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Does this sound familar to anyone? I'm getting pretty desperate for answers.

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Posted 1/9/2011 7:24 AM (GMT -8)
I posted this on the healthboards and a member suggested I come here and repost. She was diagnosed with Lyme Disease a few months ago but she said my story was exactly was like hers. I've not asked for a Lyme test yet. I have an appointment with my neurologist to go over all the test results on Wednesday this week.

Here's what I posted. Does this sound at all familar to anyone here who later found out Lyme was the reason?

From Jan to June last year I had a series of upper respiratory and sinus infections. I took Amoxicillin, Amoxicillin Clavanate, Levaquin, Prednisone, steroid shots, you name it, I couldn't kick the illness despite my best efforts. I had weird breathing problems where I couldn't seem to get enough air, like I was breathing all from the shoulders and not using my diaphragm like I should. I quit smoking and had a clean low-dose spiral CT lung scan, passed my pulmonary tests, normal blood work, and I had a sinus CT scan leading my doc to attribute my problems to allergic rhinitis.

I know the stories about Levaquin and perhaps I'm a causality. I started having odd neurological problems after the Levaquin, which made me very ill for the 5 days I was on it, gastro problems, weird feeling in my head like I was going crazy, depression, general ill feeling. I had tingling in my left arm, numbness, dry eyes (eye doc diagnosed that), super hypersensitive skin like an instant sunburn, all this happened after the Levaquin (750MG) by about two weeks. Those sensory nerve problems lasted a few days and went away. Then I took Imtrex one morning and the hypersensitive skin came back, even my showers hurt, but a few days later that was gone and I did take Imtrex again with no problems.


Summer came and I felt great. Went on a low-carb diet and lost 25 pounds.

All well until early November. That weird breathing thing I had last year, that started again and lasted a good three weeks before it just stopped. I did notice odd pressure changes in my sinus cavity, which scared me, I was thinking....oh no, here we go again, but nothing developed. I did get that feeling like I was on the verge of being sick but never did, a fact I contributed to taking vitamins routinely. I was still on my low carb diet so I stopped it totally and went back to eating normally. As a note, I routinely take Vicodin (half a pill for my back problems and a half a Xanax to sleep at night). On Nov. 4. I passed out on the couch and awoke with a migraine headache. I took a Vicodin first but the pain progressed. I took an Imtrex. I felt bad all day. I had wicked back cramps over the right shoulder, I couldn't even sleep, big knots formed around the shoulder blade. I had tingling in the area around the shoulder blade, pins and needles feelings. Massage therapy didn't work long term. Then this nervous explosion hit me like a wave, I felt sick, shaky, energy just blasted from my head through my arms and I couldn't use my right arm at all, the nerve was so irritated and bending it hurt. Acupuncture took that pain away but the tingling moved to the left arm and then down my left leg. All this time my right leg has been fine. At one point, I limped so bad from the pain that I considered buying a cane. My neck felt sensitive. A cervical MRI showed bulging and herniated disks, spurs and some nerve root compression, including a rightparacentral herniation. There's no weakness in my arms, other than when the nerve really fires and the pain makes it hard to use the arm. Nothing touches the pain. The left leg pain is like sciatica and hits around my knee and down by my skins, at one point I swore my ankle was sprained it hurt so bad, so this impacting my joints in some way. I don't know if it's anxiety or what but I had what almost felt like rocketing nerve impulses running through my body, like my nervous system signals were stuck in some roundabout with no end, I was skaking all over and developed muscle spasms (not terrible but tight muscles and fasculations all over) This slowly subsided but the nerve pain has settled into my left shoulder, elbow and left wrist, even my index finger felt swollen. My left leg still hurts. I had a brain MRI and results are due back Wednesday. I did the NCS and an upper and lower EMG. They didn't see anything glaring but said they'd go over all this Wednesday. They pretty much tell you then and there if there's anything major. They wanted to rule out MS because my mother has it. They gave me Neurotin but I don't like the effects. What works for me, at least to lessen nerve pain, is that darn Xanax, which is really hard to take because I have a 5-year-old and it's a heavy hitter for me. I don't care anymore what works, as long as it works. I just so want to feel OK again, all I want is to feel like me, I've been depressed, not feeling right in my mind and totally exhausted by this constant and annoying nerve problems, the left arm is the worst. It sometimes feels swollen, such as when I rest it on the table to type, like a circulation thing or something. I'm restless, annoyed and so very exhausted by this. My most recent blood work was good, I don't have the details to post but I know the doc checked my thyroid and the rheumatoid factor, not sure what else.

