posted
As some of you have seen I had a sudden onset of MS/lyme symptoms practically over night. Numbess in extremities, fatigue, stiff neck, and the main symptom being this intense "drunk," "drugged" or disconnected feeling which is constant 24/7. I've had two negative tests and one test positive only IgM. My LLMD, Dr. Sc (PA), suggested a lumbar puncture telling me it is actually a very accurate way to test if it is lyme and in fact effecting my central nervous system. Why is there so much negative talk about spinal taps on this site?
Posts: 306 | From NY | Registered: Sep 2010
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Keebler
Honored Contributor (25K+ posts)
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posted
- Your "LLMD" is NOT a LLMD if he is saying it's an accurate way to test for lyme.
You need a better doctor.
You had positive IgM Western Blot bands 41 and 23. You have symptoms. You do not need a lumbar puncture to test for lyme. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
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posted
- A LP (lumbar puncture/spinal tap) is such a poor test for lyme.
It's like fishing. If you catch a fish in a lake, you know the lake has fish. But if you don't catch a fish, you can't say there are no fish in the lake. You just didn't catch one.
Spirochetes do not just all swim around the spine waiting to be sucked up into a needle. While, once in a blue moon, the needle may withdraw CNS (cerebral spinal fluid) that might contain some evidence of a spirochete, in general, spirochetes hate vibration, light, motion, etc. They will spring away from the action.
While some have no problems, for many, a LP can be very painful and you could have a tremendous migraine for weeks afterward needed someone to care for you, at least for many tasks.
And, they are expensive. Even if you do not pay out of pocket, someone is making a huge sum of money from a test that does not even work to dx lyme. It's a waste of money unless in a life-threatening emergency and they are looking for other reasons. To assess lyme, it's a wasteful exercise in futility.
However, the doctors know this but will use the predictably negative test to DENY TREATMENT.
AND - even if they found lyme the neuro will go by IDSA standards for treatment and you'd get 9 days' worth or 3-4 weeks max of one medicine alone.
Not enough. Go only to doctors who are truly educated about lyme and all tick-borne infections - and how they impact a person at various points in time after transmission.
. . . Lumbar puncture has also been disappointing as a diagnostic test to rule out concomitant central nervous system infection.
In Lyme disease, evaluation of cerebrospinal fluid is unreliable for a diagnosis of encephalopathy and neuropathy because of poor sensitivity.
For example, pleocytosis was present in only one of 27 patients (sensitivity 3%) and with only seven cells.
The antibody index was positive (>1) in only one of 27 patients (sensitivity 3%). An index is the ratio between Lyme ELISA antibodies in the spinal fluid and Lyme ELISA antibodies in the serum.
The proposed index of 1.3 would be expected to have even worse sensitivity. . . .
posted
I had a positive IgM test 9/1/10 and was treated with 4 weeks of doxycycline which has done nothing
Posts: 306 | From NY | Registered: Sep 2010
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Keebler
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posted
- Four weeks WILL do nothing, usually. Thirty weeks of combination treatment is what many LLMDs would consider, according to the "CONTROVERSY" article in a set of links at another of your threads.
Were you assessed for coinfections?
Did you also take liver support during doxy? Probiotics? -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
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As two medical societies battle over its diagnosis and treatment, Lyme disease remains a frequently missed illness. Here is how to spot and treat it.
Excerpts:
** " . . .To treat Lyme disease for a comparable number of life cycles, treatment would need to last 30 weeks. . . ." **
`` . . .Patients with Lyme disease almost always have negative results on standard blood screening tests and have no remarkable findings on physical exam, so they are frequently referred to mental-health professionals for evaluation.
". . . If all cases were detected and treated in the early stages of Lyme disease, the debate over the diagnosis and treatment of late-stage disease would not be an issue, and devastating rheumatologic, neurologic, and cardiac complications could be avoided..."
. . . * Clinicians do not realize that the CDC has gone on record as saying the commercial Lyme tests are designed for epidemiologic rather than diagnostic purposes, and a diagnosis should be based on clinical presentation rather than serologic results.
