me sensations that literally kept me awake at night.
In March, I completely lost my appetite for three weeks, and at the same time had a golfball sized lump feeling in my throat. It was a little hard to swallow. After losing 15 pounds in three weeks (Bonus!), my appetite came back, the lump went away, and then I noticed when I swallowed I could only feel one side of my throat muscles.
Then I had an electric shock I described as an intense and forceful, buzzing electrical shock that ran from the crown of my head down to my tailbone. I noticed my ears were ringing more often, I kept looking for new reading glasses, and had a few new muscle jerks in my arms and legs.
Several weeks ago, I nearly passed out three times at home and once at yoga class within a 2 week period. At that yoga class I noticed when we were lying flat on our mats on the floor, I was leaning far to the left and could't use the top of my left leg muscles to push myself back to centered. It was an eerie feeling and I thought stroke ? And of ignored it and moved on (life is so busy).
The muscle jerking is uncomfortable and inconvient at this point and seems to happen when I am about to do something. If I am working and about to move my mouse, my arm may jerk uncontrollably.
Everything seemed to escalate to a point in June. My left leg seemed to be weaker and my left foot didnt want to pick up like usual. I actually tripped and fell flat on my stomach while running. Then, my left knee didnt want to lock. My lightheadedness went from occasionally to continuously and the ringing in my ears is conituous as well. I am asking my kids to look at me when they talk to me. I kept having to hold onto things around my home because of dizziness and lightheadedness when I turned too quickly, and had to keep side-stepping to keep from falling over while I was bumping into doorways.
For seveal months I felt as though I were standing on a buzzing wire that was so uncomfortable that I dropped between 15-20 lbs int he month of May without trying. And yes I know that's not healthy weight loss. Now, however, it is either going away or I'm getting used to it.
And finally, after a hot shower several weeks ago, I literally could not walk for about 30 mintues until my left leg would work again and my right leg cramps went away. This was the culmination of several months of all of these symptoms which have all but completely subsided at this point. Now I have that constant ear ringing, prickly tingling, episodes of lightheadedness and a light buzzing on my insides. Still no appetite and still down an easy 20 lbs from May.
My PCP ordered an MRI of the head which was negative. Now I am waiting to see the Neurologist but still don't have an appoinment scheduled as they are supposed to call me.
Thanks,
Marell
It is very common for Lyme symptoms to recycle. You may think you are getting better and then wham, here comes another symptom.
It is amazing how stubborn some doctors can be! I have heard people say that a doctor wouldn't test them for Lyme because they looked TOO sick and Lyme just isn't that bad. Others say a patient doesn't look sick enough. I am sorry, but that is the stupidest excuse for not ordering a test I have ever heard of. That is like telling a slim woman that she can't have a pregnancy test because she doesn't look pregnant enough!
The only thing I can think is that the lyme deniers in the Northeast have been saying for years that Lyme is essentially nonexistant outside New England, the Upper midwest, and the Pacific Northwest (which they generally just ignore). I read a paper from a doc at Yale who said that any positive Lyme test in the south should be considered a false positive unless the person could show travel to a "highly endemic area" shortly before symptoms started. I think southern docs have been trained to look for a high burden of proof for Lyme. Which is a bummer for people who have it.
Any doctor who focuses on whether or not you had an engorged tick, a bulls eye rash, or travel to Connecticut is ignorant of Lyme. Find another one!
The only thing I can think is that the lyme deniers in the Northeast have been saying for years that Lyme is essentially nonexistant outside New England, the Upper midwest, and the Pacific Northwest (which they generally just ignore). I read a paper from a doc at Yale who said that any positive Lyme test in the south should be considered a false positive unless the person could show travel to a "highly endemic area" shortly before symptoms started. I think southern docs have been trained to look for a high burden of proof for Lyme. Which is a bummer for people who have it.
Any doctor who focuses on whether or not you had an engorged tick, a bulls eye rash, or travel to Connecticut is ignorant of Lyme. Find another one!
Agggh!! It makes me crazy to hear about the way you were treated.
If your doc will read Burrascano's Treatment Guidelines at ILADS.org, it will be a very good start.
The whole thing about seeing the tick: I never saw the one that got me, and my kid never saw the one that got her. They are SO tiny, like a period at the end of a sentence, not like a peppercorn. And when they are done chowing down, they just drop off, so they are easy to miss. And the circular rash? MANY of us never got one, or it could hidden on the scalp if that's where the tick was. So even if you never see a tick or get a rash, you can easily still have Lyme and its companion infections.
Be strong! Keep us posted -- we're rooting for you!
If your doc will read Burrascano's Treatment Guidelines at ILADS.org, it will be a very good start.
The whole thing about seeing the tick: I never saw the one that got me, and my kid never saw the one that got her. They are SO tiny, like a period at the end of a sentence, not like a peppercorn. And when they are done chowing down, they just drop off, so they are easy to miss. And the circular rash? MANY of us never got one, or it could hidden on the scalp if that's where the tick was. So even if you never see a tick or get a rash, you can easily still have Lyme and its companion infections.
Be strong! Keep us posted -- we're rooting for you!
