Light headed, headache, spacey feeling. Tons of tests done, no result.

Hey Ro, morning,



I'm on Ceftin, 500mg 2xs/day, which from what I've researched might not work like you said to breach the brain barrier , that only IV antibiotics work. What are you taking? She also gave me a script for Rx strength probiotics, VSL #3 DS, it has 8 different types of good bacteria and 900 billion CFU (colony forming units). Of course my insurance doesn't cover this and the cost would be about $118/10 day supply. So I'm price shopping for comparable over the counter probiotics. Their website http://www.vsl3.com does have lower strengths available also but it's expensive, so I'm shopping around. Haven't found anything that comes close in CFU in the health food stores but I'm not done yet :) She recommended The Lyme Diet, I going to get that book and give it a try, NO sugar, Lyme thrives in sugar. Also, which didn't show on my general initial blood work with my regular MD but did on what she ran is, slightly low levels of B12, and recommended I start taking Methylcodbalamin, 1000 IUs, it's a formulation that melts on the tongue, digestible pills don't work. Of course exercise, ugh, so don't have the energy but will try to force myself!! What are the cyst busters? Any info you can offer would be greatly appreciated. My boss, who's also a friend put me in touch with a friend of her's who has been all over the US for years with different doctors before finding a LLMD in NY two years ago and is having great results and finally getting the better of it :) She's currently on antibiotics, not sure which ones but also says it has to be treated holistically, recommended the book "Healing Lyme" by Stephen Buhner and Joseph Burrascano's treatment guidelines(free online to download) diet and exercise (there's that exercise thing again, ugh!!) NO sugar and gluten can be a problem for some. She does weekly acupuncture treatments and he's also a master herbalists who makes a tonic specific for Lyme and she also does weekly Myofascial release therapy , not sure what that is yet. I'm assuming she has waaay more funding for this than me but I'll start off with what my doctor recommended and do what I can. I'm sure you already know about a bunch of this stuff anything you're doing that is helping or have heard about please let me know. Thanks!!

Oh oh oh, one more thing I almost forgot!!  I have no idea if any of this is true or could help some/all of us with symptoms even if we each have something entirely different but it's something I just happened across, kinda like this site.  Believe it or not....coconut oil is suppose to be great for so many things, especially brain function and energy.  I was picking up protein shake powder for my son at the local health and fitness store months ago, before the dizzies and saw coconut oil for weight loss and reduction of belly fat, what women doesn't want that ;)  I figured I try it, only $15 for a 16oz tub.  When I got home I put it in the cabinet and never thought about it again...lol.  A few weeks ago while searching all this stuff, came across a website toting coconut oil for memory loss, then ended up on a discussion site forum where people were discussing how they were giving coconut oil to their parents with Alzheimer and having significant results.  Sooo...I figure I already have it sitting there, I might as well start taking it.  It's also suppose to be good for hair care, skin care, stress relief, maintaining cholesterol levels, weight loss, increased immunity, proper digestion and metabolism, relief from kidney problems, heart diseases, high blood pressure, diabetes, HIV and  cancer, dental care, and bone strength, benefits attributed to the presence of lauric acid, capric acid and caprylic acid, and its properties such as antimicrobial, antioxidant, antifungal, antibacterial, soothing, etc., I just did a quick look to see if I could find that site and couldn't but here's another site with info regarding it... http://coconutoil.com  It has to be 100% organic, I have the Barlean's Extra Virgin, 16 oz container and am taking 1 spoonful 2xs/day, there are a bunch of different brands, just make sure it's organic, cold press fresh, etc.  It's in a solid form, it actually tastes good but was a bit too oily for me at first, I've gotten use to it now.  Here's a video from YouTube I just found http://www.youtube.com/watch?feature=player_embedded&v=vOBuAe1IVRM#! Could have help with my dizziness or could just be the antibiotic or a combination of all....

Okay...right now I need to vent!!  Called my doctors office this morning for the MRI results and was told they received them this morning and closing at 4pm and once the doctor reviewed them either he or one of the nurses would call.  6pm rolled around and still no call.  So...I started thinking, hey...this is my body, my brain, my health and my money paying for it, I have a right to the results.  I got in my car drove to the Imaging center and got a copy.  When I was there they told me the results had been faxed to my MD on Friday, not sure what that's all about but whatever.  The report states something about T2 hyperintense lesions, noted abnormality in the corpus callosum posteriorly, differential would include ischemic, demyelinating, infectious/inflammatory causes.  From what I can find out online this can point to MS, from all my research over the past few weeks there have been so many documented cases of Lyme being misdiagnosed as MS.  I'm so pissed that my doctor didn't friggin call me, I think that's really crappy!! 