- FULL ARTICLE AT LINK ABOVE. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
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posted
- Dr C's Western Blot explanation is discussed here:
Advanced Topics in Lyme Disease (Diagnostic Hints and Treatment Guidelines for Lyme and Other Tick Borne Illnesses
Dr. Burrascano's Treatment Guidelines (2008) - 37 pages
===============================
In addition to the usual coinfections from ticks (such as babesia, bartonella, ehrlichia, RMSF, etc.), there are some other chronic stealth infections that an excellent LLMD should know about:
i was sent down that very same road....proved nothing...and man did i have a headache for 4 days. Test mean nothing....i tested negative 10 times including the lumbar puncture.
i have an excellnet LLMD in NJ. i will Pm you.
Dave
-------------------- On my journey to wellness - One day at a time. Posts: 989 | From NJ | Registered: Sep 2008
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posted
That's crazy! It has a 20% chance of finding Lyme. If it comes back negative then insurance will fight you tooth and nail for Lyme treatment.
Find a good LLMD (I know you're trying to find one!! .. someone help him out, please!) who will test you for all coinfections. You're bound to have at least one.
posted
I had one done at the Mayo Clinic back in 1986. They didn't find anything. They were looking for viral meningitis though.
Kathy
-------------------- You never know how strong you are until being strong is the only choice you have. Posts: 807 | From South Dakota | Registered: Jul 2005
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TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
From page 8 of Burrascano Lyme Treatment Guidelines:
"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!"
What the good doctor is saying here is that lyme antibodies are rarely found in spinal fluid. The test the doctor wants to order looks for antibodies to lyme in your spinal fluid--not for the lyme germ itself.
Even if you had spinal meningitis from lyme disease, Burrascano is saying that the spinal tap will find antibodies to lyme disease in less than 13% of all patients.
That is way way below a 50-50 chance. AND, you don't have spinal meningitis symptoms, so your chances of them finding lyme antibodies in your spinal fluid are practically zero.
Before I learned about lyme, I had the spinal tap. Mind you, I already had a positive lyme test.
I watched them drain that fluid out of my spine. It is not pleasant (scary and painful), takes all day, and can certainly have complications which can send you back to the hospital (for what they call a "blood patch" if your spinal fluid continues to leak out of the hole they made) in addition to the headache from hell.
You will spend all day getting this procedure done and will need someone to drive you home. Be sure you lay flat in the drive home and continually after the tap to try to prevent all these problems.
My spinal tap was negative. So, the neurologist who ordered it yelled at me that I did NOT have lyme in my brain. And, based on this test, he refused to treat me for any disease at all. I even had the brain scan he ordered and it showed 2 areas of hypoperfusion and the report said "lyme disease cannot be ruled out."
You need to get away from the doc who is wanting to do the spinal tap and get to a doctor who understands the ins and outs of lyme disease. This guy doesn't have a clue!
Posts: 9931 | From Maryland | Registered: Dec 2007
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posted
dont do it.....i went down that road.....i had positive western blot and babesia.....neg spinal tap.......and insurance and everyone has used that against me as "proof"...that i dont have lyme.......they know there is only a slight chance it will be positive.......so its ammunition against your true diagnosis.........
-------------------- Oct 09 Positive CDC Western Blot Jan 10 Positive Babesia Duncani Jan 10 Cd57 28 Mar 10 EBV, IgM, IgG HHV-6 IgG Posts: 739 | From NC | Registered: Oct 2009
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posted
Spinal taps are not accurate for lyme. I had acute lyme meningitis with brain lesions on MRI and my spinal tap was ok except mild elevation of protein. Dont waste your time or $.
Posts: 747 | From Utah | Registered: Apr 2010
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posted
nybasketball212, For what it's worth...I had a LP in Feb. Before the test, my IFD Doc had a plan for IV antibiotics. AFTER the LP, she changed her mind and told me to come back and see her when I was well! What kind of sense does THAT make? I tested postitive with the infection in my brain. She was going by IDSA guidelines and did not want the liability. My body postion for the LP was totally different than anything I've researched. I had no clue when it was even started. My problem was, they didn't have me lay flat for 1-2 hours after, which supposedly causes the VIOLENT headaches. Don't know if it is worth finding out this way!
