posted
My mother called a well known hospital in Ohio to see if they had any specialists for lyme (my sister and I have been ill for a couple years and diagnosed with ailments such as CFS). They told her they have three specialists and (as I have heard) blood tests are not always conclusive but spinal taps are... Have any of you had a spinal tap to diagnose your lyme disease?
Posts: 463 | From Sandusky, Ohio | Registered: Jan 2012
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Keebler
Honored Contributor (25K+ posts)
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posted
- No. No. No. No. No. No to spinal taps. Absolutely not.
They are not at all a good or proper way to assess lyme. As you will soon see, most doctors, even at the leading top hospitals, are ignorant about so many things regarding lyme. Sad but true.
Find an ILADS-educated Lyme Literate doctor (LLMD).
Now, even if this is not lyme, for complex cases such as yours and your sister's, they are usually also very well versed in other tick-borne infections, and in other chronic stealth infections.
Links here should help. It's a lot to take in so just be sure to breathe along the way.
Also, be sure to avoid ALL processed foods and additives, especially MSG and aspartame. Google for all the names.
I'd also avoid foods with "natural flavors" added as they are most often not natural at all and can be too stimulating to the nerve cells.
This will help sort some things out as you wait for a LLMD appt.
Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Now, a note about lumbar puncture (spinal taps). They can be good at identifying OTHER things, just not for lyme.
And, for many of the other things they might consider, there are other, non-invasive tests - or methods a wise doctor can use for clinical evaluation.
But, for lyme, it's a very ineffective test. I'd hate to see you and your sister led down this path of deception by those who are not lyme literate.
What normally happens is when the spinal tap comes back negative (as it can even in a blaring case of acute lyme) . . . then they have the ammunition to deny you lyme treatment basically, forever.
Any future tests you may get elsewhere, even if positive, will not be accepted.
Only once in a blue moon will a spinal tap be able to detect lyme. You'd have a better chance at winning two state lotteries and the national one all on the same day.
One poster here (Tincup) likens it to fishing. You can put your net into a river and catch a fish. So, you know that river water contains fish.
But, if you don't catch a fish, that cannot prove that fish do not exist in that river
But, for those who do lumbar punctures to diagnose lyme, they think absence of borrelia b. particles means lyme could not exist. Wrong.
Even if that spinal tap might come back positive for lyme, you would not be offered adequate treatment as per ILADS' standards and you'd be right back where you began.
I sent a PM with the name and website of an ILADS-educated LLMD in Indianapolis (whom I have not seen but has an good reputation).
I hope you get some good leads on others who may be closer to you. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
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posted
- It's very nice that your mother is working alongside you and your sister to get to the bottom of this. I hope you all become closer during this time of learning. It's a very steep learning curve. Take care of each other. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
I had a terrible case of lyme. The neurologist my doctor sent me to wanted a spinal tap. I did it. It was normal. This was even though I had a positive lyme test from LabCorp and an abnormal brain scan that said "lyme disease cannot be ruled out."
Then, I went to a lyme doctor and was tested through Igenex lab in California and found out I was positive for 3 tick-borne diseases--lyme, babesiosis, and bartonella.
Lyme just does not hang out in the spinal fluid normally. Now, if you have lyme meningitis (inflammation of the lining of your brain due to lyme), you have a 13% chance of them finding lyme in your spinal fluid.
But, for the typical lyme patient, this test is a waste. But it is the FAVORITE lyme disease test for a neurologist to order.
After my spinal tap, the neurologist told me firmly, "You do not have lyme in your brain. Do you hear me! You do not have lyme in your brain."
I said, "How can you say that when my abnormal brain scan says that lyme cannot be ruled out?"
Then he said, "Well I don't THINK you have lyme in your brain."
Here is a quote for you from the foremost lyme disease doctor in the world--Dr. Joseph Burrascano:
"Spinal taps are not routinely recommended, as a negative tap does not rule out Lyme. Antibodies to Bb are mostly found in Lyme meningitis, and are rarely seen in non-meningitic CNS infection, including advanced encephalopathy. Even in meningitis, antibodies are detected in the CSF in less than 13% of patients with late disease!" (page 8)
In plain English, Burrascano is saying that the spinal fluid will be tested to see if there are any antibodies to lyme in it. The medical profession does not have a direct test to look for lyme, so they look to see if your body has made antibodies to the lyme bacteria.
Unfortunately, with lyme disease, lyme knows how to trick your body's immune system so that many people do not make antibodies to lyme even though they are very sick with lyme.
