Do you have Lyme or think you may? Is this center a Fibromyalgia center? If so, I have heard they are not good for Lyme disease.
Below is a Lyme symptom list. You can have any combination of symptoms.
Unexplained fevers, sweats, chills, or flushing
Unexplained weight change--loss or gain
Fatigue, tiredness, poor stamina
Unexplained hair loss
Testicular pain/pelvic pain
Unexplained menstrual irregularity
Unexplained milk production: breast pain
Irritable bladder or bladder dysfunction
Sexual dysfunction or loss of libido
Change in bowel function-constipation, diarrhea
Chest pain or rib soreness
Shortness of breath, cough
Heart palpitations, pulse skips, heart block
Any history of a heart murmur or valve prolapse?
Joint pain or swelling
Stiffness of the joints, neck, or back
Muscle pain or cramps
Twitching of the face or other muscles
Neck creeks and cracks, neck stiffness, neck pain
Tingling, numbness, burning or stabbing sensations, shooting pains
Facial paralysis (Bell's Palsy)
Eyes/Vision: double, blurry, increased floaters, light sensitivity
Ears/Hearing: buzzing, ringing, ear pain, sound sensitivity
lncreased motion sickness, vertigo, poor balance
Confusion, difficulty in thinking
Difficulty with concentration, reading
Forgetfulness, poor short term memory
Disorientation: getting lost, going to wrong places
Difficulty with speech or writing
Mood swings, irritability, depression
Disturbed sleep-too much, too little, early awakening
Exaggerated symptoms or worse hangover from alcohol
It is very important to see a kowledgeable doctor. Many doctors do not understand Lyme and treat with outdated protocols. No test is completely reliable, and results can vary by lab. It is my understanding that the ELISA or titer is the least reliable test and the one most doctors run first.
Besides Lyme, ticks can also transmit several co-infections including Babesiosis, two types of Ehrlichiosis (HME & HGE), Bartonella, and Mycoplasma. Many people who have Lyme are co-infected. It may affect treatment choice and progress. It is important to be tested for these by a Lyme reputable lab such as IgeneX in Palo Alto, CA.
If you need a doctor recommendation, let us know. Are you in northern or southern CA?
It is also important to learn as much as possible. I recommend reading Dr. Joseph Burrascano's 2005 Diagnostic Hints and Treatment Guidelines For Lyme and Other Tick Borne Illnesses (on-line). He is one of the top Lyme doctors in the country, and many Lyme doctors follow his protocols. I also recommend the book "Everything You Need To Know about Lyme Disease
(2nd edition)" by Karen Vanderhoof-Forschner.
Southern. It's mainly distance and cost. Dr. Harris is asking an hourly fee more than my car payment (twice as much) and is a several hour commute.
I was diagnosed via EM rash. Yes, this place is a Fibromyalgia center, but I can't afford other places so it's this or nothing. I'm just wondering if I'm better off sticking with nothing, as these places get bad reviews.
Dr. Yang has a wait list of ~98, and I know of the other two doctors in the area who also have a long wait and high hourly fee.
Hi Little Lilly. The good news is you are early! And you are right to not want to wait as it gets worse. I think there is a doc in Arizona that people in southern CA go to. You might want to do a search on this board and give them a call.
Hi LittleLily, who diagnoised you with the rash? Did you take pictures of it? IF a doctor diagnoised you with a rash did he/she put you on treatment?
Do you have insurance? If so then possbly you could see a LLMD and then submit it to your insurance company. Just an Idea. There are not very many Lyme Literate Doctors...so many people fly from China to come here to find a doctor. A couple hours truly isn't that much to get the proper treatment.
I have seen the head doctor of the place you are speaking of on the net as a knowledgebale doctor of Lyme. BUT I don't think the n.p. looks into Lyme as a possiblity...There was someone else that was on here and went to this place...This person wasn't very happy with their treatment either. So two people that I have heard of...
It might be a good idea to get to a doctor that understands lyme ...might save you money and your health in the long run...
Do you remember being bit?
I know it is hard to find help and confusing...I do wish you lots of luck!
That's (Arizona) too far for me to go, a majority of places in this state alone are too far to go and/or over-priced.
I did/do have pictures of my rash, and it was originally a Nurse Practitioner who diagnosed me, and then the two M.D.'s in the same office confirmed. I wasn't given antibiotics until around two months after the initial bite (it wasn't until it spread that I went to the doctor and I had my 3rd mark). They did the ELISA which was negative, so they gave me two weeks of antibiotics and then one more week after that. After the 3rd week they said that all symptoms would slowly go away on their own and stopped antibiotics.
I'm pretty sure this is a second infection, as the first time I wasn't aware of Lyme, symptoms or the rash - which is why I bought cream for ringworm (I had no other way to get it so I thought I maybe got it trying clothes on, heh). Soon after treating said 'ringworm' is when I ended up being sick (few years ago) which essentially landed me in a neurologists office quite some time later for unexplained seizures (which were recorded via EEG).