Posts: 5 | From Deep River, Ct. 06417 | Registered: Jan 2010
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quote:Originally posted by catlick: nybasketball212, For what it's worth...I had a LP in Feb. Before the test, my IFD Doc had a plan for IV antibiotics. AFTER the LP, she changed her mind ---
--exactly--
Don't know if it is worth finding out this way!
--And they most likely will find NOTHING.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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bcb1200
Frequent Contributor (1K+ posts)
Member # 25745
posted
NY...don't get the spinal. Find a better LLMD. Spinals are useless and they will hold it against you if it turns up negative, which it is likely to do.
Read Burrascano's guide and find a doctor like Dr. B.
-------------------- Bite date ? 2/10 symptoms began 5/10 dx'd, after 3 months numerous test and doctors
IgM Igenex +/CDC + + 23/25, 30, 31, 34, 41, 83/93
Currently on:
Currently at around 95% +/- most days. Posts: 3134 | From Massachusetts | Registered: May 2010
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posted
I am getting a lumbar puncture already to help rule out MS (my mother has MS), so would a negative result from a lumbar puncture still be held against me if a positive Igenex test came after?
Posts: 306 | From NY | Registered: Sep 2010
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Everyone convinced me to do it (Parents, teachers and etc) I ended up getting ANOTHER ONE a week after (LongSTory). But that one went completly horrible.
They can tell if you have MS from a MRI. You have a postive lyme test. You dont need a lumbar. Its a waste of money.. Lyme MImics MS. Everyone was SURE I had MS, but it is just lyme!
Even though I had a POSITIVE ELISA AND WESTERN BLOT THREW QUEST, i still went with 2 spinal Taps and a blood patch.... only to find out that my Lyme Spinal tap was negative... and now in $5000 in debt.
Please dont do what I did. its a 20% of finding lyme in your spinal fluid. I know i am only 20, but I dont want you to do the same thing I did.
If you DONT get treatment... you'll end up with Lyme induced MS (Which is what I almost ended up with
Keebler and TONS of people on here warned me, I wish I had listen. But its your choice. Just hope you have insurance to cover it....
Oh, and I had 2 weeks worth of headaches because i had spinal fluid leaking out of my back.
Long term antibiotic treatment is a pain, but it saved my life. My kidneys are normal function again and my heart is almost normal again. I can exercise more with out so much pain, because I STARTED treatment.
Best Wishes Dear!
-------------------- Stephanie, University Student.
Ehrlichia [POSITIVE] IGG/IGM AB [H] 1.49 indexLyme AB interp. EIA [A] POSITIVE IGG P93 AB [PRESENT] IGG P41 AB [PRESENT] IGM P41 AB [PRESENT] IGM P23 AB [PRESENT] Lyme IGM WB interp. [A] [PRESENT] Posts: 145 | From Idaho | Registered: Feb 2010
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posted
5% of MS patients have normal MRI's which is why it is important for me to rule it out given my family history. I too am a University student, or was before I had to withdraw to this intense "drugged," "drunk," "woozy," disconnected feeling that basically occured over night. I am currently only on 100 mg of Doxycycline because insurance will not cover lyme treatment for me given I had a complete negative test, followed by IgM+/IgG-, and another completely negative test.
Posts: 306 | From NY | Registered: Sep 2010
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posted
My PA wanted me to have a lumbar punch to check for MS, went to the Neuro and he didnt think I had MS even with lesions on MRI. So he went ahead and did the 'fancy' lumbar punch against his better judgement, he did it just to statisfy me.
It was hell, I had LP migraine for 9 days and had to lay completely flat, I will never wish this on my worst enemy. IMHO, if you have a decent neuro then he should see enough MS patients to know the diff even if Lyme mimics it.
He also said it was not an accurate way to test for Lyme even though he admitted to knowing nothing about it.
