Thanks to you all.

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mikazmat
Regular Member


Date Joined Sep 2009
Total Posts : 133
   Posted 1/22/2010 3:51 PM (GMT -6)   
CajunGrl said...
Hi Miki,

Welcome to the forum hun. Why don't you post a new post and tell us about yourself and what you've been through so far with Lyme Disease.


Hi Cajungrl and everybody else on the forum. Sorry about not replying to you sooner but I've had the mental capacity a similar size to the tick that bit me, for what seems like a long time. I feel that I have been consumed from the inside out, extremely slowly, for the last couple of years. I really have been meaning to join in with this great forum but LD had not only twisted my mind but stole my confidence too. I've spent many hours reading and then having to re-read all your comments and questions and trawling the internet for scraps of information to explain this maddnass. Although I saw the embedded tick and had the rash three weeks later, I had no idea what LD was. I know now..................oh yes I do!!

I have a brother (a microbiologist) who knew what the rash was, he sent me to the Dr (who hadn't a clue) armed with the rash information and the recommended dose of Doxy (100mg 2x a day for three months) and a pineapple sized EM rash, the Dr (bless him) gladly gave me the Doxy.......I went away and finished the ABX, the rash went and all was forgotten. Three months later along with a slipped disc like pain in my neck and flu like symptoms, I visited the Dr again, this is when all the fun started. Eventually my wife was so perplexed with the way I was acting she asked me if I had Alzheimer's disease. This was a year after my first bout of "flu". We then looked deeper in to LD, found this life saving forum and lots of internet info and took it all to my Dr. After three ELISA blood tests (done in the uk and all negative) I was dismissed time after time. After a frustrating six months I travelled 200 miles to a LLMD in London who cliniclly diagnosed me to start with and then also sent blood for a westernblot test to the USA (Igenex), this came back "strongly positive" according to their criteria and the CDC's.

I've had many different symptoms, from fatigue and arthritis to stabbing pains all over my body and tingling up my neck and face to what seems like every sinew in my body wanting to snap, you all probably know how that lot feels, but the worst by far was the slow mental torture I experienced. Most days I couldn't function at all as my ability to think was always so blurred, I was anxious alot of the time too, if anxiety didn't trash my days then apathy did. Irrational and illogical thoughts ate away at me turning me in to a paraniod wreck. Reasoning things out was sometimes impossible, the "brain fog", rage, tearfulness, depression, forgetfulness ......etc...... was destroying and nearly did destroy me. I could go on and on describing my symptom and pains but I know all of you have experienced something similar too.

Since then I have been taking Doxy 200mg/ 2 times daily with Metronidazole 400mg/ 3 times a day for two days a week. These are due to change very soon to three other ABX, Amoxicillin, Erythromiycin and Tinidozole (doses yet to be prescibed) taken with Amoy as a base and the other two staggered, one every three days the other every four. Within a month of treatment starting I regained alot of my mental ability and other symptoms subsided too. I'm still getting some very bad days, some not so bad days and now I have a few good ones thrown in. I'm detoxing and taking lots of probiotics, vitimins, milk thistle and fish oils. My LLMD has put me on a dairy free, gluten free, caffine free and alcohol free diet...................these carpet squares taste ok with relish on them!!!

Although from central England I was bitten in southern Hungary in Sept 06, that bite has nearly ruined my families; and my life too. My wife has been great through the whole, very bizarre last couple of years. We have watched the forum for over a year as we suspected LD was the culprit to my slow destruction, but LD as you all know, is very misunderstood espeasially in the UK. I couldn't get any response from my Dr other than depression. You all have really helped us to a greater understanding of LD and my wife describes this forum as her "lifeline", she now grasps, as do I, the basic complexities and symptoms of this disease, mostly thanks to this forum. I would like to thank all you fantastic people for not only keeping my marriage together but also getting me to realise my symptoms were not in my mind. Your honesty and frankness has helped us immeasurably to understand this illness, I feel part of your community and will continue to read the threads with interest. My wife and I feel that we already know most of you but this is my long over due introduction, I'm really sorry if it has dragged on but as I've been trying to this for a year it's all just spilled out.

Thanks for reading this and I'll try to have more input as time goes on.

Miki.

Post Edited By Moderator (CajunGrl) : 1/22/2010 3:37:51 PM (GMT-7)


CajunGrl
Veteran Member


Date Joined Mar 2009
Total Posts : 4717
   Posted 1/22/2010 4:47 PM (GMT -6)   
Hi Miki,

I'm so glad that you posted your story and that you were helped out here. I truly love hearing that this forum, with all it's great members, has helped others out.

