posted
My wife has been sick for over 6 years now...almost all of the symptons on the Lyme Disease symptom list are found in her. She has been diagnosed with Fibromyalgia and is in the middle of an MS diagnosis. We have had 4 MRIs all not showing any signs of MS. We just had a spinal tap done today. While researching her symptoms I found this site and another that list 99% of her symptoms. Even though blood work showed a neg for Lyme I encouraged the doc to look for it in the spinal fluid. If it comes back positive I will let you know.
I just wanted to say "thanks" for the site and the information!!
Posts: 82 | From Summerville, SC | Registered: Sep 2005
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posted
Don't pin all your hopes on a spinal tap. They are low yield, and do not often find lyme even when it is there. You might do a search for this issue, it gets discussed quite a bit here. Testing for lyme and co-infections in general is just not good enough.
SC has a support group. Suggest you contact them for state specific info. and an idea of where to go next.
Posts: 8430 | From Not available | Registered: Oct 2000
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posted
I believe the statistic I read was that spinal taps are 20% accurate for finding Lyme. Do let us know if it comes up positive....we'll consider that a miracle!!
posted
I had read about the western blot but I guess I did not read it well enough. I thought the spinal tap was more sensitive. Thanks for the advice and the links. I will keep investigating.
Posts: 82 | From Summerville, SC | Registered: Sep 2005
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janet thomas
Frequent Contributor (1K+ posts)
Member # 7122
posted
Probably the best available test is the Lyme Western Blot from Igenex
If you phone them they will send a collection kit, no charge.
You may also consider testing for the co-infections, Babesia, Ehrlichia and Bartonella.
It's hard to convince non-lyme docs of the widespread presence of Lyme. Try going to www.canlyme.com and click on symptoms.
Print out the list and tally up your wife's symptoms. Maybe the doc will consider it.
-------------------- I am not a doctor and this is not medical advice but only my personal experience and opinion. Posts: 2001 | From NJ | Registered: Mar 2005
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posted
So can my doc order a western blot or do I need to send away for the kit?
Posts: 82 | From Summerville, SC | Registered: Sep 2005
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lightfoot
Frequent Contributor (5K+ posts)
Member # 2536
posted
The others have said it all. I would order the kit and have it close at hand when you go to the doc...otherwise, he'll have to order it...it has to be ordered either way.
Mise well save the time and be prepared...we have to be our own advocates with this disease.
Healing smiles....lightfoot....
-------------------- Healing Smiles.....lightfoot Posts: 7228 | From CO | Registered: May 2002
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Mathias
Frequent Contributor (1K+ posts)
Member # 5298
posted
Have the tap fluid checked for co-infections like bartonella and mycoplasma. You don't want to have to have another one of those.
-------------------- Mathias Posts: 1242 | From New Jersey | Registered: Feb 2004
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posted
Just have a minute, but wanted to add a few comments.
IF you & your wife decide to go ahead with the spinal tap, I recommend that you try to get your dr to use either - IGeneX www.igenex.com or Medical Diagnostic Labs www.mdlab.com
They specialize in testing for Tick-Borne Diseases (Lyme and Co-Infections like Babesiosis, Ehrlichiosis, Bartonella). This will increase the chance of accurate test results, though there is no guarantee the results are accurate.
Also, the tests for co-infections are not any more reliable than Lyme tests.
Keep in mind that "NO test should be used to rule out Lyme disease" or co-infections.
Go to www.ilads.org Excellent website by International Lyme & Associated Diseases Society (ILADS) Click Basic Info on the left. Print pages 1 & 2 and share a copy with your dr if you think he'll be interested.
# 5 - 8 discuss problems with testing, but do not address the reliability or unreliablity of spinal taps.
I believe I've heard others say that the "opening pressure" should be measured with the spinal tap. I hope someone who knows will comment on this.
Will be glad to help you in any way possible. Just e-mail me.
Posts: 4638 | From South Carolina | Registered: Mar 2001
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posted
cgooge....a member here named "pab" has two sons with severe headaches. They often have to have spinal taps to relieve the pressure.