Posts: 83 | From NC | Registered: Jun 2010
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posted
I am getting a Lumbar Puncture to rule out MS because of the family history. My question is could it hurt to test for Lyme as well? I feel as if it's worth a shot if I'm already getting the lumbar puncture unless insurance will hold this against me forever. Thank you all for your help
Posts: 306 | From NY | Registered: Sep 2010
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Yeah, I MS and Lupus run in my family. (Lucky me). Yeah for me I was in Russia when I got sick. I was there for a school program and all of sudden my balance was off, woozy, tired, and the worst case of flu I have ever had. I have all the MS symptoms. My aunt had normal MRI's, but she tested postive for MS through spinal fluid.
What university were you going to? I was at BYU.
If you go through with it, just let me know the results! i would love to get to know you since there are not many of us on here who are younger in age! lol
oh, and ask for copies of ALL your labs and put them in a binder!
WHen is the spinal?!
My first one wasn;t bad at all, it was the second one a week later went complelty wrong (Because my hole was still inflammed lol)
Oh and what were you studying?
Yeah, I am kinda glad i got sick. If i hadn't I wouldn't be going to Paul Mitchell Hair Academy!
-------------------- Stephanie, University Student.
Ehrlichia [POSITIVE] IGG/IGM AB [H] 1.49 indexLyme AB interp. EIA [A] POSITIVE IGG P93 AB [PRESENT] IGG P41 AB [PRESENT] IGM P41 AB [PRESENT] IGM P23 AB [PRESENT] Lyme IGM WB interp. [A] [PRESENT] Posts: 145 | From Idaho | Registered: Feb 2010
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posted
Im so confused.I am going for spinal tap Monday.My dr. said to rule out M.S.Before they treat me for this.I tested positive for Lymes.Had babesiosis.2years ago.My DR. didnt say it was to look for antibodies but to rule out M.S......Nervous dont like needles to begin with!!!!
Posts: 72 | From illinois/wisconsin | Registered: Sep 2010
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posted
jac123, you tested positive for Lyme and had babesia 2 years ago.
You need to see a LLMD asap.
I am not a doc but I sure as heck wouldn't subject myself or my kids to a spinal tap knowing that.
-------------------- You gain strength, courage, and confidence by every experience in which you really stop to look fear in the face. You are able to say to yourself, 'I lived through this horror. I can take the next thing that comes along.'
---Eleanor Roosevelt Posts: 748 | From somewhere | Registered: May 2010
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Rumigirl
Frequent Contributor (1K+ posts)
Member # 15091
posted
NYbasketball,
For heaven's sake, MS is usually Lyme that isn't recognized!!! (And other co-infections from ticks, etc.). So why the heck are you hell bent on getting this test?
As people have stated, insurance CAN hold it against you when you test negative for Lyme in the CSF. And clearly from your test results and symptoms you have Lyme.
So, please get a REAL LLMD, and the dr you saw is not one. Go to Seeking a Doctor section on Lymenet for help. And really research it. It's a very big, important decision.
And the drunk feeling is an extremely common symptom of Lyme and the co-infections. Many, if not most of us, know the feeling very well. And antibiotics can get rid of it with the right treatment.
I think that you have been conditioned to think that MS is MS, due to your mother's illness. But it isn't so. Find out for
yourself! At least you haven't been ill for long with this. Plus you are young. Both things are hugely in your favor. But don't delay in getting the proper treatment!
Posts: 3771 | From around | Registered: Mar 2008
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posted
Ditto what Rumigirl says to NYbasketball and FYI jac123.
Go to a LLMD.
-------------------- You gain strength, courage, and confidence by every experience in which you really stop to look fear in the face. You are able to say to yourself, 'I lived through this horror. I can take the next thing that comes along.'
---Eleanor Roosevelt Posts: 748 | From somewhere | Registered: May 2010
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- MANY who had been diagnosed with "MS" found that LYME is the CAUSE of it. When lyme has been treated and coinfections addressed - and good support measures employed - the "MS" disappeared in many cases.
