New, Need Encouragement

Big Backyard with lots of Deer everyday!!  Big lyme area. Have pulled ticks off everyone in my family, (not myself though).  I have pulled ticks off my clothes.

Nov2013 - 39 year old mom - 100% healthy! No previous health issues. No MH issues either.

Dec 2013 - Two stressful events, weird symptoms emerge.  Bells palsy, Facial Numbness, Head pressure, Feels like flapping in left ear, No appetite, Nausea and rapid weight loss, some buzzing in legs, mild air hunger, sore throat and trouble swallowing.

Doc#1 - says bizzare symptoms, maybe sinus and virus, gives amox. for 10 days  tells me my heart is skipping and should see a cardiologist.  Feel a little better then symptoms return when antibiotics end

Jan 2014 - intense sore throat, doc says to try Ativan, maybe anxiety.  Take one pill and things spiral.  New symptoms: Intense panic attacks, massive insomnia, arm tremors, tongue, lips and chin shaking, feels like blood vessels shaking in neck.  Wretched dry heaving especially in morning.  I even started dry heaving in my sleep!

Feb 2014 - MRI shows facial nerve swelling.  Neuro#1 suspects lyme or brain infection. Eyes go blurry after MRI dye, not previously allergic.  Get spinal tap (which was negative for everything) but things go down hill again!  Head shaking like bobble head after spinal and shaking has persisted.  Have constant 24/7 throbbing and knocking sensation in neck.  Arms constant pulsating sensation especially after moving.  Random body parts start to shake briefly.  Increase in muscle twitching.  Feels like bugs all over my body. Nero wont treat me since all tests are normal, says to try MH to deal with symptoms.

March 2014 - Start to loose sensation in my legs and arms at times. Weight is still dropping regardless of what I eat.  Just want to be hungry.  Oh and I just want to sleep too!

Neuro#2 Desperate for help.  looking for someone to treat lyme even with negative blood results but bells palsy.  (No one will do this) Normal Neck MRI.  Normal heavy metal screen, thyroid and repeat lyme test. Says nothing wrong and prescribes Klonopin, recommends MH to deal with symptoms

 

ID doc#1 refuses to test for lyme claiming there is no way that I have it or other co-infections.  Wont test for bartonella, says there is too may false positives. (said lets test for AIDS).  Really crazy doc?  I don't have that (it was negative too)    She said I had repressed stress from lifetime events and that it was an accumulation of stress causing issues and should see MH.

Take klonopin and things spiral again! Wretched dry heaving again, cant eat.  Cotton mouth, I think im dying.  Resting heart rate from 50 to 120 and BP from normal to 155/100 Yikes!  Desperation sets in when my swallowing is paralyzed, yes couldn't swallow one day for like a few minutes and that night I got a painful buzzing in my throat (cant take this).

In desperation - Called an llnd who agrees to see me in a week and will give me antibiotics while waiting for test results.  (thank god my lifesaver!) also immediately went to local herbalist who gave me magnesium salt and a parasite tincture (woodworm, clove and ??) It definitely helped.

Started doxy 3x a day mid march and feel stabilized but not well.  Now I need to take the journey to better health with everyone else here.  Good luck everyone! 

PS. I've read about wasting and have ordered fermented wheat germ to see if I can stop the weight loss.  Its expensive but I'm desperate. anyone try that? Its in Burnhers book.

PSS - In less than three months I've lost my job and I'm basically house bound.  My less than supportive husband is loosing his mind and doesn't understand and there is lots of new stress because of it.  Any advice on how to get him to be more supportive?? 

 

I'm in the same boat as you! Just recently caught it. My advice is start out fast with antibiotics and combine them with herbals. Rifampin is excellent to bring quick relief to heavy symptoms fast. Especially Bartonella.

Sounds like your case hit pretty hard though. I would suggest yes follow the advice of your lyme literate naturopathic doctor. You might need a strong intracellular antibiotics to get into those facial nerves. Biaxin maybe?

Welcome to the forum Louise! I'm sorry you've gone through so much with your illness and the doctors. I'm glad you found the 2 you're seeing now at least.

