I first went to my doctor 15 months ago, at the age of 33, with what was thought to be Neurological problems, falling and dropping things a lot. They did a basic CBC, thyroid, etc and then referred me to a Neurologist. The Neuro did a balance test (ENG) and an MRI of the head and neck (checking for MS). Everything was normal again. He told me there was nothing Neurologically wrong with me and sent me on my way.
Last fall, I started to really deteriorate. I had numbness and shock feelings. I could barely walk. I started having GI problems. I went through a whole mess of GI tests. I had a problem with my GI muscles but the doctor had no idea why. He thought it may be a neurological problem. He suggested I go back to the Neuro. I was not about to go to the same guy as before. I went to a new Neuro who has been wonderful. He was convinced something was wrong and promised me he would get to the bottom of it. Well he sent me for more tests and called me this morning to tell me I have Lyme's disease.
So, here's the questions I have: I had a Western Blot (?) today and am set up for a spinal tap. Anyone have any ideas why I might need a spinal tap?
Has anyone had experience with it going undiagnosed for so long? Are the neurological effects reversible?
Are you able to continue working during treatment? I have a desk job, work at the computer most of the time. (Waiting for my apt with an infectious disease dr, but assuming I will probably need IV treatment due to neurological symptoms and the length of time I have had the symptoms.)
Any insite from someone who has been there would be greatly appreciated. I have to admit, as bad as Lyme's Disease is, I was so relieved that I do not have MS or some of the degenerative neurological problems they have thought I have had along the way.
Thanks, LA
Posts: 60 | From NJ | Registered: Jun 2010
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posted
most of us went years without a diagnosis. i was sick for 7 years before beginning treatment. i haven't been able to work for 2 years. there a lot of people on this site who will be able to help you. i'm glad you have a diagnosis finally now... thats the first step to getting better Posts: 220 | From Kansas | Registered: Mar 2010
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just don
Frequent Contributor (1K+ posts)
Member # 1129
posted
just say No to the spinal tap,,,nothing good will come of it anyway. Its a way to say"see you dont have lyme,,false test!!"
-------------------- just don Posts: 4548 | From Middle of midwest | Registered: May 2001
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posted
You may want to post this in Medical Questions where you'll get many more responses and suggestions.
I agree with don... Say NO! to the spinal tap. They are 20% accurate in finding Lyme disease. So there's no point in having one if the dr has already dxd you with Lyme.
If it comes back negative (very likely) .. then your insurance company could use that against you and not pay for treatment.
How were you diagnosed with Lyme? (No 'S' in LYME) Did you have an ELISA test??
Unless your Western Blot was sent to Igenex lab, it is quite possible that it will come back negative. Hate to say that, but it sure might.. just want you to know that.
That won't mean you don't have Lyme, though!
Please do not waste time seeing an infectious disease doctor. Most of the time, they will NOT treat past about 4 wks. You won't be well in 4 wks.
It's a miracle that any neuro diagnosed you with Lyme! WOW!! That is impressive... but you will need an LLMD (Lyme Literate MD) in order to get well.
Go to Seeking a Doctor to locate one near you.
WELCOME!!
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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posted
Hey, I am 20, and a college student. I found out I had lyme, and they made me do 2 spinal taps. Waste of time and money. Turns out it is RARE if they find any Lyme PCR in your spinal fluid. I had a horrible spinal headache and had to get a blood patch (Which is worse than the spinal) stop fluid leaking from my hole.
Dont do the spinal, I wish I hadn;t. I was so torn with doctors telling me too.
-------------------- 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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Dekrator48
Frequent Contributor (5K+ posts)
Member # 18239
posted
You should run, not walk to a LLMD, not an ID Dr. They will treat you short term and tell you that you are cured.
Then they will tell you that any remaining symptoms are not related to lyme and that you need psychiatric help.
I went undiagnosed for 21 years. Take it from those who know.
-------------------- The fibromyalgia I've had for 32 years was an undiagnosed Lyme symptom.