Why would Xanax be the only thing that seems to calm my nerves and the pain? I mean seriously, am I just totally nuts, I don't think I am, how can you imagine this? I know I'm not imaging this. Now, here's the really trippy part. I was on the computer tonight and suddenly, all my pain just stopped, all the nerve pain was gone and my muscles felt great, my wrist didn't hurt, nothing hurt, I felt normal in my head again, I was me. I wanted to jump for joy but it all came back a few hours later. Now I'm totally, totally confused. The other odd symptoms I get include sore spots on my body that feel like bruises that aren't really there. How weird is that? Irritated nerves? I don't know.

I wake up every morning depressed now. I want this to stop.

I'm begging anyone out there to give me some ideas of what, if anything, to look for, there's no rock I won't turn over to fix this. I'm desperate now. The Neuro didn't seem like he saw anything that was so serious and obvious that he wanted to go over it right then and there, he said I'd be fine and that he'd seem me Wednesday to talk about. Meanwhile, I'm wrecked, you know that nerve pain is like labor pain, it strikes you a level that you can't get comfortable from.

Is there anything, anything at all that someone can suggest? I keep thinking this vascular in some way, I felt it was my muscles because of the cramps and spascity and tics but when the nerve pain stopped today (cruel tease indeed) so did all that muscle pain).

Posted 1/9/2011 7:28 AM (GMT -8)
sidenote: the pain went away for two hours and came right back. it's back again today, as it has been everyday for two months now. this is for sure something chronic.

Should I order my own Lyme test or ask the Neuro for one?
Posted 1/9/2011 7:33 AM (GMT -8)
let me add one more thing. we got a new dog in 2009. my problems started three months later. we did have a tick problem with the dog, a poodle puppy, which we all felt was really odd because we've been at this house since 1978 with zero tick problems and we've had dogs the entire time. we had the yard sprayed, the inside of the house, we treated all the pets (we got a kitten around the same time). i even pulled a tick from my kid's scalp, it was so gross. We were baffled by this and guessed it happened because we redid our gardens around the same time we got the new pets. i'm guessing it's totally possible that my health issues are related to this, it would be a blessing to have an answer, any answer.
Posted 1/9/2011 9:09 AM (GMT -8)
mentalcompass,
Hi - sorry you are going through this! My symptoms were/are not like yours, however, my intense need for answers, horrible weird symptoms, and lack of concern or answers from the medical field were. I went for four years and ten doctors before I got my answer - Lyme Disease - and have now been dealing with it for over five years, but much better than I was. I was elated because all I wanted was an answer, but I quickly found out that was only the beginning of my battle with this mess. It is horrible and extremely frustrating not to at least know what you are dealing with, and then the medical field treating us the way the do is just adding insult to injury - we did not ask for this. Just wanted to let you know you are definitely not alone in how you feel, even if no one else here has your exact same symptoms. Lyme Disease can manifest itself differently for every person, but there are usually some similar symptoms over time. I too started doctoring immediately when my problems started completely out of the blue and felt so utterly let down by how this whole thing played out. Finding the right doctor -- I had NO idea I was dealing with Lyme Disease because I had two negative tests over 4 years (VERY common) and was pretty much guaranteed by many doctors that I did NOT have Lyme Disease, so it was put out of my mind -- and finding this discussion forum were a Godsend to me.

I hope this at least helps you to realize you are not alone in how this is playing out for you, no matter what illness you are dealing with. You can try detoxing, which is explained in the thread at the very top 'New to Lyme.' Good luck and hope yo get answers soon.
Posted 1/9/2011 9:24 AM (GMT -8)
Hi mentalcompass, welcome to the forum! I'm really sorry for the reasons that bring you here, though!

If you haven't done so yet, you might want to read through the first "introductory" post for newbies at the top of the forum, so that you have some of the background on the issues.