WIth MS, treatment is often steroids. Steroids can make lyme MUCH worse, to the point of no return.
Cpn is another cause of "MS" - that link has been posted for you in a couple places, inside of TIMACA's thread about all the other stealth infections that should be considered.
Yes, is the answer....and/or active viruses could also be to blame and many times both. If you have any corticosteroids, (cortisone shots, pills etc. these can "re-activate" dormant viruses found in all of us).
Since Lyme and viral co-infections go together in many cases, the viral issue cannot be ignored anymore than Lyme Disease, all need treatment. . . .
. . . MS links of interest:
* Woman tells story of being misdiagnosed w/MS on youtube:
MS misdiagnosis happens more often than I'd like to think. The similarities in MS and LD are remarkably the same, here is one of many stories: http://tinyurl.com/39ltql
The Patient as Diagnostician: How the Internet Helped an MS Patient Find Her True Diagnosis -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- You also need to avoid even a trace of Aspartame & MSG. Google for all the names they hide under. Check all your foods, even cough drops, gum, etc.
Aspartame can cause MS symptoms. For those with lyme, Aspartame is to be totally avoided, as are MSG - and alcohol.
Aspartame toxicity is not so much due to the liver, exactly, as it has such immediate reaction that the liver barely has a chance to deal with it. It is very excitatory and neurotoxic - to the BRAIN. Even a trace - even in gum. Nearly instantly and then the cascade reaction goes on.
Even a trace can kill brain cells. Anxiety can reach new heights. Depression new lows. With even a trace. It should be avoided at all costs. Totally.
=============
This is just a start to the research about the neuro-toxic effects of aspartame. -------------------------
Excitotoxins - The Taste That Kills - by M.D. Russell L. Blaylock
This is the 1997 edition
No customer reviews at this link but you can look inside the book and read (59 customer reviews) at the link for the 1996 edition of that book - http://tinyurl.com/as6je7
The customer reviews, in themselves, are an education.
Relief of fibromyalgia symptoms following discontinuation of dietary excitotoxins.
Ann Pharmacother. 2001 Jun;35(6):702-6. PMID: 11408989 [PubMed - indexed for MEDLINE]
CONCLUSIONS: The elimination of MSG and other excitotoxins from the diets of patients with fibromyalgia offers a benign treatment option that has the potential for dramatic results in a subset of patients.
Eur J Clin Nutr. 2007 Aug 8; [Epub ahead of print] Links
Direct and indirect cellular effects of aspartame on the brain.
Humphries P, Pretorius E, Naud� H.
[1] 1Department of Anatomy, University of Pretoria, Pretoria, Gauteng, South Africa
[2] 2Department of Anatomy, University of the Limpopo, South Africa.
The use of the artificial sweetener, aspartame, has long been contemplated and studied by various researchers, and people are concerned about its negative effects. Aspartame is composed of phenylalanine (50%), aspartic acid (40%) and methanol (10%).
Phenylalanine plays an important role in neurotransmitter regulation, whereas aspartic acid is also thought to play a role as an excitatory neurotransmitter in the central nervous system.
Glutamate, asparagines and glutamine are formed from their precursor, aspartic acid. Methanol, which forms 10% of the broken down product, is converted in the body to formate, which can either be excreted or can give rise to formaldehyde, diketopiperazine (a carcinogen) and a number of other highly toxic derivatives.
Previously, it has been reported that consumption of aspartame could cause neurological and behavioural disturbances in sensitive individuals.
Headaches, insomnia and seizures are also some of the neurological effects that have been encountered, and these may be accredited to changes in regional brain concentrations of catecholamines, which include norepinephrine, epinephrine and dopamine.
The aim of this study was to discuss the direct and indirect cellular effects of aspartame on the brain, and we propose that excessive aspartame ingestion might be involved in the pathogenesis of certain mental disorders (DSM-IV-TR 2000) and also in compromised learning and emotional functioning.
---- European Journal of Clinical Nutrition advance online publication, 8 August 2007; doi:10.1038/sj.ejcn.1602866.
