Jordana
Frequent Contributor (1K+ posts)
Member # 45305
posted
I was just reading a list compiled from people of their Lyme symptoms. I am really perplexed because my symptoms never seem to be on the list.
I don't have a lot of pain -- except for really bad migraines on abx, never off of abx. Never joint pain. I don't have brain fog unless I'm on minocycline. I don't have night sweats or day sweats anymore unless I'm breaking a fever.
What I do have are twitching, shaking, insane nerve sensations, whole body tremor, vibrations, what feels like demyelination, weakness in my neck and jaw, fasciculations in places there should not ever be fasciculations like the back of my tongue, tinnitus, buzzing in the back of my head, head *movement* ( in a little circle) , spastic bladder, double vision, lhermitte's sign, spastic nerves in my head, arms and legs, daily fever, palpitations and bounding pulse, loss of grip strength and unpredictable loss of left side, shoulder and hip weakness.
I don't have "brain fog" normally. I'm always thinking even if I have to lie down to do it. Sometimes I am too tired to type and sometimes my neuro symptoms are too distracting to work past - like my head is getting pushed around by my pulse and vibrating and my arms and back are tired, but I am still thinking and can remember, even through the fog of my other symptoms.
Does that even sound like Lyme? To me now that I look at it this seems like maybe MS or some other autoimmune neuropathy, or a brain injury.
What are your symptoms? Are they like this?
Posts: 2057 | From Florida | Registered: Feb 2015
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Head dizzy buzzy feeling headaches left side of body goes numb quads will randomly give out completely left side of neck pain NAUSEA vision strain (I don't know how to describe this one, just that it's hard to focus especially on things far away.) tremors in my hands/arms And a weird feeling like my body is going to shut down.
Those are my main symptoms.
What did you lyme test say (not that that is very reliable)
Posts: 798 | From Cincinnati, OH | Registered: Jul 2016
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Jordana
Frequent Contributor (1K+ posts)
Member # 45305
posted
I was Igenex IGG positive with band 31, so chronic. I have Lyme for sure. I just wonder if it's my most pressing problem right now.
I too am not the "classic" lyme patient. I Have very little pain and little joint issues...
Sometimes I wonder, If people just have a different more prevalent infection.
Some people, it is more Lyme, others more bart and still others Babesia and _____?? Parasites...
I have been whacking and whacking at lyme for years, and only recently began really tackling the babesia in earnest. I have a sneaking suspicion Babesia is my main culprit.
I can identify with all your neuro symptoms... twitching, odd nerve sensations... most of my worst symptoms are in my head, which is super hard to live with!
Have you tested for babesia and treated it with multiple meds? I am currently on Crypto, Artimesinin, Mepron and clindamycin. If this doesn't wack it down, then I don't know what will...
I agree with the others here. I think you should try the Dr. they suggest. I think it is mine they are suggesting and he is good!
Unless of course you haven't been with your dr. for long and feel she is doing good by you.
My mom has M.S. and your symptoms don't seem M.S. like at all. My neurologist told me M.S. almost always starts out relapsing and remitting.... GRRR no remitting here!!
Best wishes Jordana! I know how you feel. Keep doing what is before you. I don't know if you are a Christian, but Christ give me a lot of hope and joy despite all this! ~A hug and a prayer your way
Posts: 477 | From Pennsylvania | Registered: Nov 2015
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posted
BTW, Jordan, if you want a mood booster... Google the piano guys It's gonna be okay. It is a very awesome song that every Lyme patient should listen to for a boost in serotonin. Posts: 477 | From Pennsylvania | Registered: Nov 2015
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Jordana
Frequent Contributor (1K+ posts)
Member # 45305
posted
Thanks fl -- I haven't found any evidence at all that I have babesia and most of the LLMDs don't think I have it. Never say never though.
My symptoms are somewhat remitting I think but they change so fast. One thing is for sure, I'm a lot worse than I was last year.
. I'll check out the song.
Posts: 2057 | From Florida | Registered: Feb 2015
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posted
Me too I say Babesia and it may be not a herx You are treating other co- infections , their load becomes smaller and Babesia comes out with double force Look into Babesia
Posts: 443 | From Montreal, Canada | Registered: Oct 2009
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posted
My experience has been that I didn't test positive for Babesia at first either.
Then, I treated heavily for Lyme and Bartonella and I tested again, because I still felt terrible.
What do you know, it was positive... so I treated with malerone and azithromycin three or so months. Helped the sweating I was having at the time but ???
I decided babesia must not be my problem... back to Lyme... not much help... and oddly, I began to develop more classic signs of babesia including air hunger. (this is after a few years)
Tested again. and positive again. Went on Co Artem and again helped sweats and air hunger nothing else...
Decided again, Babs must not be an issue, but sweats and air hunger returned even WORSE...
SO now I am whacking it REALLY hard... I don' t know if this will end up being my problem, but I think a LOT of people think Babs is a mild infection or they don't have it.