"For I know the plans I have for you", declares the Lord, "plans to prosper you and not to harm you, plans to give you hope and a future". -Jeremiah 29:11 Posts: 6076 | From Pennsylvania, USA | Registered: Nov 2008
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-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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kidsgotlyme
Frequent Contributor (1K+ posts)
Member # 23691
posted
PLEASE PLEASE listen to the advice on this board. You will save yourself a lot of pain and heartache.
-------------------- symptoms since 1993 that I can remember. 9/2018 diagnosed with Borellia, Babesia Duncani, and Bartonella Hensalae thru DNA Connections. Posts: 1470 | From Tennessee | Registered: Dec 2009
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You will get more responses if I put this post in Medical Questions instead of General Support. But to do that it needs to be closed here.
So I am moving it to "Medical Questions" which you can find by clicking "Questions and Discussion" at the top right of this page.
Or just click here to find your topic in Medical Questions:
Posts: 89 | From U.S. | Registered: Apr 2010
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canefan17
Frequent Contributor (5K+ posts)
Member # 22149
posted
Funny you mention how your diagnosis was sort of a relief.
When I got diagnosed with Lyme (having NO idea what Lyme even was) I was so excited!!
So happy to just get a diagnosis.
I thought a few abx's and I'll be on my way.
.......... you now the rest
Posts: 5394 | From Houston, Tx | Registered: Aug 2009
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- You do not need a spinal tap (lumbar puncture, LP).
You said you have been" set up for a spinal tap." You are the customer here. You have every right to proceed as you think best and you can cancel that if you decide with no explanations. But, I bet the doctors did not inform you of the details below before it was decided for you.
Unless you are in danger of dying in the next few days, just what, precisely, are they looking for? What can be worse than lyme, anyway? Not much.
WHAT other things, precisely? Ask for a list. (Hint: if for high cranial pressure as is often a term they use to justify a LP, high cranial pressure can be caused by brain infections such as lyme. Treat the infection and the pressure, inflammation and swelling diminish).
Now, there are some conditions and times when a LP can relieve cranial pressure but you better darned well have a LL neurologist on board so they know, exactly and totally, all the considerations.
A LP (lumbar puncture/spinal tap) is such a poor test for lyme.
As others here have said (in many previous threads on this topic), 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. . . . . -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- You said "Waiting for my apt with an infectious disease dr"
Sorry to say, but that will not likely work out very well. Talk to your local lyme support group first. Find out this ID doctors name and see if, by some miracle he might just be ILADS-educated. That is what you need.
But most ID doctors are strict IDSA doctors. More below about all that. Sorry that I'm just too tired to adequately explain. Bottom line: most ID doctors follow IDSA guidelines that say lyme is no big deal. You might get a month's treatment at the most (and that may be a start) but they usually don't consider all the aspects that they should.
About the G.I. problems, I hope they tested you for celiac / gluten sensitivity. If not, you might try a gluten-free diet for a few weeks and see if you see any improvements.
Also, be sure to avoid Aspartame and MSG (Google for all the names). Those are toxic to your brain and very excitatory. See the book by Russell Blaylock, MD (neurologist) "Excitotoxins: The Taste that Kills).
Also avoid tuna. It's very high in mercury.
If you are around mold, that can also contribute to the severity of symptoms.
CONTROVERSY CONTINUES TO FUEL THE "LYME WAR" - 2007
" . . .To treat Lyme disease for a comparable number of life cycles, treatment would need to last 30 weeks. . . ."
". . . 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. . . ."
- Full article at link above.
========================
You will also need to be assessed by a LLMD for other tick-borne infections. But you should see the LLMD first as much of that involves history and a clinical evaluation before deciding just which tests might be in order.
** Nutritional Supplements in Disseminated Lyme Disease **
J.J. Burrascano, Jr., MD (2008) - Four pages
======================
It's very important to have this book as a reference tool for self-care and support measures. It answers so many questions in detail that is impossible here.
DVD is $35. and worth every penny. It explains a lot about the politics of it all.
=========================
After all that, I'm really sorry to hear that you seem to have doctor who does not seem to be fully educated about lyme.