I really feel for you, going through all of the weird muscle spasms, nerve pain, tremors, shaking, breathing issues, etc.

Yes, those symptoms do sound familiar.

Lyme sounds like a serious possibility, particularly since you got this puppy in 2009, it had ticks (BTW, it may have come to you with ticks attached, this happens a LOT these days), and your health issues began 3 months later.

Yes, you should be tested for Lyme, but you can't order it yourself, a doctor has to order the test for you. But tell him/her not to bother with the Lyme ELISA test, start with a Western Blot test, which is much more sensitive.

What you CAN do, and I highly recommend this, is chose the laboratory that analyzes the test. The best Lyme lab (I'm not associated with them in any way, they just have the best reputation) is IGeneX in Palo Alto CA. You can call them and ask for a Western Blot test kit, they will mail it to you. You take it to your doctor and ask if they can take the blood samples for the Lyme test in the doctor's office, or if you will need to go to a local lab to get blood drawn and then use the instructions in the kit to FedEx the blood samples back to IGeneX for analysis.

IGeneX tests are much more sensitive than those of LabCorp, Quest, etc., from what I've read, and the other thing is that when you get the results, they report ALL of the bands, not just the ones that pertain to the CDC criteria. The main thing about IGeneX is that you have to pay for the tests up front then get your insurance to reimburse you later.

Please realize your neurologist will likely go by the CDC criteria anyway, so if you're negative by those rules, he/she will say you don't have Lyme. DON'T YOU BELIEVE IT! You need to be seen by a good Lyme Literate doctor (aka LLMD) to really figure out if you have Lyme or not.

The very best thing for you, of course, would be to be seen from the start by a LLMD. They will know how to test you properly for Lyme AND for other tick-borne diseases such as Babesiosis. The "breathing problems" you're having sound very much like the "air hunger" caused by Babesiosis.

I have Lyme plus 3 "co-infections": Babesiosis, Ehrlichiosis, and Bartonella.

Where do you live? We can probably help you find a LLMD near you.

((((((hugs))))))
JoAnn
Posted 1/9/2011 9:24 AM (GMT -8)
HI Mentalcompas!
Welcome to our forum!!! I am so sorry to hear of all that you have gone through so far, but that's not unusual for those who suspect they have been infected with tick-borne infections.

I am sure that you will find us to be a caring, understanding and helpful group!!! One of the first things you should do - if you haven't already- is to read through the sticky thread at the top of the forum

titled "New to Lyme?...Start here!!" as it is packed full of info that will be very useful to you. Don't worry if you don't understand some things that you may read here - just ask plenty of questions!!

With the symptoms you have described. I would heavily suggest that you get in to be evaluated by a Lyme-Literate Medical Doctor (LLMD) asap! These docs have a much broader & more encompassing

understanding of how tick-borne infections impact the human body. They will be much more qualified to properly do a 'clinical' diagnosis - which really is the proper way to diagnose these lovely things eyes

When you go to see your doc on Wed. be sure to get a copy of your test results! We can help you to interpret them. For example, my gp tested my thyroid and the tests came back that my thyroid was producing

enough hormones, although I was in the very low end of 'normal' - when in reality I really needed a very ow dose of "Synthyroid" daily to help alleviate my symptoms!! I would have never known that except for the most wonderful people who chose to post here on HW!!

Even though they are called tick-borne infections, ticks are NOT they only way that these infections get spread. They can be spread by any insect that can bite (or maybe even by those who sting) and survive to bite again!!! Once that insect (usually ticks, fleas, mosquitoes, & biting flies) gets it's food from the critter that is infected, that infection(s) stays with that insect - to be passed to it's next 'victim".

We have the potential to help you find a LLMD near you if you would start a new post and ask for help to find one & list the state where you are. It would help even more if you would list a larger city that you are close to.

We are very cautious about giving info out about 'our' docs. LLMD's are a scarce breed, as a good portion of them are being persecuted by those that have no understanding of these diseases, or just how endemic this has become .....even though they should.

This post has gotten quite long now (so sorry, I seem to be a real talker on-line!) - so I'll end here.

Please do feel free to ask plenty of questions - that's how we learn. One thing you should remember from now on - whether or not you have a tick-borne infection - you have to be your own health advocate!! You need to really learn about what is going on in your body & how best to get the help you need.

