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Posted 4/16/2017 2:28 AM (GMT 0)
I am finally getting meeting with my new LLMD on Monday in TN.

Questions I have though - my neuro symptoms have now escalated/continued to hallucinations, eye drooping, severe floaters in eyes, headaches, speech difficulty, depression, and OCD episodes. In addition to the neuro, I am having PVC, and PAC rhythm issues with my heart again with the palpitations as well as the feeling of small heart attacks.

I am running out of time with Short Term Disability and I am losing my mind. Can anyone give me insight on Oral vs IV antibiotics? What will be the deciding factor? What do I expect with either? Should I plan on being there longer than just the day of my appointment? (I am traveling down from Ohio).

What key questions do I need to ask him? I have continued on my detox but haven't noticed a change in symptoms and actually a worsening in neuropathy and energy too.

Thanks all in advance! <3
Posted 4/16/2017 3:03 AM (GMT 0)
So sorry that your symptoms have escalated....but glad you're seeing a LLMD on Monday.

As far as IV antibiotics - one deciding factor is if someone wanting to do antibiotics had issues with their stomach...can't take them orally...and will be offered IV.
Some LLMD's like to treat very serious cases with IV antibiotics. (Wheelchair bound, or someone having seizures)
But, there are serious cases who also have healed with orals.

This is from Dr. Jemsek's website:
"The current consensus for the role of IV antibiotics is that it should be reserved for the treatment of patients with prolonged and life altering neurological findings, whether CNS or peripheral. By definition, these conditions reflect advanced neuroborreliosis."

(Dr. Jemsek is a well-known (in lyme world), experienced LLMD that has been treating patients for many years)

I don't know if you'd be 'hooked' up the same day for IV antibiotics - if it was decided to go that route. I would think there would be some planning involved.

Have you been taking oral antibiotics so far?

There is a list of questions you might want to ask - in the "New to Lyme?" thread. Take a look and pick from that list ones that you want to ask your Dr.

Also - I don't think all LLMD's offer IV antibiotics for lyme.
Posted 4/16/2017 3:29 AM (GMT 0)
There are a few things that help us get well.

1. Detoxing and if you have trouble with that you need to find out why and how to over come it.

2. Treatment. This can be many different kinds and some even do combined treatments.

Without those 2 things I am so sorry to tell you, that healing just won't happen.

You can't expect this to go away like a cold or flu will. This is a bacterial infection and will stay until it is treated.

Learn about the life of a spirochete. It lives in us, reproduces and dies. When it dies it creates toxins and we have to get rid of them. When we kill those spirochetes they die and we have to get rid of them. If you don't detox, you will hurt from the abundance of dead spirochetes in your system.

So Rule 1 and Rule 2 are imperative to healing. Sorry, there is no other way.

We are here for you and will help you to understand it all. It can seem very overwhelming, but we have been there, done that and would love to help you avoid all the horribleness we had.

Just ask and we are there to help.
Posted 4/16/2017 3:40 AM (GMT 0)
What all are you doing for detox? We need to do multiple methods daily.

Take a look here for some ideas:

www.tiredoflyme.com/detox-methods.html

Are you taking liver support? Probiotics?

What about a binder?
Posted 4/16/2017 12:11 PM (GMT 0)

Girlie said...
So sorry that your symptoms have escalated....but glad you're seeing a LLMD on Monday.

As far as IV antibiotics - one deciding factor is if someone wanting to do antibiotics had issues with their stomach...can't take them orally...and will be offered IV.
Some LLMD's like to treat very serious cases with IV antibiotics. (Wheelchair bound, or someone having seizures)
But, there are serious cases who also have healed with orals.

This is from Dr. Jemsek's website:
"The current consensus for the role of IV antibiotics is that it should be reserved for the treatment of patients with prolonged and life altering neurological findings, whether CNS or peripheral. By definition, these conditions reflect advanced neuroborreliosis."

(Dr. Jemsek is a well-known (in lyme world), experienced LLMD that has been treating patients for many years)

I don't know if you'd be 'hooked' up the same day for IV antibiotics - if it was decided to go that route. I would think there would be some planning involved.

Have you been taking oral antibiotics so far?

There is a list of questions you might want to ask - in the "New to Lyme?" thread. Take a look and pick from that list ones that you want to ask your Dr.

Also - I don't think all LLMD's offer IV antibiotics for lyme.

Good Morning Girlie,

I actually was on Dr. J's site last night...I was really looking into seeing him but due to costs and time I was forced to choose another route.

I was on oral antibiotics for 2 weeks and in that time is when all of the neuro functions started to rapidly fail. The hallucinations started, the drunk without drinking feeling, and the depression that hit were unbearable. I almost went to the hospital just to be self commited because I was afraid that I would attempt to self medicate to calm down and then and my heart fail. The cardiac pain is already starting this morning.

I have been diagnosed with erosive hemorrhagic gastritis and am on Carafate 4x daily as well as Omeprazole 2x daily. I have lost about 15 pounds though just from being sick everytime I eat.

Detox right now are all Natures Sunshine supplements. Lymphomax, liver cleanse, urinary cleanse, bowel detox, and a probiotic. I also am on Vitamin D 4000IU's daily and Super Omega 3 2 x daily. I tried to do the foot baths and got extremely sick both time I attempted them and set the "mini heart attack feeling". The first time I thought it was a fluke but the second time I was fine until 10 minutes in.
Posted 4/16/2017 5:11 PM (GMT 0)
I would encourage you to keep the foot soaks to only 7 minutes then - even that amount of time will help - unless you feel the 'mini heart attack' feeling again. Then don't use them again until you are further along in treatment. I'm not sure how magnesium affects the heart exactly, all I know is that it's one of those that does.

Sounds like you have a lot of detox issues, considering your response to the oral meds you had been on previously. Be sure to bring this up with the doc and ask about genetic testing for gene mutations that can make detoxing harder (MTHFR testing).

We do have a list of questions on page 2 of the "new to Lyme" thread as well, but the basics are:
* you want to know how and when they wish you to contact them,
*find out what the protocol will be, what you start with and what will happen next (increase in dose/add in another abx/ if herbs will be used)
*do they start you off on low doses (then check with us to see if it's low enough to prevent a serious herx right away),
*what are their thoughts on detoxing (some LLMD's still don't understand how important this is for us)

From there, there are all kinds of information many of us want, so find out all you can.

Be prepared to take notes!! Take someone with you if you can - two sets of ears listening catch more of what is said is all.

Be prepared for a long appt. Not everyone has one, but if you will need a snack, or water while you wait, you will want to have it with you.

I'm sure others will chime in with their suggestions as well.
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