I know this a lot to take in so go just one breath at at time. It's a lot to learn in order to stay safe in the volatile medical/political field of tick-borne disease.
Get a copy of your tests for your personal file. You don't need to tell them why, or even tell the doctor. Just tell the person who handles the paper work there that you need a full copy. You will need to sign for that.
Good luck. Take care. You are on your way, really. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Something confuses me. You said you were called today and told you had lyme. But you also said that you had a Western Blot done today.
How did they diagnose you? Did you have a previous test? A current rash?
What lab is doing your Western Blot? If you have been diagnosed, why another test?
By the way, small point but lyme is without an "s" on the end. Most doctors who say "lyme's" have not read the literature about it as it is never referred to as lyme's in medical literature. However, there are a few educated doctors who have a southern accent and may just add an "s" on as a language pattern.
But anytime a doctor talks about "lyme's" it is a red flag that they may not very educated about lyme disease. You need to find out if that is just their slang/speech pattern or if you need to find a doctor better educated about lyme.
It is very nice that you have a neurologist who is willing to use the "lyme" word as most are not. However nice he is, he should know that a LP is not needed to formally diagnosis lyme.
Again, good luck. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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posted
Wow, my head is spinning. Thank you all for your very informative responses.
It was the ELISA test they did, along with a whole list of other things he was checking (not related to Lyme). He said the Lyme test came back positive, my Vitamin D was low, and B12 was in the low/normal range (358).
I never remember seeing a rash. I know I have pulled the bigger ticks off me in the past. Our back yard is wooded. I definitely think I am going to call and ask why he thinks I should have a spinal tap. He may have said Lyme, I don't really recall.
They did do a Celiac test, a colonoscopy, and some other test I can't pronounce. The problem is my sphincter muscles were extremely weak and I did not have any resting pressure or something. I called and left a message with my GI doctor to see if he thinks that could be caused by the Lyme.
My Neuro had already called and talked to the ID doctor and said he was expecting my call before he had even called me. I really trust this Neuro. He told me at my first appointment he knew something was wrong and has been determined to get me better. Everyone else would just hand me a scrip for antidepressants, tell me there is nothing wrong with me, and send me on my way. I will check out the list of Lyme docs though.
Again, thank you. I did not expect to see so many responses so soon.
Posts: 60 | From NJ | Registered: Jun 2010
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posted
Did the neuro route same as you....they put me in hospital twice last year, when my PCP finally did the western blot and it was negative.....I called the neuro..."they said we are not your diagnosing drs talk to your pcp".....i told them you have been treating me for months for balance, vertigo, terrible headaches etc.....they didnt want to know when Lyme was the diagnosis.........I also had a spinal tap which was negative.......I did not get anywhere with treatment until I saw an LLMD and i still have a long way to go...........as much as you like a dr...you need a Dr that experiences this daily and is knowledgable about the future for you......good luck...
-------------------- 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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bcb1200
Frequent Contributor (1K+ posts)
Member # 25745
posted
LIsten to everyone here.
I was just diagnosed in May and my neuro also wanted to do a spinal tap. No way.
I found an LLMD and am now getting proper treatment. Download Dr. Burrascano's treatment guidelines on Keebler's response. Study it. FInd an LLMD. There are a few in NJ. They don't take insurance.
RUN from regular doctors. I'm serious. You won't get well if you stay with them.
-------------------- 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 agree with everyone here who has told you not to get a spinal tap. My son had two, both of which showed that he was CDC positive for Lyme and the ID docs and Neuros at large teaching hospitals, looked us in the eye and told us he "absolutely did not have Lyme". They tested him for everything under the sun, and told us that he needed to see a psychiatrist, that his symptoms were self induced.
Got my son to a LLMD and got him on proper treatment and he is slowly getting better. He has had Lyme since he was 13, and is now 25, so it will be a long haul. But after 3 1/2 hears of treatment, he is so much better and the light at the end of the tunnel is getting brighter all the time.
Bottom Line - Go to Seeking a Doctor and find a LLMD in your area.