I do hope this helps a bit! smilewinkgrin

Trav
Posted 1/9/2011 9:58 AM (GMT -8)
Wow, great information for me, thanks for taking the time to respond. I live in Kissimmee, Florida, that's just outside Orlando. I will get a copy of all file from the neuro, and the bloodwork. I normally pick up my own copy but this time, I just didn't want to read it because last time I made myself nuts going over the values. The neuro asked for it because he said his office orders far more tests than a typical PCP does so he may ask for me. I'll post the results Wednesday afternoon and hope for feedback. Everything from thyroid to motorneuron disease went through my head and still does. That hunt for an answer is so hard. One day you're fine, next you're not, it's so weird because people think you're crazy when you know you're not. I also get these weird chills that seem to run down the left side of my body, another weird thing that made me stop and think...what the heck is that? You reallly get a to a point where you lose track of what's real and what's not. With the tick problem we had and the very close timing to my health problems, three months later, I want to jump on the testing. Please send me any tips on a doctor local to me, I will go! I have wondered if I have some parasite from sushi, that's how far my mind has taken me in this quest to find my own answer.
Posted 1/9/2011 10:10 AM (GMT -8)
you know what, i was just looking at Lyme symptoms...my PCP had me wear a 24-hour heartrate monitor last year because I was having irregular heartbeats, throwing PVC's like mad. I started doing that again this time but figured it was stress. I've also had them but I was getting major runs of tachycardia and PVCs with that breathing problem. This is really making me think now.
Posted 1/9/2011 10:12 AM (GMT -8)
and another weird symtpom, freezing cold all the time. i had a big problem getting my body to warm up, only a warm shower seemed to jump start me.
Posted 1/9/2011 10:13 AM (GMT -8)
Most of us can really relate to the questions floating around in your head - because we have had those same questions ourselves!!

I don't personally have any info on Lyme Docs in Florida, but I cheated & copied & pasted this from our other forum Moderator, Cajungrl from another post where someone was looking for a LLMD;
---------------------------
For information on finding a Lyme Literate Medical Doctor(LLMD) in your area, please email our long time member, Dan's Mother at:
phassan@optonline.net
If you'd like more doctor suggestions, you can email stephanie at: stephanie@turnthecorner.org You can also go to: www.turnthecorner.org/bod.htm if you want to learn a little bit more about Lyme Disease.

You can also go to The Lyme Disease Association and search for LLMD's 3 times in a month. You have to register first. Here is the link: www.lymediseaseassociation.org/index.php?option=com_content&view=article&id=277&Itemid=74

You will want to find an ILADS(International Lyme And Associated Diseases Society) doctor. The ILADS site is a great place to read to get you started on your Lyme journey. www.ilads.org/lyme_disease/treatment_guidelines_clearing_ilads.html

For great info and links, read the topic at the top of the forum titled,"New To Lyme?......Start Here!" It will help to get you started learning about Lyme Disease.
---------------------------------------

I wish you luck, not only with finding an LLMD, but on your journey to health.
Trav
Posted 1/9/2011 10:30 AM (GMT -8)
I see a Lyme Dr in Orlando, e-mail me if you need his info, there is also one in Tampa but you would need a referal to see him. I have problems regulating my temperature due to dysautonomia
Susie.
Posted 1/9/2011 10:59 AM (GMT -8)
Hi Susie,

I can't figure out how to email you. I'm new on this site. Could you email me at mentalcompass@yahoo.com please with the doc's name. In my numerous Web searches, I came across dysautonomia too. I really feel like my problems are autoimmunue related but who knows now, it's hit so many areas of my body that I'm completely confused now. I'm going to do the Western blot for Lyme because it makes so much sense.
Posted 1/9/2011 11:03 AM (GMT -8)

mentalcompass said...
and another weird symtpom, freezing cold all the time. i had a big problem getting my body to warm up, only a warm shower seemed to jump start me.

It seems as if there are lots people that have a tick-borne infections also have a lowered body temp. - but this could be because of a thyroid dysfunction also - I believe.

For me, my normal body temp is 97.4, and I have low thyroid levels
(Hashimotos' thyroiditis) and adrenal exhaustion - both of which I am on meds for.