I would suggest going over to Medical Questions and ask about "opening pressure" or something to do with spinal taps.....OR just post and ask for "pab" to respond.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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WildCondor
Unregistered
posted
Spinal taps are not very accurate for diagnosing Lyme disease. They only pick it up in less than 20% of cases. If the test comes back negative, that does not mean she doesnt have Lyme. I think you would be better off getting a full checkup at an office visit with a Lyme doctor, and appropriate bloodwork from a Lyme lab. I am happy to help you if you ahve any questions.
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posted
Sorry for the mistake. It's been a very busy, very hectic week & now I have children & grandchildren visiting for most of the weekend.
I read your info so quickly that I overlooked the fact the spinal tap had been done. I was just concerned about making sure you had certain facts about how to evaluate the situation.
In my opinion, one of the most important facts is that Lyme is a clinical diagnosis & NO TEST should be used to rule out Lyme disease.
If a person has had Lyme for an extended time, odds are the test will be negative.
The spirochetes do not stay in the blood. It takes a relatively short time for them to invade the central nervous system, muscles, eyes, lining of the joints, and most any organ of the body. They also can evade the immune system so antibodies are not present in large numbers, thus giving a negative test result.
There's no way to ever know how many people have been misdiagnosed because a lab test was negative. In too many cases, the misdiagnosis is a disease or syndrome that has no treatment, so the error is really a death sentence.
My father was misdiagnosed with Alzheimer's. His diagnosis of Lyme came too late & he died of complications of Lyme disease.
When I asked a Columbia dr about Lyme disease in 1991, he said: "We don't waste our time studying an illness that we only see one bizarre case in a lifetime."
That was 14 years ago, & I haven't seen any improvement in the situation since then.
Please don't be misled by the Lyme statistics for South Carolina. Tick-Borne Diseases are definitely here & the problem is NOT being addressed by the medical community, Medical University of SC and DHEC (health dept).
A LLMD who is treating hundreds of Lyme patients from South Carolina said that Lyme disease is reaching epidemic proportions in the Carolinas.
My recommendation is that your wife be evaluated by a LLMD (Lyme Literate Med Dr) - ASAP.
My concern is that she receive an accurate diagnosis and if it's Lyme, that she receive adequate antibiotic treatment.
Keep in touch. We care.
Posts: 4638 | From South Carolina | Registered: Mar 2001
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Michelle M
Frequent Contributor (1K+ posts)
Member # 7200
posted
Hello and welcome to LymeNet. So glad you have found us and so glad you are such an advocate for your wife's health!
I, too, had a spinal tap at neuro's request to rule out MS because of numerous brain lesions. I KNEW I probably had Lyme due to tick bites. MRI report even said, "Lesions most consistent with Lyme disease." However, neuro did not believe in Lyme disease; pressured me into a spinal tap. My evoked potentials were abnormal too, so I let him do it -- mainly to ease my own mind that I did not have MS.
I made him give me a vial of cerebrospinal fluid to mail off to IGeneX on my own and sure enough -- it was negative. However -- and let this be a lesson -- do not let this stop you. The bacteria is not often found here.
My opening pressure was high, and my protein was high - plus a couple other odd readings - otherwise an OK tap.
When I had my blood tested at IGeneX -- the tests Janet suggests above -- I had many double and triple positive bands and a CDC positive western blot, leaving little doubt that it was Lyme -- notwithstanding a negative cerebrospinal fluid panel.
So do NOT put much faith in the spinal tap as a diagnostic tool for Lyme. It certainly IS a great diagnostic tool for MS so I'm not sorry I had it, but don't let your neurologist convince you a negative Lyme "titer" from his box of tests he did during the tap means squat -- it doesn't!
Hope your wife's recovery begins soon!
Michelle
Posts: 3193 | From Northern California | Registered: Apr 2005
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dmc
Frequent Contributor (1K+ posts)
Member # 5102
posted
Spinal taps DO NOT rule out lyme or diagnose MS. MS is a disease named for a symptom. I was DXd MS in 1988.
