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Posted 8/10/2011 5:07 PM (GMT 0)
My wife has been diagnosed with long term lyme. Probably acquired it 30 years ago in NY. She has been in treatment (by a LLMD) for fours year and been on several different oral antibiotic. Based on her symptoms and a neuo-cognitive evalution it appears that the lyme is in her brain. The lyme doc is recommending that she consider starting IV antibiotics. She is saying that she may need to be on the IV for as much as six months. My wife is having a really tough time deciding on whether or not to do the IV but she is leaning in that direction. She is really afraid about complications and also the cost since the insurance co no longer pays for any antibiotics. I would love to here from those of you that have done the IV and how that has helped or not helped your condition and any side affects that you went through while on it.
Posted 8/10/2011 5:29 PM (GMT 0)
Threeputt,

I am in the same boat as your wife :(

What symptoms does she have at this stage? I was dx'ed MS in 2005 but I think I may have picked up Lyme about 15 years ago. My IGm band-23 was positive so I am meeting a LLMD next week to discuss.

Good Luck!

(I would give you tons of clever golf sayings right now but no doubt you've heard them all! Cheers!)
Posted 8/10/2011 5:35 PM (GMT 0)
As for her symptoms... there are many but her cognitive systems are the brain fog, head aches, forgetfulness, unable to stay on task, etc. She loves to cook and has been having trouble following her recipies anymore. She gets very frustrated. She has also been diagnoses with siezures by a neurologist but it is unknown how this relates to the lyme.
Posted 8/10/2011 6:18 PM (GMT 0)
Hello threeputt,

Welcome to the forum. You sound like such a supportive husband; that's just great!

Your wife sounds like she is getting good care, though I can understand the hesitation to go on IV antibiotics.

We have many members that have gotten the boost they needed from IV therapy.

Have you and your wife considered the natural/herbal protocols? Several of our members have found that to be a good choice when antibiotics did not finish the job.

If you haven't already, please do take a look at our permanent thread "New to Lyme?..." at the top of the forum. I know you are not new to this disease but there are a lot of good resources and helpful information offered there.

Glad you found us!
Posted 8/10/2011 7:16 PM (GMT 0)
Wow I was just about to post question.

Does anyone know which type brain scan or MRI
Can see exactly where the infection is in our
Brains?
Is it deep I basil ganglia area or just where is it.

IV abx is what most real LLMD will say to go after only getting so far
With orals.

There is one other very important test to have
If you are long term Lyme. ISAC panel for thick blood and hypoquagulation.

My migrain were like mini strokes for 20 yrs.
After going on heparin shots I have not had any.

30% of Lyme long tremors have thick blood.

The big question for me is... Where in my brain?
I wanna see it!!!
I believe it because Ian in 20 yrs of fog and confusion.

I wonder what special about dr Amen the brain book doc.
His scan is supposed to show all kinds of damage so you know where you are
Going and with what meds.

Anyone ever hear of Insilun Potentiated chemotherapy?
I have heard now same proceedure is being done with
ABX. Something about there being so much fat in brain that it is
Hard to get to with ABX. So they use insulin to lower your
Sugar and some how it gives a clearer shot with IV abx.

Sounds sensible to me but I really want to see where exactly the infection and hopefully not damage is in brain.
Posted 8/10/2011 7:25 PM (GMT 0)
My wife is considering something called a Spec Scan that I believe is suppose to show where the Lyme could be in the brain.
Posted 8/10/2011 7:52 PM (GMT 0)
Great. can you keep us posted.? is it covered by insurance? does a neurologist order it? Have you ever seen Dr. Amen on cable or any of his books like the brain and love and brain and the body?

I called one of his clinics on west coast and it cost $3200

It seems to me like the FIRST thing a lyme doctor would do especially with long term people with cognitive and neuro stuff going on.

How old is your wife? One thing that happened to me was once menopause started in my mind started slipping fast. I had to get on bioidentical hormones. I can not finish a sentence without them or sleep.

has she checked her hormones?
Posted 8/10/2011 7:53 PM (GMT 0)
Do you believe she has gotten "proper" treatment through oral antibiotics - for instance, aggressive enough and combination meds? What was she on? Have you thought maybe of getting a second LLMD opinion? Have you tried to appeal your insurance company decision on not paying?

