Lyme Disease Support Group

My name is Kati. I am 18 years old and just found out about 3 months ago that I have lyme disease. The doctors think that I have had it for over a year before we found it. My CD57 level is 16. I have been on oral antibiotics for almost 3 months and they have not been working for me. I am starting IV antibiotics on friday. I am a little nervous about it. They havnt decided yet whether they was to put the line just in my arm a few inches or all the way up into my chest.

I have been having symptoms for a year or two now. I have been having major anxiety problems. Being sick with flu like symtoms have definatley made it worse. This has caused me not to want to go to school and so I have been taking online coarses.

If anyone has anyhelp or any support on Iv antibiotics please let me know, im pretty nervous.

Sorry that you have this...but you are in good company here...

First...what abx are you on?

Just because those dont seem to be helping doesnt mean that other orals wont work. There are a large number of abx that work for this fight.

Also, were you tested for co-infections? Certain co-infections will make getting better much harder.

You can also try Bicillan injections rather then IV....

Point is - there are other options when doing the conventional route...

When I was your age, I went through a ton of different abx before we found those that worked well for me.

Also, are you seeing an LLMD (Lyme Literate MD)?

It is important to do so...

Also, just throwing RX's at this disease is NOT going to get you better. You MUST treat your whole body...

This is going to consist of dietary changes - many do better on a gluten free diet, more fresh veggies and fruits...lots of water for detoxing and for the body in general...

Also immune support and adrenal support.

This is a disease that is going to be with you for the long haul. At this point there really is no "cure" - but remission is our main goal when treating.

Because remission can last a very long time. It is VERY important that you educate yourself. Please read through our Lyme Facts section. Reach out and connect with others...

Unfortunately, this is a long and hard fight on many levels. Being here with people who have gone through all of this is so helpful...

Research your options - again, you dont HAVE to do IV. It may help you, as it can in some cases. Its a 50/50 game here...You have to try different types of treatment...

But IV is a big commitment - I did it when I was 17 - and hated it and it did nothing for me. Again, there are quite a few oral abx out there - you may just need to try other ones. And look into Bicillan shots...they are a pain, but they can be really helpful...

Always feel free to PM me for anything.

Hang in there

Christine

As far as being to graphic I dont feel that you are and I totally understnad where your coming from!

I am also a nursing mother. My son was 15 months when I started my IV treatments. I am on Ceftriaxone and Azithromycin which my doctor and my son's pediatrician say are fine for me to breastfeed. I have a port-a-cath in my chest which I LOVE. I would not want anything in my arm. The port is under my skin and the 3 days a week that I am off my treatments I am able to submerge myself in the tub and also swim as there is nothing on the outside of my skin those days. The 4 days that I do receive my treatments, I have a tube plugged into the port that is covered by a transparent dressing. I am still able to bathe, (although I don't submerge myself past the top of my breasts.) The port sits higher up in my chest from the top of my breasts. I am also able to shower each day. The transparent dressing keeps the site dry. As far as IV vs oral antibiotics, my doctor told me the IV drugs I am on work better for the brain issues with Lyme that I suffer with. Also, IV is better absorbed than oral and does not cause all the problems intestinally like the oral's do. I would encourage you to not be afraid of the IV route. Are you working with a LLMD (lyme literate doctor?) Hope this helps you. Take care, Denise

I have only ever done (IV) Rocephin (Ceftriaxone)...which is the most commonly prescribed IV...and it did nothing. Some do well with it others do not!

Azithromycin = Zithromax is a very good abx to be on - IV or oral. Keep in mind, that because of the rate in which the Lyme bacteria replicates, our bodies need abx present 24/7/365 to truly do their jobs. Zithro is an abx that penetrates tissue (which is where the bacteria loves to live) and stays in our system for 72 hours...so it is a good choice.

With Rocephin...some of it does get expelled from the body pretty quick...and from what I have read tends the rest is expelled within a 10 hr window...That is why most are often given 2 doses a day...early and late...And it is a hit or miss abx. Some do see great improvements - and for some they get worse...and then there are those like me - it did not a single thing for me - except be one of the causes of my gallstones later in life...There is something I forget what it is called - to take with Rocephin to help prevent that tho.

But yes there are PLENTY of abx options. Understand too that there are 2 classes of abx. Cell wall inhibitors and protein synthesis inhibitors. So Rocephin which is a cephalsporin, is a cell wall inhibitor and Zithro is the other.

The problem with cell wall inhibitors (which includes penicillans) is that Lyme is able to adapt and take the L-form, in which it survives without its cell wall. So this class has its limitations.

So taking 2 different class abx is a big help. And what typically happens, is that the bacteria senses this hostile environment...and it will go into dormancy. Either forming cysts within the tissue...or for more protection it will actually enter our cells (b-cells if I remember correctly) and then go into dormancy.

Thus going undetected by the abx and our immune systems. This is a stealthy bug.

Bicillan injections are also an option. But they are a literal pain in the butt. It is VERY thick...its like shooting Elmer's Glue...I did it for several months...and it did help...to its limits...

Biaxin is one of the few that penetrate the blood brain barrier, and many docs use it with plaquenal, which penetrates the cells...thus helping the biaxin to breach the cysts.

Flagyl, is a cyst buster - so you need an effective abx along with it.

Suprax, spectrobid (discontinued i think), Rifampin (heavy hitter and fights Bartonella too)...there are many...I beleive 4th & 5th generation cephalsporins also penetrate the blood brain barrier.

If you have the co-infection Babesia...you are looking at anti-malarials...quinines like Malarone, things like mepron, artesutanate...and if you dont treats the Babs...you will have major issues treating Lyme...

So taking care of your body, with immune support and better diet practices will help in so many ways...as abx can do wonders on our systems...

Hope this can help you guys out

Christine

Post edited by: cmany, at: 04/09/2009 05:27

Post edited by: cmany, at: 04/09/2009 05:29

my last...was not with an LLMD - and was only on amox through breastfeeding...yes they are safe...

As a side note...with my twins (2nd preg) I was also on 120mgs of morphine every 12 hrs and 650/10 of Lorcet for break through pain...and 600mgs of Neurontin 2x a day- and all was fine too...

Post edited by: cmany, at: 04/09/2009 05:25