posted
I am looking for feedback on Dr. W in Texas. Also please suggest a good Lyme doc in TX area.
Also please suggest the tests needed to be done to diagnose Lyme. The basic blood test always comes back negative and as per CDC guidelines western blot test will not be ordered as per the doc. So wanted to rule out the possibility of Lyme.
Texas is not a good place if you have lyme. Be willing to travel out of state to see a good doctor and get treated properly.
Once you get to a good lyme doctor, they will order a Western Blot for you. Regular doctors will NOT do it because they are following the Infectious Diseases Society of America (IDSA) guidelines on how to test for lyme.
If you know any doctor who thinks for himself, you can call and find out if he will order a Western Blot for you. But, sorry to say, a WB from Quest or LabCorp is junk. They miss many cases of lyme. So, if you get a negative result on the test, it means nothing.
Once you get to a good lyme doctor, they will order the WB from better labs such as Igenex in California, a tick-borne disease specialty lab.
It takes a smart doctor who has seen lots of cases of lyme to be able to diagnose a person. So, unfortunately, even just for a lyme diagnosis, you need a lyme specialist. You are paying for their expert opinion because none of the lyme tests can be relied upon to give you an accurate result.
A good lyme specialist will base his diagnosis on your symptoms, medical history, exposure to ticks, and lyme tests. See page 7 of Burrascano's Lyme Treatment Guidelines where he says exactly that.
Then, to confirm the diagnosis, he will give you a trial of lyme treatment (antibiotics).
So sorry it is so complex and expensive to get a diagnosis for this disease. Our government just doesn't care about lyme. They are trusting the IDSA which says that lyme is rare and easily cured.
Meanwhile, the truth is that lyme is worse than an epidemic and it is extremely difficult to cure.
I suggest you look at the lyme symptom list on pages 9-10 of Burrascano's Guidelines. Make a list of all that you have. The more you have, the more likely you could have lyme disease.
When you really want to know if your problem is lyme, then you will need to dig up the money and get to a good lyme specialist (travel) and get your answer.
A Boston TV station did a show on the lyme disease controversy a few years ago. Here is the Boston Chronicle video on YouTube:
I suggest you watch this video a few times. It explains the lyme disease controversy and the role the IDSA plays in making it difficult for a person to get a lyme diagnosis and also good lyme treatment.
p.s. Notice also on p. 7 that Burrascano says the requirement to first test positive on the ELISA before ordering a Western Blot is illogical:
"The suggestion that two-tiered testing, utilizing an ELISA as a screening tool, followed, if positive, by a confirmatory western blot, is illogical in this illness. The ELISA is not sensitive enough to serve as an adequate screen, and there are many patients with Lyme who test negative by ELISA yet have fully diagnostic western blots.
I therefore recommend against using the ELISA. Order IgM and IgG western blots- but be aware that in late disease there may be repeatedly peaking IgM's and therefore a reactive IgM may not differentiate early from late disease, but it does suggest an active infection."
Posts: 9931 | From Maryland | Registered: Dec 2007
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TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
I am sending you the patient reports I have on Dr. W. in Texas.
If you want the name of a good lyme doc in Maryland who can see you quickly, let me know. A number of folks from Texas are seeing him.
He will do Skype or telephone appointments after the first in person appointment, so you will only have to travel to Maryland once every 3 months.
I know this may seem unbelievable to you, but once you read the thread where we discuss Texas and lyme disease (in my above post), then you will understand that this may be necessary to get a diagnosis and good treatment.
Posts: 9931 | From Maryland | Registered: Dec 2007
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Testing should be done through IGeneX Labs in Palo Alto, CA. I would get the "Complete Lyme Panel" if you can afford it or do at least Western Blot #188 & 189 if not.
A LLMD is one who has treated Lyme disease and the co-infections which come with it for many years and has gotten patients well. A good one will follow Dr. B's Guidelines, the "gold standard" for Lyme treatment.
Please read the following about LLMDs and Texas which was recently posted about TX:
"Texas is not a great place to find a good Lyme doctor. Texas threatens its Lyme doctors and gets them to move or stop practicing without notice.