When I first started checking into Lyme Disease as being the reason for my health issues, I was amazed that suddenly all of my health issues were being spoken of in one place!!
Posted 1/9/2011 1:24 PM (GMT -8)
I will e-mail you with my Dr's name. I also have low blood pressure as well as the temperature issues. My thyroid is OK but I do have adrenal fatigue which is causing the  dysautonomia. I have increased my salt intake and take adrenal support including licorice but don't seem to be getting anywhere. My husband has Hashimotos' thyroiditis and adrenal fatigue.

Susie

Posted 1/9/2011 2:09 PM (GMT -8)
Just an observation, but if Lyme or other infection is the cause of the problems, your previous treatment would have really made things worse.  Prednisone and steroid shots reduce inflammation -  by suppressing your immune system.  This would have allowed any infection to become more active.  If things seemed to get worse about that time, prednisone and steroids could have been the thing that did it.

Hope you find some answers - soon.

Posted 1/9/2011 2:25 PM (GMT -8)
Honestly, the more I did last year, the sicker I became, it blew my mind because here I was getting treatment and while it would take the sinus infection down...it didn't prevent it from coming back and I was just sick every single month from Jan to June, I couldn't get well no matter what I did. I gave myself breathing treatments and had so much fluid in my lungs, I honestly belonged in the hospital, I was really, really scared, I'll never forget that. I couldn't do anything because all I wanted to do was sleep. And I kept getting hit by wave after wave of illness that seemed so unconnected that I thought I was having a total failure of my immunue system. I was actually afraid to go anywhere and touch anything, like a shopping cart, for two months after I cleared the last problem. Then summer comes and I was fine, just fine, I had a bad stomach flu and after that ended, nothing came back until November. I was pretty darn confused I'll tell you that much. I kept attributing this to the drugs I was on but I was on so many, I didn't want, if any, were responsible. At my one point, my sinus infection was so bad, I lost all sense of taste and smell for 10 days and I was sure it'd never return, but one day I caught a whiff of my coffee and was breathed such a sigh of relief. Even my when my ears were so stuffed up I couldn't clear them, the sinus CT scan showed no infection, which I found crazy, how could that be? I couldn't even breath and I sure had what felt like water backed up into my ears. Nothing made sense and now, nothing makes sense again. I sometimes get sick to my stomach for no reason, or really shakey and depressed and then it just lifts. My throat is sore today and my nose runs. The only thing that preceded those two episodes was clear snot, a lot of it, that was hard to clear each morning. That was gone all summer but came back right before all the nerve problems showed up again. How can things that reasonably seem totally disconnected medically actually be connected? It has to be something, obvoisly.

You know my PCP wanted me to go back on steriods thinking all this was a pinched nerve in my neck! I didn't do it. I have a disc herination, yes, but it's on the right side and the pain is on the left. Also, that didn't explain my left leg pain at all. He said...well you probably have a herination lower down your back too. Okay, sure, I said, and all that just suddenly showed up overnight for no reason whatsoever, I wasn't building a house or chopping wood or swimming the English Channel, I was friggin sleeping. I've done a lot of sleeping over the years and never injured myself doing it. So you know what he said? How old are you? I'm 40, I replied. Well, stuff starts happening to us around now. He's the second doc who told me that, like I passed through some portal at 40 where I should writing a living will or call hospice. That's plain stupid if you ask me.

 

Posted 1/9/2011 3:28 PM (GMT -8)
i used to joke all the time that I was so Type A and high stress, juggling so many things and facing so much stress in my life that I shocked my adrenal glads still worked. Doesn't seem so funny anymore to me. :(
Posted 1/9/2011 7:02 PM (GMT -8)
I am sorry that you had to go through all of that, Menatal!
Unfortunately what you have just told us happens all too often. Regular Docs just don't have the training needed to be able to properly evaluate patients for potential tick-borne infections. So the majority of us go through experiences like that one you described.

How are you doing? Have you been able to find a LLMD yet?

You really should start detoxing - IMO - Our bodies absorb so much pollution, chemicals, and other toxins. One school of thought is that that is why some of us end up with chronic LD, because our bodies are doing all that they can to rid the body of toxins, that when we are exposed to tick-borne infections, they happily come along for the ride!

