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Posted 5/5/2016 1:21 PM (GMT 0)
Hey Everyone,

This will be a bit of a novel so I apologize in advance.

I need some input on whether I have Lyme or not or possible MS. about 4 years ago I had an episode where I was going through extreme stress. Right after my legs felt very shaky, I became very weak. For 3 months I continued to go through this along with some numbness, tingling, and shooting pains in my arms, and muscle twitching. Everything resolved and since then up until the past fall my main symptoms were head pressure ( not a headache), neck pain, what feels like a buzzing area in my spine ( not the Lhermitte's though) and sometimes a head buzzing sensation. In the fall last year I started losing weight, about 40 pounds to date without trying, hair loss, nosebleeds, lots of cherry angiomas, easy bruising and very sore ankles. In February this year after another stressful period, I got sick with some kind of infection after which I started experience tremors and adrenaline surges. I went through all kinds of blood tests, it showed reactivated EBV, high cortisol, low Vit D, and Low Iron. I started on supplements and felt a little better, then got Flu A. Everything went down hill again after that, extreme panic attacks, feeling like I can't catch my breath, body burning sensations. The tremors and surges happen mainly at night. Sometimes when I can get to sleep, I wake up with my limbs asleep. Once I get up and move they are fine, but I haven't been laying on them. I was shaking so bad that my boyfriend took me to the ER because we thought I was having seizures. They did a CT Scan of the head that was negative and referred me to an Endo specialist who says my thyroid is fine. My vet advised me to get tested for Lyme ( I am a dog trainer and own a dog boarding facility) I did through my Naturopath and the western blot came back with Band 23 positive. My Naturopath knows a lot of Lyme and says that this band is specific to Lyme. I made an appt with an LLMD and will be starting the treatment in two weeks. She said I "scream" Lyme. I have had two neuro exams, though I have not seen a neurologist. When I have brought up MS, each of my doctors says " I don't think you have MS" and with the positive Lyme test that is what is going on. My question is, should I still see a neurologist even though I don't have the trouble walking/optic neuritis to try to rule out MS? and could they even rule it out if I do have Lyme? I have heard that they appear similar. I am 34 and work about 60 hours a week. I will absolutely follow the treatment protocol for Lyme, but my GP refuses to believe I have it. She also won't refer me to a neurologist and wants to put me on Prozac. I have had anxiety issues all my life and never needed meds......these issues are very different. Any advice would be very appreciated. Thank you!
Posted 5/5/2016 1:40 PM (GMT 0)
Hi there. I would not mess with another neuro. Band 23 is specific. You do scream of Lyme and coinfections. They overlap a lot, so I can't tell for sure which one (Babesia or Bartonella). With your exposure to dogs I would be suspicious of Bartonella. A few months before I got really sick I was bit by a dog while running. Strangely that dog had tested positive for Ehrlichia that same month. I think it was probably my tipping point.

All your other labs are very common with Lyme (EBV, low vit D, iron, cortisol). The cortisol may explain the adrenaline surges.

We share a lot of the same symptoms. My limbs go numb every night - even my face and neck will go numb but mostly it's hands/arms/feet. My symptoms came on out of nowhere - numbness, buzzing, a feeling that I couldn't relax (shaking inside), twitching, muscle cramping and lots more but those were my main ones. I have red dots on my arms and legs too - more like petechiae than cherry angioma. My symptoms calmed down considerably over about 3 months (no treatment) but the numbness and buzzing (chest shaking inside) have stayed with me. I had MRI's to rule out MS too. The bottom line is we don't know what causes MS and there is no cure - but I highly suspect it is a mix of viruses/bacteria and likely genetic factors. So, treating the Lyme is about the only thing you can do.

My GP put me on Xanax when I first went in. It may have helped me sleep some but that wore off. Otherwise, it did not help at all. I wouldn't mess with the prozac. Trust your gut. Good luck and keep us posted.
Posted 5/5/2016 2:58 PM (GMT 0)
Hi QueenFrostine!
Welcome to our community! I'm so glad you found us.

