posted
Hi-3 years sick now, recently much worse again which led me to new neurologist to try to find answers to continuing problems of chronic dizziness, extreme fatigue, visual problems, emotional problems (episodes of uncontrollable crying--still so weird?) pain, etc..
Anyway, new brain MRI still showing the white matter lesions ( which I had in 2006) too. So he wants me to do spinal tap to test for MS & lyme).
Now I know I shouldn't worry too much- even my LLMD says not to do it..it is unneccessary, and I do know about the MS/lyme symptom similarities.. and I do have + lyme tests from 05. But has anyone here ever had continuing symptoms and went ahead with the spinal tap? Lyme can't trigger MS, can it? I do have another autoimmune disease. Any thoughts? Thanks Natalie
Posts: 87 | From Clarksburg, NJ, Monmouth | Registered: Aug 2005
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Last December I had a spinal tap after having numbness symptoms and white matter spots on brain MRI.
The spinal tap came back positive for the "MS markers".
Just 2 seconds before the doc put the needle in my back he said, "you know, whatever the results are, it doesn't confirm either way whether you have MS."
I should have stopped right then and run out the door.
I spent the next 8 days w/ the worse spinal headache!!!! I have never spent so much time lying flat in my life....pretty much 24/7 for 8 days.
I am still paying off hospital bills that my insurance didn't cover.
I had 1 neuro say "probable MS" the other say "MS"...both said lyme is BS.
I had a positive western blot from Igenix.
I have many weird symptoms, above and beyond numbness, including random sadness and crying. Symptoms above and beyond the classic MS ones.
I see a LLMD, and pay completely out of pocket because it's an "alternative, integrativie" practice that insurance companies don't recognize.
I pay $$$ each month for 3 different antibiotics, and other supplements.
From what I've learned (mostly here at lymenet and the legit research cited here), MS or the "scarring" is just one of the many possible symptoms of chronic lyme.
And, the classic markers for MS in the spinal fluid can also be present w/ lyme.
Each and every day that goes by, I have to remind myself that I am doing the right thing following the lyme/antibiotic/etc path, that it's the root cause of everything....trust my gut feeling.
Long story short, the spinal tap did NOTHING to confirm ANYTHING.
If I could go back in time, knowing what I know now, I would NOT have done it! Period!
Traci
Posts: 55 | From North Carolina | Registered: Dec 2007
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adamm
Unregistered
posted
NO NO NO! MS is simply a designation for a symptom cluster that
overlaps with that of Lyme, so a spinal tap couldn't possibly yield
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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lymeinhell
Frequent Contributor (1K+ posts)
Member # 4622
posted
Save yourself the pain. There is no 'test' for MS. It's a rule-out diagnosis. Meaning, lets keep watching you for a few years, see if your lesions move around...
Run from this doctor.
-------------------- Julie _ _ ___ _ _ lymeinhell
Blessed are those who expect nothing, for they shall not be disappointed. Posts: 2258 | From a better place than I was 11 yrs ago | Registered: Sep 2003
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posted
thanks- it's just that this is all coming down just as my LTD company is trying to terminate me..they have stopped paying me due to doing a "review of my claim" and have dangled a settlement offer over my head.So I have to decide if I am going to appeal this and get my SS lawyer involved, which means using the last of my "savings" to pay him,or take the $,which I desperately need. And now I have to wonder if I may have MS too?
Posts: 87 | From Clarksburg, NJ, Monmouth | Registered: Aug 2005
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savebabe
Frequent Contributor (1K+ posts)
Member # 9847
posted
I had two spinal taps and when I finally saw Dr. B he said they are a waste of time in diagnosing lyme disease. He said lyme disease is picked up in the spinal fluid less than 10% of the time.
Although, if you suffer from severe headaches you may want to run the test to measure pressure and other infections.
Either way, do not use that one test to rule out lyme.
Posts: 1603 | From ny | Registered: Aug 2006
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AliG
Frequent Contributor (1K+ posts)
Member # 9734
posted
My LLMD said not to bother. It's a painful risky procedure & it wouldn't change his Tx.
I just finished 3 months of Rocephin & Biaxin with a course of 5 days Flagyl (DCd the Biaxin) during the last 5 days Rocephin. I am now on Bactrim DS & Diflucan.
I am happy to report that my Optic Neuritis & Uhthoff's phenomenon (heat-related symptom flares) seem to have subsided (knock wood).