So, the doctors who don't specialize in lyme still think that this test is good. It is good for saying that a person doesn't have lyme disease when they actually do.
They should stop doing spinal taps to diagnose lyme. It is ridiculous that they are still doing this.
The Burrascano quote is saying that in a small percent of cases (13%) a person with lyme will actually have the lyme antibodies show up in their spinal fluid. (That means that 87% of people with lyme will NOT have lyme antibodies show up in their spinal fluid--87%!!!)
But, to be in that 13%, the lining of your brain (the meninges) has to be inflammed with lyme disease.
Unfortunately, the well-known hospitals don't know a thing about lyme. And, everything they know about lyme is wrong!!!
You have to come to a lyme board like this or a lyme support group (see Support Groups on left side of page) to find a doctor who REALLY knows about lyme disease.
Lyme is in the midst of a major medical controversy. The medical profession is angry that some doctors (the lyme doctors) believe differently than them regarding lyme disease.
This controversy was highlighted by a Boston TV station news program about 3 years ago. View the following video to understand WHY you are hearing 2 different stories about lyme disease.
The show was taped by a girl on LymeNet and she put it on-line for all of us to be able to view it. You will learn a lot about the medical controversy surrounding lyme disease and why it is so hard to find a doctor who knows how to cure a person of lyme disease.
You will also hear over and over how people tested negative for lyme disease, only to find out later that they actually had the disease.
My lyme disease was diagnosed based on symptoms, my medical history, other possible causes for my complaints, lyme tests, and my reaction to treatment. That is how diagnosis of lyme has to be done according to Burrascano.
Here is a quote where he says this very thing:
"DIAGNOSTIC HINTS
Lyme Borreliosis (LB) is diagnosed clinically, as no currently available test, no matter the source or type, is definitive in ruling in or ruling out infection with these pathogens, or whether these infections are responsible for the patient's symptoms. The entire clinical picture must be taken into account, including a search for concurrent conditions and alternate diagnoses, and other reasons for some of the presenting complaints. Often, much of the diagnostic process in late, disseminated Lyme involves ruling out other illnesses and defining the extent of damage that might require separate evaluation and treatment.
Consideration should be given to tick exposure, rashes (even atypical ones), evolution of typical symptoms in a previously asymptomatic individual, and results of tests for tick-borne pathogens. Another very important factor is response to treatment- presence or absence of Jarisch Herxheimer-like reactions, the classic four-week cycle of waxing and waning of symptoms, and improvement with therapy." (page 7)
Notice especially the last sentence. Believe it or not, in the year 2012, this is still how lyme disease has to be diagnosed.
Posts: 9931 | From Maryland | Registered: Dec 2007
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WPinVA
Frequent Contributor (1K+ posts)
Member # 33581
posted
The IDSA doctor I went to (for a second opinion) wanted to do a spinal tap "to check for meningitis." After doing my research which included posting on here, same as you are doing, I declined and never went back.
It was the right call. I was already on my treatment with an LLMD and had already had some slight improvement. I didn't have any signs of meningitis on a physical exam (PCP checked).
The most important thing is to find an LLMD. It's true that the blood tests are not absolute but the right doctor doing the right tests at the right lab will likely be able to get what they need to supplement their clinical judgment.
Posts: 1737 | From Virginia | Registered: Aug 2011
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posted
Thank you so much everyone for all the info. If you would private message me with what I could expect and any positive outcomes it would be great.
Posts: 463 | From Sandusky, Ohio | Registered: Jan 2012
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TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
jif, I don't understand what you are asking. Are you asking about lyme treatment, how it goes?
Or are you asking about spinal taps?
I had undiagnosed lyme disease for 10 years before a doctor finally figured out what I had.
The mainstream medical profession gave me 30 days of doxycycline and told me I was finished with treatment. Ha! They left me in agony and treated me like a mental patient after that inadequate treatment.
Because no one would help me, I had to search out lyme support groups to find the names of doctors who believed in treating lyme until all symptoms were gone.
I had to learn who the good lyme doctors were in my area.
Once I got to a good doctor (my 3rd lyme doctor), I took oral medications for 13 months and then I was cured!
That was 7 years ago and I am still symptom-free, enjoying my life.
Lyme stole 5 years of my life from me. 5 years of going from doctor to doctor trying to figure out what was wrong. Then, the terrible treatment I got once I got my positive lyme test from LabCorp. The spinal tap, neurologist, etc. etc. on and on and on.