I'm sorry your husband isn't more supportive. Is he maybe fearful? Watching the movie like was suggested is a good idea. One of the Olympic snowboarders has a blog with her story and some videos on there too, showing her literally falling out of the sky when doing the halfpipe maneuvers and how much better she was when she got to go to the Olympics.

I am so sorry you are going through all this Louise74!! You are NOT ALONE...your story sounds somewhat similar to mine with the 180 turn around in your health, facial nerve involvement and throat issues. So glad you found someone to treat you and that you found this forum for support. There are some great people on here who are very willing to help you find treatment and support you through this process. I am at the beginning of my journey as well and hope we find relief and healing quickly. You will be in my thoughts and prayers.

First let me say how incredibly sorry and sad I am that you have had and are still going thru all you are. There is NO reason for this kind of suffering. I will also say that your post reignites the anger I feel about all of this. We're fighting something that many people (including far to many "experts" (i.e., doctors) feel doesn't even exist!

Contrast what happened to you versus if you'd had a heart attack or experienced a diabetic coma (god forbid on both) .. you would get immediate, good quality medical care. You would not be seen as "having been traumatize", you would not be referred to MH, etc.

I too went from dr to dr to specialists for years - and I had every response given "it's nothing, it's something we can't figure out, I think you're emotional because of menopause, I think you should take an anti-psychotic drug, I think you should just relax, I know this can't be Lyme because you only tested positive on one band, I think you have fibromyalgia, I think you have Sjogren's Disease I think you should see a therapist, I don't think there's anything wrong and you're making this up for attention" and on and on and on.

Now, 11 years down the road from the first symptoms (tingling in legs and hands and fatigue), I am being treated for bartonella. 11 years, thousands of dollars, lost time and more -as so many, many of us know from our own journeys. This is wrong, wrong, wrong.

I don't know what it's going to take to wake up the people who are creating and nurturing this environment of denial, shaming and dismissiveness. What I do know is that we must take our health in our own hands and do all we can for ourselves and others who are suffering and struggling.

I support the suggestion of watching "Under Our Skin" - when I watched it - that's when I broke down and realized "it's Lyme". From that point on, I still had difficulties finding someone reputable to treat me. More money wasted -but at least now I am getting help and I am hopeful.

Do hang in there and see if your spouse will watch the DVD too -if not with you, then on his own. I can't imagine how difficult it must be to have a not-supportive spouse on top of this. I know without the amazing husband and the support he has and continues to give to me - to us - I can't imagine where I would be.

Surround yourself with people who will support you. Keep coming to the forum. Hang in there. I feel for you and hope you continue to feel improvement in all ways.

Louise - I am So sorry to hear this. If you need support, this forum is the best place to be! So many have already responded with encouraging words!!

You and are are in a very similar situation - we are the same age, I am a mom as well, just quit my job, my husband had a very hard time dealing with this, AND it hit me hard and fast too - started in November just like you and symptoms intensified in January. After hearing what you said about taking amoxicillin - I think I was right on my guess. I took augmentin also, in January, and two days after I finished it, the lyme hit me like a brickwall and I went downhill fast. I was wondering if it was because I introduced the Lyme bacteria to amoxicillin and stopped, if that's why it came back even stronger. Very interesting.

Some spouses just don't know how to handle this. My husband to say the least - he loves me more than words could say but was just paralyzed by the whole thing. He didn't want to face it and he felt helpless because he wasn't used to seeing me so sick.

Just tonight, after two months of treatment, I said to him "I was so worried that you were not looking at me the same way anymore"

and he said, "I am so sorry, but not thinking about it, and not facing it, was the only way I could cope. You run this household, and I need you so much" - that brought me to tears. If you ever want to chat, don't hesistate to email me. Where do you live?

I am in the medical field too - a pharmacist. Yes, we do need to change things, and we will !!!!!

forgot to click on the link to get notifications.....just did so now.

sure - just click on the envelope underneath my username. if that doesn't work, just click on my username and my email address will be listed. You can make your email address available by entering it in under your profile info. looking forward to hearing from you!