desperate for help

Hi rose

(I would type your full name but the underscore key on my computer is on strike)…

Welcome to the forum. I'm sorry you're struggling with this… you would do well to read the "New to Lyme?" thread at the top of the page, even though you're not really new to it. But it has a lot of invaluable information in it that your MDs have clearly not shared w/ you, unfortunately.

Lyme is incurable, so you will always have the infection. Our goal is to keep the infection load minimal and keep your immune system dominant and in control. Your first dose of abx was not sufficient, even w/ IV. Basically, you need enough abx to follow through the lyme life cycle, appx 4 or 5 weeks. Your second dose was clearly not long enough either, or it would have eliminated your symptoms and instead, the infection got the upper hand w/ your immune system. Your MD at the time was likely following IDSA guidelines, which are decades outdated.

It's possible you're no longer testing positive because your immune system is overwhelmed. Lyme tests are typically serology tests, which rely entirely on a highly functioning immune system. But the lyme infection is notorious for attacking red & white blood cells, thus challenging your immune system. A lyme specialist won't need to rely on positive test results to properly diagnose and treat you.

Additionally, ticks that carry lyme generally carry lots of other infections (bacterial, viral and fungal). With swollen lymph nodes and the other sx you describe, I would't be surprised if you also have high viral load and/or other tick borne infections.

Your first focus should be in finding a good lyme literate MD (LLMD) in your area. Might be easiest to post a new thread titled "Looking for LLMD in XXXX" and indicate your geographical area. Our moderators are extremely helpful and will respond.

Hope this helps… please ask more questions if you need to.

p

Yes, this can all be overwhelming. Being young will be helpful. And you were smart to find this forum, and you also seem to already have access to a good LLMD so you are way ahead of the game! Just take things one step at a time and the more you read up on lyme & confections and treatment options, the more productive your LLMD appts will be.

p

I haven't experienced much of the aches myself, but I've seen that mentioned around here before, yes.

Anyway, apart from that, I'm afraid I won't be of much help to you, regarding most of what you've asked, especially not compared to the efforts Pirouette's made.

Though, there are a couple of things I'd like to say..

You said that it's seeming as if life will never be the same for you, which, in a way, is true. Your life will likely never be as it was before all of this Lyme stuff came along. But, that's not to say that things won't get better, that you won't heal. With the right guidance, treatment plan, and, on your part, some hope and determination, there's a chance you could have a life you'd be happy with.

You could learn and grow from this.

I really hope you do.

Also, not to discredit what your LLMD's going to be doing for you, but, as you have been doing, you're often going to have to play the role of your own researcher, your own doctor, when it comes to Lyme and coinfections.

As has been told to me many times, though I wish it weren't so (life's too hard as it is, we need more easy), it's more than just taking medications. For most, a lot has to go into their treatment, if they really want to heal.

But.. yeah.. good luck.

Again, it'd be wise to stick around the forum - these people will be good help to you.

~Rose-petal

Hello and welcome... you are in the right place for help and support during your recovery process.

Your symptoms sound just like mine... i got sick on my birthday last month... the flu that put me in bed for four days... even after having my first ever flu shot?
I kept trying to recover and get back to normal...but it has not happened yet. I have spent many days and nights doing research
discovering that is best for me to accept a "new normal" until i am able to recover.
Trying to fight to get back to the old me was exhausting! I must be careful what i choose to spend my energy on... otherwise i will
over exert myself and get knocked down again. It can be frustrating on some days...but this forum helps me tremendously.

I have the neck and shoulder pain that flares up unexpectedly...sometimes its a piercing pain...my knees, wrist,ankles,hips all hurt...the neck pain is the worst!

I saw a documentary called i think "Under our skin" which shed alot of light on the political nonsense involved. *The best shortest video that i have seen was on the ILIADS site... i think its like 7 minutes long...but it covers alot of ground in that short time span.

I have "brain fog" alot these days...so i don't remember key details as much as i used to. It is great that you have access to a LLMD... i have not seen one yet. I am developing my own protocol for now... i ordered Dr Jernigans book about Lyme... which has helped pinpoint the areas to work on.

I am beginning with removing the ammonia from my system... i ordered a infra red sauna to help detox... also a filter for my shower... and quite a bit of other stuff to help me recover.

I am almost completely eating only organic foods... watching my stress level... allowing myself to rest instead of pushing myself... alot of changes...alot of research... but it will be worth it... i plan to get better in time... for now i am reminding myself to stay positive as much as possible.

Traveler & Deejavu are really great with answering questions... they are in "remission" as far as i know right now... so they are good to learn from... in my opinion.
And there are many other very caring and compassionate folks here that i have also learned from.

I know this is alot to wrap your head around...but just know that you are not alone in this. We all have this one day to do the best we can with... i try to remember to just "stay in today" and be gentle with myself... and keep stress level down.

I hope something in my ramblings might be of some help... if not... thats ok... someone else will come along that you will resonate with.

Take good care of you :)

Hi rose_petal,

I'm so sorry you are not feeling good. Of course chronic lyme exists and I for one had chronic lyme. The ignorance of many doctors.

You may have toxins left over in your body which can be causing many of your symptoms in my non-medical opinion. In the "New to Lyme? Start Here!" Sticky Thread on top of this forum are detoxing instructions and why a person should detox.

Below are 2 links (first link is about lyme toxins being the cause of one's symptoms):

www.benbrew.com/lb/lyme5.pdf

2nd link is about "Is lyme Curable?" (just something to ponder over):

davidjernigan.blogspot.com/2010/06/can-lyme-disease-be-cured.html

Hang in there okay, we are here for you!
Denise