Please continue to keep us updated on your progress and if you have questions, don't hesitate to ask.
**You never know how STRONG you are....until being STRONG is the ONLY choice you have**

lymediseasethroughmyeyes.blogspot.com/

Co-Moderator Lyme Disease Forum


mikazmat
Regular Member


Date Joined Sep 2009
Total Posts : 133
   Posted 1/23/2010 1:26 PM (GMT -6)   
Thanks Cajungrl, I'll be knocking around reading other sufferers questions and answers. You have all helped me through the last year and brough a little sanity back in to our lives. The vast range of symptoms seemed to confuse the medics in England and I had no real answers, but we found most of them on your forum. At least now,thanks to Igenex, I have a documented positive result to push under the Dr's noses over here. Thanks again Miki. 

Cheezhead
Veteran Member


Date Joined May 2007
Total Posts : 517
   Posted 1/23/2010 1:38 PM (GMT -6)   
mikqazmat,
Welcome to Healingwell. Great to have you here!!
it's good to see your finding some answers to your medical situation. Lyme is a very confusing illness to understand at first, but the more you read, and ask questions you'll be surprised how much you can learn. Not sure if you have found a LLMD in the UK yet, but their are a few there. You can find other dealing with Lyme in the UK at....

http://health.groups.yahoo.com/group/EuroLyme/

best wishes

Traveler
Forum Moderator


Date Joined May 2007
Total Posts : 35853
   Posted 1/23/2010 3:29 PM (GMT -6)   
Hi Miki!!

So glad you have hung in there for the last year (?) or so, I fully understand how bad this can be. So glad you are finally to a point where you can post now, so we can get to know you!!!!

I believe that LD is particularly hard on spouses - heck! we have the infection & can't hardly explain what's going on with us!!

I do hope you will be able to continue to post here, as I'm sure you have some great info, insights, & understandings having made it this far.

I wish you peace...
Trav
It's been said:LD patients can be as ill as people w/ congest. heart failure & in as much pain as post-op patients.


mikazmat
Regular Member


Date Joined Sep 2009
Total Posts : 133
   Posted 1/23/2010 4:52 PM (GMT -6)   
Hi Cheezhead and thank you for the welcome. I have found a LLMD over here in the uk, she seems to be very knowledgeable and seems to be sticking to the protocols of ABX and detox treatment I read about on the internet (and come to expect). It's costing a fortune but the way I feel right now as opposed to how I felt..............it has been worth every penny......sorry cent. The eurolyme forum was view by us avidly for a week or two but we never seemed to find the answers we were looking for, then we found this great site and never had to look at any more. What a great bunch of people with frank, honest advice!!

Hello traveler, I really didn't have the ability to write before......so now I have I felt I had to thank you all for the support you all gave me (even though you didn't know it). I'm sure that my posting here will continue as I have become interested in all aspects of this disease and there is no better forum to learn from than this one.

My wife has been through a very rough time understanding what happened to to me, maybe one day she'll write and ask her own questions.

Thanks for the wish................Miki.

bablymers
Veteran Member


Date Joined Oct 2006
Total Posts : 1458
   Posted 1/25/2010 6:17 PM (GMT -6)   
Hi Miki!

It is so good to hear your encouraging words! We are very happy you found help here and that you have joined this forum---Welcome!!! Congratulations on feeling better with your new treatment. We hope your complete recovery comes quickly!

I thought your post was very well written-----you gave such good descriptions of what this disease can do to a person. I'm sure it will help many others that will read it. Your comment about the "mental capacity a similar size to the tick" made me laugh. Thanks!

Best wishes to you, the bablymers family

mikazmat
Regular Member


Date Joined Sep 2009
Total Posts : 133
   Posted 1/26/2010 1:59 PM (GMT -6)   
Hi bablymers and thank you for your words and your wishes. Over many months I wanted to write to this forum but, as I said in the original post, I was totally lost. As nobody in the UK (Dr's) seems to know how this bug affects the sufferer my family and I had nowhere to turn to for advice. I can not stress enough how much support I felt I received from the members on this forum by reading their posts, to understand I wasn't in the latter stages of madness was a huge relief......believe me!

Today, I feel like a train to London (full of commuting ticks) has hit me at full speed, but I know now that tomorrow or even in an hour I may feel ok again. Since starting the ABX 6 months ago the crippling mental symptoms are gradually becoming less and less, I can manage to live with the pain (and everything else) but I'm not sure how long my mind would have coped. The trouble is that when something is affecting the way you think you do not realise it's happening, I now have total empathy for the sufferers who live with a mental illness that can not be helped with ABX.

Whatever your circumstance or however LD has touched you and your family I also wish the best for you.

Miki

pepphell
Regular Member


Date Joined Jan 2010
Total Posts : 134
   Posted 1/26/2010 8:17 PM (GMT -6)   
One success story - at a time. WOO HOOO!!

mikazmat
Regular Member


Date Joined Sep 2009
Total Posts : 133
   Posted 1/27/2010 5:23 AM (GMT -6)   
Hi Pepphell, not quite a success yet but hopefully well on it's way. I'm not under any illusion that the process is going to be quick but at least, on occasions, I feel a little like me of old.

I hope your story is one of success.

Miki
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