first my story, then a question about Doxy? - Lyme Disease Message Board

Roman77 · 06-21-2005, 05:45 AM

Hi all. I am new here. Unfortunately I am not new to Lymes. I have a question to ask, but I need to give you some history on my story first and then ask your opinions. Back in 1993, when I was 13 I fought to be treated for Lymes, which after a year long battle I finally was. During that year they told me I was a hypochondriac, should seek treatment for my "mental disorder", and stop focusing on Lymes as the answer to my problems.

Finally I found a doc that would help me out. God bless him. It took over a year of IV Rocephin and long follow up courses of Doxy to "cure" me. The doctors then at that time thought and told me it would never come back - which I now know was incorrect. Since then I have battled mono twice for months on end, been diagnosed with Raynauds Syndrome, and Hypoglycemia, been treated for strep more times then I can count leading to a horrific surgery to remove them, sinus infection upon sinus infection...you name it I caught it. That was up until last year after my tonsils came out. I was healthy after that or so it seemed for about 10 months. Then the pink eye started. I had 3 boughts of it in 5 months. I was sick more often, colds and flus started up again. Then one morning in March...I woke up mostly blind. As I woke up more and more the vision came back a little, but it was grainy and blurry. I was seeing multiple images and auras. I had never experienced something so scary. I tried to put in my contacts thinking, oh this will help...it only made it worse. I went to an opthomologist and she did all the "normal" tests- when after 3 visits, a field vision test, and cultures came back normal she declared me as having "hysterical blindness".

Yah right. I want to be blind. I don't think so. Anyway, I tried to keep working at my job - I had just been promoted! But I had to take a leave of absence because of all my cognitive and physical issues, which I have been on for 3 months now and just last week was let go because I have no idea when I'll be able to go back to a "normal" life. As the weeks went on I started having horrific headaches, was sensitive to light and sound to the point of feeling like I was going crazy, dizzy, off balance, had tremors, started stuterring, became soooo forgetful, felt so out of it, was tired but couldn't sleep, felt on fire but didn't have a temp or if I had one it was low, couldn't concentrate, limbs went numb and tingly for no reason, all of my joints hurt and ached, muscles felt weak and uncoordinated and the list went on and on. Of course the numerous docs I saw thought I just had migraines, anxiety about my job, etc. I saw neurologists who did spinal taps, blood work galore including all the "basic" screening tests for Lymes wchich of couse came back negative, and the rest....everything kept coming back normal - except my brain MRI's, which showed demylenation areas and my VER (visual evoked potentials) which showed up as very delayed. So the docs diagnosed me with "possible MS" asking me to wait 4 months and come back for another MRI to see if there were changes, and in the meantime I should return to work. Return to work???? How could I do that when I couldn't see, couldn't get out of bed, couldn't type, couldn't talk, couldn't remember things, and just plain couldn't function in any normal way?? My doctor was blind to my plight. My neurologist wouldn't even consider that I had Lymes or even that the tests could be false negative! So as I wasn't about to wait for more months in agony only to be told "You have MS.", my parents and I drove down to Springfield, MO to see Dr. Crist. He was everything I needed! Just on one sypmtom survey he generally gives to his new patients (you know the kind...what hurts, past med history, etc) I had 84 of the 88 sypmotms he had listed for Lymes! Just on paper the statement next to my score said "most definitely Lymes". He ran blood work that was sent to accurate labs that he trusted out in CA, and began my treatment for Lymes immediately. The labs came back positive for Lymes - for all the bands recognized by the CDC, plus more even! I couldn't believe it. They also discovered I have many neurotransmitter deficiencies, nutritional deficits, and a body full of toxins that I can't get rid of. So I started on my Doxy hoping to be better soon. Unfortunately I think I have had my Lymes since my first fight with it when I was 13, that's 15 years of it hiding in my body and working slowly in hidden places. I went on the lowest dose of Doxy 100 mg 2 x day, I only lasted 3 days. The herxes began. I have been waiting since March 18th to get back on the Doxy! Finally I went 3 days in a row without turning christmas red at every joint and watching my skin mottle, get hot, and itchy as it played a game of connect the dots with all my other joints. As those finally stopped and my high level of pain and swelling grew less and less this past Thursday I hoped to get back on the Doxy again. I tried taking just 1 dose, 100 mg just once a day....just Thursday and Friday it lasted. By Friday it was hell again, starting all over, back to back "red crab" episodes, and the pain was tremendous. So now I am forced to resign myself to waiting out this herx and trying to take my Doxy just 2 tiimes a week. Only 100mg twice a week! I am so frustrated. I know this is going to be such a long road, but it is hard to accept. But at least I know the Lymes is dying - any news like that is good news!