It is all because there are 2 camps regarding lyme treatment. One camp insists lyme is easily cured with 30 days of doxy.
The other camp knows that is wrong. These are the lyme doctors. Many of them had lyme themselves, or their children had it.
Can you guess why all lyme patients are on the side of the lyme doctors?
My lyme doctor gave me my life back. My husband says, "He gave me my wife back!"
I will forever be grateful to the wonderful lyme doctor who got me out of the lyme hell-hole. I not only had lyme but also babesiosis and bartonella.
Posts: 9931 | From Maryland | Registered: Dec 2007
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Keebler
Honored Contributor (25K+ posts)
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As for others' PMing you, you may get far more replies with a new thread.
We've all been there.
I know you want positive outcomes but you also need to know what can happen for those with lyme & co. who DON'T get proper treatment or have to muddle through on their own as best they can.
Those who can get to a LL doctor do much better but, still, there is a great deal of personal study and work involved in getting better.
Of course, if finances prevent one from the best path, we all do the best we can.
But, regardless, lyme must never, ever, just be let to its own will. Lyme destroys lives. It does not have to be that way.
I know this is frightening and aggravating. It makes us grow up fast, whatever one's age. But it is possible to find out exactly what is going on, address it and fell better.
It's just not simple, as even if "just lyme" it's never "just" lyme. There are many facets to this. So, hold on for the ride. You can get your life back.
Best of luck. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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posted
Thank you for sharing experiences with your lyme treatment...that's what I was looking for TF. I found an ILADs doctor in Ohio and am set to go Feb. 28th. I'm just wondering what to expect. Thanks.
Posts: 463 | From Sandusky, Ohio | Registered: Jan 2012
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TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
The first appt with a lyme doctor usually is about 1 hour with the doctor. He interviews you about your history of illness and may also examine you for signs of coinfections, etc. You should go with a COMPLETE list of your symptoms since symptoms are very important in making the diagnosis.
If you can summarize when the trouble started until now, that would be great. Diagnoses like CFS, fibro, etc. are generally what lyme patients are given prior to getting to their lyme specialist.
If you have had any treatment for lyme, be sure to take the details about it (meds taken, dosage, how long, any allergies or bad reactions, etc.)
I hope the doctor follows the Burrascano Guidelines. (If you don't know, you can call the office and ask if he does.) If he does, he will likely test your blood through Igenex (if you can afford it) and then put you on high-dose combinations of antibiotics to treat the lyme.
If tests show you have other infections, or if your symptoms sound like coinfections, you will also be treated for them. Some lyme docs just automatically treat for the big 3--lyme, babesiosis, and bartonella--since nearly all lyme patients have all 3.
The best thing you can do is to study the Burrascano Guidelines. Then, you will learn about lyme disease and the coinfections and will understand what good lyme treatment looks like.
Once on meds, keep good notes about how you are feeling. This is important to tell the doctor at the next monthly visit. (You generally will see the doc monthly, especially at first.) It guides his treatment of you.
Here is a quote from Burrascano about this:
"All patients must keep a carefully detailed daily diary of their symptoms to help us document the presence of the classic four week cycle, judge the effects of treatment, and determine treatment endpoint. One must follow such diaries, temperature readings in late afternoon, physical findings, notes from physical therapists, and cognitive testing to best judge when to change or end antibiotics.
Remember- there currently is no test for cure, so this clinical follow-up assumes a major role in Lyme Disease care." (page 17)
Most people just need oral medications to treat lyme. Most of the meds don't cost much, but some meds (like for babesiosis) can be expensive.
If your insurance has a mail order prescription plan, you may want to look into using it to save yourself money.
Let us know how it goes.
I think it is always good for the patient to ask this question of the doctor, "What diseases are these medications treating?"
If you do that each time he changes your meds, you will be able to look up in Burrascano the treatment for each disease and compare what Burrascano says to what your doctor is doing.
Lots of doctors treat lyme disease, but only a few know enough to get rid of it for a person. Your job is to find one of the few.
By comparing your treatment to Burrascano you can often save a lot of time and move on to a better doctor if you see that your doctor's treatment is inadequate.
It is not unusual that the first doctor a person picks is not a top notch lyme doctor. Ask around about whether or not this doctor is getting people well, meaning rid of lyme disease.
You want a doctor who is getting people well.
Posts: 9931 | From Maryland | Registered: Dec 2007
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Keebler
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Have any of you had a spinal tap to diagnose your lyme disease?
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