I feel so bad for you and your wife. Unfortunately, it becomes a full-time job just trying to get the treatment you deserve. I hope we can be of some help to you on this forum.
Posted 8/11/2011 4:32 AM (GMT 0)
Going the IV route can be very expensive. You need to call your insurance co. and find out if a "central line placement" would be covered. I had a Port-A-Cath placed which cost $17,000. I still had $1600 of my $2000 deductable and had to pay that. I have Sutter Select PPO and am on my 7th month of IV meds which they have covered. This is a long time and figure I'll be dropped any day.

Some LLMD's are hooked up with pharmacy's or veterinarians that can get meds very cheap. Example: My insurance company was charged $2000 a week for Rocephin. My LLMD has a pharmacy that works with cash paying patient charging only $400 for a months supply.

All Lyme patients have brain inflammation. The symptoms differ from person to person depending on where and how much in the brain the inflammation is. It's extremely important to always be on a medication that passes the BBB, blood brain barrier, for this reason. Rocephin/ceftriaxone/cefotaxime works great for this. Cefotaxime doesn't cause the gall bladder issues that Rocephin does. It's not uncommon to need to be on this for over a year!

When an IV med is working, it can make your already bad symptoms worse. Rocephin kicked my butt big time for the first month. Then started feeling better. With IV meds, more of the actual medication is getting into the infected deep tissues than what the orals do. So you have a bigger harder "die off" reaction (herx). Detox is very important here.

Most doctors don't start on the IV route in the beginning because of the insurance issue. And most only pay for 1 month of any IV medication. I wish I would have started right away with IV meds. But I have good insurance, most don't.

It also works to use a combination of pharmaceutical and herbal meds at the same time.

hope this helps. Good luck and thank you for looking out after your wife!!! Your level of involvement is rare among non-infected spouses. And I really appreciate it and know your wife does big time.
Lisa
Posted 8/11/2011 2:15 PM (GMT 0)
Hi Threeputt!!
Welcome to our forum!! I am so sorry to hear about your wife! What a wonderful hubby you are for joining us to learn some more and to get some more support!!

As has been suggested, you will find the info in the "New to Lyme? Start here!" thread, as it is packed full of relevant information and informative links that have been put together by our members here! We also have a pretty good search function on this forum to help you narrow down your search for information from past posts. We must be our own health advocates now and the best thing to arm yourself with is knowledge!

I have had a SPECT scan on my little ole brain! It is possible to gather an understanding of what areas are currently being affected by Lyme the most by the results of a SPECT scan. I don't know how to interpret those results, but when I had mine done I had two areas where the blood flow was reduced by 22% in one and 24% in the other area. All I could think of was "How lovely!!"

The good news is that I am much better now - so I assume that those areas had to regain blood flow again! Because of circumstances I am now without insurance, otherwise I would love to get another SPECT done to see how things have changed!

As for the issue of whether or not to do the IV abx, that is a highly personal choice. As you can see, there are a lot of opinions on that (as well as other issues) here!

If I were in your shoes, I would have to admit that I would be thinking as Springsjean has stated - "Do you believe she has gotten "proper" treatment through oral antibiotics - for instance, aggressive enough and combination meds? What was she on? Have you thought maybe of getting a second LLMD opinion? Have you tried to appeal your insurance company decision on not paying?"

With four years of treatment, she's still getting worse and just now thinking of IV abx? I would think that something needs to change in a big way. I would suggest that you & your wife start asking all kinds of questions, not only here, but of your LLMD as well.
Posted 8/11/2011 5:56 PM (GMT 0)
LupnerRN - thanks for the valuable feedback. I am going to show this information to my wife and I am sure she will have questions.

You mentioned that you have been on IV for seven months and you starting feeling better after a bad first month. Have you continued to feel better through the duration of the seven month period? How are you feeling compared to how you felt before you began the IV?

Posted 8/14/2011 1:15 AM (GMT 0)
Hi threeputt,

Sorry to hear that your wife is suffering from neuro lyme. It is nasty.

I probably had lyme for seven years without a diagnosis, getting progressively sicker. Then I got another tick bite and finally, a diagnosis. I started on oral abx. There was much ear and eye involvement so my LLMD suggested IV, but on an out-patient basis. I did a total of 12 rocephin treatments, two each week for six weeks. I improved within a few months. I stayed on oral abx for seven months, then switched to a homeopathic protocol and today, I have no symptoms. Thanks be to God!

I did pay out of pocket, but it was worth it. I got my life back.
Posted 8/14/2011 2:46 PM (GMT 0)

Caldonia Sun said...
Hi threeputt,

Sorry to hear that your wife is suffering from neuro lyme. It is nasty.

