posted
I am going in for a LP today and I was wondering if anybody has any great advise for me. I'm not too scared but I thought that maybe there was something I should know that I maybe don't already.
How do you guys feel about doing LPs to check for Lyme, Babs, or Bart DNA in the CFS?
Has anybody tested positive through this testing?
I would appriciate any comments you all have!!
Thanks in advance!!
~Sickntired
Posts: 265 | From Oregon | Registered: Aug 2009
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Abxnomore
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I'm sorry to hear because it's rarely warranted. I never had one and I think you will find that most who participate here and good LLMDS don't do them.
The chances of getting a positive test are still slim, it's very invasive and unnecessary. Lyme is a clinical diagnoses, meaning it is diagnosed by symptoms.
Unless there is some very special circumstance an LP is not necessary and won't necessarily find the DNA of any of these pathogens in your spinal fluid.
However, since it seems you are going thru with this, and you should reconsider why you need it, it's important to lay down afterward, for much of the day, I believe, to avoid the horrible headaches that accompany such a procedure after it is preformed.
Have you been tested thru Igenex?
I hope some others chime in.
Posts: 5191 | From Lyme Zone | Registered: Jan 2009
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Abxnomore
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posted
Now I see you are a new poster here and live in Oregon. Oregon is a state that does not acknowledge Lyme and co-infections and does not have any Lyme Literate Medical Doctors (LLMD).
You may want to cancel this test and get yourself hooked up with a good Lyme Literate ND, who can properly help and test you.
Keebler has written much about how to find one and you can use the search tool to pull up past posts.
I'm sure she'll be around later and can give you some advice about how to find a good Lyme Literate ND in your state.
The only reason why an LP is being suggested to you is because you are dealing with a medical practitioner who is not educated or qualified to treat this illness.
It is not necessary at all. Remember it is invasive and you can be tested in other more comfortable and safer ways.
I'd seriously re-think going for a LP.
Posts: 5191 | From Lyme Zone | Registered: Jan 2009
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Remember to Smile
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LPs are barbaric and unproductive.
Abxnomore is correct.
It'd be wise to cancel this unnecessary and painful procedure. People suffering with Lyme disease symptoms need no more pain!
It'd be more effective to treat Lyme symptoms with bed rest today than allow a LP on your body.
Lyme Borrelia doesn't hang out in spinal fluid. Borrelia is more often in tissue or bone, and easiest to find on autopsy. Don't go there!
Looking for LD pathogens with a lumbar puncture is like fishing in a huge lake with a pole making just one cast. If you don't catch a fish, that doesn't mean there are absolutely no fish anywhere in that lake.
Experienced, ILADS-active LLMDs can accurately diagnose Lyme Bb, Babesia, Bartonella, and/or other synergistic co-infections in an office visit by listening to your symptoms & reviewing your detailed medical history (including travel history and types of employment), and doing a physical exam. Blood tests just provide additional data that may help tweak treatments.
IGeneX in CA offers the most reliable LD blood testing, but no commercial lab can reliably detect the causal agents of LD.
Borrelia is notoriously difficult to culture in labs. It thrives in body tissue and has been found in synovial fluid (from swollen knees), surgery scars, eyes, brains, bladders... Borrelia can even remain viable (pathogenic) after the host dies, but our LLMDs will want to treat your infections before they lead to an early demise!
There are a couple dozen spp of Babesia that impact human health, but labs can only test for two spp so far. Many with CLD don't test positive for B. duncani or B. microcoti, yet these same patients achieve long-term remission after babesiosis treatments. Babs is a clinical diagnosis and best treatment is based on empirical evidence and experience getting patients completely well.
Same scenario with bartonellosis.
CLD treatment can be very expensive and it's difficult to get excellent care. If you need help with finances and/or travel challenges, please post again and/or do a search on LymeNet. Thousands here have had similar trials, and there ARE helpful resources you may tap into. Wishing you the very best in 2011, Smile
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Abxnomore
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up
Posts: 5191 | From Lyme Zone | Registered: Jan 2009
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lymeinhell
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[QUOTE]Originally posted by Remember to Smile: Looking for LD pathogens with a lumbar puncture is like fishing in a huge lake with a pole making just one cast. If you don't catch a fish, that doesn't mean there are absolutely no fish anywhere in that lake.[QB]
Ditto!!
You may setting yourself up for some serious pain, particularly if they don't do a blood patch.