If you haven't ​yet​, it would be helpful for you to start with reading through the thread at the top of the forum titled,"New to Lyme?...Start here!!", as it is packed full of important information, symptom lists, helpful links and pdf's, how to detox when one has these infections, information on probiotics and much more. And this is another good list of possible detoxing routines: www.tiredoflyme.com/detox-methods.html

I would agree with your NP - Band 23 is specific for Lyme, which means nothing else will show up as a positive on that band. Heck, not even all the strains of Lyme can make band 23 positive, only 2 out of the over 300 world wide! We have 100 strains here in the US alone.

Lyme often mimics many other conditions - over 300 other conditions actually: www.lyme-symptoms.com/LymeMimics.html

And MS is in there as well. I was yelled at by a doctor that I would die soon if I didn't start treatments for MS that very day - well, here it is 18 years later, and I had Lyme and company, not MS. This is actually a fairly common misdiagnosis.

I would encourage you to have your adrenals tested by a 3 or 4 collection time of saliva (the most accurate) cortisol test. I have severe adrenal issues and I too have that shaking that can happen if I'm not careful and stay in treatment. Also, try eating high protein and eating every 2 - 4 hours. It doesn't have to be a full meal that often, but a little bit of protein every 2 - 4 hours can really be helpful if your adrenals are struggling.

But particularly because you work so closely with dogs, your chances of having these infections is higher than it would be for many people.

And many, if not most, GP's don't want to have a Lyme patient, so they just won't diagnose it, or believe that they have a patient with these infections. These infections spark a very hotly debated political argument, and so many doctors also just don't want to be caught up in that.
ILADS vs IDSA:
www.clinicaladvisor.com/controversy-continues-to-fuel-the-lyme-war/article/117160/

archinte.jamanetwork.com/article.aspx?articleid=226373

www.ncbi.nlm.nih.gov/pmc/articles/PMC2901226/
Posted 5/5/2016 4:03 PM (GMT 0)
Welcome QueenFrostine - boy do your symptoms sound familiar. I am so sorry you have lyme.

The one thing you said that stuck out to me is "should you go see a neurologist?" -- Absolutely NO! Unless you want to be totally confused by he/she saying you don't have lyme and then wanting to put you through many other tests. Just my opinion, but I have not seen anyone with good outcomes from a neuro.

My opinion is start eating as healthy as you can afford.

Start a journal so you can keep track of appoints, meds, herbs, symptoms, and feelings. You will be so glad you did this.

Learn about detoxing and why it is talked about so very often in this community. www.tiredoflyme.com/detox-methods.html

Many of us with lyme have had anxiety for the first time because of this tick bite. I had anxiety with a bit of depression. It was absolutely horrible!! I did take something to help me get used to what was happening to my body. There is no embarrassment in needing help.

And here comes the hard part..... try to avoid stress. For some reason lyme is activated and flourishes on stress. I am sure someone here has a scientific explanation for it. All I know is that I had to learn to say "no" to situations and invitations and I kept my calendar to a minimum. Sometimes I only did 1 thing every 3 days.

I am sure you know have many more questions and please feel free to ask.
Posted 5/5/2016 8:17 PM (GMT 0)
Wow. That sounds a lot like my story in terms of symptoms when this nightmare first started. I, however did not have a competent enough doctor who basically dx'd me with chronic fatigue and anxiety. I haven't even at this time bothered with updating him on my dx a year later. I guess I'll get around to it one day.

I agree with Peteza, no other testing necessary. You have Lyme and definitely co-infections. The high EBV, low vitamin D, low vitamin A, and mounting anxiety was how I stumbled onto a Lyme dx just last month. Luckily I was already treating the EBV with herbs helpful for Lyme.

I guess that's your next decision. Antibiotics, herbs, or a mixture. Some are even doing homeopathy.