Uhthoff's phenomenon used to be the test for MS (for 50 yrs) before the newer test methods came out. ON is also an early marker.
If it was MS, it seems to have remitted. I still have some parasthesias in my right hand, but hopefully I can get rid of them too.
Yes, Lyme does cause MS symptoms. Lyme is a disease with a cause, MS is just a group of symptoms. It may be possible that other infections can cause MS. I hear they also suspect that some viruses may be able to cause it.
I didn't get the LP & so far I certainly have no regrets about it. I'd say treat the disease that causes the symptoms.
If it your insurance that wants you to have the LP, it's because they know that the odds of them actually finding Lyme there are pathetic. They can eliminate paying a lot of legitimate claims by making that a requirement.
I believe that CALDA (www.lymedisease.org) has a good letter for insurance appeal on their site.
-------------------- Note: I'm NOT a medical professional. The information I share is from my own personal research and experience. Please do not construe anything I share as medical advice, which should only be obtained from a licensed medical practitioner. Posts: 4881 | From Middlesex County, NJ | Registered: Jul 2006
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troutscout
Frequent Contributor (5K+ posts)
Member # 3121
posted
Blown money....can I have the money?
Kent
-------------------- Now is the time in your life to find the "tiger" within. Let the claws be bared, and Lyme BEWARE!!! www.iowalymedisease.com [/URL] Posts: 5262 | From North East Iowa | Registered: Sep 2002
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lpkayak
Honored Contributor (10K+ posts)
Member # 5230
posted
i'm having a bad day-did not read all posts.
but spinal tap was the worst test i have done in 20 yrs-and it basically said nothing. it was like a cdc neg wb. it meant something to my llmd-but the ins company wouldn't accept it .
for me it was awful pain and no help
-------------------- Lyme? Its complicated. Educate yourself. Posts: 13712 | From new england | Registered: Feb 2004
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
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Q: " . . . should I do the spinal tap?"
A; NO. NO. NO. A lumbar puncture is not a reliable test for lyme. And it's expensive, very painful and can cause severe headaches for weeks.
Q: Lyme can't trigger MS, can it?
A: MS can be lyme. Lyme can cause the white matter lesions, etc. Every symptom of MS can be seen in late stage neurolyme. For many who have had the lyme treated, the false dx of MS seems to melt away.
Also be sure to avoid steroids that may be suggested for "MS" and if you do have lyme, steroids can create a disaster for treatment of lyme.
==============
This search was done some time ago. Number may be different now.
The Patient as Diagnostician: How the Internet Helped an MS Patient Find Her True Diagnosis - by Ginger Savely, FNP-C
How many of you have surfed the Web to look for a diagnosis to fit the symptoms that you or one of your loved ones is experiencing?
As a nurse practitioner I often see patients who, when dissatisfied with a diagnosis (or lack of diagnosis) given to them by a health care provider, look to the Internet to discover what is really wrong with them.
Many of my colleagues scoff at this behavior, saying that the Internet is the worst thing that has ever happened to health care. They are displeased when patients come in with a probable diagnosis already in mind and present a list of tests they are convinced are needed in order to prove or disprove their conclusion.
The concern of many health care providers is that the information on the Internet is unreliable and that it encourages patients to obsess over symptoms and even to imagine new symptoms in order to fit the criteria necessary for a certain diagnosis. ``A little bit of knowledge is a dangerous thing,'' they often say.
Most of the patients I see have been through the mill when it comes to doctors and testing and have lost their faith in the health care system that has failed them. So, it comes as no surprise to me that these patients have learned to take their health care into their own hands, educating themselves to the point of being able to speak ``medicalese'' like a pro.
Time and time again I have observed that this tendency on the part of patients to become medically educated has been to their advantage, and many a life has been saved or bettered through the process. In my opinion this proactive behavior on the part of patients should be encouraged.
Maria: A Case in Point
Maria lives in Austin, Texas and is a petite, 49 year old lady who appears younger than her age. During our first encounter she explained that she was frustrated and unwilling to accept a recent diagnosis of multiple sclerosis (MS).
She had been experiencing recurrent right-sided facial pain (trigeminal neuralgia) for five years which had led her to consult a neurologist. An MRI brain scan had shown white patches indicative of nerve inflammation.