-------------------- 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
Thank you all so much for your comments! I guess I should have given a little history first. I have already tested positive for Lyme with a positive ELISA, CD57 of 23, and of course symptoms, and I have a positive Babs test. I havn't tested for Bart because I saw some relief with treatment, we didn't feel the need to actually do the testing.
I have been treating CLD for over 10 months and I am continuing to get worse. I was diagnosed with papilledema about a month ago and they can't figure out what is going on with that. i also have a hemorrhage in my Left eye. My neuro, who seems to have a bit of knowledge about lyme, hasn't ever seen this presented in Lyme pts. They are ocncerned that they Lyme is in my CNS, maybe I have other auto-immune diseases going on, maybe some sort of fungi, I don't know. They are testing me for a bunch of things.
I am seeing one of the Lyme Literate NDs here in Oregon. She is great!
Have any of you heard an x-ray LP?
Do you guys still think it is ridiculas for me to go through with this procedure?
Thanks to everybody for commenting!!
Posts: 265 | From Oregon | Registered: Aug 2009
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steve1906
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posted
I think its a personal decision, the Lumbar Puncture can fine other health problems other than lyme itself. All test like this could have complications.
I will deffinately let you know how it goes! I don't anticipate anything going wrong but you never know. I'm just trying to be as informed as I can!
BTW: I like your signiture. I live with my sister and her family and her babies make me smile each and every day! =)
Posts: 265 | From Oregon | Registered: Aug 2009
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yeah, here's the best advice i can give and wish i took....DONT!!!
-------------------- 3 months Doxy 8 months of Tetra 7 months of Biaxin/Plaq. 4 months Doxy/Biaxin/Plaq. 5 months Biaxin/Plaq. Back on Doxy/Biax/Plaq On the road to recovery. Trying to make people Lyme Aware....... Posts: 289 | From R.I. | Registered: Jun 2009
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Remember to Smile
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QUOTE Originally posted by sickntired19: already tested positive for Lyme with a positive ELISA, CD57 of 23, and of course symptoms, and I have a positive Babs test.
Then you're set to proceed with a knowledgeable ILADS-active LLMD with the goal of swift remission of all symptoms.
Q: been treating CLD for over 10 months and I am continuing to get worse.
Then that treatment protocol wasn't appropriate for your individual case. Seek a new ILADS-active LLMD asap.
Q: diagnosed with papilledema about a month ago and they can't figure out what is going on - also have a hemorrhage in my Left eye. My neuro, who seems to have a bit of knowledge about lyme, hasn't ever seen this presented in Lyme pts.
It's not in your best interest to be a Guinea pig for this neuro. Borrelia is often found in the eye. He's not paying you for the privilege of practicing on you, right?
Thank goodness they're concerned about neuroborreliosis! We concede 1 point for modern medicine in Oregon '11.
Q: maybe I have other auto-immune diseases going on, maybe some sort of fungi, I don't know.
Typical for CLD, not uncommon. It's up to the professionals we hire to provide expert service, not just test for a bunch of things. Neuroborreliosis is exceptionally complex.
Q: I am seeing one of the Lyme Literate NDs here in Oregon. She is great!
Seriously, if you're dating her, that's great! LOL. But if you've a professional relationship AND you're continuously worsening, she's not a great Lyme disease healer for you.
How have you treated babesiosis? That takes priority, and can be fatal. Members here can offer tips for controlling Babesia.
I pray you'll have a painless day, and a painless week for all! Still gonna Smile
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Keebler
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- Yikes. I don't know where to begin. It's good to see so many take the time to reply so early in the day.
You have several good and accurate replies and it's too bad it's now the day of the scheduled test - as there is so much for you to read to get up to speed on this matter.
� HAVE YOU CONTACTED OLDN?
� Contacted the Lyme support groups in your area?
I live in Oregon. There is not one - not one - LLMD in Oregon. Therefore there is no neurologist who has had experience with lyme patients.
Yes, there are a few good ILADS-educated LL NDs here but from the sounds of it if you've been treating just 10 months and are surprised to not be well yet, apparently, you are not with an experienced LL ND afterall.
As you have tested positive for lyme already - and if that LL ND has suggested a spinal tap to see if lyme is in your CNS - then I would fire that ND as they are not at all LL.
Of course, lyme is in the CNS. Of course. It's what lyme does - within 12 hours of being bitten by an infected vector, the CNS is infected.
EVERY LL doctor, whether ND or MD would know that.
Also know that, in this state, even for the very few MDs who know a bit about lyme - they are not allowed to treat it past a few weeks, at most, and then, if they are not fully ILADS-educated, they will try to throw the IDSA treatment at you and that is not effective for 99% of chronic cases.