It's something I knew nothing about and didn't learn about until I moved out of an endemic area (Ohio/Tristate) into this little suburb in CA. Needless to say, the more I read the more it makes sense and the more I wonder why I never read about this considering I've gone to college in the medical field. Due to neurological damage (unexplained), I lost my job 2 years ago. I do have insurance (Aetna, PPO - Open Access Plan) that I pay oop ~3,500 per year.
Hope I didn't forget anything, my short term memory left long ago so I keep going back to read which is why I have edited this post a zillion times.
Last edited by LittleLilly; 11-06-2007 at 09:37 AM.
From what I understand the Fibro centers are very expensive and the doctors are not Lyme knowledgeable.
Unfortunately, there are not many knowledgeable Lyme doctors. I know it is hard when it is expensive to see one, but your health is the most important thing. Usually the first appointment is the most expensive because it is typically very lengthy. Follow-up appointments are usually much less. Some doctors will spread appointments out and/or do phone consultations for patients who travel to see them.
You can submit the bills to your insurance company for what they will pay. Some companies pay more than others.
Yes, I have been to this center, if it is the one you mention. I personally would not refer a loved one there.
I know some people swear by this doctor, so let me just reiterate that this is just the abridged story of MY personal experience. Only YOU can make the right decision about your own healthcare.
Consider this: There is a sign posted on the check-out desk offering patients a sizeable discount on their next appointment if they post complimentary comments to the center's website. I find this barely tolerable at my mechanic. But at my doctor?
My private, personal, cynical and indefensible suspicion, based on my personal experience (which may not be typical), is the clinic you reference are using their patients' case files as unofficial research data; I was assigned a standardized treatment protocol that had very little to do with my own illness, but which--it seems to me--would add data rather nicely into an ongoing validation process for that protocol.
I was really ill when I went. More than $700 in blood tests were ordered. I subsequently found out that several of the more expensive ones are not considered diagnostic or reputable, even by many leading CFS researchers.
I was "diagnosed" with Chronic Fatigue even though my legitimate bloodtests actually showed another diagnosis that the SSDA considers "exclusionary" of CFS, meaning SSDA would reject a disability claim.
Instead of the medically indicated treatment, I was at first "prescribed" hundreds of dollars of proprietary vitamin supplements, which I refused. I was also prescribed hormone replacement that I was supposed to purchase directly from their in-house pharmacy. These medicines were supposedly unique and better (bioidentical, or so the staffer I saw said.)
But when I spoke to the in-house pharmacy staffer, that person told me that one of the meds was just a generic pharmaceutical I could from my local pharmacy; and the other a harder to find but also available version of a common hydrocortisone pill. When I checked my local CVS pharmacy, I was stunned. The HMG meds ran almost $2 pill, or nearly $200 on my schedule. The CVS meds? Less than $30/month.
It is my personal opinion that my doctor should not be permitted to "prescribe" vitamins that can only be purchased in his office; I think this represents a clear conflict of interest. However, it is legal.
I also feel concerned when I discover that my doctor, who has ordered me to purchase almost $1000 in blood tests, some of them considered medically unnecessary, is considered an expert witness on false positives in blood and urine drug tests. This seems kind of illogical to me.
If you really have Lyme disease, there are real specialists you can see; in my opinion, the clinic you refer to specializes in finding CFIDs everywhere, and in treating the disease whereever it may, or may not, exist. I have strong opinions about why this might be.
But chronic Lyme disease has gotten good media coverage lately (there was also a fictionalized case presented recently (2006-07) on a Health Channel program--I think it's called "Mystery Diagnosis" by a production company called GRB Entertainment; you might be able to track down that diagnosing doctor via GRB's website). As I'm sure you already know, treatment for Borrelia is longterm oral and/or intravenous anti-biotics. The blood tests are not considered reliable, showing too many false negatives.
I wish you the very best care and luck in getting the treatment you deserve and need. Trust yourself. In closing, it might interest you to know that my supposedly chronic illness (which supposedly would have required multiple $300 office visits, and $1000s in bloodtests and medicines and supplements) resolved OVERNIGHT when I was finally given an $11 course of doxycycline, and stopped taking a supposedly "necessary" anti-fungal!
But I say again: Don't trust me. Don't trust gossip. Or flattering magazine articles. Trust yourself.
I go to Doctor Powell's Fibromyalgia Center also. Been seeing him for about 4 to 5 years now. I LOVE the fact that he looks into the C.P. bacteria and virus's, protozoa's and all the rest. He has truly saved my qualtiy of life!
He is treating me for the C.P. bacteria but knows that I have the lyme also. Right now I am on the Iodoral, Zithromax, D3, Valcyte, NAC and am making huge improvements...
How long you been going to see him? Are you being treated for Lyme and the C.P. bacteria??
You can find information about him by letting your fingers do the walking from where you are sitting.
I also talk to other's that see him via net and they feel real blessed finding him. Finding the right protocol for each individual takes a while. What works for one may not work for another.
But I must say he will NEVER tell you that you are imagining your problems!
One lady I speak too she flew from your area and had two visits with him. Now she talks to him by phone for her appts. She has seen him for 3 years and is "very" happy with her progress.
I also have phone appts with him beings I am "now" 3 hours away...