You DO NOT want your wife to get a MS label. Will never be able to get it off of records no matter how much your tests after prove caused by lyme. Can mess a lot more than your health getting that label.
This is great info from: http://cassia.org/essay.htm Many patients are told that they have Multiple Sclerosis (MS) because of brain MRI findings or a spinal tap was positive for oligoclonal bands (OCB) or myelin basic protein (MBP). The medical literature is quite emphatic that MRI does not reliably distinguish between MS an LD because there is too much overlap in their supposedly distinct appearance and location of plaques.
Plaques have been detected with both disorders in the brain and spinal cord. OCB's and MBP are non-specific markers for demyelination (loss of sheath around nerves) and do not signify a cause of the demyelination.
In Miklossy's study above, senile plaques stained avidly for Bb spirochetes. Vincent Marshall reviewed the MD literature in Medical Hypothesis (Vol 25: 89-92, 1988) and advances the notion that LD is causing MS! His survey revealed that multiple studies prior to 1951 were able to demonstrate spirochetes in the spinal fluid of MS patients (by inoculation into animals and on silver stain of CNS tissues).
Dr. Coyle has documented the presence of antibodies to Bb in MS patients (Neurology Vol. 39:760-763, 1989). The encephalopathy attributed to MS is very reminiscent of LD. Both MS and LD are associated with sinusitis (Lancet, 1986). Dr. Leigner has reported a case of LD which fulfilled all criteria for MS.
The epidemiology of MS and the geographic distribution parallels that of LD. The symptoms of both LD and MS can be aggravated if the patient takes a hot bath. Anecdotally, patients with LD, who previously had been identified as MS, responded to antibiotic therapy.
Posts: 2675 | From ct, usa | Registered: Jan 2004
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She has been sick for about 6 years now...got that way after one of her many trips to the wooded areas of New York where her family is from. We do not remember a rash or bullseye and I know that many Lyme patients do not remember a tick bite.
She has been diagnosed with Fibromyalgia, Chronic Fatigue, and a couple others. If the spinal tap comes back neg for MS then I really am going to pursuit this. I already ordered the blood kit recommended.
Do you know if Lyme can be treated by her Rheumatologist? He is great and would do anything in the world for us.
All MRIs are showing no lesions so far...brain, cervical, lumbar all show nothing. I need to look up whether Lyme always shows lesions or not.
Posts: 82 | From Summerville, SC | Registered: Sep 2005
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posted
Not sure you can say lyme always does anything. There is a heck of a lot of variability. My MRI showed nothing but sinusitus. However, EEG and SPECT scan were abnormal. Some people with lyme show brain lesions, some do not.
As for as your rheumatologist is concerned, getting adequate and correct treatment from someone unfamiliar with lyme is very iffy. Should you want to try and have a positive test result, could print out Dr. B's treatment guidelines (long) from the newby links, and present them. I say positive test because very few docs without previous experience will want to treat based only on clinical diagnosis. But you can try anyway. Best to have a plan b too.
Keep in mind that co-infections may also be involved.
Posts: 8430 | From Not available | Registered: Oct 2000
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posted
You're blessed that you have a Rheumatologist who is willing to work with you. Given the lack of experience in treating Lyme disease in South Carolina, I'd recommend having 2 drs work together.
If I were in your place, I'd want an evaluation by a LLMD who treats Tick-Borne Diseases almost exclusively. There are so many complications & variables with these diseases!! You need someone who has seen hundreds, or thousands, of cases.
Generally, LLMDs want to work with your local dr so that you have someone to keep close check on the situation (appts to check patient, bloodwork, etc).
This is a win-win situation. The patient doesn't have to travel to the LLMD as often, the local dr has the opportunity to work with one of the experts in this field, future Lyme patients in your area have a better chance of getting proper care.
Getting the diagnosis is the first hurdle. The next is getting adequate antibiotics - both strong enough & long enough.