As for testing for other things, quite frankly, if they are so uneducated about lyme, I would not trust them with other stuff.
Sure, lyme is not everything. But you would need someone who knew what lyme does in order to know what else to consider/rule out, etc.
Ten months is just a blip on the screen for lyme treatment in most cases.
As for autoimmune - after 10 months of being positive for lyme - are you kidding? You do know that many doctors in Oregon are paid to not diagnose lyme and paid to diagnose autoimmune disease. They are paid to toss the autoimmune drugs and antidepressants and tell patients to get a life.
I just can't type more to explain why that autoimmune thing is just so wrong. I wish you had read more before today about how lyme affects the immune system and about neuro lyme.
Lyme can mimic autoimmune stuff - Lyme flips the parts of the immune system, so to speak. Lyme disables part and revs another part and it's just someone that will perplex most doctors.
My hands are a wreck and I'm exhausted just at 10:30 am. If you don't want to wind up like me, you will contact someone who knows how to help you find a proper doctor.
And, of course, consider other dx, too, but - only with someone who really knows what lyme can do - other wise their eyes and brain will not be clear enough to properly discern.
===============
Papilledema (or papilloedema) is optic disc swelling that is caused by increased intracranial pressure. (Thanks to Wiki, for definition).
LYME causes increased intracranial pressure. Lyme causes a lot of problems with the eyes. -
[ 01-19-2011, 04:26 PM: Message edited by: Keebler ]
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Keebler
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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.
. . . . -
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Keebler
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Doctor Referrals (CALDA) -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
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- I apologize if I sound short, irritated, etc. It's not you - but the lack of care in this state. And, seriously, when I know you may be out the door in a minute, I go right to the point.
I do wish you good luck and really do empathize. I know this cannot be easy. I do hope you find an excellent and experienced doctor and that you start to improve.
I know you have a ND but you might want to see about all those who are ILADS educated. Do contact OLDN to see who is up on the latest research.
And, you may want to compare the articles and books in the tread below.
Topic: How to find an ILADS-educated lyme literate (LL) professionals in these areas:
Naturopathic doctor (ND); Acupuncturist (L. Ac.), a doctor of Oriental Medicine (O.M.D.), or a doctor of Ayurvedic Medicine (D.Ay.), certified herbalists or nutritionists, . . .
. . . Holistic MDs, and also Doctors of Osteopath (DO) and Doctors of Chiropractic (DC), etc.
�� Includes many professional links, articles and books on complementary / integrative methods - & RIFE links -- all by LL authors.
�� Links to major issues for lyme patients - such as LIVER support; ADRENAL support; CARDIAC support, etc. -
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Keebler
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- You should know that a lumbar puncture is NOT needed for most of the other chronic tick-borne or chronic stealth infections for which you should be assessed.
Have you been tested for XMRV/HGRV yet? Cpn ? Mycoplasma p. ?
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: ----------
The expanding clinical spectrum of ocular lyme borreliosis.
Excerpt:
CONCLUSIONS:
Lyme borreliosis can cause a variety of ocular manifestations, which develop mainly in the late stage of the disease. Photophobia and severe periodic ocular pain can be characteristic symptoms of Lyme borreliosis.
In the differential diagnosis of retinal vasculitis, Lyme borreliosis should be taken into account, especially in endemic areas.
Includes links from GiGi, Dr. K, and others about KPU / HPU (mauve factor) . . .
& links from TerryK regarding METHYLATION issues
HEAVY METALS also increase the risk of elevated porphyrins. -
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Keebler
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posted
- � HLA-DR
I don't have details about HLA-DR and HLA-DQ but you will want to search that out. Of course, if your ND really is LL, they would have already done that.
If not, do a cross search of these terms at Google: HLA-DR "chronic neurotoxins"
New Theory Links Neurotoxins with Chronic Fatigue Syndrome, Lyme, MCS and Other Mystery Illnesses - PART TWO' -
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Keebler
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- I am still absolutely shocked that your doctors don't know that lyme invades the CNS - or that it is very difficult to eradicate. Many need 3-4 years tx before they see improvement.
You had a positive ELISA - with symptoms. You do not need another test for lyme. Lyme is not going anywhere anytime soon. It takes prolonged treatment. Sorry. But many do see good remissions, so hold on. Reassess treatment options.
Have you addressed the cyst form? All forms, shapes, etc.?