Good luck!
Posted 5/6/2016 5:56 AM (GMT 0)
Watch under our skin on hulu...and justinandcristie on u toob...you are up against a big system and a bad bug...yoh maybhave to slow down at work...i am glad you fojnd a llmd...please do not take ms drugs or steroids...get a mri without contrast it will likely show hypoperfusion and they will say its normal ..its not ...or just start treating and hope for healing
Posted 5/6/2016 7:20 PM (GMT 0)
Hi Queen,

Your story sounds 99% like mine, from the symptoms down to your western blot results. I did join this site just to reply to you because it is hard to find someone with symptoms that mimic those of mine so closely. Even after seeing an LLMD and being on treatment for 2-3 weeks sometimes I am not 100% convinced of my diagnoses as I am not getting much better. I had gone through the Neuro route and also sought out a neuro at an MS clinic. After thousands of dollars, 2 CAT scans, MRI and about 50 blood labs they basically said 'you do not have MS or ALS' and gave me Ativan and Lyrica. After taking those for 2 months and realizing they were not helping with the physical symptoms I decided to wean off of those and seek out an LLMD. 2 ELISA tests from the Neuro were negative, but the Labcorp WB returned a pos. band Igm 23 and a band 41 on the Igg. Then we went through Igenex which returned a completely positive Igm and a few matching bands on the Igg. My LLMD decided that was enough for a clinical diagnoses so here I am, basically in the same boat as you but a few weeks ahead of you. We chose to do an aggressive antibiotic treatment first and then follow up with herbs after 3 months.

The one thing I noticed is that the onset of this was immediately after I herniated my L5/S1 disc. It was a central herniation which rubbed the spine and I think maybe that allowed the Lyme that was already inside me to take hold in my CNS But who knows really, I don't remember being bit, never took a tick off of me or had the EM rash.

I am on Doxy, Tindamax, Rifabutin, Naltrexone and will be starting Bicillin injections shortly. I just want to bang this thing out of my system as soon as possible.

Can you please tell me how long it took for your muscle twitching to subside? Mine are still going strong after 3-6 months and they are one of my strongest symptoms.
Posted 5/6/2016 7:57 PM (GMT 0)
Hi TymeToKillLyme!
Welcome to our community! I'm so glad you chose to join us!

If you haven't ​yet​, it would be helpful for you to start with reading through the thread at the top of the forum titled,"New to Lyme?...Start here!!", as it is packed full of important information, symptom lists, helpful links and pdf's, how to detox when one has these infections, information on probiotics and much more. And this is another good list of possible detoxing routines: www.tiredoflyme.com/detox-methods.html
Posted 5/6/2016 9:27 PM (GMT 0)
Thanks Traveler,

I will be sure to check out the thread and dig through the provided link. Happy to find others with similar stories.
Posted 5/6/2016 9:33 PM (GMT 0)
Please do let us know if we can answer any questions or be of any help!
Posted 5/7/2016 3:03 AM (GMT 0)
Oh I just saw this - welcome TymeToKillLyme!!

Sorry you went through all of those tests.

So glad you joined us.
Posted 5/7/2016 2:06 PM (GMT 0)
Thank you everyone for your replies.

TymetoKillLyme - 4 years ago my symptoms seemed to be in a pattern with the muscle twitching being the end of it. I think it still took 6 months to go away and has periodically come back since then. This time I am still having lots of it. Then it was the initial feeling like my blood sugar was dropping constantly, followed by what I think was nerve pain, then shooting pains, tingling and the last thing was the muscle twitching. I went to the doctor then and explained everything. No one saw any reason based on my exams to text for MS and said it was anxiety. Ironically enough the same doctor was supposed to have tested me for lyme, but when I went to pick up my records - there is no record of that happening even though they said it was negative.


