posted
I was directed to this site from another in the hopes this is where I could get some answers. In the last couple of months I've had the following things going on. I get these "episodes" where I start shaking all over (tremors) and feel weak, like if I don't lay down I will fall down, as my legs feel like they won't support me. I have also developed an irregular heartbeat (palpatations), also feel lightheaded/dizzy, always tired with no energy and don't sleep well at night. I have been to see my Dr. and have had bloodwork done which came back fine (glucose/thyroid/B12). The only thing that was low was my magnesium level so he started me on magnesium 1x per day and rechecked in a couple of weeks. The level was still low so now I take mag 2x per day. The level was rechecked and now is where it is suppose to be so he has ruled that out as a cause. After looking over this website, I am now concerned Lyme is a possibility. Looking back to 2000, when alot of my problems started, I'm thinking maybe Lyme or another tick born infection may be the cause. I had been bitten 3 times by ticks during 2000 & 2001 (I found them) and did have 3 lyme tests done (2 negative/1 positive then Western Blot which was negative)so lyme was ruled out. But since then I now have GERDS bad (I take Prevacid 2x per day), have developed muscle aches (was told it is fibromyalsia), have TMJ, just diagnosed with mitral valve prolapse after echo was done (had it done 2 years ago also and it didn't show then), IgA Selective Deficiency (immune disorder), reoccuring infections (thrush, yeast, sinus), new allergies, and a "rash" (I get redness which feels hot & like prickling & itchy)which comes and goes depending on season. I have nightsweats and always feel cold. I did go to a dermo when the rash 1st appeared and the first question he asked was if I had ever been bitten by a tick or spider, but since I tested negative for lyme that was ruled out then too. Now my Dr. is sending me to a neuro hoping he can come up with a reason. I am at my wits end, as what ever this is it's getting worse. Could all my problems be from lyme, even though I've tested negative, or from another form of a tick related illness, and how should I go about checking into this? Any suggestions or thoughts would be greatly appreciated.
Posts: 17 | From NY | Registered: Nov 2006
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AZURE WISH
Frequent Contributor (1K+ posts)
Member # 804
posted
Hi welcome to the board
Did I understand you right (and I may not have)
You said one test was positive ... well if you had a lyme test come out positive then (in my opinion as just some chic with lyme) you have lyme.
Nightsweats is a common symtpom for babesia so you may have that to.
You need to get a lyme literate dr. (llmd)
post on seeking a dr include you state and where you can travel to and make sure your pm is enabled cuz we do not post drs info on the board so someone will pm it to you.
With tick borne diseases a llmd is the one who is your best bet at getting better. But they are still a dr so if you have other issues they can adress them too.
The tests are not reliable you can test negative and still have it.
Ann-OH
Frequent Contributor (5K+ posts)
Member # 2020
posted
I can't read a solid block of print - so I will split it up for myself and others who share my problem. My comments will be at the end.
Ann-OH
posted 16 November, 2006 by DAVA
I was directed to this site from another in the hopes this is where I could get some answers. In the last couple of months I've had the following things going on.
I get these "episodes" where I start shaking all over (tremors) and feel weak, like if I don't lay down I will fall down, as my legs feel like they won't support me.
I have also developed an irregular heartbeat (palpatations), also feel lightheaded/dizzy, always tired with no energy and don't sleep well at night. I have been to see my Dr. and have had bloodwork done which came back fine (glucose/thyroid/B12).
The only thing that was low was my magnesium level so he started me on magnesium 1x per day and rechecked in a couple of weeks. The level was still low so now I take mag 2x per day. The level was rechecked and now is where it is suppose to be so he has ruled that out as a cause.
After looking over this website, I am now concerned Lyme is a possibility. Looking back to 2000, when alot of my problems started, I'm thinking maybe Lyme or another tick born infection may be the cause.
I had been bitten 3 times by ticks during 2000 & 2001 (I found them) and did have 3 lyme tests done (2 negative/1 positive then Western Blot which was negative)so lyme was ruled out.
But since then I now have GERDS bad (I take Prevacid 2x per day), have developed muscle aches (was told it is fibromyalsia),
have TMJ, just diagnosed with mitral valve prolapse after echo was done (had it done 2 years ago also and it didn't show then),
IgA Selective Deficiency (immune disorder),
reoccuring infections (thrush, yeast, sinus),
new allergies, and a "rash" (I get redness which feels hot & like prickling & itchy)which comes and goes depending on season.
I have nightsweats and always feel cold. I did go to a dermo when the rash 1st appeared and the first question he asked was if I had ever been bitten by a tick or spider, but since I tested negative for lyme that was ruled out then too.
Now my Dr. is sending me to a neuro hoping he can come up with a reason. I am at my wits end, as what ever this is it's getting worse.
Could all my problems be from lyme, even though I've tested negative, or from another form of a tick related illness, and how should I go about checking into this?
Any suggestions or thoughts would be greatly appreciated.
[my comments] The negative tests do not mean anything, you could still have Lyme and/or other tick-borne diseases.
I agree that you need to find a doctor in your area who is experienced with treating tick-borne diseases.
I hope you find one and find out how to get the help you need. You could post on the board here called "Seeking a Doctor".
NP40
Frequent Contributor (1K+ posts)
Member # 6711
posted
Hi Dava,
Sounds like lyme disease and babesia to me, very common symptoms and the fact that your magnesium took a nose dive is very telling. Testing is very unreliable and most labs do it poorly.
However, a good lyme literate doc will know what labs to use and what to look for. You have almost textbook symptoms of lyme and babesia.
Go to the "Seeking a Doctor" section of the forum and post that your looking for a doc in NY. Someone will send you a Private Message [icon with envelope and two people] with a doctor contact info. There's some good doc's in NY.
