posted
Let me first apologize to those who have sent me private messages that I have not responded to. I only check in here every few months, so any reply would be a late one...and to be quite frank, the questions asked have already been answered by the web page I put up in October of 2002 and maintained until October of 2004...since that time the material has been hosted by another website that volunteered to host it so that it would not be lost...it has been edited by the webmaster there and presented in a different format, but most of what I wrote is there...do a google search for my username and Lyme and it will come up.
Below is a reply to one of the private messages in my mailbox here, and I thought it was worth posting here:
Caveats: I am not a medical doctor, and am not qualified to give medical advice...I may be totally off base, or out of date with new treatments and procedures. What I say is based on my own experience and what I have read, your situation may differ drastically from mine. I believe I got Lyme from a dog tick in May of 2002. I have been symptom free since June 2003.
I think the biggest thing I had going for me was that when I learned I had Lyme I was alone in a new city. That may sound weird, but because I didn't know anybody there (and didn't tell my family I had Lyme until I was turning the corner and knew I was going to beat it) it was sort of me against the world...I didn't have a lot of people telling me what to do, I just did it...being alone I also had a lot of free time on my hands and spent 24/7 of my free time on researching this disease and how to treat it...literally hundreds of hours of research reading medical journals and studies and talking to thousands of people who have been through it...I wouldn't be symptom free if it weren't for many of you here on this forum (you all know who you are...or maybe you don't, but THANK YOU for your support and sharing of knowledge and experience if you were here from September 2002 until May of 2003...you all had a piece of the puzzle). I learned from your mistakes and skipped a lot of side-steps others have been through.
I realized very quickly that I was racing the clock...it became very apparent to me after a short time on the Lymenet forum that people spiral downward as time goes on and the best chance to beat it is to get very agressive as soon as possible. Too many fool around with unqualified doctors and inadequate treatment until it is too late.
Could I have been cured with a simple 3 week course of low dose doxycycline? In hindsight I won't rule out the possibility. But given all the people that had done a short course and not gotten better, or it came back a few months later, I was not willing to take any chances...I felt like I had one shot to do it right...there was too much at stake to do it halfway and hope for the best.
My first support group meeting I heard about a woman in a wheelchair who couldn't make it to the meeting and realized this wasn't something to fool around with, and I was unwilling to consider the idea that that is where I would end up. I realized that given the controversy surrounding this disease I needed to take charge and be very proactive and cover all of my bases.
Too many people early on think "I can't afford these expensive drugs and doctors, so I'll go with what my insurance company will pay for." I knew I was racing the clock and that if I was ever going to be able to afford the expensive doctors and drugs it was RIGHT NOW while I still had a good job I could go to (and still perform). It cost me a lot of money, and what I did may have been overkill, but I wasn't going to take any chances.
I'm not a doctor, and cannot give medical advice, but my layman's opinion on treating Lyme is this:
Get aggressive with it ASAP...I believe your best (maybe/probably ONLY) shot at a complete recovery is to get aggressive treatment within the first year after the tick bite...I believe those who fool with inexperienced doctors or inadequate treatments during the first year are playing games with their lives.
I believe you have to treat for coinfections, whether you test positive for them or not, whether you have symptoms or not...for a variety of reasons you may test negative even if you have coinfections. In my non-medical licensed opinon, at the minimum you should do a course of drugs for Babesia and Ehrlichia. The symptoms overlap, tick studies show 2/3 of ticks that are infected with Lyme are also infected with Babesia. If you incorporate a high dose of doxycycline for 6 weeks in your Lyme treatment, you will likely eliminate Ehrlichia and go after Lyme at the same time.
My thinking is to start treating Lyme with 6 weeks of high dose doxycycline...which will cross the blood brain barrier for Lyme and also eliminate Ehrlichia.
Next you do a 6 week Babesia protocal that includes Trimethoprim-sulphamethoxazole...studies show that 89% of those that include Trimethoprim in a Babesia treatment are cured of Babesia while those that don't will relapse. While on the Babesia protocal, also take Zithromax for the Lyme.
At this point you are 3 months into treatment, are done with the Babesia treatment, and have those 2 coinfections gone (if you had them), and are probably seeing a decrease in Lyme symptoms as well (I know I did). Continue with the Zithromax and add the doxy back to your treatment for 6 weeks. You will be 4 1/2 months into treatment at this point...now you start on the Flagyl, slowly increasing the dose as per accepted protocol...the full course of Flagyl will take you about 4 months, at which point you will be 8 1/2 months into treatment.
If you are still experiencing symptoms, continue the Zith/doxy/flagyl combo until you don't have symptoms for 2 months.
Once you have no symptoms for 2 months, stop your meds. Wait 3 months and see what happens. Then take a megadose of doxy and wait 3 days...if nothing happens take a megadose of Zithromax and wait 3 days...if nothing happens take a megadose of Flagyl and wait 3 days...if you pass all 3 meds with no herx or symptoms then you are done.
In short, doxy cures Ehrlichia, Trimethoprim with Babesia drugs cures Babesia, Doxycycline kills Lyme in your bloodstream and crosses the blood brain barrier, Zithromax kills it intracellular, and Flagyl kills the cyst form.
Read the above paragraph again...that is what cured me, and I have been symptom free for over 3 years now.