So here are my 2 questions for those of you who made it this far.....any tips on how to help your body get rid of the toxins so that I can take my Doxy more often? I'm pretty sure there's nothing I can do, but I thought someone might have some tips. I am already taking about 60 pills a day - vitamins, minerals, oils, acidophilus, photo-nutrients, charcoal, fiber supplements, anti-oxidants, neurotransmitter protocols....I doubt there's anything else I can do but wait for my body...but I thought I'd throw it out there and see what God provides me with from you all.

And the other question is: is there anyone out there or where could I find someone to email with for support? This is a hard road and my friends just don't understand and you can only tell your family so much before they start to get tired of hearing it. I plan to keep posting here and reading, but I think it would be really helpful for me to find someone to bug.

Lastly...I just want to say thank you all for your posts that I have been reading here, they soothe my pain and help me see that I am not alone in this fight - your words and stories give me strength to keep fighting.

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Betterdaysforme · 06-21-2005, 06:25 AM

Dear Romans,

I just wrote to you on another thread but now you have answered a lot of the questions I asked. I think the only thing that I can add to the mix is the cholestryamine that sleeperwoken and gerribear are taking seems to be ridding their bodies of the toxins. Their doctors just added this to the mix of meds they have been on for years. They both were like me and had severe mobility problems besides the normal garbage that goes along with this disease. I am convinced it isn't just the lyme but the toxins and die-off that is keeping us from getting healthy. Somebody on here said that they read that the live lyme feeds off the dead. Yuck!

After 2 months on it sleeper talked about golfing and shopping and being normal again and after only a week on the cholestryamine gerribear went to the grocery store and post office and drove herself. I can't say this is the "magic bullet" but it seems to be working for them. I know my doctor won't prescribe it for me (he follows CDC procedure) so I have taken some advice from Angela to get Wobenzyme because it can have the same results as far as pulling toxins out of you. I just got it yesterday so I am just starting and hope I have some results. Another product which is also natural is beta sitasterol. It was developed for prostate problems but they have discovered it works the same as the chlostryamine for cholesterol and it is a natural type product readily available at the health food store. If the Wobenzyme doesn't work I will try it. I am as stubborn as the lyme. Right now it is a battle of wills. But maybe Dr. Crist will prescribe the cholestryamine for you if you ask.

I know you feel it would be nice to have a "pen pal" but we are not allowed on this site to give out personal info. You can do just about anything else on here though. Ask for advice, complain, give comfort to others, and spread the word about what is working for you and what isn't. The best thing I can offer as a pen pal is that you can entitle your threads to an individual but evereybody would read them and maybe jump in occassionally and talk.
You will garner a lot of love, info, and compassion here and I urge you to continue to post. When I first started my husband had to pull up the site and get to the threads for me because I knew nothing about computers. I have come a long way and taught myself to maneuver around here pretty much and I would be lost without the folks on here. I couldn't do this without them because we all know what this is about. You don't have to explain yourself liike you would to somebody who has never had lyme.

Keep us all posted on your journey and "stay connected".

betterdaysforme

Roman77 · 06-22-2005, 04:28 AM

Thanks for the welcome and support BDM!

I have been looking for a place like this for the past 4 months...finally stumbled on it and I am here to stay! I will definitely talk to my LLMD about the cholestryamine...sounds like it might be a good place to look for help. Thanks for the input...much appreciated.