Thanks Gambs..
My intake daily is mornings > 500 mg L-Lysine and 1000mg Ester -C to help boost immune system, 1 tab 50mg of Biotics Reasearch Corp ADP (Orgegano extract) to help control yeast and or parasites (2weeks on 10 days off then repeat every meal and before bed except with lunch when you take your probiotics), 1/2 my multivitiman, 1/2 cup aloe vera juice (helps keep alkaline state but tastes like a shoe.. lol) if you are getting migraine/head pressure try taking Alkaseltzer Gold helps relieve intensity and also puts you in an alkaline state, I stay low on carbs and even lower with sugar - control of these are because the antibiotics kill off a hord of good yeast leaving the bad dominant to thrive.. if not for probiotics (good yeast) the bad would turn rampant into mold issues(systemic Candidas), 1/2 cup (couple of swigs) of Kefir - I get the strawberry which has a lil sugar in it because the plain tastes like c**p.. lol.. I have a cup of green decaf tea with lemon - oatmeal or cream of wheat with a lil honey and a slice of whole wheat bread toasted with peanut butter, a full glass or two of lemon water (cut a quarter lemon squeeze and put in in filtered waterand 1 tab of Bactrum DS
Lunch
chicken- fish- veggies- humus- my probiotics vitiman shoppe acidolphilus and a couple others costs less then $30 I take 4 tabs all at once with lunch - if your tonge is getting a lil white take a spoon and scape softly to clean reach as far back as you can as not to gag then take one of those 4 probiotics tabs and open on tonge and work around awhile before swallowing, my other half of multivitiman, water water water, and about 1/2 hour or so after lunch I take 4 tabs of Vibrant Health Green Vibrance.. this balance for what I am taking keeps my yeast in check.. adjust as you break stride and have that extra bread or pasta by taking a few more swigs of Kefir.. learn your own balance..
dinner
eat healthy, veggies-fish-meat-chicken-avocado.. I am a contractor so I burn carbs like crazy.. I first started the no sugar low carb thing and I lost 15 pounds.. just wasn't happening.. learned I can up my intake as long as I offset it with a higher good yeast/flora .. Kefir works well for me I can always take a couple of extra swigs when I feel a need to balance.. and lemon water (helps detox your system)
after dinner
I take coconut oil, garlic tab, and chlorella (it says you can take up to 30 200 mg tabs a day but I only take 5 supposed to help flush out heavy metals by bonding to them probably could double the intake just started my self so taking slow.. snack/movie time is some veggies and mixed unsalted nuts with more lemon water.. before bed I take a couple swigs of Kefir along with my second Bactrum DS tab..
I have been taking AB now for almost 2 months.. this last month was tough.. the docs start you out with a AB that fits your world but they dont pull the big guns out all at once becasue your immune system gets stressed the first couple of months.. then they step it up/mix them up once you look like you can handle it.. for me the bad comes in waves.. crappy ok days then I'll have a brutal streak.. during these times I rest.. drink lots of fliuds.. sometimes if pushing it and out in truck if its a hot day I'll drink alot of fluids prior then sit in the truck on a hot day with windows up and let it heat up.. bacteria hate heat.. sweat like crazy just don't pass out.. lol or let someone know your doing it.. or I'll set up an epson salt.. peroxide.. alor vera HOT bath.. as hot as you can take it and drink lemon water while in it.. sweat sweat sweat.. crazy it sounds I know but so far so good.. and remember that bad yeast n bacteria get smart after awhile so they get used to/find ways around your rescheme.. switch out your oregano tabs for something else.. good Lyme docs will jocky around a mix of AB to keep them off balance and so should you controlling the yeast / parasite / in your system.. careful taking herbs if you are not sure.. some will not sit well with you.. learn your body.. go with what feels works for you.. oh and the cyst buster I was using was Nutrbiotic GSE (grapefruit seed extract) its like a liquid bleach for your system.. I started to early with it and couldn't handle it.. system was too stressed.. taking it you are basically telling them all 1-2-3 get off my fathers allple tree and they all come out and play.. lol.. too many too soon.. docs have other prescrip busters but this one cost $10.. good luck please keep me informed.. ty

OMG, Ro thank you so much for taking the time to type all this out and include cost saving options, what you eat and your experience working your way up to some of it. You just totally made my night with what I consider to be a random act of kindness :) This is great!!

Hope this helps someone. I went to my doctor and on the fourth time I was given a small infant dose of Valium. My doctor said that a migraine probably blew out my head's sense of balance and taking the Valium for a week knocked it back into place. I'm back to normal after a month of the symptoms you all have!

Gambs, I also have had these symptoms and abnormal MRI that stated "post-inflammatory changes that do not correspond in pattern or type to lesions seen in MS", also on T2 scan. What the hell they are, I have no idea. Doctor scheduled me for another MRI in July, with contrast, he says "don´t worry". I am going to schedule appointment with another neuroradiologist. The pressure behind my eyes is horrible. I have had balance issues, as well. Good luck to you.

Joshua, that's great news!!

Lady, I'm not sure what the hell they are but your doctor saying don't worry, although great advise.... but yeah right, thanks pal!! Kinda easier said than done....lol. I'm glad you're getting a second opinion. I believe always questions and get additional opinions.



