Lyme disease and Steroids

Hi, I am new to posting in this forum. I have read a lot of posts from people who suffer Lyme from years ago. I retracted Lyme from a tick back in 2008/2009. This last November I was finally tested positive for Lyme from the ELISA test.
My primary Doctor informed me she has no idea what to do for Lyme.

I have been diagnosed with
Deterioration on my Cervical Discs,
Periodontists,
Varicose veins in my legs. (lack of circulation)

I suffer muscle spasms in my arms and hands, that literally tighten up so tight that my arms will involuntarily start to move and lock up.

I also suffer crippling pain in my Right Hip joint that travels down my leg
(the X-Rays show bone spurs)

The ortho clinic gave me a Depo Medrol shot 2 weeks ago in my right hip to relieve the pain.
The side effects were plenty, and my pain came back after the numbing process went away.
Since then i have been suffering redness (flushing) in my face, chest and shoulders, appeared as if I was out in the sun all day...
mood swings, anxiety, and panic attacks (shakes), (lack of concentration), (tight chest)
nauseated, throat throbbing, heart pounding, abdominal pain, and muscle contractions in my arms hands and stomach.
night sweats, day sweats, headaches, eyes burning,

Most of those symptoms already existed, just more intense after the shot.
This morning I woke up at 3 am from both arms and both legs from the knees down to the tip of my toes were burning like i was being attacked by a swarm of fire ants.

Today I had the most scariest anxiety, panic attack, I've ever experienced.
I called my doctor, then the Ortho office... neither one was any help.
I was out of control, off the chain, luckily I had a #10 diazepam left over from my Ablation procedure.
I'd like to think I am mentally in control again, but I still have the shakes, my chest is still tight, and I'm light headed.

Now I can normally keep my composure under the most dramatic situation, but today was not going to happen. I was a complete basket case, like never before. I wanted to just scream or cry!

My major concern is: will it happen again tomorrow? And what happens if it does? I will be going to the emergency room for Xanax or Diazepam to calm me down.

So I understand that Lyme spirochetes on steroids party like a rockstar, and in my case they sure do.

I had a big day today!!!! Whew!

Does anyone have any encouraging words to keep me focused?

It seems I have pushed everyone close to me away, with this stupid panic disorder....

Hi <lyn> -

I am so sorry you are suffering like this. You have multiple points of aggravation, no doubt.

Yes, the depo medrol was a nasty trigger - try to avoid steroids at all costs.

And no, general MDs are typically not qualified, nor interested in treating Lyme & Co. You definitely need to be working with a qualified specialist - we can help you find one. Please start a new thread with the title "Looking for an LLMD in ______" and indicate the metro area convenient for you.

Also, please read through the "New to Lyme?" thread at the top of the page - this includes invaluable info and will help you find a good LLMD to partner with, prepare for your appt and also give you great insight regarding the infection, diagnosis and treatment that will need to be customized for your purposes.

It's very unusual to get a positive ELISA result. The CDC testing methodology suggests that a positive ELISA should be followed up with a Western Blot for Lyme. Most LLMDs will probably do this and will likely use IGeneX testing for this. The ELISA test is very sensitive but not specific, so it's supposed to indicate if your immune system is struggling but not indicate why. The Western Blot is then supposed to help determine if the immune system has responded to the Lyme microbe or DNA components of it with specific antibodies, so it's very specific but since Lyme can derail your immune response, the Western Blot becomes very insensitive... but that's the testing they require.

However, a good LLMD might go ahead and treat you according to a clinical diagnosis as well.

The good news is also that you've found the forum - this is a great resource for you. Please don't hesitate to ask any questions - we're here to help.

-p

Hi <lyn>

Well, you're one smart cookie so I'm gonna just put this out there for ya and not beat around the bush...

You'll be better off treating yourself than w/ an MD who doesn't know how to diagnose you. She surely won't know how to treat you. The hard reality of Lyme is that we have to learn so much about all the different facets of this disease and treatments even with a good LLMD as a partner, that it is entirely possible for you to do this on your own. Not ideal, but you can get started until you find someone.

The only caveat is that you clearly have other issues going on too, so you'll still need to be in the care of an MD you trust, as well.

-p

What is it you take for anti-inflammatories? The anti-inflammatories I have used all give me incontinence. But I have been taking them for years...

I normally use herbs most of my life, this doctor thingy is new to me, trust is a major factor. I have adopted a wonderful herb store in TX years ago, I have no problem with a mail order now.

I have a very stressful situation right now, but that is going to end here real quick...

my bp is loopy, it goes from 187/139 to 70/59.

I guess I am looking for some sanity in an insane environment...

it seems to me i perhap have more than just the baSICS of lyme... i really should get tested from a llmd, i am sure i will know then exactly what it is i am dealing with and then go from their.... ugh!

thank you...

thanks, you actually got healed from Lyme? how long did it take to completely get healed?

<lyn> said...
thanks, you actually got healed from Lyme? how long did it take to completely get healed?

I healed a little over a year ago.

It was a process.... I so dislike telling people how long I treated. I don't want to set a standard that you feel you have to meet.....

For me - I was a super physically healthy woman all my life. I did what most call a Man's job for over 25 years and then retired. My job was an outside job. I was a hiker, camper that slept on the forest floor in a bag, and was a huge mountain bike rider. So for me to get to the age of 64 and get lyme??? I consider myself lucky.

When I got lyme I had all the positives lined up. I had no financial worries, no stress, including taking care of children (it was just me and hubby), our pets were no longer living, we ate super organic foods, we had so very little responsibilities. This is huge in healing. My only JOB was getting well.

Food is medicine!!! No packaged food, no fast food.

I am a very driven person and tenacious. I took my protocol and supplements perfectly as I could. My lyme brain was horrible and I would take my meds and an hour later could not remember if I took them or not. I had to devise a system to remember if I took them. I slept a lot one month. Detoxing was a part of my life, way before lyme. You don't lift weights, ride a mountain bike and not know about detoxing. I just didn't know the word for it. It was just called being healthy to me. So I never had to learn to detox, I already did it.

All of this and more were why I healed so quickly and even when I say quickly, it still seemed like an eternity to me, who got well from a cold in 3-5 days.

My advice is find a protocol you like and go with it. Don't take short cuts. Stick to it. Go slow so the healing will last and do everything you can RIGHT so you help your immune system heal.

You won't get rid of lyme. Your immune system will learn how to take care of it, just like it already takes care of many other nasties that live in us and are being held at bay by our immune system.

Good luck and you can do this!!! If impatient OLD me can, you young whippersnappers can.

Many of us here have lost faith in the medical profession because we have had a blind eye turned to us and our issues. It's not a good place to be, but it's reality. You're right, they simply don't want to be involved.

After I had stopped my pharma abx treatments because I was stuck in a constant herx the whole time (12 months), I was turned away from (quite literally) every doctors office, with them telling me that the doctor didn't want to get involved in such a serious case at this time. WHAT??? What the HECK were they there for then?? Just ingrown toenails and a simply cold? I was flabbergasted that they would be willing to just let me die at home, rather than have me as a patient. It was cold hard reality that hit me - I had no options for doctors to help me. That's when and why I turned to herbs. For me, it was the right choice and I did heal and heal well.

Do your best to stay calm, no matter what they say -and know that you can come here to vent if you need to! We certainly understand!!