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Keep your face to the sunshine, then you cannot see the shadows.
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Once you have lost your freedom it is a long walk back.
Here are three links on the subject:
PubMed MEDLINE -
spinal tap OR lumbar puncture AND Lyme disease - 31 on 1 Nov 00 http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=search&db=PubMed&orig_db=PubMed&dispmax=1000&doptcmdl=DocSum&term=lyme+OR+burgdorferi+OR+erythema+chronicum+migrans+OR+borreli*+ix odes+OR+(erythema+migrans+NOT+glossitis)+OR+garinii+OR+afzelii+OR+neuroborreli*+AND+%28spinal+tap+OR+lumbar+puncture%29
Google Search: "lyme disease" "spinal tap" - over 1000 on 1 Nov 00 http://www.google.com/search?q=%22lyme+disease%22+%22spinal+tap%22&btnG=Google+Search
Google Search: "lyme disease" "lumbar puncture" - over 1000 on 1 Nov 00 http://www.google.com/search?q=%22lyme+disease%22+%22lumbar+puncture%22&num=100&hl=en&lr=lang_en&safe=off&btnG=Google+Search
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Art Doherty
Lompoc, California
[email protected]
Your better off with urine and blood, and have them send them MDL.com. Thats a big quest. Tell him there are also co-infections and these need to irradicated first. I would be smart, and not so scared, I would of went a whole nother route.
Now I am stuck with 30day IV treatment, still real sick, with lots of pain, more than manable and no Doctor. By the this makes me cry. So got to go.
Susan
[This message has been edited by Monica (edited 11 July 2001).]
quote:
Originally posted by Tincup:
Paul...
Sorry for your trouble! Please go to General Support and see my response to Becky's (I believe) question about spinal taps. It may help you also. Take care of you and let us know how we can help!
Couldn't find it...interested because my doc's been egging me for over a year to get an LP. (He's a neuro.) Where is it, guys?
A HUGE &#@!*$ HEADACHE on Day 2 and Day 3.
The day of the procedure was no big deal. The hospital kept me laying down for about 3 hours after the procedure. Then I spent the rest of the day laying down at home, though getting up quite frequently due to fluids and kids.
But on Day 2 and Day 3, I have never experienced anything like this. I was totally useless for my family. Damn, I hope I get some positive test results. Ordered everything under the sun from MDL, on blood and CSF.
Day 4 was tolerable. Still spent ~50% of the day in bed. Day 5 was much better. Spent only ~25% in bed. Day 6 was like any other day.
Michael
The mycoplasma only showed up my CSF. My blood, urine everything else was clean.
My spinal taps never did help with my lyme diagnosis, but for co-infections or rule outs it can be of some value.
Just my $.02.
When he said "this is the only sure way to tell if it is lyme" was the LP suggested to rule out other things link MS. The LP results are of little value for Lyme but are valid for a number of other diseases. Maybe this guy is saying if we don't see anything odd then it might be Lyme. If you came back with a positive VDRL they you probaly don't have lyme. Same goes for some other diseases also.
Did he give you a diagnosis differential, ie did he say what you might have and what he is going to test for. If it is lyme alone, If it was me I would say forget it.
If you do get the LP done, test for 14-3-3 protein. If you have this then you definately have something wrong, although they won't know what. If things get ugly in the quest for treatment, if 14-3-3 is present, this is proof that you are sick with as brain related disease.
What about doing imaging first (perfusion SPECT is a good one and is resonably priced). You will need also to get a knowledgable radiologist to read it.
They treated GBS for two years with no long term benefits. Once I began on my own IV and oral antibiotics my GBS symptoms lessoned, and HMO didn't need to treat the GBS any more.
But they would not admit or agressively treat tick borne diseases.
I ran a google search of Pat Coyle and CFS and LD and found a technical IGeneX article.
http://www.igenex.com/labtest.htm
nm
PS Regarding MS per David1097, see
[URL=http://neuro-www.mgh.harvard.edu/forum/ChronicFatigueF/8.20.981.35PMLYMEARTICLE-CONTI]http://neuro-www.mgh.harvard.edu/forum/ChronicFatigueF/8.20.981.35PMLYMEARTICLE-CONTI[/UR L]
Excerpts
By John D. Bleiweiss, MD Trenton, NJ. 4/94
Many Patients are told that they have Multiple Sclerosis (MS) because of brain MRI findings or a spinal tap was positive for oligoclonal bands (OCB) or myelin basic protein (MBP). The medical literature is quite emphatic that MRI does not reliably distinguish between MS and LD because there is too much overlap in their supposedly distinct appearance and location of plaques.
Vincent Marshall reviewed the MS literature in Medical Hypothesis (vol. 25: 89-92, 1988) and advances the notion that LD is causing MS! His survey revealed that multipie studies prior to 1951 were able to demonstrate spirochetes in the spinal fluid of MS patients (by innoculation into animals and on silver stain of CNS tissues). Dr. Coyle has documend the presence of antibodies to Bb in MS patients (Neurology vol. 39:760-763, 1989). The encephalopathy attributed to MS is very reminiscent of LD. Both MS and LD are associated with sinusitis (Lancet, 1986). Dr. Leigner has reported a case of LD which fulfilled all criteria for MS. The epidemiology of MS and the geographic distribution parallels that of LD. The symptoms of both LD and MS can be aggravated if the patient takes a hot bath. Anecdotally, patients with LD, who previously had been identified as MS, responded to antibiotic therapy.