There's another site and not sure if they are going to block it out, it's MedHelp, you can do a google search and get there. There are so many people with Lyme that just aren't being diagnosed correctly, the tests don't pick it up and it does eventually cause lesions on the brain, which I just found out on that site. It effects the whole neurological system. Maybe someone on there can offer additional input, some have been suffering a very long time, going to doctors for years, ended up questioning, not just taking the word of their doctors and are extremely knowledgeable!!



It could even be something like a vitamin deficiency, who knows but in my opinion needs to be looked into and hopefully corrected.



I think, don't worry, in general is very good advise, I'm not freaking out, I do have moments...lol but know that I'm not just going to take whatever they say without making sure I'm being treated correctly. If they treat me for MS and it's Lyme, the MS meds would wreak havoc on the Lyme and I'm not willing to blindly accept that without ruling everything out!! My theory, hey, I make mistakes at work, I'm human, so are doctors.



My mom has a friend that was diagnosed with MS for years with no relief on meds and I'm hearing so much of this. He eventually found an LLMD who did other testing and found one of the other tick born diseases and is doing great for years now :) I'm seeing the neurologist next Friday, my MRI was with contrast, I want to see what he says and am scheduling an appt with my Mom's friends LLMD doctor for the following week.



Is your neurologist treating you with meds for anything? I'm just curious why you have to wait until July? I can see if you are on meds and then checking to see if there is progress but if not, why should you have to wait....just my thoughts....

I am 43 year old woman. I was in an accident in the last year. Then rear ended in April. I have an MRI this Sunday for a low back pain that shoots down my leg. (pinched nerve?) Not getting better. Anyway. My neck and back have been screwed up since accident. I too have a fog feeling, drunk feeling, vertigo, detached feeling. It is awful. Sometimes I feel worse than a drunk driver when I have to drive somewhere. I didn't feel this bad until the accident. I've always been dizzy here and there but not like this at all. I also recently experiencing shaking and tremors in my neck and hands mostly. Just periods that last hours then stop out of no where. I cannot relate them with anything so far. But I am assuming this is either from a pinched nerve or something else. :( Worst part is not knowing. Take care...keep us updated please.

My symptoms are getting unbareable i really dont know what to do. Past week or so i have to constantly remind myself im not in a dream

Hi Gambs, well I have to wait till July (next quarter) because of insurance reasons, and the neurologist said it was not "dangerous enough" for him to order another MRI right away. I have some days that I panic, most days are good. I think I´ll get checked for Lyme, as you suggested. I remember being bit by a tick 4 yrs ago, but never had a rash. But I do remember a colleague telling me her daugther got Lyme´s without a rash. She also went from doctor to doctor before they ordered a Lyme test. I am still extremely tired so that I start shaking, very sensitive to cold, little twichings in my calves, the pressure in the head has eased up a bit, thank god. I started taking B12 but am not on any other medication. Whatever this is, it is systematic, it is definitely not in my mind, it is a reaction to something. I remember feeling this way when I was younger, especially the head pressure, but without the numbness and tingling.

I hope you get your MRI cleared up, they call MS a great mimicker, I say, let´s find out why you feel this way. Whatever this is, I know it will get better, you should also take care of yourself, help your body heal.

I am just surprised how many people feel exactly the same way, yet diagnosis is so hard to obtain. I have had anxiety before, and this is not it, anxiety is panic, this is neurological, perhaps benign neurological, but IT IS SOMETHING. I hope all that are searching for answers find them soon.

One more thing, I noticed Gambs, that you said you had "aches all over" which puts you in the category for several other things like Chronic Fatigue Syndrome or Fibromyalgia. These can cause abnormal MRIs, as well. I almost wish I had pain, but I do not. I have no pain anywhere, no joints, no muscles, which perhaps then speaks to the MS diagnosis, but then the radiologist said "lesions not typical of MS"....great mystery, it is.

Morning..
Now taking a second A/B called Malarone for suspected coagent of Lyme called Babesia.. Hit me like a bus third day in.. Alaseltzer Gold worked for awhile but my eye strain (actually nerve n muscle) became so intense that a couple times I lost control of them.. I was freaked when it happened.. all I could do was bury my head in a pillow until they were mine again.. following I made an appointment with Nuero.. she asked what pain level I was at (was a 7-8 that day) she put a Triptan powder under my tonge for about 10 minutes and then asked me again while she did an electronic test for suppressed and/or pinched nerves.. the Triptan took my eye pain down a level in 10 min where a full effect is not until 30 that way.. . so now I am taking the two A/B Bactrum n Malarone.. an anti depressent Amiriptyline HCL 25 mg which I was against taking any A/D from day one.. primary doc tried to get me to take Zoloft.. which is more of a mood/behavier control.. Amitriptyline is more of a sensory suppressant.. which makes more sense when eyes and ears are over sensitive.. on almost two weeks now and since that last bus ran me over I have to say I still have the ringing and disorientation with motion but I have not had a day where my eyes and/or ears have shut me down from being too sensitive.. gotta run.. Ro..