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
Ok Ricobord, you really caught my attention with this. This is probably to vague of a question, but would it be possible to pass along Lyme to my son in utero, but not show any signs myself for 12 years? That sounds a little silly even as I'm writing this. Maybe a better thing to ask would be... How long can Lyme lay dormant?
I ask because my son has a controversial diagnosis named DAMP (Deficit of Attention, Motor control, and Processing). It's a combo of autistic traits, adhd, and an auditory processing disorder. Things have been and continue to be a lot of fun around here, just a little draining on me at times. I'm not in search of any new diagnosis, but this sounds like a good question for his doc the next time we her.
What do you think?
Good question proud mommy!
Good question proud mommy :)
Marell
I ask because my son has a controversial diagnosis named DAMP (Deficit of Attention, Motor control, and Processing). It's a combo of autistic traits, adhd, and an auditory processing disorder. Things have been and continue to be a lot of fun around here, just a little draining on me at times. I'm not in search of any new diagnosis, but this sounds like a good question for his doc the next time we her.
What do you think?
Good question proud mommy!
Good question proud mommy :)
Marell
Regarding your question about Lyme crossing the placenta, there are many cases of this described. In the documentary, "Under Our Skin," a doctor says he has confirmed the presence of Lyme in miscarried fetuses. However, the "official" dogma on Lyme says there is no evidence of this.
Dr. Jones in CT has treated about 10,000 children with Lyme and he says he sees this often. The children are usually developmentally delayed and show symptoms similar to autism and ADHD.
We have a woman on this forum with this experience. Hopefully she will see this and chime in. I believe she said her son has been on antibiotics for 2 years and is vastly improved.
Dr. Jones in CT has treated about 10,000 children with Lyme and he says he sees this often. The children are usually developmentally delayed and show symptoms similar to autism and ADHD.
We have a woman on this forum with this experience. Hopefully she will see this and chime in. I believe she said her son has been on antibiotics for 2 years and is vastly improved.
Re IGeneX: You ask: "Then I am guessing I will get a blood draw at a lab here??? And then send it to IGeneX??? Not sure how all this works."
Yes, that's the way it goes. I don't recall if IGeneX has special kits (with test tubes with certain preservatives in them) for the blood samples, but look on their website. If not there, you can call them. They are very nice on the phone.
Hang in there -- the hard times will pass, just never soon enough.
Yes, that's the way it goes. I don't recall if IGeneX has special kits (with test tubes with certain preservatives in them) for the blood samples, but look on their website. If not there, you can call them. They are very nice on the phone.
Hang in there -- the hard times will pass, just never soon enough.
I am waiting right now to actually go to my doctor in person like you said. That is the best way. It is hard to take care of things over the phone. Plus, I cannot get the doctor to add information on my order over the phone. I just do not have the gas money to just drive to town right now. I know I will however have to go to town to pick up my medicine and my husband's medicine in a few days, so I will run by my doctor's office when I do that and get him to add probably a culture for a Borrelia/Spirochete. I did some research and found out that a Western Blot could possibly have a false negative and then I would have to get tested again. Since it may cost me a lot of money I want to just get the culture done. Yes my doctor is really nice and if I ask he will probably just add the tests that I need. I was not trying to do anything illegal but now that all of you say that I probably would have gotten into a lot of trouble. I just want to try everything I can because I am just in so much pain and everything. It is so aggravating that we all have to go through this stuff. I am sure all of you understand how it is.
I am still researching too. I will see what I can do about getting an up front authorization from my doctor for IGeneX so insurance will pay. How will that work? I am guessing I would go to the doctor. Have his office call the insurance company and get an out of network authorization. Then I am guessing I will get a blood draw at a lab here??? And then send it to IGeneX??? Not sure how all this works.
Do any of you know whether or not Lyme can cross the placenta?? Just wondering because I have noticed that my daughter (which is almost 3 years old) is showing signs of what looks like maybe Autism or ADHD or something like that. I was just wondering if I have Lyme that maybe I passed it to her.
You know it ***** that we pay so much in insurance (my husband pays $400 a month for insurance) and then have to pay deductibles and coinsurances on top of it. And then because my husband makes too much money (he only gets $1,200.00 a month) Medicaid says we have too much so we are on share of cost. I do not see how that is too much money for 4 people. It is just such a bummer.
Thanks again for all of your help
I am still researching too. I will see what I can do about getting an up front authorization from my doctor for IGeneX so insurance will pay. How will that work? I am guessing I would go to the doctor. Have his office call the insurance company and get an out of network authorization. Then I am guessing I will get a blood draw at a lab here??? And then send it to IGeneX??? Not sure how all this works.
Do any of you know whether or not Lyme can cross the placenta?? Just wondering because I have noticed that my daughter (which is almost 3 years old) is showing signs of what looks like maybe Autism or ADHD or something like that. I was just wondering if I have Lyme that maybe I passed it to her.
You know it ***** that we pay so much in insurance (my husband pays $400 a month for insurance) and then have to pay deductibles and coinsurances on top of it. And then because my husband makes too much money (he only gets $1,200.00 a month) Medicaid says we have too much so we are on share of cost. I do not see how that is too much money for 4 people. It is just such a bummer.
Thanks again for all of your help
Ugh, I know what you mean about the deductible! I'm still paying off mine, too. Hopefully your doctor will add the additional tests on the order without your having to schedule another visit. This is all so convoluted, isn't it?!
Best of luck,
Minnie
Best of luck,
Minnie
For the best quality testing you might consider IGeneX. Yes, you need our doctor to authorize tests, but since you pay up front for IGeneX tests, he might not mind signing it. Docs hesitate when you want them to get an out of network authorization from the insurance company up front. You should be able to just leave the authorization at the office with a note explaining why you want him to authorize the tests.
I understand wanting the tests first. I didn't want to spend the money on the consultation with the LLMD until I was really sure I had Lyme. I ended up doing the blood draw and booking the LLMD on the same day. You could save money by waiting until you see an LLMD and having them order only the relevant tests. I was so sick I didn't care about the cost and I ordered the full Lyme panel and full coinfection panel. My insurance reimbursed me about 2/3 of it. Best money I ever spent.
If your doc just generically ordered Lyme tests, that means the lab will run a screening test. Only if that is positive will they run a Western Blot. I was a false negative on the screening test. I got my Western Blot done at IGeneX, where they showed I was diagnostically positive, even though I was CDC negative. Most labs will only report CDC negative or positive, so you won't know if you showed other lyme specific antibodies on bands ignored by the CDC.
Sigh. It all gets confusing, especially when doctors are uncooperative. Funny how they can be so sure it is not Lyme, but still have no idea what we do have!
I understand wanting the tests first. I didn't want to spend the money on the consultation with the LLMD until I was really sure I had Lyme. I ended up doing the blood draw and booking the LLMD on the same day. You could save money by waiting until you see an LLMD and having them order only the relevant tests. I was so sick I didn't care about the cost and I ordered the full Lyme panel and full coinfection panel. My insurance reimbursed me about 2/3 of it. Best money I ever spent.
If your doc just generically ordered Lyme tests, that means the lab will run a screening test. Only if that is positive will they run a Western Blot. I was a false negative on the screening test. I got my Western Blot done at IGeneX, where they showed I was diagnostically positive, even though I was CDC negative. Most labs will only report CDC negative or positive, so you won't know if you showed other lyme specific antibodies on bands ignored by the CDC.
Sigh. It all gets confusing, especially when doctors are uncooperative. Funny how they can be so sure it is not Lyme, but still have no idea what we do have!
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