I was diagnosed with Lyme disease this summer. Had been misdiagnosed with fibromyalgia, saw specialists, blah, blah, blah. You all know the routine. My old doctor retired, a new young guy took his place and when I told him that I could feel myself dying he started asking questions that ended with Lyme. I have seen Dr. P in CT, but I feel he has too many patients to give individualized care and he's too far away. I've made an appointment with the Fibro and Fatigue Center in Cleveland and wonder if anyone knows anything about Dr. S.
I thought this clinic might be a good place for me because my fibromyalgia symptoms have shown no improvement while my mental state, brain fogginess, depression, lack of libido have improved a great deal after 5 weeks of doxycycline and another 5 weeks of tetracycline. I have had Lyme disease for five or six years. Thanks, Betty
Edited Dr name as it is not allowed on the LymeNet Flash.
[ 03. January 2008, 03:01 AM: Message edited by: Lou B ]
Posted by cbb (Member # 788) on :
Hi Betty, Welcome to LymeNet. Glad you got a diagnosis and started treatment. Like you, many people have been misdiagnosed. Sadly, the lost time makes the disease more complicated to deal with.
If you don't see improvement, the dose per day may not be high enough. Your doctor may increase the dose as you continue treatment. Also, late stage cases take time.
What dose per day have you been taking of Doxy?
If you're taking an adequate dose of antibiotics, are you taking lots of acidophilus to replenish the good bacteria in your system? If not, you could have a systemic yeast infection which can cause many of the same symptoms of Lyme.
Has your doctor discussed possibility of Co-infections?
About all I can say about the Cleveland Clinic is that I haven't heard favorable comments about their treating Lyme disease.
Hopefully others will be able to help you more.
Have you checked "Links for newbies" under Medical Questions? I highly recommend you print "Diag Hints & Treatment Guidelines..." It's 33 pages of excellent info. www.ilads.org/burrascano_0905.html
Again, welcome to LymeNet.
Posted by Munch (Member # 11323) on :
There are many experiences supplied by current and former FFC clinic patients on the Immune Support CFS/FM board.
I had a very bad experience with the Detroit FFC doctor. The Quest WB was used to start Doxy. When my IGX WB came back negative, with many positives and IND bands, the results were used to deny Abx.
The FFC protocol was created by endocrinologist Dr Kent Holtorf. You can read his Lyme page here:
Unfortunately, the doctor I saw didn't know much of anything on this page. So in other words, I didn't get this protocol after spending $10,500.
Posted by CaliforniaLyme (Member # 7136) on :
WELCOME BETTY!(*!*)*!! !*)!*)!*!)*!)*!)!
Now we have two Bettys- you & BettyG!!! She will be along soon now!*)!*)!! I don't know that doctor but I know that if you find a good LLMD you can get better- WELCOME*)!*)!
Best wishes, Sarah
Posted by sixgoofykids (Member # 11141) on :
Hi Betty, and welcome.
If you have Lyme, I would go to an LLMD, a lyme specialist, not a fibro clinic.
My LLMD has many patients and is very busy. He is also in NY and I am in Ohio. He's is worth the trip, and even if he wouldn't recognize me on the street, he still is so good at treating Lyme that I have made great strides in returning to health.
Posted by mojo (Member # 9309) on :
I am a victim of FFC. I was blessed to get my Lyme Diagnosis there only because I read the test myself and saw that it was positive - Dr. didn't know how to read the test - she had to call the Dr. at the main office to confirm.
While they claim to be experts in treating Lyme they may or may not be - depending on the Dr. there. One thing is for sure - they will take a LOT of your money.
My twin sister spent $12,000 in four months and they wouldn't even give her and Igenex test although she requested one several times. She went to my Dr. and is being treated for Lyme (positive Igenex)
I would recommed that you see a Lyme Dr., too.
We want you to get better!
Posted by just don (Member # 1129) on :
Place LESS importance on distance and traveling,,,and ALOT more on the vision and GOAL of regaining your health!!
Stay the course with a GOOD LLMD,,,your very health and LIFE may depend on it!!!get well, thats ALL that counts!!says --just don--
Posted by Ann-OH (Member # 2020) on :
Sending you a private message,Betty.
