OMG.. a cure.. a partial cure..at least an answer for sure!

Sorry, I accidentally posted this in the misc forum the first time...

Hi to my old friends, I know I've been absent for a long time, I don't come here much any more, but I just had to share, I'm so excited because I've been handed an answer after 15 years:

I know that this post may not be relevant for many of you, but if it is important for even ONE of you, then I will have accomplished something! Those old timers here may remember I've been fighting daily migraine / chronic headache for ~ 15 years, started when I was 29. Never had aura, never had them as a kid, they just started monthly and got worse all of a sudden, and like many I tried every drug and treatment under the sun, triptans being the only thing that work for me, albeit a nasty rebound effect. As a biologist and researcher I studied up on my symptoms and treatments, but like you was told "incurable disorder", plus a lot of other erroneous conclusions, and 11 neurologists later, I had no clear answers as to cause, which I honestly believed was not purely genetic or rotten luck.

Anyway, I have a dear friend who has been researching her own disease - she is so thorough she is now a consultant for the MD's - ever since she was diagnosed with Lyme disease. She lives in the SoCal desert, by the way, and that's where she got the tick bite from. She kept urging me to get tested again (I had already, and it was negative), and warned me that I needed to see a specialist, as testing is very problematic, and there is only one lab that is reliable and thorough enough (IgeneX) for tick-borne diseases.

So I finally went to the only MD in town who specializes in Lyme disease, and was tested for all tick-borne pathogens - NOT because I was convinced I had Lyme, as my symptoms don't quite match, but because working as a biologist in a particular location (Camp Pendleton Marine Base) about 15 years ago I was immersed in ticks on a daily basis. I never had the bulls eye rash, but had lots of bites. However, I was told certain things about ticks, that the kind I usually encountered didn't carry the disease, and Lyme wasn't prevalent in SoCal. This is not accurate.

The result: I do NOT have Lyme, and am glad! I did test undeniably positive, however for Babesia duncani, a tick-borne, protozoan parasite that is infamous for causing CHRONIC FATIGUE and SEVERE MIGRAINE, among a couple other things, and can hide in the blood stream for months and cause symptoms continually or sporadically, but ultimately wears out your immune system, and can be fatal on occasion. I also have 2 friends locally who have also been diagnosed with Babesia (Bah-BEE-zee -uh_, and they suffered a lot, but are feeling tons better now after treatment (one has been treated for 2 years, another took 6 months to feel better). For more info on Babesia treatment, you can see
http://ebooks.hopeacademic.com/BabesiaUpdate2009-Ebook.pdf

The important thing is, it can be treated, with antibiotics and Mepron, not fun, not easy, but possible!! Note, there are other tick-borne diseases that cause joint pain, headache, fuzzy thinking, and fatigue, and aren't Lyme, but are carried by ticks as well, like Bartonella, Ehrlichia, and others,and not ONE of the neurologists I spoke to knew - or cared - about having a discussion about these diseases!

Can you believe I've probably had this thing for ~ 15 years? Now, after all I've been through with migraine, mind you I'm not celebrating until I actually FEEL better, I'm not naive here, I know how many factors can complicate symptoms and disease. But now there is a light at the end of the tunnel, some hope, and at least a partial answer for my symptoms, which are primarily migraine and severe chronic fatigue!

Be aware, also, that Lyme and related tick-borne diseases are being diagnosed at an exponential rate all across the country, IT IS AN EPIDEMIC, but doctor's are sorely behind on diagnosing it, and it is due to nasty politics and insurance company controls. If you want to learn more about Lyme disease - which has been oft misdiagnosed as MS, Parkinson's Alzheimer's, fibromyalgia, and more - there's a new documentary called Under Our Skin http://www.underourskin.com/.

I now it sounds weird, that your symptoms could be a result of a tick bite, but I now have 3 close friends (who are not biologists!) all diagnosed positive, what are the odds? As I sit here (suffering from swine flu, arrgh) and in a little pain, I am still feeling like something significant has changed for the better. So, if you have any question at all - get tested - by an expert! (Average testing is faulty and can come up negative due to CDC's weird testing regulations.)