Then, if they start up again a year or so later, they do it to them again. So, there really are few Lyme doctors there and no top notch ones.
Because of the sorry state of affairs in Texas, many folks from Texas are coming to the East Coast for testing and treatment for Lyme disease and it's co-infections.
At least half of all Lyme patients travel out of state for their care. The doc is the key to the diagnosis and for getting rid of this horrendous disease. I can't emphasize that enough-the doc is the key."
Look at the following thread to read what other Texans wrote about trying to get proper care in Texas:
posted
Thank you very much TF and hopingandpraying for the detailed information.
In general how long the treatment last if diagnosed with Lyme? How long the antibiotics need to be taken? Have you seen any cases where Igenix tests came back negative but still doc consider as Lyme? For the whole diagnose and treatment how much it would cost roughly to get an idea?
-------------------- NA Posts: 74 | From Dallas | Registered: Jun 2016
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TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
Nobody can tell you how long you will have to treat a case of lyme. Burrascano says that the longer the person has been sick, the longer the treatment will take.
If you don't go to a really good doctor, you will treat for years and will NEVER get well. You can treat for the rest of your life.
If you just got sick within the last year, you could be finished in a year. But, that does not always happen.
The Burrascano protocol is antibiotics. So, as long as you are treating, you will be on antibiotics. Some doctors will switch you to herbs once your symptoms are gone.
We see cases all the time where the Igenex test result is negative but a good lyme doctor considers the person to have lyme disease. THAT is why you want to go to someone good. A lousy doctor will just say you don't have lyme if your lyme test is negative.
Because you don't know how long you will be in treatment, you can't say what the treatment will cost. The first appointment will likely be about $600. The routine 1/2 hour appointments after that generally cost about $300. If you have insurance, you will get a little reimbursement from your insurance--maybe 1/3 of the cost.
Tests will cost you anywhere from $200 to $700. Insurance will pay about 1/3 of these costs also. These tests are done at the first appointment.
So, the total cost for the first appointment could be $1,200 or more (for the appointment AND all of the tests for lyme and coinfections).
Your insurance will pay for the prescriptions (unless you have to go on intravenous antibiotics) and the routine blood tests that the doctor does every few months.
So, you just have to pay for the doctor visits and the tests for lyme and coinfections which are done at the beginning.
You can put the high cost of the first appointment on a credit card and pay it off slowly.
After that, the costs are not much. Just whatever it costs you for your prescriptions normally and the short monthly lyme specialist appointment.
Because of the high cost, it pays to look at the list of symptoms Burrascano has on pages 9-10. The more symptoms of lyme you have, the more likely you have lyme.
If you give us a list of your symptoms, we can tell you if it sounds like lyme. Some symptoms are very clearly lyme disease--like what it does to your brain (memory, ability to think) and the pains that come and go all over the body and the stiff or sore neck. But, some people have less common symptoms.
So, give us your symptoms and then you should feel better about whether it is lyme or not.
I will send you the Maryland doctor's name now.
Posts: 9931 | From Maryland | Registered: Dec 2007
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posted
It took six years just to find out what was wrong with my son, so it is taking much longer to treat him. Although he had gotten better, he still has various problems.
Most importantly, you need to have a very good, competent Lyme-literate doctor with a long track record of getting patients well to evaluate and treat you. The doctor needs to follow the "gold standard" for treatment: Dr. B's Guidelines.
Some Lyme patients have a gene mutation which causes problems with detoxing (i.e. body getting rid of toxins the bacteria leave in the body when they are killed off) as well as other issues.
There are multiple infections which come with Lyme Disease, i.e Babesiosis, Bartonellosis, etc. They can cause a slew of problems and must be addressed in order to tackle the Lyme.
Research Lymenet and educate yourself every day about this horrible disease. I gave you names of books which are full of valuable information to help you.
Remember, what works for one patient does not necessarily mean it will work for another.
Posts: 8981 | From Illinois | Registered: May 2006
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