Within 12 hours of a bite from an infected vector, borrelia can be found in the brain of an animal model. That speaks volumes.
Lyme Borreliosis: Neuropsychiatric Aspects and Neuropathology
Excerpt from Page 7, column 3:
. . . CNS dysfunction may result when B. burgdoferi spirochetes increase the permeability of the blood�brain barrier and thereby cross and bind to astrocytes (the nearest neighbor to the brain capillaries) and oligodendrocytes.
Changes in the permeability of the blood�brain barrier have been observed as soon as 12 hours after infection in animal models. . . . -
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Keebler
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Before I knew what was wrong with me, I was sent to an ENT and a Neuro. The neuro did a brain MRI and found 1 tiny lesion which suggested inflammatory disorder. My neuro was trying to rule out MS and other autoimmune disorders so I got more MRIs (cervical, thoracic and lumbar) and all came back fine. Then I got the LP -- first of all, it doesn't hurt at all when it's being done but WOAH, what a headache afterwards. I actually could NOT lift my head for nearly 10 days. If I sat/stood up, I would immediately get a headache that was 1,000x worse than anything I ever experienced. And absolutely nothing helped it to go away except lying down. Of course, all that was for nothing because lp didn't reveal any abnormalities. I would never do it again!
-------------------- Lyme IgM: +31, +34, +41, 23-25 and 83-93 are Indeterminate.
Currently taking Oral Biaxin and Bicillin Injections. Posts: 47 | From New York | Registered: Jul 2010
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Keebler
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- While a LP is not needed to test for this fungal infection, if you go ahead with the LP -- or even already had it done -- call your doctor and be absolutely certain they will order a test for:
Cryptococcus gattii -- particularly, this strain: VGIIc
If you canceled the LP, you can just ask your ND about this.
If you are on an aggressive anti-candida protocol (as you should be), that may help protect you from other fungal infections if you are using the right anti-fungals - - included would be garlic/allicin, OLE, etc. all hopefully familiar to you. -
[ 01-19-2011, 04:22 PM: Message edited by: Keebler ]
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steve1906
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Hi sickntired19, I hope everything worked out okay, and your not to sick after the test.
If you're up and about, how are you doing, and did they find anythin?
-------------------- Everything I say is just my opinion! Posts: 3529 | From Massachusetts Boston Area | Registered: Jul 2008
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posted
If you decide to go through with it, ask that they do a "blood patch", to prevent a "spinal headache" which is a very painful potential complication.
Either way, rest, lay flat and stay well hydrated and report any severe headache in the first week.
You will know it if you have a spinal headache when your head feels like it is caving in and you puke your gut out every time you sit up. Lying flat the pain goes completely away. (The worst pain I have ever been in for 5 solid days, went back in and got a blood patch and got up off the table and was fine.)
There are lots of good comments and info here but the choice is yours as we are all on our own paths.
If you do the test, please share the results with us.
Posts: 31 | From Wisconsin | Registered: Aug 2010
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posted
Hey guys! Thanks for all the comments and well wishes!
The LP went good! It was an x-ray guided one so that was really cool! I could see the screen so I could see everytime the needle was moved. I think the guy that did my LP was new because he was having problems placing the needle for a while so he had another guy come in and help him, they eventually got it and we were on our way! They actually ended up poking my skin 3 times but they moved the needle around in my back a lot!! Today my back hurts a lot but other than that, virtually now headache at all. Just a strange twinge here and there.
My starting pressure was 26 so that is a little high but not terrible. And then the ending pressure was 10. So that was a big difference but they took so much CFS that it isn't shocking. They took 20cc of fluid and the guy said that that was a lot! He said they unsuallly only order about 12cc.
When I moved from the procedure table to recovery I, of course, had a strange headache. I don't know if I would actually call it a headache though, it is just a strange and disturbing sensation. Its painful but yet not. I don't know, its just weird! =)
They let me go after 45 min of laying flat and I felt almost fine, only a slight headache. From there I had to go to the other hospital to get my blood drawn. They drew 10 tubes of blood!!! But I do great with blood, no fainting or queasyness here!! But yeah, nothing like sucking out ALL my life fluid in one day!
Today my back just really hurts! I think I am going to be sore for a while seeing how they had that needle all over in my spine!! I'm serious, I could see when they moved it each time and he was all over! Other than that, only twinges of a headache here and there, nothing major though!!