PMID: 17684524 [PubMed - as supplied by publisher] -
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Keebler
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* Aerobics can damage the heart if done during active infection.
"Aerobic exercises are NOT allowed, not even low impact variety, until the patient has recovered." (Dr. B)
* Other exercise is important. This thread includes PT and Rehab recommendations and suggestions for safe exercise. Cardiac and Adrenal support links are included.
=============================
No steroids - see separate link about that. -
[ 10-09-2010, 12:39 PM: Message edited by: Keebler ]
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Keebler
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From: Lyme Disease 1991: Patient/Physician Perspectives from the U.S. and Canada - Lora Mermin, editor
by John Drulle, M.D.
Excerpts:
. . . "Steroid Disaster" is a term coined by the pioneer of Lyme Treatment, Dr. Burrascano (see link at bottom of page).
Corticosteroids are immune suppressants, the last thing a Lyme patient needs is to lower immunity.
Can you imagine, your body trying hard to fight off the spirochete bacteria and suddenly and immunosuppressants is introduced, "freezing" your immune system, rendering it unable to battle, giving great advantage now to the Lyme bacteria to spread and go wherever it wants .
Corticosteroids can last in the body for months, usually around 6 months. In many bacterial infections such as LD, damage can be done.
Many Lyme patients (such as myself) triggered LD with cortisone shots, pills, inhalers, etc. I can tell you, it is a nightmare I wouldn't wish on my worst enemy.
It is imperative to NEVER take corticosteroid for pain if you know you have a bacterial infection.
Some bacterial infections are so severe that a shot of cortisone could kill you, although that would be unlikely with Lyme, but rule of thumb, bacterial infections and immunosuppressants do not mix! . . .
. . . Dr. Burrascano makes it clear in his treatment guidelines that steroid treatment is detrimental, these are excerpts from his guidelines:
"More evidence has accumulated indicating the severe detrimental effects of the concurrent use of immunosuppressants including steroids in the patient with active B. burgdorferi infection.
Never give steroids or any other immunosuppressant to any patient who may even remotely be suffering from Lyme, or serious, permanent damage may result, especially if given for anything greater than a short course.
If immunosuppressive therapy is absolutely necessary, then potent antibiotic treatment should begin at least 48 hours prior to the immunosuppressants.
The severity of the clinical illness is directly proportional to the spirochete load, the duration of infection, and the presence of co-infections. These factors also are proportional to the intensity and duration of treatment needed for recovery.
More severe illness also results from other causes of weakened defenses, such as from severe stress, immunosuppressants medications, and severe intercurrent illnesses.
This is why steroids and other immunosuppressants medications are absolutely contraindicated in Lyme. This also includes intra-articular steroids."
An easy explanation. Your immune system are the "soldiers" of your body constantly standing by to attack any foreign invader.
When an immunosuppressant is used, it is like killing off or knocking out most of your "soldiers", now your body is open to all foreign invasion and while your immune system is knocked out, those invaders can go anywhere, your heart, liver, brain - everywhere.
. . . More severe illness also results from other causes of weakened defenses, such as from severe stress, immunosuppressant medications, and severe intercurrent illnesses.
This is why steroids and other immunosuppressive medications are absolutely contraindicated in Lyme. This also includes intraarticular steroids. . . .
From page 12:
. . . More evidence has accumulated indicating the severe detrimental effects of the concurrent use of immunosuppressants including steroids in the patient with active B. burgdorferi infection.
Never give steroids or any other immunosuppressant to any patient who may even remotely be suffering from Lyme, or serious, permanent damage may result, especially if given for anything greater than a short course.
If immunosuppressive therapy is absolutely necessary, then potent antibiotic treatment should begin at least 48 hours prior to the immunosuppressants. . . .
Page 20:
. . . and absolutely no immunosuppressants, even local doses of steroids (intra-articular injections, for example). . . .
Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- The above links - in case someone suggests you take steroids to treat what they think is "MS" -
The links about Asparatame, MSG, and alcohol are to help you avoid things that can make lyme (or any neurological condition or infection) worse. Also, as you are in college, and alcohol seems to go along with that, it is vital that you know to avoid all alcohol.