I probably had lyme for seven years without a diagnosis, getting progressively sicker. Then I got another tick bite and finally, a diagnosis. I started on oral abx. There was much ear and eye involvement so my LLMD suggested IV, but on an out-patient basis. I did a total of 12 rocephin treatments, two each week for six weeks. I improved within a few months. I stayed on oral abx for seven months, then switched to a homeopathic protocol and today, I have no symptoms. Thanks be to God!

I did pay out of pocket, but it was worth it. I got my life back.

can i go the homeopathic route???
haha i have the option of paying out of pocket for IV abx or to try the homeopathic treatments
i have been a firm believer/user of herbal remedies for at least the past five years, i didnt know what i was fighting,lyme co-infection, until 12 years or more after(now). i was bitten at a very young age, around 8 or 9 and have been bitten many times after.. im 22yrs in september. i am suffering at the 3rd stage point... so as a person who does herbal/natropathic treatment, do you wish you would have started at homeopathic?
i am using a rife mechine and an extensive amount of herbal supplements. that enough? because my only other option is IV
Posted 8/14/2011 3:28 PM (GMT 0)
stg3--

You can certainly go the natural route, but you still need a practitioner to guide you through it. It is very complicated and IMHO you need an outside opinion to see how you are doing. A practitioner also has access to products that you can't get.
Posted 8/14/2011 6:49 PM (GMT 0)
i do have a practitioner, thats how i know of these other treatments and getting herbal supplements from around the world ha.
Here is a list of some of the vitamins/supplements im taking now:
Aloevera gel- when needed
Artecin-1-3X a day
berber cap-1-3X a day
Thyroxanol-1-2x a day
Una de Gato (cats claw tinkture)-1/2drpr-3x
vit D 1000iu per drp-1drp daily
GI Flora-1-3x a day
Basic nutrients4 -2-2x a day
and an integrated body systems Homeopathic remedy for lyme-co-infection-1/2drpr-3x a day
plus others by my choosing...
what do you use for homeopathic remedy?
Posted 8/14/2011 8:01 PM (GMT 0)
stg3,

I'm sorry I didn't understand from your post that you were working with a practitioner.

In that case, what is it that you are asking?
Posted 8/14/2011 11:20 PM (GMT 0)
im wondering if anyone is going in this direction, and if so, did it help?
Posted 8/16/2011 6:10 PM (GMT 0)
I got 2 standards brain MRI's, then one later with contrast. They were able to see that I have infection in my left mastoid (the bone behind the ear) and in the bone around my sinuses on all of the MRI's.

I am not only having cognitive issues, but have had problems with losing my ability to speak altogether. I am going to my docs tomorrow to get set up for a PICC line. I am going to see if they can put an IV line in (only good for 3 days) so I can start right away while I wait for my appointment for the PICC line. I've been on a mix of oral antibiotics for 4 months and the infection is still there, so the IV is the way to go. Especially since it is in the bone.

I have been infected twice. Once 10 years ago, then again 5 years ago.

I will keep everyone posted.
Posted 8/16/2011 6:45 PM (GMT 0)
Wow, walkingafineline,

Glad they were able to find out what is up with you. Hope everything goes smoothly with your PICC line.

Please do keep us updated. We'll be thinking of you.
Posted 8/17/2011 4:50 PM (GMT 0)
I've heard great things about the IV. My LLMD keeps reccommending me go on it but i'm sticking to oral antibiotics until I get through college. I've had a lot of cognative issues in my brain which is why my doctor suggested the IV. I personally know a lot of people that have had great improvement from it. Also, you said your health insurance doesn't cover it.... Every person I know that has had the IV their insurance says they will only cover it for a certian amount of days but they just continue to order the IV medicine and supplies and the health insurance never denied it. One of my friends was on it for 8 months when her insurance said they would only cover the first 28 days. good luck!
Posted 8/17/2011 5:19 PM (GMT 0)
I'm not doing homeopathics, but am using a natural protocol with my Acupuncture/Chinese Medicine/Western Herbologist Doctor. I had tried going with the abx route back in '07, but it wasn't a good thing for me at all. I figure I must jave been too ill (or something like that) to handle the strong abx. doses required to treat TBI's. I was seeing a well-known and well-respected LLMD at the time, but neither of us expected that to happen!

So I'm a little partial to the natural protocols - but it makes for a good balance here I believe. The natural protocols have had many success stories, and that's only for the most popular natural protocols. Ones like I'm using, are rarely talked about, but I have been seeing great results!
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