Good Luck! You can get better! Take Care, Karen
Posts: 89 | From Long Island, New York | Registered: Mar 2007
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posted
Neuros and ID docs do diagnose Lyme in some cases, but then use completely inadequate treatment and declare the (still sick) patient "cured," sometimes simultaneously claiming that the person never had Lyme in the first place.
This makes no sense and sounds unbelievable, but it is true. If you don't believe us now, you will after it happens to you.
Spinal taps mainly serve the purpose of turning up negative so they can say, "See? The positive Western Blot was a false positive." In reality, false negative Lyme tests are FAR more common than false positives.
On top of that, if you know you have been bit by a tick, and you have Lyme symptoms, and you have a positive Lyme test, then the test is VERY likely a true positive.
While you may find a sympathetic doctor who is actually willing to help you, if that doctor is not a highly trained and experienced expert on the treatment of Lyme disease who has gotten many patients well, you need a better doctor.
Find an LLMD as soon as you can. Even for anybody who suspects they have Lyme but doesn't, I would only take an LLMD's word that it isn't Lyme--they are the only doctors with the knowledge and experience to give you the right advice.
Treatment may be a long haul, but you can and will get better. Good luck to you.
-------------------- Don't forget to laugh! And when you're going through hell, keep going!
Bitten 5/25/2009 in Perry County, Indiana. Diagnosed by LLMD 12/2/2009. Posts: 756 | From Inside the tunnel | Registered: Jan 2010
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quote:Originally posted by Dan's Mom: [QB] I agree with everyone here who has told you not to get a spinal tap. My son had two, both of which showed that he was CDC positive for Lyme and the ID docs and Neuros at large teaching hospitals, looked us in the eye and told us he "absolutely did not have Lyme". They tested him for everything under the sun, and told us that he needed to see a psychiatrist, that his symptoms were self induced.
That is worse than LAME! How horrible! I know many drs order spinal taps because they know they will come back negative and then they don't have to treat the patient for it.
LA....
And your insurance company will have a heyday with it. No coverage then.
Please begin your search for an LLMD!
PS>.. not many people here had the benefit of a rash. That is why so many here are chronic.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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t9im
Frequent Contributor (1K+ posts)
Member # 25489
posted
Hi LA:
I believe there are many good advice posts here. My daughter came down with Lyme last September but we made the mistake of seeing an Infectious Disease MD at the Childrens Hospital. Over the course of 5 months and 3 visits he stuck to his chronic fatigue diagnosis even in the face of new symptoms.
We visited many other specialists, neuro, cardio, rheum, etc. to no avail (ruling out some items) but never a Lyme diagnosis. The Infectious Disease MD insisted she did not have Lyme (as you can tell from earlier posts here this is the rule versus the exception).
We finally saw a LLMD who did a clynical diagnosis of Lyme and Babesia and we (she) has started treatment. The cylnical diagnosis was confirmed by a Western Blot for Lyme (note only two Lyme bands were positive and one non Lyme specific band was positive, this is a negative WB under both CDC and IGenex).
The Babesia was not confirmed (results were negative) BUT there is only testing for two strains of Babesia and there are over 20.
As parents we are happy for the WB two band confirmation as we now know we are on the right path.
The Infectious Disease Society guidelins would not consider my daughter with lyme, just in her mind. I would recommend seeing an LLMD.
-------------------- Tim Posts: 1111 | From Glastonbury, CT | Registered: Apr 2010
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quote:Originally posted by LA: I really trust this Neuro. He told me at my first appointment he knew something was wrong and has been determined to get me better.
la-im similar to you. 31 with neuro problems. went to a dr (internal) friend of my parents who swore i would be better in a few months. he did the standard MD treatment; bloodwork, look confused, repeat. then after doing this tried and true "treatment" he declared me crazy to my parents and now they dont believe im sick.
i then went to an ID "dr". she told me i likely had west nile. she did standard MD treatment; blood work, look confused, repeat. after that she told me i was "very healthy" and to not come back but to stay on my antibiotics.
you will do what you have to do its your life, just dont say you werent warned. if you still plan on going to these drs at least get the opinion of an LLMD as well. cant hurt right?