My Dr. says it is HARD to get a positive test. I say if you are still sick with Lyme, I would treat whether you think you have it or not. Medicines like Clindamycin and Mepron hit other things to like______??? who knows what yet!
Anuta, what you said certainly fits my journey!
Jordana, I hope you got a lift from the song! Isn't it great? Someday there will be a reward for those who have suffered patiently and it WILL be worth it all. The alternative of despair and no hope isn't lookin' good to me!
Posts: 477 | From Pennsylvania | Registered: Nov 2015
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posted
BTW, the fact that you are running a fever every day, I think definitely points to an infection and certainly the possibility of Babesiosis.
Posts: 477 | From Pennsylvania | Registered: Nov 2015
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Jordana
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Member # 45305
posted
Funny I was just thinking about this again this morning. I've had a HIGH fever starting a week ago -- in the 100s at night, heavy sweating while asleep and then waking up with a temp of 99; this is different from the low grade fever I was running every day in the afternoon.
I was thinking I was having the worst herx yet and the fever was my immune system vs. Lyme finally going to town.
My symptoms seemed to fit babs in the beginning and the herbal stuff stopped the sweats right away.
But aside from the sweats I've really had no other symptoms of babs and no positive test including FISH.
I am really confused now.
Posts: 2057 | From Florida | Registered: Feb 2015
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posted
You could run the entire panel for Babesia. I think Dr. H recommends this. Have you used LabCor? That lab picked mine up, (Wa1 Duncani the dreaded type)when a FISH test from Igenex had missed mine previously.
Sweating and fever is some of Babesia's main symptoms. I didn't get air hunger until way later down the pike.
Everyone says patients that are super sick with Lyme usually have Babesia too. You symptoms sound very serious which would point to Babs.
POTS (or low blood pressure from autonomic dysfunction) seems to run along with Babs and fatigue... (which can come from low blood pressure)
What you could do is take a shot of cryptolepis (I get mine prescribed from infuserve America) And take HIGH doses of Artimesinin... like 1,600 mg per day. (pulse the Art though, its hard on the liver)and maybe start slow.
See what happens with these potent herb antimalarial/antiprotazoals...
DON'T be your own Dr. I encourage learning about your illness, but having a good Dr. who has plenty of clinical experience will help ease your stress etc.
Posts: 477 | From Pennsylvania | Registered: Nov 2015
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Jordana
Frequent Contributor (1K+ posts)
Member # 45305
posted
My symptoms are serious. I don't want to be my own doctor but I seem to be confusing to everyone and can't get help. I honestly can not get it and I'm getting too sick to figure anything out.
I'm just waiting here to see if my system recovers. Desperately need a bath. Can't eat. Scary neuro. It's pretty bad.
Posts: 2057 | From Florida | Registered: Feb 2015
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posted
If you are confusing your Dr. and they aren't being able to come up with good treatment plans, then I would say you had better find someone who isn't scared of you.
Having a good Dr. that doesn't drum his fingers and look at the ceiling can be the difference between literal life and death.
Sound like you have been only worsening under you Drs care that you have now. If you have been with the same Dr. since getting sick, I suggest you switch. Even just another opinion can be so helpful.
I know what scary neuro stuff is like. I am sorry. When things get out of hand in my head, I chant... whenever I am afraid I will put my trust in Thee (God) Try it!
I hope you have some family and/or a good friend who can help you too. Relying on just yourself is NOT healthy. God and family and friends are just as important as a good Dr.
Posts: 477 | From Pennsylvania | Registered: Nov 2015
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posted
Jordana, I am so sorry. Wish I knew a way out for all of us.
Posts: 798 | From Cincinnati, OH | Registered: Jul 2016
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dbpei
Frequent Contributor (1K+ posts)
Member # 33574
posted
I am so sorry, Jordana. Your symptoms sound so difficult to live with. I too have no joint or muscle pain and most of my symptoms are from my neck up. I have lost all hearing in one ear and feel vibrations in that ear along with static/chime sounds when it tries to listen.
I have constant burning, buzzing and ringing in my ears and a sensation of head fullness and tightness/pressure. I also feel a slight vibration feeling in my head as though it is too heavy for my neck - like Humpty Dumpty. I have tingling in my hands and feet as well.
I often feel crawling and sizzling sensations as though ginger ale is flowing through my brain and ears, especially on the side with deafness.
Sometimes I have a sore mouth with dental pain and jawbone pain, which scares me into thinking I am dealing with jawbone necrosis. I had extensive ozone treatment a few years ago in an effort to combat that. No real change.
I am going to give IV antibiotics another try. I will let you know if there is any improvement. Because I feel like such a unique case, I, like you, often wonder if it is Lyme or something else we are dealing with.
But I am lucky that we have a clue due to testing in the last year that is positive for chronic brucellosis and borellia miyamotoi.
Everybody tells me I look great! But it is hell living with these invisible symptoms, as you very well know...
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