Well I went to my Pain Doctor today and they were terrible to me. They basically told me that I do not look like I have Lyme Disease which is so stupid. She said that someone with Lyme Disease looks very tired and they are really fatigued and cannot do much and have a lot of aches and pains, etc. I told her yes that fits me to a tee. She said I just do not look like I have it. I told her I am certain that I do. I told her that yes I do. I told her she did not know me 10 years ago. I told her that I was Latin Club Princess and I was in a Strawberry Padgeant and I looked a whole lot better then. But when my medical problems started escalating I went downhill fast and now I have dry skin, dry hair, pale skin, etc. She basically dismissed it and told me I need to talk to my primary care doctor about it. So I guess everyone that does not look basically like a bum on the street does not have nothing wrong with them. That is pretty much what she implied. Or the nurse that is. She said I do not look that bad. I never got to talk to my actual doctor (she was on vacation).
Therefore, I called my primary care doctor that I go to (my Internal Specialist) and spoke with his nurse and explained everything to her. She is going to talk to him and call me back tomorrow and see about getting testing and what they can do. Another thing, when I called my primary care doctor's office and spoke with the nurse she even asked me "well, have you been bitten by a tick". I told her yes and explained that a tick was embedded in me years ago and my dad burned it and pulled it out. But you know I have read about people with Lyme Disease who did not even know or remember getting bitten by a tick. I just cannot believe the reaction when I told them I am pretty sure that I think I have Lyme Disease. People are so ignorant about it. I am going to be persistant about this though. I will keep you all posted.
Thanks again to everyone. Hugs and support to all of you too. Also, I will give this website information to my doctor. He is a very good doctor so I am sure he will know what to do. He is an extremely smart doctor. He is pretty much a nerd if you know what I mean. Keeping my fingers crossed.
Therefore, I called my primary care doctor that I go to (my Internal Specialist) and spoke with his nurse and explained everything to her. She is going to talk to him and call me back tomorrow and see about getting testing and what they can do. Another thing, when I called my primary care doctor's office and spoke with the nurse she even asked me "well, have you been bitten by a tick". I told her yes and explained that a tick was embedded in me years ago and my dad burned it and pulled it out. But you know I have read about people with Lyme Disease who did not even know or remember getting bitten by a tick. I just cannot believe the reaction when I told them I am pretty sure that I think I have Lyme Disease. People are so ignorant about it. I am going to be persistant about this though. I will keep you all posted.
Thanks again to everyone. Hugs and support to all of you too. Also, I will give this website information to my doctor. He is a very good doctor so I am sure he will know what to do. He is an extremely smart doctor. He is pretty much a nerd if you know what I mean. Keeping my fingers crossed.
I hear you. These are tough times, and your courage in plowing ahead is admirable.
I think your gameplan makes sense, based on your circumstances. If your doc will read up on the more advanced thinking about Lyme, especially Burrascano's Treatment Guidelines and other information on the ILADS [dot] org website, that will give the doc the background to know what to order.
Here is the link to Burrascano's guidelines, which are written for docs, but accessible to anyone and understandable even to me with a bit of effort:
http://www.ilads.org/files/burrascano_0905.pdf
This may have been covered above, but fwiw:
The first tests usually done are called ELISA and Western blot, but they are known to be substantially inaccurate, esp. if you have been infected a long time. The better test is the expensive one from IGeneX Labs in Palo Alto CA. They are incredibly nice people (I hand-delivered my blood sample to them and was so impressed with the place: not a grand huge expensive building, but just a little place, very kindly lady up front, and I understand the docs/founders there are the same way) and maybe they have a 'compassionate' pricing program for those in financial difficulty. You could call them and ask. Just google/search for the company name and you'll find the number in Palo Alto.
It's also very possible that you have other infections the same tick may have carried, and without knowing what those are, the treatment is also unknown. A Lyme specialist could make a good guess based on your symptoms which of these co-infections to test for, and you might to bring that up with your doc. If s/he reads Burrascano, it will give some useful information there.
Let us know what you do and how it goes, okay? And think about asking about discounts or terms with the doc and labs, explaining your situation. When the economy finally turns around, you can make a contribution to them later perhaps.
Bless your heart, thinking of you --
I think your gameplan makes sense, based on your circumstances. If your doc will read up on the more advanced thinking about Lyme, especially Burrascano's Treatment Guidelines and other information on the ILADS [dot] org website, that will give the doc the background to know what to order.
Here is the link to Burrascano's guidelines, which are written for docs, but accessible to anyone and understandable even to me with a bit of effort:
http://www.ilads.org/files/burrascano_0905.pdf
This may have been covered above, but fwiw:
The first tests usually done are called ELISA and Western blot, but they are known to be substantially inaccurate, esp. if you have been infected a long time. The better test is the expensive one from IGeneX Labs in Palo Alto CA. They are incredibly nice people (I hand-delivered my blood sample to them and was so impressed with the place: not a grand huge expensive building, but just a little place, very kindly lady up front, and I understand the docs/founders there are the same way) and maybe they have a 'compassionate' pricing program for those in financial difficulty. You could call them and ask. Just google/search for the company name and you'll find the number in Palo Alto.
It's also very possible that you have other infections the same tick may have carried, and without knowing what those are, the treatment is also unknown. A Lyme specialist could make a good guess based on your symptoms which of these co-infections to test for, and you might to bring that up with your doc. If s/he reads Burrascano, it will give some useful information there.
Let us know what you do and how it goes, okay? And think about asking about discounts or terms with the doc and labs, explaining your situation. When the economy finally turns around, you can make a contribution to them later perhaps.
Bless your heart, thinking of you --
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