Posts: 1632 | From Northern Wisconsin | Registered: Jan 2005
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kelmo
Frequent Contributor (1K+ posts)
Member # 8797
posted
Bartonella, too. I'm not a doctor, but my daughter has everything but heart issues.
Posts: 2903 | From AZ | Registered: Feb 2006
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posted
Thanks for all the info. I have visited a few different sites and have made alot of copies of info that I am going to give to my Dr. in hopes he will read and learn alot more about Lyme. I am going to drop off the info today so he can have time to understand more about this before I see him next week. I sure hope he feels as I do that this is something worth checking into further because to date, I have gotten no answers as to what is causing all my symptoms. I am alittle worried that if in fact I do have Lyme or other co-infection, it will be really hard for me to be treated. I am allergic to all the cillin meds so that isn't an option and the other abx that I can take really kill my stomach. For all the times I have been on them they really fire up my GERD and I usually can't finish the entire course of treatment. Even the single dose I must take before any dental treatment kills me for days after. Has anyone else had this trouble tolerating abx and if so, have you found a way to tolerate them better? Thanks, Dava
Posts: 17 | From NY | Registered: Nov 2006
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posted
Hi Dava, Welcome to LymeNet. Don't know how much you've read about Lyme, but I hope you're aware of the controversy concerning diagnosis & treatment. Just be careful which sites you use for info for your dr.
Under "Links for Newbies" look for "Camp A & Camp B" to understand the problems.
Be sure to read "LD: Two Standards of Care" www.ilads.org click "Articles & Presentations"
Then click "Diag Hints & Treatment Guidelines.." under "Treatment Guidelines" Print a copy for you & your dr. Excellent info from one of the best LLMDs.
Since drs are so busy, be sure to limit the amt of info you take. It's more likely it'll be read if you don't overwhelm him with material. Some drs are very willing to read new material & learn.
I, too, recommend an evaluation by a LLMD - ASAP. Be sure to get copies of your test results to take with you.
[ 17. November 2006, 09:56 AM: Message edited by: cbb ]
Posts: 4638 | From South Carolina | Registered: Mar 2001
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posted
Dava if you feel worse after taking antibiotics it could be the jarisch-herxheimer reaction, herxheimer, or herx for short.
Posts: 117 | From . | Registered: Oct 2006
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CaliforniaLyme
Frequent Contributor (5K+ posts)
Member # 7136
posted
Could be any of them but what comes to mind is Babesiosis... that dizziness... but could be any of them!! Or not! Get a thorough differential diagnosis!!! From a doctor that knows the TBDs thoroughly!!! Best wishes, Sarah
-------------------- There is no wealth but life. -John Ruskin
All truth goes through 3 stages: first it is ridiculed: then it is violently opposed: finally it is accepted as self evident. - Schopenhauer Posts: 5639 | From Aptos CA USA | Registered: Apr 2005
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heiwalove
Frequent Contributor (1K+ posts)
Member # 6467
posted
certainly sounds like lyme and coinfections to me. find a lyme literate doc as soon as you can.
Michelle M
Frequent Contributor (1K+ posts)
Member # 7200
posted
Welcome, Dava!
Glad you found us!
I second all advice above.
Definitely find an LLMD.
Here's why.
Your other doctors will pooh-pooh the possibility of lyme, when in fact it's the most likely culprit.
They'll rely on that negative test, when in fact they're not supposed to be relying on tests at all but clinically diagnosing you. But do you think they WILL? NOOOO.
Just watch your neurologist. He'll be clueless and will downplay lyme entirely, despite you living in one of the most endemic states, and having signs and symptoms consistent with lyme and babesiosis.
He won't know a good lyme test from a hole in the ground.
Ask him if he intends to use a lab that tests all the bands on a western blot? (Most labs omit two of the bands that are the most specific to lyme; a really good lab like IGeneX doesn't.)
Watch him give you a brush off or a blank look.
That's because he doesn't know anything about lyme disease.
That's why you need to find someone who does.
The fact that you did once test positive means it's pretty likely that's your problem.
Don't give in to a bunch of invasive testing at the neuro's request until you've done some really good lyme and co-infection testing at IGeneX.
Good luck!
Michelle
Posts: 3193 | From Northern California | Registered: Apr 2005
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posted
Thanks for all your responses, it really made me feel alittle better knowing there are people out there that understand what I am going through and that I am not nuts! I did go to my PC today and was really surprised that he had read the info I gave him and he agrees with me and also said there still isn't alot known about lyme. I was glad to hear him say he will work with me anyway he can to find out if lyme is the culprit. He did give me a script for doxy and sent me to the lab for another Elisa, Western Blot, and CD57 panel. He did request that they add the bands of 31 & 34 to the Western Blot but of course they couldn't. I must say the lab was great though. I was there for 2 hours (in the office with them) as they tried to get info on doing the test for the 31 & 34 bands but couldn't, but they gave it a real try!.They even agreed that most of the tests they do for lyme aren't that accurate. My PC is familiar with Igenx lab as he has had bloodwork done by them for his daughter who has a rare auto-immune disorder. I have called Igenx and have the test kit #6050 coming as per Dr. Harris. I still have the neuro app't on Mon. and my PC still wants me to go, even though he says the neuro will probably pooh-hoo me (his words not mine) and I then have to return to my PC on Tues. I will let him know then that the Igenx kit is coming. He told me he will do whatever it takes to get this thing figured out. I'm really glad to know my PC is willing to work with me on this. If it wasn't for finding this website I never would have even considered looking into lyme any further. Thanks again, Dava
Posts: 17 | From NY | Registered: Nov 2006
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