And detoxing isn't hard to do. In the thread at the top of the forum title "New to Lyme...", you can find instructions on what you need & how to do a detox bath or even a detox foot soak!! You may already have every thing you need to do one in you kitchen! Also dry-skin brushing. My Acupuncture Doc said that my skin health has very noticeably improved, and I've only gotten serious with it for the last three months!!

Dry skin brushing is not supposed to hurt, either. If you have to you can start off with a soft, dry wash cloth, and work you way up to a soft, natural bristle brush.

I hope this helps some...
Posted 1/9/2011 7:12 PM (GMT -8)
Mentalcompass - several yrs ago I too was having horrible sinus infections, that would also get in my lungs. I would take several rounds of increasingly stronger ab. to get over the infection. 1st I by coincidence found I was allergic to Christmas trees, the 1st year I bought a fake tree, it was the 1st year I didn't get a sinus infection that lasted until the end of Feb. Now since 1988 I had been having all kinds of health problems and unexplained pain sx. including what you describe as electrical sensations. Numbness, and tingling, migraine type h.a. joint pain, muscle pains, that moved around one day to the next. I spent 22 yrs. Being dx. by my G.P. with Fibromyalgia, chronic fatigue syndrome, narcolepsy, major depression, anxiety, multiple chemical sensitivities, asthma, allergies, rosacea, vertigo, the list goes on and on.....I had always suspected I had Lyme dx. (that's a whole other story) I was finally dx. with Lyme and co-infections only a year ago. I have learned how this dx. Destroys the immune system, leads to multiple allergies, and I have personally had ALL the various problems you described. Find a LLMD and get tested (yesterday)!
Posted 1/10/2011 5:57 AM (GMT -8)
I'm going to get tested, absolutely, and I'll order the Western Blot today and get my doc to take the blood, he'll do it. Last night I started feeling really bad, muscle aches like I was getting the flu (my kid just had strep and she had respiatory infection the entire Christmas break, which I never caught) so I assumed it was catching up with me. My nose burned and it was running down the back of my throat. I had a 99.7 fever and I ached all over. I went to bed with two Nyquil tabs. Had really bad stomach ache too. I got up today except for several bathroom trips (don't want to be gross), I'm not sick. See what I mean? Now, you CAN NOT will yourself temperature like that, I had the darn chills too. I honestly think I'm infected with something and if it's not Lyme, I would shocked to the core of my being. I can't wait to get tested because now I just want to know. This is just outrageous, don't you think?
Posted 1/10/2011 6:05 AM (GMT -8)
Years ago I used to to the Master Cleanse once a year, it's harder now with my kid because that detox takes a great deal of rest and centering. I spent 12 years wanting to have a child and after that detox, I got pregnant, I think it was the detox. I read about the detox bathes and I have a few questions on this.

Can you do the parasite cleanse at the same time as the bathes, or should one come first?
Does anyone recommend the Master Cleanse or just the bathes and foot soaks?

I'm going to go back to the accpuncture doc too, she fixed the nerve pain in my right arm, after of which is moved to the left and stayed there. I think I really need her now. She also imports fresh herbs and mushrooms and other assorted healing meds from China, she puts together bags of what you need to brew into tea. My husband adores her, he's follows all her medical advice, and she was medical doctor in China too. She's quite smart. It's so expensive, her sessions, but I going to have to go back and take a hand in my own healing, I can't keep going on like this.

I'm guessing I should see the LLMD after I get a positive on the Lyme, if that's what's wrong. I need a positive on that test to see this type of doctor, right? Or, do they also look for other causes of chronic illness?
Posted 1/10/2011 6:10 AM (GMT -8)

Hi mentalcompass 

I certainly understand your situation too!  And welcome to this wondeful board.

Your symptoms that coincided with my own-- which  also seemed to be disconnected to one another  (until I realized it could ALL be Lyme related) are: 

upper respiratory and sinus infection.... weird feeling in my head like I was going crazy, depression, general ill feeling.

Tingling in my left arm, numbness, dry eyes, hypersensitive skin.  

Odd pressure changes in my sinus cavity--  feeling like I was on the verge of being sick but never did. 