Oh, yesterday I was having some weird nerve pain down my right leg. It was similar to sciatica but a little different. I think it was just from the LP and it is basically gone now. I've also been having some muscle jerking along my spine and some in my neck. Not a lot and nothing hugely major, but it is there.
Basically I am feeling normal...you know, my normal Lymie self. With the added back pain. I'm trying to drink, but it is hard! I have such a hard time getting enough fluids the way it is that I go for nutritional IVs twice a week. And I am getting an IV today so that should help!
Thanks for your concern, suggestions, and comments everybody! I really appriciate it!
Posts: 265 | From Oregon | Registered: Aug 2009
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posted
im glad it went well but i can only tell you from a different perspective and I dont know what your circumstances are BUT the "opposition", will use anything against you to "prove" you dont have Lyme disease, your Long term disibility provider through your employer or state, will use the results as a tool to prove their point, as in Lyme doesnt exist.
I was very positive WB but LP negative and the long term disiblity through my employer terminated my claim, with this as a big part of the reason why, they actually said there is NO evidence that I have active Lyme disease or any tick born infections despite a positive babesia also. I am now in a legal battle to dispute this.
This was a big tool in their chest so to speak.....I wish I had known before having some of my tests done that trying to prove a point or find a diagnosis can actually have negative consequences.
I wish you 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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posted
I knew you wouldn't have a problem with an LP. Very rare are there complications. It may not find BB, but is a useful tool to rule out everything else.
I'm glad you didn't listen to all the feedback about how bad the LP test is when it's not and rather routine.
My experience with and LP was nothing to comment about. I felt nothing, had no pain headache etc. I didn't lie down for many hours after etc.
In my case the test results were productive and led to my diagnosis.
I really wonder about the people who comment on how bad an LP is have actually had the procedure done.
-------------------- 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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Keebler
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- sickntired19,
Glad it went well. Please let us know how this works out. I wonder just what all tests they will run on the CSF - and the other serum tests.
It would be nice if you found some perfect explanation for something much easier to treat than lyme. However, you are still positive for lyme and that just can't be ignored - even after 10 months of treatment. Remember that lyme treatment can take years for some people.
I think you really need a true LL doctor (who is ILADS-educated) to address the lyme, regardless of what else is found through the recent testing.
Good luck. -
[ 01-20-2011, 10:55 PM: Message edited by: Keebler ]
Posts: 48021 | From Tree House | Registered: Jul 2007
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posted
glad it went well, i couldnt walk for 4 days, pain for 2 whole weeks.
-------------------- 3 months Doxy 8 months of Tetra 7 months of Biaxin/Plaq. 4 months Doxy/Biaxin/Plaq. 5 months Biaxin/Plaq. Back on Doxy/Biax/Plaq On the road to recovery. Trying to make people Lyme Aware....... Posts: 289 | From R.I. | Registered: Jun 2009
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I don't have any health insurance so that aspect of it all is totally different for me. It is all out of pocket so there won't be any legal battles or anything.
Posts: 265 | From Oregon | Registered: Aug 2009
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Thanks! I was kind of feeling stupid for going through with it because of how everybody was like "NO WAY!!". But I didn't feel any leading from within to cancel. I felt like this was something I was supposed to do and so far I am happy I did!
My neurologist didn't think that my CFS pressure was elevated but here it is. It is 26 when the normal is 8-18. So I am happy to know that!
And I wouldn't criticise anybody for not going through with one, I am seeing how the insurance stuff could get nasty but I don't have insurance so that isn't an issue for me.
And this whole last week and especially during the procedure and afterwards I have been praying a lot that they DO find the Lyme in the fluid and that they will catch anything that is going on that might typically hide. I have faith that God will work it all out!
Also, another thing is, is that it seems people aren't understanding that the LP isn't being used to diagnose Lyme, I already have that! It is being used to see if my neurologist can give me IV therapy legally and to check for a plethora of other things!
I guess I had heard from enough people that their LP went Ok that I wasn't scared.
So far I haven't had the huge headache, just twinges that come and go, VERY tolerable! And back pain that I am sure will go away in a week or so. That needle was all over in side my back!
Thank you for the support!!
I like your signature by the way!! Hee Hee!!
Posts: 265 | From Oregon | Registered: Aug 2009
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When I get my results I will deffinately let you all know what all they tested for and what came of it! I see my neurologist this coming Wednesday and I am super excited to see what comes of all these tests!
I have faith that God is working it all out for me! Whether I get + tests for Lyme or co-infections or not, I know that there was a reason for this.I have been praying about it a lot and I know God can work it all out!