Just to clarify things, the Cleveland Clinic is not the same as the Fatigue and Fibromyalgia place.
You are right, CCB, the Cleveland Clinic is not the place to go if you want treatment for Lyme. I know that first hand and from lots of people who came to our support group over the years.
Ann - OH
Posted by bettyg (Member # 6147) on :
welcome kentucky betty!!
sarah, i sent betty in the WEE am hours today!
betty, would you break up your above solid block text into short paragraphs. i sent you directions on how to do this.
this helps us neuro lymies be able to comprehend and read the short paragraphs vs. the long, solid block text.
length of post is fine; we just need things broken up like i'm doing here, and doublespacing between each paragraph. the longer you have lyme, the more you will get like those of us with lyme for decades.
glad you found us betty. from betty, IOWA
Posted by Tracy9 (Member # 7521) on :
HI Betty, Just wanted to add my two cents; my husband and I both see Dr. P in CT, for about six months now. We have been just astonished at the laid back, relaxed presentation he has, and totally impressed with the individualized patient care.
He spends a full hour with us or a half hour, whatever our appt was made for, and has never been running late. I have never felt I didn't have his full attention.
At our last appt, last week, we hit a traffic problem and were an hour late. He had his secretary call the rest of the patients for the day and cancel them so we could be seen (it was the end of the day,and we'd come 2 1/2 hours.)
I have NEVER had a doctor do that for me in my life. We offered to take a very brief appt, but they said no, they could move someone by just two days and it was fine.
I have never felt more attention from any provider I've ever seen. Yesterday I had some herx issues and he personally called me back within two hours.
I just had to get that out, defending "my hero" I guess. I was just so shocked to read that you didn't feel he gave you individualized attention. Myself as well as others I know go there have had the complete opposite experience.
Tracy
PS He is a little ADHD IMHO....which I've told him. Could that have been misconstrued as inattentiveness?
Posted by map1131 (Member # 2022) on :
Betty, hi there. I am in Louisville, Ky. I started this journey with lyme & company in '98. Didn't realize early on my knee(both) pain and corpral tunnel was early lyme & company.
In summer'99 at Nolin Lake, our lake home for first summer...(my husband and I had been using my sister and brother-in-law lake home in summer of '98). Do you know where Leicthfield, KY is?
Anyway in June helping my husband cut grass. He was on the riding mower and I was doing some with push mower and I put my bathing suit on to catch some sun rays while I helped with yard work.
One piece suit/ with elastic waisted shorts. I was 42 yr old woman who didn't wear two-piece very often, certainly not lawn work????? lol
That evening I started itching at my waistline and pelvic area. I had 12 or so bites on me. I had never been bite by chiggers or ticks before. My sister said they were probably chigger bites. She told me to put clear nail polish on them.
I did and they still bothered me for days. 3-4 weeks later, on vacation at the lake home again. One day I went to bed, the next morning having coffee on the deck and within hour of being up, the flu-like illness from hell hit me.
Based on my experience and my reading hundreds of people and their story on this site since .02. I recommend the LLMD in PA, not the chronic fatigue and fibro center in Cleveland.
Will the fibro center test you for lyme and other tick borne illnesses? Or will they just treat your fatigue and pain with meds and not try to find the reason you are having your symptoms? What triggered pain? The root of your pain?
This is my first reading of post by you. I seen your were from Ky. Maysville, isn't that northern Ky? My husband said he thought it was. I believe PA dr is closer to you than LLMD I went to see in Missouri in '02.
You can private message me. Or if you want to openly discuss what I know about LLMDs and how I chose between Hertimage PA and Springfield, Missouri LLMD, you can post questions to this thread.
Pam
Posted by Allie (Member # 10778) on :
I ditto Tracy9, Dr. P is my HERO!
Posted by Lymetoo (Member # 743) on :
quote:Originally posted by Allie: I ditto Tracy9, Dr. P is my HERO!
and the one in Springfield, MO is mine!!! Posted by map1131 (Member # 2022) on :
I don't know where Betty has gone. I wish she would post something again. I know she was upset about something that was PM/posted on another thread of hers.
![[Big Grin]](biggrin.gif)