Please copy and paste these links to your reference file - there is no way to absorb it all in one glance. But I wanted to be sure you have the most important information in case you need it.
I do hope you find a real LLMD. If the doctor you have thinks a lumbar puncture is a good idea to test for lyme, this doctor will not know all he should in other matters, either.
Please let your local lyme support group leader know about this doctor as he is doing no service to lyme patients.
I hope you can see the LLMD that DaveNJ sent to you. Good luck. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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posted
Well, we keep trying to convince newbies not to get spinal tap, roll out all the evidence and personal experience, and then they do it anyway. Convinced by docs who typically know nothing about lyme. The medical profession has turned this country into a herd of sheep.
Posts: 8430 | From Not available | Registered: Oct 2000
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"How Does a Spinal Tap Help Diagnose Multiple Sclerosis?
A spinal tap that reveals a large number of immunoglobulins (antibodies) as well as oligoclonal bands (the pattern of immunoglobulins on a more specific test) or certain proteins that are the breakdown products of myelin is suggestive of MS. These findings indicate an abnormal autoimmune response within the brain and spinal cord, meaning that the body is attacking itself.
Over 90% of people with MS have oligoclonal bands in their CSF. While increased immunoglobulin in the CSF and oligoclonal bands are seen in many other brain and spinal cord conditions, their presence is often useful in helping to establish a diagnosis of MS.
However, a "negative" spinal tap does not rule out MS or other diseases. An abnormal autoimmune response in CSF is found in a number of other diseases, so the test is not specific for MS. Conversely, some 5%-10% of people with MS never show these CSF abnormalities. Therefore, analysis of the CSF by itself cannot confirm or rule out a diagnosis of MS. It must be part of the total picture that takes into account other diagnostic procedures such as evoked potentials and magnetic resonance imaging (MRI)."
Please note this line:
Therefore, analysis of the CSF by itself cannot confirm or rule out a diagnosis of MS.Posts: 8430 | From Not available | Registered: Oct 2000
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quote:Originally posted by lou: Well, we keep trying to convince newbies not to get spinal tap, roll out all the evidence and personal experience, and then they do it anyway. Convinced by docs who typically know nothing about lyme. The medical profession has turned this country into a herd of sheep.
That's true.
I'm counting on NY to "hear us."
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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posted
How do you tell the docs no
Posts: 183 | From ... | Registered: Oct 2011
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Center self. Engage neutral mood. Move your mouth, engage voice and let the sound come out for a calm yet decisive "No"
Then, very gathered, something like:
"I would rather explore other diagnostic avenues & considerations right now but I do thank you for offering your suggestions."
Wish them a good day as you gather your things.
Be cordial but you do not have to fill any silence. Realize that the stress hormones can engage our mouths in blabber at times like this. Don't go there.
Find a doctor who has a fuller education, experience and success tick-borne & chronic stealth infections.
Now, of course, the advice in this thread is about MS, lyme and other infections that are best assessed in other ways - and for which the clock is not ticking with the matter of minutes a balance of life & death.
Lumbar puncture may have its place and time. We have to be educated about when that might be and be wise. It's just not regarding the questions about lyme / MS asked in this thread. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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lyme in Putnam
Frequent Contributor (1K+ posts)
Member # 11561
posted
My llmd asked I do one. I've been having bad pain at the top of the spine. He asked me to stand on one foot and I was shaking much, also my knee reflex were high. He wants to check for Lyme but also amount of pressure of fluid. That indicates too much pressure from how I understood it. If too high, he wants me on a diuretic. I know I have Lyme, Bart, but he wants pressure. Could high pressure in fluid be causing brain symptoms. My vision actually changes with episodes of depersonalization which cause confusion every day. Just a guess? Thanks much.