LD has been documented to cause strokes, paralysis, a variety of seizures, transient or permanent blindness, Parkinsonian-like movement disorders, motor and/or sensory neuropathies, mononeuritis multiplex, radiculoneuritic pains, meningitis and encephalitis. It has been affiliated with Lou Gherig's disease and the Guillain-Barre Syndrome.
V2 neuritis appears as paraesthesias or dullness in the central face and cheeks. Gum and tooth pain can be another manifestation of trigeminnal neuritis. Rule out dental abscess or sinusitis which can present with similar tooth pain.
The most Common cranial neuritis I see is that of the VII nerve. Abnormalities of the VII nerve can be varied. Usually there is asymmetry of the central facial creases, the lips at rest or in motion, or overt deviation of the mouth or smile to one side. Colleagues have dismissed these asymmetries as normal findings, saying "Well, everyone hs those". I feel there is significance when antibiotics cause these so-called innate or normal findings to resolve.
When Bell'sPalsy is present, there are the facial defects described above for VII neuritis plus a wider eye on the same side as an elevated eyebrow, often attended by complaints of tearing and drooling (usually at nite) on the affected side. 10.6% of 951 LD cases were found with Bell's palsy and 1/4 of those have had bilateral Bell's palsy (Clark,JR et. al. Laryngoscope 1985; 95:1341-45). Bilateral Bell's promulgated as pathognomonic for LD, actually can be associated with; intrapontine lesions, diabetes mellitus, syphilis, sarcoid, leukemia, Guillain-Barre, viruses or diptheria. Considering the incidence of Bell's palsy in LD, it is improper to treat it as viral in origin without a work up for LD.
Incidentally, hyperacusis (sound sensitivity) can be a feature of VII neuritis. Olfactory neuritis (I) is attended by dysosmia (unusual smells) Neuritis of the III, IV and VI cranial nerves will show up as double vision. When the VIII nerve is involved, vertigo and impaired hearing can result. I have had at least two cases of Meniere's Disease respond to treatment for LD. Dysphagia (difficulty swallowing) can be associated with x neuritis but not invariably. More often in my experience, a deviated uvula or soft palate is perceived. Dysphonia (altered voice) can occur with x neuritis when the branches that serve the larynx are affected. Recurrent laryngeal nerve paralysis has been seen with LD (Schroeter, V. et al. Lancet 2:1245, 1988). Cluster headaches have characteristics compatible with some LD headaches including responsiveness to 100% oxygen.
Immunosuppression due to LD has been reported. Therefore, it is not surprising that recurrent or intractable upper respira tory tract infections (URl's) have been noted. LD can cause or worsen pre-existing sinusitis, asthma, bronchitis, otitis, mastoiditis. Frequently the pediatric history of LD contains a pattern of repetitive URI's. Mastoiditis can also be associated with a Bell's palsy. LD can be affiliated with the appearance of new onset allergies for the first time in a patient's life or magnify an atopic predisposition. The usual medications for sinusitis and allergies will have a predictably diminished effect, when LD is operant.
In many of my patients, cysts are found not uncommonly in various locations: thyroid, breast, liver, bone, ovary, skin, pineal gland, and kidney. Some forms of Polycystic Kidney Disease and Fibrocystic Breast Disease may be LD manifestations.
LD can cause an interstitial cystis leading to bladder pain relieved by urination. A neurogenic bladder can develop with either hesitancy, frequency, loss of bladder awareness, urinary retention, incontinence or the symptoms of a UTI (urinary tract infection). I suspect that some cases of chronic pyelonephritis are actually LD. Pediatricians may want to consider that nocturnal enuresis (bedwetting) is secondary to LD.
Constipation severe enough to cause fecal impaction can occur. Many LD patients will experience a spastic (irritable) colon and that diagnosis should spark a search for LD.
[This message has been edited by Neil M Martin (edited 23 August 2004).]
[This message has been edited by Neil M Martin (edited 23 August 2004).]
Even if the spinal tap comes back positive, it is hard to differentiate between MS and lyme. It is less than 20% accurate for lyme.
Good advice about the sealing up the pin hole. Cause it doesn't heal very fast by itself. I was told by my LLMD that the headache happens particularly frequent to patients that suffer from Lyme. While in general, on a large scale, headaches are rare and mostly happen to skinny young women (according to the nurses in my endoscopy suite where I had my SP done.)
The doctor that does the SP procedure will want to let the pinhole heal by itself. You the patient must insist to have it sealed. You REALLY have to insist. So if you have a tremendous headache the day after, INSIST, PLEAD with your doctor, cause the headache will most like continue since you'll keep leaking spinal fluid through the pinhole.
Note that the fluid doesn't leak to the outside but diffuses into your body inside.
Michael