Of course I see my case as a simple one that was caught within the first year, and the above ignores a lot of variables and other complications...that is why you need an experienced doctor. But I think the underlying fact here is that you must treat for Babesia, Ehrlichia, bloodstream/blood brain barrier Lyme, intracellular Lyme, and Lyme in the cyst form. If you have other coinfections you must treat for those too.
What I have said so far also ignores Herxheimer reactions...if you have a severe herx your doctor may lower the dose or change your medications...it has been said that too severe a herx can do more harm than good and cause you to backslide...what I have said above assumes you aren't having a bad enough herx to warrant deviating from the treatment protocal and assumes you don't have kidney problems and you still have your spleen and don't have other medical problems...all of this complicates your treatment, and may require changes in the dosage, type and length you take your meds.
From the people I've talked to with Lyme, if you've had this a long time you will have bad herxes, which may cause you to have to lower your med doses and treat for a longer period of time.
My herxes were minor and I mostly just got better, so my experience may not apply to your situation.
8 1/2 months is a LONG time to be on medications (and I believe this is the low end time frame)...especially if you start to feel good halfway through it. I'm betting this is why so many don't get cured...they get tired of taking meds all the time, and when they start to feel better they stop...most illnesses you take a week or so of antibiotics and you are done, and many people don't even take the full course of that week!
If you have Lyme, resign yourself to the fact that you are in this for the long haul! You won't be able to get on with your life until you put this behind you. 3 1/2 years ago I thought I was going to die of this a slow painful death. But last fall I bought a few acres of woods and I am in the process of building my own house! I consider myself 100% cured.
You can beat this. You can go forward with your life. It is possible. But you may have to put everything else in your life on hold and spend a lot of your own money right now in order to do it.
Matt
Posts: 106 | From The Moon | Registered: Sep 2002
| IP: Logged |
5dana8
Frequent Contributor (1K+ posts)
Member # 7935
posted
Mattewgoss
Thanks for posting this. At first I was thinking it sounded like a cookie cutter treatment. People have different strains and may need to try different abx's ect..
But then I thought this brings hope that the beast can be beat.
-------------------- 5dana8 Posts: 4432 | From some where over the rainbow | Registered: Sep 2005
| IP: Logged |
kelmo
Frequent Contributor (1K+ posts)
Member # 8797
posted
My daughter has just begun her journey. Thanks for the hope. I will copy your letter and save it.
Posts: 2903 | From AZ | Registered: Feb 2006
| IP: Logged |
Beverly
Frequent Contributor (5K+ posts)
Member # 1271
posted
Thanks for your post, very interesting. I am gonna ask my LLMD about Trimethoprim.
And *way to go* on beating these diseases!!!!!!!!!! Posts: 6639 | From Michigan | Registered: Jun 2001
| IP: Logged |
posted
Excellent! It would be helpfull to know what doses you took of these meds. Full strenght means different things to different people.
Posts: 134 | Registered: Feb 2005
| IP: Logged |
Andie333
Frequent Contributor (1K+ posts)
Member # 7370
posted
Matt,
Hearing stories like yours gives me a LOT of hope, and I appreciate all the information you've shared.
Like you, I somehow decided not to mess around with this disease and to try and find the very best LLMD I could find. That was a far cry from my initial impulse to only go to a LLMD who took my insurance and was close to me (the doctor I see is in another state).
Lyme is a formidable disease and has to be treated that way, I think. The risks otherwise were just too great for me.
Plus, I was one of the people with a lot of years between tick bite and final diagnosis.
Now, after a year on antibiotics, I am just starting to see the light. Posts like yours make me believe it's possible to get there!
Thanks, and enjoy your place in the woods, Matt!
Andie
Posts: 2549 | From never never land | Registered: May 2005
| IP: Logged |
SForsgren
Frequent Contributor (1K+ posts)
Member # 7686
posted
It's great that you are well, but I still find too much focus by most people on Lyme.
The metals, parasites, neurotoxins, etc. all have to be dealt with as well or the chances of lasting recovery are lowwered. I don't think it is reasonable for the majority of people to expect to get well just by taking long-term antibiotics. A part of the answer...maybe yes. The answer....likely no.
-------------------- Be well, Scott Posts: 4617 | From San Jose, CA | Registered: Jul 2005
| IP: Logged |
I think your plan is a very good one! It took way longer for me, for the reason you stated: I had long standing lyme for more than 42 yrs when I began my treatment. I had to back off the meds alot.
But all in all, the drugs you mentioned worked well for me too! I also took clindamycin/quinine for the babs, and took plenty of trimethoprim too.
You are so correct about finding a GOOD LLMD, not just one who takes your insurance!!!!
Thanks so much for posting this. I think it will help alot of people.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96223 | From Texas | Registered: Feb 2001
| IP: Logged |
posted
But what if you've had this thing for at least 10 years already?
If you can catch it early, that's great but many of us have been MIS-Dx'd for so many years and only now are learning the truth.
I have never been treated for this disease and won't be able to begin treatment until September, when I see the doctor.
Posts: 47 | From New Mexico | Registered: Jun 2006
| IP: Logged |
The Lyme Disease Network is a non-profit organization funded by individual donations. If you would like to support the Network and the LymeNet system of Web services, please send your donations to:
The
Lyme Disease Network of New Jersey 907 Pebble Creek Court,
Pennington,
NJ08534USA http://www.lymenet.org/
UBBFriend: Email this page to someone!
![[Smile]](smile.gif)
Printer-friendly view of this topic