-------------------- He took u to it, He'll you through Posts: 2837 | From NE. | Registered: Apr 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Why not just first do a diuretic and see if that helps? There are many herbs that are diuretic in nature and fairly easy on the body. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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lyme in Putnam
Frequent Contributor (1K+ posts)
Member # 11561
posted
I have hyponatremia and am on a low amt of lasix. I was afraid but if it could get me relief from somewhere I'll take it. He's also checking for lyme, he wanted to check protein to rule anything else out. I had an epidural with my son, hope it's not much different. I have to see my kidney doc next week, I'd have to clear with him. I'm on fluid restriction 32 oz day and take 6000 mg salt daily to keep my salt from dropping. Do you think too much pressure would have an impact on brain. When depersonalization starts ,vision changes, thoughts change, things with vision change reality to unreality. Confusion. I need a new head.
-------------------- He took u to it, He'll you through Posts: 2837 | From NE. | Registered: Apr 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Yes, abnormal brain pressure can cause lots of problems.
Still, CSF is not an appropriate way to test lyme. It can miss it, totally. If negative, that cannot at all be interpreted as absence of lyme.
posted
I had an LP done and had no problem, no pain, no post headache, backache etc.. Best thing that I had done to confirm L/D diagnosis. It is important to know that this is just another tool in the LD diagnosis. It is very rare to find LD in the cerebral fluid.
Lots of things are tested from the drawing of the fluid. In my case LD wasn't found however I had significant elevated protein level which is significant of LD infection in the CNS. I have literature to back this up.
With the IgeniX WB and the 4 out of 5 CDC bands that I had all +++, the LP high protein content was further confirmation and treatment started.
So if you get an LP it's your decision. I wouldn't if I were you get all worked up with anxiety reading all the negative feedback others on this board have to say. The majority haven't had an LP done. Many many LP's are done daily around the world for years. Yes there are risks involved. But there are risks with everything we do in life. How often do you hear or read about bad things happening on the news from an LP?
It may help you in a diagnosis.
-------------------- HERX is a Four Letter Word! Posts: 716 | From If you're going through hell, keep going......Winston Churchill | Registered: Apr 2007
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~ ~ Hope is a powerful medicine. ~ ~ Posts: 2775 | From MN | Registered: Apr 2001
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lyme in Putnam
Frequent Contributor (1K+ posts)
Member # 11561
posted
Thanks. I'm hoping it's increased pressure that can cause the vision changes and dpersonalization (I can dream can't I, depersonization cured by decreasing spinal pressur, huh). The base of my neck has been so sore. If it comes out neg Lyme, I know I have it, legions, pos tests, I'm more concerned at this point about the neck I want to rip off. . Thanks for opinions. Have to see naturopath thurs. my naturopath from ilads just unexpectedly passed away a few weeks ago. I knew I'd be ok, she gave you that confidence. The new one is working with my llmd, hope they talk tomorrow. Thanks. In may, if ny one live near Danbury ct, Dr. B. is going to give a talk on the new culture Keebler. Anyone wants I can give info, time, date...I'm not too far from there. Have a good night. Time for my icy hot roll on for bed.
-------------------- He took u to it, He'll you through Posts: 2837 | From NE. | Registered: Apr 2007
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manybites
Frequent Contributor (1K+ posts)
Member # 33750
posted
I regret that I left the doctor use it on my son when he was less than a year old and lyme was activated with bartonella.
It causes trauma in the system.Over time I learned that we exspose ourselfs to X-rays , scanner , MRI and contrasts in our veins that do not do any good but release rays that will cause damages and put poison that can not be detoxed from the system.
My son was traumatized by it and he grew up with screaming if any body touches or pushes him .
All these are in memory cells and cause trauma that are unnecesary.
In germany just the wall between 2 sites of germany created traumas and anxiety that needed homepathic treatment to release the anxiety from the existing wall.
I would highly say you do not need it.
Treat the infections.I have had at my worst lyme inside my spinal fluid and was screaming from the pain.
Thank good of Ozonated oils and flagyl that reached the spine to calm it down.Killing it in spine was painful.
treat please and do not waste time on all the test.
Posts: 1379 | From disable | Registered: Aug 2011
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