Have a wonderful holiday filled with pain-free moments

Renee a.k.a Casey

Hi Renee,

I sure do remember you! I am very happy with your diagnosis and resulting relief. Your story was a rough one and I always thought you were a tough cookie to go through all that you did.

Thank you for posting about your success. I hope it helps lots of others but even if it is just one person, then hurray!

I hope you have a wonderful holiday and continue on the road to good health. If you feel up to it, please keep us posted. We love to hear happy stories.

£eslie

Renee, it is good to hear from you again! I am glad you found out about your Babesia. I got chronic Lyme, Babesia, Bartonella and several other nasty bugs from my tick bite(s).I went undiagnosed for 13 years. Have been in treatment for 4 years and have seen great improvements. Unfortunaly, I have not tolerated the treatments for Babesia very well.

This could be one of the reasons my migraines are still so bad. Although I did get rid of the CDH for the most part. I am happy to see another post on this subject if it helps someone else get diagnosed. The sooner the better! I have a lot of pain and fatigue that are probably here to stay because I went so long untreated. I hope your treatment gets you well without too many side effects. Remember you will feel worse before you feel better.
Hugs,
Cindy

Renee & Cindy,

Care to share why the treatment is difficult to tolerate? Just curious.

Merry Christmas!
£eslie

Leslie, when you are on antimicrobials (usually antibiotics) for tick borne diseases there is a die off of the pesky bugs. That releases large amounts of toxins into the body, and they can be difficult to eliminate. You have to do lots of things to detoxify while you are on them. The reaction is called a herxheimer (sp?) or herx for short. This is ususlly a flare up of the symptoms you are having, but can be very intense and even dangerous. The first time I had one, I thought I was dying! Lyme bacteria is very similar to Syphillis. It can change forms to hide in the body which makes it hard to treat. There is a huge learning curve when you are diagnosed.
Merry Christmas,
Cindy

Casey,

Thanks so much for posting. Success stories are so few and far between. I have always lived in the woods with a lot of deer. I saw five this morning in my front yard.

Definitely something I want to bring up to my Doc.

Charlotte

Thanks, Cindy. You've probably posted about this many times before but I guess I was not paying attention. I really appreciate that.

It sure sounds like the cure might be more miserable than the disease, to a certain extent.

When my first born (now age 25½) was an infant, he had a horrid rash. I took him to a dermatologist who happened to be on the cutting edge of the Lyme problem, back then. (east end of Long Island). Oh, and my baby didn't have Lyme.....it was just that I remember the doctor's expertise being very well known at the time.

My childhood friends' mother was bitten when she was in her late 50's. She ended up with horrific arthritis. She's pushing 80 by now, I suppose and in a nursing home. I'm sure she never had the proper Lyme treatment. What a difference her life would have been.

My ex-husband has psoriatic arthritis. I'm sure it's quite possible he has Lyme but I am sure any mention of it from me would fall on deaf ears. He is permanently disabled now. His sister has the same arthritis but not as severe.

Gosh, I didn't mean to go on and on. Thanks so much, again.

Merry Christmas,
£eslie

Merry Christmas everyone! and thanks for that Cindy, and Leslie. Yes, I am also told that the mepron (anti-parasite drug) that is used to truly kill off the Babesia needs to be in a dose of 3000, as opposed to 1500 mg a day, and that can be very hard to tolerate. See the link in my first post.
As I have the flu now, I haven't even begun treatment, but I know it wont be easy, as the flagyl already stared a flare-up 1st time I took it, and I felt like absolute crap.

Well, I'll keep you posted. I guess if it's one thing I've learned it's patience. Now if only the bill collectors would have the same amount of patience...

Ah well, Happy New year, everyone!

Renee

That's wonderful news Renee..a diagnosis and you are feeling better.. Doing the dance of you for you.

You've been missed..

Glad to hear from you, and even more glad to hear that you are finding some answers at last.

How wonderful that you have someone that is willing to go the extra mile to diagnose and treat you. I hope you will continue to keep us posted - I have missed you...

