Well its been a year and a half.. - Lyme Disease Message Board

JustDave4now · 12-27-2006, 05:48 PM

I got my bullseye in May of 05, I went from doctor to doctor, no one would listen, they all told me it was way too early to get lyme. I got fevers, I started getting tingling in my hands, I became very tired and started with headaches. I started to get some real nasty neurological problems before finally I was reffered to a specialist and he set me up with a month on Doxy.

I got better quick after that and I thought Happy day...

But..

Now I am in a world of hurt. I have developed tremmors in my arms and head when i try to move, I am losing my sight as well as my hearing. I twitch often and worse, I am losing my ablity to speak and write, I get stuck on words now and stutter. My balance is horribly off, and I am getting these horrible headache's at the back of my head where my head meets my spine. My joints are a train wreck.

Now between that time I have been diagnosed with Hemochromatosis, I have high iron. Now I know certain disease feed off of iron, does anyone know if Lyme does.

On the 22nd I will be getting a Lumbar Punture, Lyme is one of the things they will checking for amoung other things.

I have had MRI's but they show nothing... I am thinking that the lyme got into my spinal column and fed off the iron. If that is possible. But I have no idea.

Iron / Lyme any connection?

6Blues · 12-27-2006, 08:00 PM

Hi JustDave4now.

Good to hear from you but sorry to hear you feel crappy. It stinks doesn't it?

My apologies if you've mentioned this before, but have you seen a Lyme Literate Medical Doctor (LLMD)?

An LLMD will treat you based on symptoms, not just test results. It can't hurt to see yet-another-doctor and it may be your ticket to health.

I also saw many doctors of different specialties and they all dismissed my symptoms as this or that. No one took me seriously and I found myself isolated and getting more and more sick.

I hate to say this, but Lumbar punctures are highly unreliable when looking for Lyme. That procedure is risky and can have side effects. Perhaps you can postpone the spinal tap until you've seen an LLMD?

I certainly don't want to tell you what to do - heck - I'm no expert! I just don't want to see you go through a risky procedure for nothing.

I'm afraid I don't know if there's a connection between iron and Lyme. Sorry I can't answer your question.

I remember how horrible I felt and not know what was wrong. I understand the fear and frustration.

Try to keep fighting for answers.

I can't recall, but where are you located? Maybe someone can recommend an LLMD?

I wish you a peaceful and healthy 2007. Hang in there.

ticker · 12-29-2006, 07:14 AM

Hi JustDave4now. I am sorry you are feeling bad. What dose of Doxy did you take? Four weeks of treatment is never long enough for Lyme.

Spinal taps show Lyme in less than 5% of cases.

I do not know if there is any connection between high iron and Lyme disease.

It sounds to me like you were not treated long enough or aggressively enough intiially. It is very important to see a knowledgeable doctor and be tested for all the co-infections: Babesiosis, Ehrlichiosis (HME & HGE), Bartonella, and Mycoplasma. It is estimated that 60% of people who have Lyme are co-infected. It may affect treatment choice and progress. As someone who has co-infections, I know firsthand how important it is to know if they are present.

Where are you located? If you would like a doctor recommendation, let us know.

Hang in there okay? With proper treatment, you can get better.

ncgirl88 · 12-29-2006, 06:57 PM

Hi JustDave,

Yes, there are quite a few doctors that believe lyme feeds off of iron. But that would point to low iron I would think.

Ticker, as I remember Dave was in CA but he may have moved since then.

Well I am sitting in the same room at my parents that I did in August of 2004 when I was unable to continue my trip to MA and VT where I was headed because I was so ill. I had three negative lyme tests - ELISAs - and I was in a really bad way. I had seen over 15+ doctors in a 6 month period and had started to think I was dying.

Anyway, so ironic to have checked the boards tonight...I check them about twice a month these days but decided tonight I had to take a break from the family festivities and check them.

You had posted as a newbie when I had. I was stunned by the similiarities of our symptoms.

I am sorry you are having a rough time. I wish you well and I hope you can find a doctor that takes some aggressive measures. I was on a year and a half of antibiotics. It was one rough road but I made it. I have a feeling that the road isn't over in my case but I am much better.

I have actually started taking a product by a company that makes a lot of different detox products - this one is for Parasites and has black walnut, clove and wormwood in it. I strongly urge you to research this and consider taking a tincture of the stuff.

It has helped me and another person I know so much...both of us have had or still have lyme and babesia. I also had ehrlichia.

Anyway, take care and I hope 2007 brings you healing and hope. So strange to be sitting in the exact same place I sat three years ago almost posting to you...I was so desperate then...

Anyway, it makes me realize how slowly and yet how quickly these years of fighting for my life have gone.

Take care my friend and keep us posted.

NCgirl88

zorm · 01-04-2007, 05:59 PM

hello there,

i have many of your neuro symptons also low iron and b12. b12 makes me worse when i take it. nobody got to the bottom of this. i also only better marginally on antibiotics. i have been told i have cns problems recently from neurological exam. tics suck blood so i geuss this may increase there appetite. i dunno for me b12 shots made my neuro symotns terribly worse rather than better i think solving the root of the problem is the key to the problem. i have had three questionable lumbar punctures and a bone scan of my sine which showed increased activity i am aneuro wreck. however these tests did nothing in terms of treating me. whatever tests you have its up to a doctor to sort the mess out. so don't bother with tests unless the doctor you trust and can help treat what they find. or you will end up no further on thats whats happened to me. abnormal tests but the docs i were under could not explain and left me a mess. i am being sent urgently to a neuro from a doctor i trust. have you stopped antibiotics? evrytime i stop mine i get sick again?