Without adequate treatment, symptoms will recur & get more serious as time goes by.
Is your wife able to travel?
Go to Seeking a Dr here on LymeNet. Put your location in the title. In your post, give some idea of how far she's able to travel. Info about LLMDs will be e-mailed to you.
The closest LLMDs that I am aware of are in the following locations: Dr J in NC 1 in Mobile, AL possibly a new 1 in Birmingham, AL, 1 in Springfield, MO, several in PA more in the northeast.
Recommended reading for your dr - Dr B's "Diag Hints & Treatment Guidelines..." (about 32 pages long) like a Readers' Digest version of textbook for Lyme & other Tick-Borne Diseases. Written for drs to use & patients to learn. Excellent source of info!! www.ilads.org/burrascano_1102.html
"Basic Info" (pages 1 & 2)- very important facts! www.ilads.org
Book: "Everything You Need To Know About Lyme Disease" by Karen Vanderhoof-Forschner At left, go to amazon.com
Posts: 4638 | From South Carolina | Registered: Mar 2001
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posted
I read up on Dr. J in NC last night. Seems to be a good place to go. I would probably pair him with my wife's Rhumy close to home. I'd be able to get her to NC...she would be in pain but she could do it.
Thanks again for all of your help. Hopefuly by Wednesday we will have the spinal tap results.
Posts: 82 | From Summerville, SC | Registered: Sep 2005
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JillF
Frequent Contributor (1K+ posts)
Member # 5553
posted
I was diagnosed with Fibro and eventually diagnosed myself with Lyme and found my LLMD through ppl @ Lymenet
I still have yet to test positive on any tests, including Igenex
You do realize that the CDC states that Lyme disease is a CLINICAL diagnosis? All tests available are unaccurate.
My husband probably contacted Lyme from me. He tested positive on his first test. I STILL haven't tested positive even though I have 30+ more symptoms than him and am much worse off than he is.
Posts: 1485 | From USA | Registered: Apr 2004
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Michelle M
Frequent Contributor (1K+ posts)
Member # 7200
posted
quote:Originally posted by dmc: Spinal taps DO NOT rule out lyme or diagnose MS. MS is a disease named for a symptom.
DMC, you are absolutely right; I did not mean to imply it would positively diagnose MS, for which -- like Lyme -- there is no "test." I agreed to the spinal tap mainly to prove to myself that I didn't have MS, since I was 99% sure I had Lyme disease but felt I would be even surer with a non-MS'y looking tap. (Even though I know oligoclonal bands CAN appear with Lyme.)
The radiologist felt my lesions were Lyme; thought they were too large for typical migraine-type lesions (up to 5 mm) and thought they were not in right location for MS (mainly in frontal lobe).
Also, it is rare to present as an MS patient with a chief complaint of 24/7 migraines.
However, absent cortical responses bilaterally in my SSEP's kind of made me nervous and made me feel I should submit to anything which would clarify my diagnosis before rushing off to IGeneX with my vial of blood.
CGooge, Lyme does not always show lesions. As others have suggested, SPECT scanning may show impaired perfusion. Your rheumatologist will be unlikely to know enough or be up to date enough to help much and may suggest such a short course of antibiotics as to shock you after reading this Board for just a short while. Best to find a pro -- you've come this far.
Good luck and let us know!
Michelle
Posts: 3193 | From Northern California | Registered: Apr 2005
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posted
Concerning Dr J in NC - They are not taking new patients at this time, but they will when they move into their new office (in the next month or so).
Call today & talk with them. They may have a list of new patients to contact or a cancellation list that may get your wife in sooner. I don't recommend waiting until they are seeing new patients. That could delay your wife's appt by several months.
Just keep in mind that there is no test that should be used to rule out Lyme disease.
If they diagnose MS, I don't know what treatment would be used, but it is extremely important NOT to take steroids if there is ANY possibility that a person has Lyme.
Posts: 4638 | From South Carolina | Registered: Mar 2001
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