Holly

Hey, Casey! I hope this diagnosis will make a huge difference for you health wise.
I wonder if you were also checked for other and all kinds of parasites since you do work with animals.
I hope once you'll be past the Herx effects or whatever it is called you'll be feeling a helluva lot better, like a born again!.
I dare to wish even M will be gone for well!


Please keep us posted how are you doing!

Risa

Renee,
It's truly good to see you posting here, I've missed you! I'm glad you finally have a diagnosis and will get treatment. I've often wondered if my fibro is really lyme or some other related illness. I've had two lyme disease tests, but both were negative and probably weren't the reliable test you mentioned. Sorry you are currently sick with the swine flu. This too shall pass.... Hope everything else is going well for you.
MM

Renee,

Thanks so much for your very informative post. I hope you'll continue to see improvement and hopefully even eradication of the migraines.

Please excuse my ignorance, but what type of doctor do you see to get a good diagnosis of tick-borne diseases?

Growing up on a farm in central Minnesota, my brother and I would have contests to see who had the most ticks each summer. The counts would be in the hundreds. I don't think I've ever been tested for Lyme or any other tick-borne illness. Is it possible it could have been hanging around in my body after 30-40 years?

Thanks again.

Becky

Becky, I am not Renee, but I can answer your questions. Yes, it is possible to have Lyme even after that much time. If you feel you may have it, go to www.lymenet.org and read about the symptoms. You can ask about Dr.'s in your area. They are referred to as Lyme literate MD's (LLMD).

They are different types of Dr.'s. A few are Infectious Disease Dr.'s. Usually the best ones are ones that have either had Lyme themselves or have seen so many patients with Lyme that they became more educated on it. My Dr. used to be a family practioner, but now only sees Lyme patients. She is a Lyme warrior herself.I hope you do not have Lyme, but if you do, its important to be treated. It gave me the shivers to think of hundreds of ticks on anyone. I have tick nightmares!
Hugs,
Cindy

Do you have to have a bulls eye rash to have lymes or any kind of tickbourne disease
that causes migraines?

This summer I spend a lot of time in the woods and pulled about a half-dozen ticks off me. They
were all the ones with the little white dots on them. I never had any rashes, but I do now
have terrible headaches.

I've been chalking it up to my pregnancy since this is around the same time I stopped breastfeeding
The neurologist says that since before my preg. my Ms were hormonal, so its a high chance that
when I stopped breastfeeding and my hormones changed again so my migraines got worse
and thats where I'm at now. Who knows though, maybe its because of all those ticks I had
gotten in the woods. Its worth a couple of needle sticks and tests because hey, you never
know.

The more I read about Lyme, and tick related disease, the more I am totally totally astounded by the medical community's ignorance on the disease, especially testing and effective treatment. The CDC is in denial about real treatment, despite it being a grwoing epidemic. Cindy's website suggestion is a good one. Only 40% of people with Lyme and related have the bull's eye rash.

You know you have found a worthwhile 'Lyme" doctor if they've read up on the findings of the major researchers around the world, and if they are informed on co-infections, like Babesia and Bartonella. They should also know there are very few reliable labs for testing in the U.S., and the #1 lab is IgeneX. The co-infecting pathogens are known to cause chronic fatigue, suppressed immune systems, and migraine! Here's an interesting factoid: 70% of (deceased) Alzheimer's patients tested positive for Lyme, they had the bacteria. They are also finding many patients diagnosed with fibromyalgia, MS, and Parkinson's are positive for Lyme. It is time American doctors started paying more attention to infectious disease as causes of (to date) incurable disease; when I lived in S. America is when I realized just how little our U.S. physicians know on the subject.

Want to read a really stunning book, about infectious disease and its spread from our own govt biological warfare testing, read 'Lab 257', especially if you live in the northeast. Be prepared to be very upset.

In short, if you've been around ticks at all, even if it seems like a long shot, find a doctor, get tested. My lab tests were almost entirely covered by Medicare, FYI.

Renee

Thanks Renee (great to hear from you!) et al for this powerful information. I will definitely be looking into testing ASAP.