-------------------- sick since 9-09 igg, 18,23,41 reactive igm, 41 reactive Posts: 436 | From Kansas City | Registered: Jan 2010
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posted
I was sick, unable to work for 10 yrs till diagnosis. I have GI issues also. What kind of symptoms do you have that you think are muscle related? I have some weird upper abdominal symptoms going on and have tons of testing with nothing showing up.
Posts: 383 | From Ar | Registered: May 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- zil,
Are you being treated by a LLMD? you might want to start a separate thread to fully address your questions. Have you started a gluten-free diet? Lyme does cause all sorts of muscle problems. It affects every body system and organ - but can rotate and it not the same for everyone, all the time.
================
LA,
On to more serious matters, as you drift though doctors that are unaware of all that is involved with lyme diagnosis (so also probably unaware of "steroid disasters" )-- if offered or prescribed:
AVOID STEROIDS - in all forms More about that in this thread:
Even if you did not test positive for celiac, it may still be very helpful to avoid gluten. Most LLMDs highly recommend that and most patients to do see help regarding reduced pain in gut and body.
Aspartame and MSG (and tuna or other fish high in mercury) have already been mentioned as on the list to totally avoid. For now, do your best to eat good, real food - not processed. Protein, lots of fresh/steamed vegetables, tart apples, dark berries and you might try a non-gluten whole grain called QUINOA (keen-wa).
More about food and nutrition will follow but for now, avoid alcohol - totally. My guess is that you are not even drawn to it as it makes most lyme patients much worse.
Green Tea can be very nice. Unsweetened Pomegranate Juice.
STEVIA - a sweetener from plants is okay but nothing artificial. Do enjoy garden herbs and spices. In fact some spices are very helpful, especially Turmeric (which is also used as a supplement).
Trade your table salt for SEA Salt.
================
Move, but gently.
Also, avoid aerobic exercise but do the best you can with light movement to keep up some muscles tone and circulation.
Mild yoga or Tai Chi moves, I call it "Ballerina Light" sort of movements to music you like, even if you are lying down, gentle stretches and sweeps are good. I know you said you have trouble walking but just do what your body tells you is wise for you at that point in time.
Deep, rhythmic breathing is very important for circulation and to calm the body.
Visualization is also helpful - taking yourself to beautiful places and rest / move in your mind as your inner self guides you. It's vital to call upon this method during this challenging time.
A warm bath in Epson Salts can help, too. Don't push the heat but do enjoy the warmth. The instant you feel it's too much, gently cool down and rinse off. Then rest a bit.
When you get on a path with a knowledgeable doctor, you will learn more about supplements and body support. For now, common sense according to where you are at this point in time. Even just one minute of gentle movement can be helpful, on and off throughout the day.
I do hope you find an ILADS-educated LLMD. Ask questions and stay in your customer mode. You are inquiring about their knowledge base, their experience, the plan they intend to follow. If they follow IDSA guidelines, they may not treat you if the Western Blot AND spinal tap are positive.
The doctor who called you knows more than most to give some credit to your symptoms with a positive ELISA. Many would say it was "false positive" -
The IDSA does require further testing - and they really don't accept on-going lyme. For them, it has to be sudden onset of symptoms. There are many differences between the IDSA and ILADS approaches. I do hope you find what you need.
Good luck. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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posted
I've had a number of neuro problems myself, and also was diagnosed at age 32. IVIG is a treatment that has helped me significantly. I see an LLMD who is a neurologist in CT, so if you want his name please send me an email. Things can get better. Your issue may have as much to do with autoimmune response as to the actual Lyme bacteria itself. For people with certain genes, Lyme can trigger this autoimmune reaction - which is pretty much all that MS or Parkinson's is, the immune system attacking the body's nerves. But the IV abx should help, too. Hang in there!
Blackbird
Posts: 30 | From Massachusetts | Registered: Dec 2009
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