Headaches-- but not migraine-- wicked back cramps over the right shoulder,  big knots !!! formed around the shoulder blade. 

Tingling in the area around the shoulder blade, pins and needles feelings. Massage therapy didn't work long term.

Severe tennis elbow too.

My neck felt so stiff and weak I couldn't hold my head up.  My own cervical MRI showed minor bulging, etc. but no doctors could attrribute it to the pain I was having.....

...and there was no weakness in my arms either.    

Also.... those rocketing nerve impulses running through my body, like my nervous system signals were stuck in some roundabout with no end, I was skaking all over and developed muscle spasms and fasculations all over.

Also had pin prick sensations everywhere.

What worked for me, at least to lessen nerve pain, was  Ativan.  Don't know why.  Just took it at night so I could sleep.

You mentioned that:  all my pain just stopped, all the nerve pain was gone and my muscles felt great, my wrist didn't hurt, nothing hurt, I felt normal in my head again, I was me. I wanted to jump for joy but it all came back a few hours later.

This would happen to me too!

My doctor said I had atypical Lyme symptoms and my first blood test came back 'indeterminate'.  But did put me on Doxycycline for five weeks.  All my weirdo symptoms went away except for the stiff neck and elbow pain.

At that point, another doctor who said my blood test for Lyme had come back negative, suggested I stop taking the Doxy for a week to see how I would feel.  He did not believe I had Lyme.

I felt great for about 10 days--- then symptoms slowly creeped back.

But then I had ONE DAY of feeling completely NORMAL!   Very bad tease because the next morning  I relapsed badly with a lingering migraine headache--- loss of balance (walked into a wall) all my shoulder, neck and arm pain was raging again. 

Went to new LLMD who put me on Amoxicillin and all of my symptoms are going away-- except for tennis elbow and some lingering but very sporatic shoulder blade pain. 

Still have a dopey feeling in my head-- like the kind you get when you stand up too quickly-- and I have this most of the day.  It's getting incrementally better, day by day. 

I have to stop typing now--- can't concentrate much this morning. 

You have come to the right place for outstanding advice, comfort and compassion!  

Posted 1/10/2011 8:33 AM (GMT -8)
HI Mastercompass,
It is always suggested to move cautiously ahead when someone has or suspects they have Lyme or another tick-borne disease, as some times the smallest change can cause symptoms to flare.

IMHO (& I am not medically trained, is that you start off doing a simple bath or foot soak - for only about 10 minutes, wait & see how well your body deals with it before adding more time in. When I first started using detox bathes & foot soaks, I stayed in for 20 minutes & had a migraine the rest of the day!! I kept trying to get in a 20 minute soak, but every time I would end up with a migraine.

Thanks to this board, it was recommended that I only stay in for 10 minutes at a time and only do the detoxing 2 or 3 times a week to start. Well, I had to back down to once a week, but I was after about 2 months of that, I was then able to start detoxing a lot more often and was able to stay in the detox bath for longer & longer.

Personally, I am excited that you are going in to see an Acupuncture doc, as that is what I have to use, as my body just will not handle the abx. Acu Docs look at the body as a whole - where Western Medicine looks at the parts & pieces of the body individually. Although a lot of LLMD's use an integrative type of treatment, using pharmaceuticals as well as herbs. There are a few Naturopaths who are also LLMD's, so I would find out if one is in your area.

I hope this helps a little!
Posted 1/10/2011 9:37 AM (GMT -8)
Hi Cat. I honestly can't wait to get tested and talk to the neuro about this. I have a closet full of Amoxicillin from last year, I could treat myself if I knew this was Lyme. I'd do darn near anything, as you know, to wake up feeling good and last that way all day. Nerve pain wearns you down fast. I'm going to do the soak tonight and see how I feel, lets see if I can do a few soaks and if I feel better. When all this started, I tried Epsolm salt baths, this was when the problems was in my shoulder and right ar but I had the water too hot, so hot I felt like I'd pass out so I was only in for 15 mintues. I'm going to do the detox bath, might as well, it could be some time before I know whether this attributed to Lyme or not.
Posted 1/10/2011 10:55 AM (GMT -8)
Be sure to let us know how you do with your detox bathes!
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