A spinal tap had revealed unusual proteins consistent with an MS diagnosis, and a recent repeat MRI had shown progression of the disease with increased number and size of the inflammatory lesions. Based on her symptoms and these findings, her neurologist had diagnosed her with MS and advised her to begin immunosuppressive therapy in order to decrease inflammation.
Maria had been researching her symptoms on the Internet, and had become convinced that her problem was actually related to advanced neurologic Lyme disease. She had been unable to convince her neurologist that this might be the case. He felt it was a clear-cut case of MS and was not inclined to consider the possibility of an illness that did not appear to be endemic to central Texas.
To placate her he had ordered a Lyme screening test, the ELISA test, which had come back negative. Because Maria was convinced her problem was due to a bacterial infection, she refused to follow the advice of her neurologist to begin immunosuppressive therapy, fearing that this would affect her ability to fight the infection.
Maria came to me because she had heard of my special interest in the diagnosis and treatment of Lyme disease. I reviewed her medical history and made special note of her report of a tick attachment to her right lower leg six years earlier, followed by a 5 inch bullseye-shaped rash. This had occurred while she was camping in a rural area of central Texas.
Symptoms had started soon afterward. Some of these symptoms were typical of both Lyme disease and MS, such as insomnia, anxiety, confusion, dizziness, weakness, numbness, blood pressure fluctuations, constipation, acid reflux, urinary urgency, and exhaustion.
She was also experiencing symptoms that were typical of Lyme disease but not of MS: joint pain, muscle aches, jaw and tooth pain, ringing in the ears, and a stiff neck. Many classic MS symptoms were missing, such as optic nerve inflammation, double vision, abnormal eye movements, spasticity, muscle atrophy and balance problem.
Her in-office physical exam did not reveal any obvious abnormalities.
I was familiar with a study published by the Texas Department of Health in 1994 that had revealed that over 1% of ticks collected in eight Texas state parks had tested positive for borrelia spirochetes, the corkscrew-shaped causative agents of Lyme disease.
In fact, per the International Lyme and Associated Disease Society (ILADS), borrelia-carrying ticks had been found in every state in the union.
The rash Maria had described on her leg certainly sounded like erythema migrans, the classic ``bullseye'' rash that is diagnostic for Lyme disease. Her negative result on the ELISA screening test that had been ordered by her neurologist didn't impress me; ELISA tests for Lyme borreliosis are notoriously insensitive. There is evidence that the ELISA has a sensitivity of only 30-40% and therefore does not meet the 95% sensitivity criteria necessary for a screening test.
The Western blot is a better test to use for screening. Unfortunately most labs do not report the individual reactive bands on the blot but report only a positive or negative end-result based on the presence of bands relevant for epidemiologic rather than diagnostic criteria.
It is of utmost importance to choose a lab that reports ALL of the positive bands. Diagnosis of a sick patient and qualification for epidemiologic inclusion are two different matters! I chose to use the highly reputable IGeneX Laboratories in Palo Alto, California.
Through IGeneX testing the patient was positive for Lyme both by the Western blot IgM and by antigen captured in the urine. The history, symptoms, and now the lab results were pointing to a diagnosis of late-stage neurologic Lyme disease (neuroborreliosis) rather than MS.
After three months of intravenous (IV) and oral antibiotic treatment, Maria reported several subjective improvements. Her overall fatigue, urinary frequency, and discomfort were lessened. The numbness in her hands and feet was gone, as was her subjective sensation of weakness.
Maria continued to tolerate the treatment well. After six months of IV antibiotics a repeat MRI showed a 25% reduction in inflammatory lesions. She reported overall improvement, with continually decreasing fatigue, malaise, weakness, cognitive problems, and muscle pain. She continues to improve on IV antibiotics.
MS is a progressive disease, and although remissions are common, a reduction in brain inflammation is not. This improvement in the patient's MRI was quite a surprise for the neurologist and served to strengthen my belief that the patient's problem all along had been neuroborreliosis rather than MS.
Because of the many similarities in the two diagnoses, it is extremely important to pay attention to the patient's history and development of symptoms and to know how to test correctly for the presence of borrelia antibodies.
MS is a diagnosis based primarily on subjective symptoms, and according to the CDC, Lyme disease is as well. The previously mentioned MRI and spinal tap findings in this patient were not diagnostic of MS per se, since they are often also present in Lyme patients with neurologic involvement.