My neurologist didn't think that my CFS pressure would be high but it actually is so we already found out a useful peice of info.
The doctor that is treating my Lyme is ILADS trained. The only thing is she has only been doing the Lyme scene for 2 years so I wonder if my case is too complicated for her...I don't know. She has a small practice so it isn't like she has treated 1000s of people. I hear what you are saying though!
Thank you so much for all the comments and info. You really gave me a lot to refer to! Thanks! I decided to go ahead with it because I didn't feel any leading from within to cancel. I have been praying for a while about it and I think it will all work out.
I'll deff update when I get the results back!!
Posts: 265 | From Oregon | Registered: Aug 2009
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The spinal tap wasn't only to see check for TBDs. They did want to see if they could see any of them in there, because if so my neurologist can do all the IV therapy instead of my having to see yet another dr. for that. But they are also testing for a plethora of other things! They really suspect that I have something major going on besides Lyme and co-infections.
I am feeling pretty good, all needles in the spine considered!! Posts: 265 | From Oregon | Registered: Aug 2009
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That is terrible. I'm so sorry that you had such a bad experience! I am very thankful that mine has been so smooth so far!
Posts: 265 | From Oregon | Registered: Aug 2009
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Posting the link for those searching "lumbar puncture" information later on.
If you are considering a lumbar puncture (spinal tap) .. be SURE to read sickntired's experience .. as well as the "Spinal tap Nightmare" thread posted above.
I've been thinking of you since you originally posted -- have been unable to write until now. I saw from your other post that you've been struggling with a headache from the LP, and I'm sorry for this. Hope things ease for you soon.
I wanted to write because I too am in Oregon (actually, right in your area!) and I too am working with a very challenged neurological system from lyme.
I want to echo what Keebler wrote and say that no neurologist in the state of Oregon will understand lyme disease fully. It's wonderful to hear that you have found one who knows it exists, and that lyme can cause neurological issues. This is very rare in our fair state.
However, even if a doctor is aware of lyme disease's existence and the potential for it to cause neurological issues (and even that is a stretch for many), this doesn't mean that they will fully understand the consequences of lyme in the system, and I certainly wouldn't trust a non-lyme-literate neurologist to treat lyme disease.
Lyme is so very complex, and even our lyme-literate NDs and MDs can't know everything -- they who spend most of their professional lives working with lyme, learning about it, studying it, gaining experience with it.
Even the most well-meaning neurologists in our state will always be at the mercy of the state's policy towards lyme -- which is that it doesn't exist. It sounds as though you are already coming up against that, if the purpose of having the LP was to determine if he/she can legally give you IV antibiotics.
I wonder if you would consider having one of our LLNDs give you IV antibiotics. I don't know who you are working with, but I know one of our LLNDs does this, and if you are seeing the other one, they work closely together, and perhaps could make the transition easier for you.
Even experienced LLMDs run into obstacles and need lots of knowledge/experience to treat lyme, let alone neurologists who aren't trained in this.
I also wanted to share my recent experience going to a neurologist nearby. I had been having intense seizures for weeks -- in episodes that often lasted hours at a time. Also had been having full body tremors since June.
As luck would have it, I actually got in with a neurologist who knew chronic lyme was a reality. She quietly told me that many doctors don't believe in it, but she knows it exists. I was pretty relieved that she understood this.
However, she said then went on to say that my symptoms couldn't be related to lyme disease, as she's never seen it present this way.
She diagnosed me as having "stress", and strongly suggested I take anti-depressants, as I seemed depressed. Once I stopped being depressed my "so-called" seizures and tremors would stop.
Although I arrived in a wheelchair and told her I was housebound, we didn't discuss any of my other symptoms.
It was a combination of her totally accepting lyme as a reality, but also having NO CLUE that lyme does in fact cause tremors, seizures, etc -- seizures and tremors that can look very different from other types. She was completely well-meaning, and I even liked her. She just doesn't realize what this disease can do.
So, I wanted to share that with you. I know many others in our area have had similar experience with neurologists. Even if well-intentioned, MDs in our state just don't realize the full serious extent of lyme's reality, or the intricacies of the disease.
I'm truly not intending to sound pushy or anything, just want to make sure you know all the implications of this, and make sure you are educated about it. Obviously only you know what's right for you.
I truly do hope that you get some helpful answers from the LP, as it sounds like you will be getting the results this week. I'll be sending positive wishes to you. Good luck!
Posts: 232 | From Oregon | Registered: May 2010
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I hope you find some help somewhere!
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