Another part to my story, which I hadn't thought about is that 10 years ago I had a massive problem with vertigo. I had an MRI done with and without contrast at that point and they couldn't find anything. I went to PT for an inner ear issue, took the meds and eventually it went away. I think the thing that was making me consider MS was the fact that I felt like 4 years ago and now I am having a flare where there are a bunch of new symptoms that are worse, but looking back on everything I don't think I have ever been without symptoms. The head pressure has been almost constant, ear ringing happens almost everyday and I have had the sore spot on my head multiple times. Brain fog on and off ( although that seems better now). My symptoms seem to honestly jump all around my body. One day its my foot tingling, the next my arm, the next shooting pains in my face, it's hard to tell what will happen.

One other part of this is after I saw the Naturopath the first time, he started me on Andrographis for the EBV. I had not had nerve pain since the period four years ago, and the nerve pain was awful when I was on it. When I asked him about it he said it was likely a die off, that was when I told him my vet suggested I get tested for Lyme. He agreed because I think he said andrographis can kill spiros. Honestly I wonder if the Lyme would have even shown up if I wasn't taking that prior.

The spine thing is interesting. I have a spot on my back - not as far down as the L5/S1....mine is about half way down and it seems to be more to the left. It buzzes a lot, but when I try to make the Lhermitte's sign happen I can't. It doesn't seem to have anything to do with that. I don't know if that is a spine issue or a Lyme issue. Some days I feel like I have fibro, some days RA, some days MS and some days I feel totally fine.

I cant remember what abx I am supposed to start after my blood work comes back, but I will look. I have been taking .5mgs of Ativan to help me sleep. I try not to take anything during the day if I can help it. Both of these "flares" came after periods of extreme stress so whatever this is I am going to really try and work on my stress level.

Post Edited By Moderator (Traveler) : 5/7/2016 8:14:55 AM (GMT-6)

Posted 5/7/2016 2:16 PM (GMT 0)
QueenFrostine - the only thing I did to your post was to add spacing in. Larger blocks of text are very hard on the eyes some with Neuro Lyme. I didn't change or delete any words you used though.
Posted 5/7/2016 2:22 PM (GMT 0)
Thanks. I will be mindful of that:)
Posted 5/7/2016 2:38 PM (GMT 0)
Many that don't suffer with this don't realize it, that's why I took the liberty of breaking up your post. Thank you for being so understanding.
Posted 5/8/2016 2:07 PM (GMT 0)
Lyme is just a name. We can call it whatever we want really (doesn't change anything). Do you have the condition that others have on this board have? Very very likely. I've experienced everything you have. Heck I even experienced my limbs going to sleep a few nights ago (for no reason), the sensation actually wakes me up.

Like you said your GP wont treat it (not uncommon) but a good LLMD will.
Posted 5/9/2016 12:08 AM (GMT 0)
Hi QueenFrostine -

Great input by everyone here - hope it's provided useful info. And continue to ask questions if you have them.

I just wanted to share a link to thread I previously posted to share an article I read. It was an interview a lymee did with her LLMD, who had some interesting statements about MS and its origins as an INFECTIOUS DISEASE caused by microbial infections... and the recent interest in autoimmune issues and subsequent development of pharmaceuticals (follow the money). I thought it was fascinating and very pertinent to those of us lymees who have been misdiagnosed w/ MS or fears of MS. If you google "lyme and MS" you'll also likely find articles and studies linking some MS to the lyme bacterial infection and/or other bacterial/microbial infections. It's now known to be a common cause.

www.healingwell.com/community/default.aspx?f=30&m=3626061

I hope you have luck with your treatment - just know that it is a long road and as explained in the "new to lyme?" info, it is a process and at times, a very complicated and circuitous process. It takes awhile to feel progress. So please don't hesitate to ask questions.

-p
Posted 5/10/2016 7:11 PM (GMT 0)
Queen,

Sore spots on the head, shooting pains, etc... Are you also being tested for Babesia? I have also had these symptoms and am waiting on some labs to come back as we speak. I Googled the symptoms when the labs were ordered and they sound a lot like what we have going on, although they do overlap with general lyme symptoms and the tests are about as accurate as lyme tests so really it's a coin flip even if you have it.
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