When clinicians complain about the incorrect medical information patients come across on the Internet or the tendency for patients to self-diagnose based on this information, they need to look at the bigger picture and realize that the occasional enlightening discovery is well worth the inevitable false alarms.
I continue to support patients who research their symptoms on the Web, believing it empowers them to be proactive about their health care. Sometimes, as was the case with Maria, this kind of patient collaboration can prove to be a life-saver.
See also:
Fritzsche, M. Chronic Lyme Borreliosis at the Root of Multiple Sclerosis: Is a Cure with Antibiotics Attainable? Medical Hypotheses 2005; 64 (3): 438-448.
sutherngrl
Frequent Contributor (1K+ posts)
Member # 16270
posted
I too have been concerned about possibly having MS. I used antibiotics for 5 months with no improvements. Now after treating Babesia for 3 weeks I am feeling some slight improvements.
However, if I don't get completely well in a reasonable amount of time, I would consider testing for MS. What if I continue using antibiotics when I actually have MS?
I would think that if you don't improve at all, that something else is going on. If you have seen improvement with antibiotics and other Lyme drugs, then that would be very telling. Also since you tested positive, what makes you think it is MS?
Posts: 4035 | From Mississippi | Registered: Jul 2008
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posted
The spinal tap will most assuredly come back NEGATIVE for Lyme so then you'll have even MORE trouble convincing your LTD Co that you indeed have Lyme. What then??
Savebabe is right on track.... the + rate is between 10 and 20% on Lyme...not good at all!!
MS??? even the spinal tap won't tell you for sure.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
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Topic: White matter lesions resolving! - posted 18 June, 2008
Quick update for any who have white matter lesions (I seeing Flyingmom wrote something about this earlier...)
8 months ago after finally being correctly diagnosed with Lyme, I got IV antibiotics for 6 weeks then orals which continue now.
I had 4 full blown lesions on my brain and cervical MRIs and 10 additional hyperintensities.
As of several days ago, my repeat MRI reveals lesions and hyperintensities either STABLE, RESOLVING OR GONE.
My only remaing symptoms are fleeting minor, humming type twitches and scattered paresthesias on my left side. Very minor.
Still waiting to see if these will go away or if they are permanent damage. I do have MANY completely symptom free days now... Stress or eating poorly really bring the symptoms out...
I wanted to post this good news for all other who have similar issues.
And yes, I was orignally diagnosed with MS, even though I kept saying Lyme and had a PICTURE of the bite.
Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
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Is your LLMD an ILADS member?
I am concerned that you have not received this information from your LLMD (although you did say he suggests you NOT get the lumbar puncture). Hasn't your LLMD told you that lyme can create MS-like symptoms but that with treatment (which sometimes can take years), this has a chance of getting better?
-----
This book, by an ILADS member LLMD, holds great information:
posted
I decided to get a spinal tap to help rule out MS, before I left my state (& all my doctors) to get treated for lyme. Even with a CDC positive test, all my doctors were telling me that it COULDN'T be lyme.
It WASN'T a pleasant experience, even my neuro was appologizing about how bad it was.
The only thing it showed was 1 Oligoclonal band in my CSF. It just means that I am mass producing an antibody in my CSF that I am not producing in my blood stream. The test was "technically" negative (required at least 4 bands)
This could be from lyme, it could be somehow "normal", it could be the start of MS??? They don't do a test to determine what the antibody is for, so it doesn't really tell you that much IMO.
I know what you are feeling about wanting more answers, but honestly I don't think you are going to get any with a spinal tap. You can't be diagnosed (MS) with just a spinal tap..//if your lesions haven't changed any in 3 years, then you are a LONG way from diagnosis...right?
I think my LLMD told me that only 20% with KNOWN neuro-lyme will test positive with a spinal tap. There was a show on TV about a lady with lyme encephalopathy,,,couldn't walk, and was numb from the waist down and she still didn't test positive with a spinal tap.
As far as lyme triggering MS, I am fearful of that,,,especially after reading "Cure Unknown". What other auto-immune disease do you have?
Are you still on antibiotics? Does your LLMD have any answers for your worsening symptoms?
tickled1
Frequent Contributor (1K+ posts)
Member # 14257
posted
Natalie,
I didn't read all the replies but I'll give you my experience w/this.
I got a Lyme dx but had no positive tests so felt the need to get something on paper. I went ahead w/a spinal tap after an MRI showed a lesion on my brain.
The spinal tap results could have been interpreted as MS. It showed (I think) 10 "O" bands and some other cells that showed I had inflammation of my nervous system according to my Neuro.
I was lucky that my Neuro is Lyme friendly as w/those results, most neuros would automatically dx MS. My neuro said she believed my symptoms were due to Lyme even though none of my Lyme tests were positive.
So in a nutshell, the spinal tap didn't change anything. I consider myself lucky that I wasn't dx w/MS b/c my insurance may not have payed for my Lyme treatment and I may have been given steroids for MS which would have been a huge no-no for the Lyme.
What the spinal tap did do for me is reinforce the fact that I knew something was very wrong w/me neurologically and the spinal tap did prove that.
I did suffer terribly though w/the spinal headache for several days afterward. To call it a headache is a huge understatement. There are NO words to describe the pain. And then the blood patch was no picnic either and I have some strange pain in my back still, I believe from either the spinal tap or blood patch or both.
I wish you luck w/whatever you choose but I think that Lyme is the culprit for you since you know you had it in the past.
Posts: 2541 | From Northeast | Registered: Jan 2008
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posted
Hi- I was treated long term abx-IV for 5 months, orals, etc but got yeast so bad I finally stopped. Tried all the alternatives I could afford,etc, then you get to the point where you wonder if drugs are helping you anymore or hurting you? I did go through a period last May-July where I thought I was consistently improving some, but then got worse again( which led me back to new neuro because I just got so bad). I have a great LLMD, but I wonder if she has tried to do all she can and it just won't go away..maybe this is the best it is going to get, but I still have a hard time accepting that. So sometimes I do think about seriously starting up treatment again and doing it long term. I still can't believe I am still sick for so long..it is just so hard to believe that it has gone on for this long.
I have ITP or thrombocytopenia ( no platelets)and I have been on steroids before for it and vowed to never again take that drug- it was so horrible, so if that is the treatment for MS, then I wouldn't do it anyway. So thanks, I don't think I will do the procedure, and will seriously re-think starting tx again for lyme. Natalie
Posts: 87 | From Clarksburg, NJ, Monmouth | Registered: Aug 2005
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posted
You would be better served to test your 25 hydroxy and 1,25 dihydroxy vitamin D levels and gently supplement with D3 if the former is low and the latter in normal range or low.
Altered vit D metabolism is linked to both conditions (MS and Lyme) and supplementation can help with many of the symptoms.
Natalie, if you were getting better from May to July, that suggests (since those are the months when natural vitamin D production is highest) that vitamin D supplementation may be beneficial to you.
Posts: 442 | From Biddeford, ME | Registered: Nov 2007
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posted
Hi Natalie - in your first post you mention that you have another autoimmune disease. What do you mean?
As far as the spinal, I agree with the above - NO!
Been there and done that. Lived with the MS dx for about 12 yrs (and treated for it too). I had the same exp as someone above, after the spinal was told that it was not all that accurate. Well thanks!
I have read a statistic that for lyme the spinal is about 20% accurate. When you test negative for lyme with a spinal, you can be sure that your insurance co will use that bit of info against you.
Don't put yourself through it, waste of your time and $$$ not to mention pain.
The test which I found most helpful in documenting my symptoms was the spect scan, had it done at Columbia. Did not change tx, but was proof to us that we were on the right track.
Good luck to you.
-------------------- This is NOT medical advice - and should NOT be used to replace your MD's advice. Info is only the opinion of those who publish the site.
The shortest way to do many things is to do only one thing at a time.
cb Posts: 669 | From somewherebetweentherocks | Registered: Mar 2008
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I was researching possible causes of thrombocytopenia for someone and Ehrlichiosis came up. I don't know if it will make any difference in your treatment options but thought I'd put it out there.
Posts: 984 | From San Diego | Registered: Nov 2006
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posted
Thanks, and Parisa, thanks for the note on erlichiosis,,,I was tested for that co-infection but negative..funny thing, my autoimmune/platelet thing started all with the lyme.. And I have noticed when I feel really lyme-crappy ( like the last 2 weeks or so again) my platelets go real low- right now they are at 10k, so I know there is some sort of link here. thx again all, Natalie
Posts: 87 | From Clarksburg, NJ, Monmouth | Registered: Aug 2005
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posted
Sounds like antibodies are cross reacting and chewing up your platelets...
Posts: 442 | From Biddeford, ME | Registered: Nov 2007
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