posted
Husband's been sick 4 years and we are still trying to be sure we are dealing with lyme because he tried treating 4 times and each time developed pancreatitis. This is why we wanted more testing done (Igenex IGG neg/ IGM pos 2x)
I know alot of you have the same problem of the doctors thinking "it's all in your head"...
well we found a neurologist that is fairly lyme-friendly and we had a spect scan and mri done at Columbia Univ.
What is interesting is that he said from the spect he would be able to tell if the pain is psychological or is actually physical.
We laughed at first and said yeah he thinks were nuts too..
But he called yesterday and said the spect revealed that the pain is in fact physical and the results are abnormal so we are having an EEG on Tues.
he is also doing a spinal tap. then he said we would review all the results.
I asked him what if the blood is negative? he said it didn't matter, we need to look at everything all together to make a clinical diagnosis.
Did anyone ever hear of a brain spect determining psychological vs. physical pain?
Posts: 159 | From Toms River, NJ | Registered: Nov 2008
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lpkayak
Honored Contributor (10K+ posts)
Member # 5230
posted
i live in brick-i am new around here-and need a neurologist
could you give me his name?
i have had lyme 30 yrs and i think my tx is mostly over...but i also have 2 closed head injuries adding to my cognitive problems so i need a neuro in this area
in the past i have had so much trouble even finding a neuro that would talk to me at all!
also-i would suggest you search on here re spinal tap. that is one thing i wish i never did... others feel the same . there are reasons but i'm not clear enough to quote the studies right now. i just think you should research it more b4 you do it.
-------------------- Lyme? Its complicated. Educate yourself. Posts: 13712 | From new england | Registered: Feb 2004
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posted
Definitely do the spinal tap- a very telling test. People talk about how terrible it is on here, worst case scenario you have a bad headache for a couple days.
Good luck
Posts: 306 | From NY | Registered: Sep 2010
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posted
Brain spect would be showing blood flow or in the "positive" scan the lack of blood flow in areas of the brain. In my case I also had a spect scan done at Columbia in late 2008 that showed severe areas of hypoperfusion throughout the brain.
I have had a "pressure" headache everyday since that time and it is the only major symptom that I have not been able to touch with any treatment. So yes a positive scan would definetlely correlate to physical pain and not the typical "its all in your head" response.
Posts: 9 | From north jersey | Registered: Aug 2010
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lpkayak
Honored Contributor (10K+ posts)
Member # 5230
posted
posted by lymetoo-she has a lot of experience:
Lymetoo Moderator Member # 743
posted 01 May, 2011 12:29 PM -------------------------------------------------------------------------------- Looks like a medical question to ME!!
Why are you wanting to see an ID dr?? They usually will not treat lyme past 3-4 wks. Your chances of obtaining a positive spinal tap are about 20%.
And then you have the RISK of doing the spinal .. no way I would do one unless my very life were in immediate danger.
posted 01 May, 2011 02:16 PM -------------------------------------------------------------------------------- Hi! You may be lucky enough to have an ID in your area who is familiar with lyme but from my experience and MANY other people in this network. They know very little.
I was told by the ID that I saw that none of my symptoms had anything to do with lyme and that I only needed to see a psychiatrist.
I DID test positive for lyme by a lyme dr that I found a few months later through this Lymenet.
I hate to see you go thru the pain and expense of the spinal tap. It's proven to be an ineffective tool for diagnosing lyme. I know I disregarded a lot of peoples recommendations here at first. I had to "see for myself" and wasted a whole lot of time and money for it.
-------------------- Lyme? Its complicated. Educate yourself. Posts: 13712 | From new england | Registered: Feb 2004
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TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
What the doc meant about the spect determining physical or psychological pain was that if the spect showed some brain abnormality, then that points to a physical cause of your husband's pain.
Here is what Burrascano says:
SPECT scanning of the brain- Unlike MRI and CT scans, which show structure, SPECT scans show function. Therefore SPECT scans give us information unattainable through X-rays, CT scans, MRI�s, or even spinal taps.
In the majority of chronic Lyme Borreliosis patients, these scans are abnormal. Although not diagnostic of Lyme specifically, if the scan is abnormal, the scan can not only quantify the abnormalities, but the pattern can help to differentiate medical from psychiatric causes of these changes. Furthermore, repeat scans after a course of treatment can be used to assess treatment efficacy. Note that improvement in scans lag behind clinical improvement by many months. If done by knowledgeable radiologists using high-resolution equipment, scanning will show characteristic abnormalities in Lyme encephalopathy- global hypoperfusion (may be homogenous or heterogeneous). What these scans demonstrate is neuronal dysfunction and/or varying degrees of cerebrolvascular insufficiency. If necessary, to assess the relative contributions of these two processes, the SPECT scan can be done before and after acetazolamide. If the post acetazolamide scan shows significant reversibility of the abnormalities, then vasoconstriction is present, and can be treated with vasodilators, which may clear some cognitive symptoms. Therapy can include acetazolamide, serotonin agonists and even Ginkgo biloba, provided it is of pharmaceutical quality. Therapeutic trials of these may be needed." (page 6)
And, from page 8 regarding spinal taps:
"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! Therefore, spinal taps are only performed on patients with pronounced neurological manifestations in whom the diagnosis is uncertain, if they are seronegative, or are still significantly symptomatic after completion of treatment. When done, the goal is to rule out other conditions, and to determine if Bb (and Bartonella) antigens or nucleic acids are present. It is especially important to look for elevated protein and white cells, which would dictate the need for more aggressive therapy, as well as the opening pressure, which can be elevated and add to headaches, especially in children."
When they do a spinal tap, thy take a sample of your spinal fluid, not blood.
As Burrascano says, this is to rule out other diseases.
A lot more can happen after a tap than just a few days of headaches. If the hole they puncture in your spinal column does not close, the spinal fluid will continue to drip out, causing you to have a low level of spinal fluid. It can actually collect at the base of the spine. You then have to go back to the hospital for a "blood patch" as they call it.
A know a person who had problems with this for many months afterwards. She was required to just lay for many months to help the hole heal. She got swelling at the base of her spine a number of times.
Be sure hubby goes home from the hospital laying down flat in the car and stays flat the entire rest of the day. This can help prevent the headache from hell !!!
Posts: 9931 | From Maryland | Registered: Dec 2007
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posted
If the spinal tap is strictly to get a Lyme diagnosis then the probability is very low that the test will come back positive even if he does have Lyme. Spinal taps are one of the worst indicators for Lyme disease.
Case in point, I am Igenex positive for Lyme and also had a spinal tap. In my case the tap was more geared to looking for signs of an MS diagnosis which were all negative and so were all of the Lyme bands. There are more dangers associated with spinal taps than just spinal tap headaches afterward. If you search spinal taps throughout the website you will find that many of the most educated people on this site over time would not go near a spinal tap for answers.
With positive bloodwork already and a positive spect scan the probability of Lyme or Lyme co-infections seems very high already and a negative spinal tap will just confuse the situation. Just my opinion, but seeing an LLMD at this point will probably be the right turn in the road as opposed to the "lyme-friendly neurologists" who probably do not or will not truly understand this disease.
Posts: 9 | From north jersey | Registered: Aug 2010
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posted
sandy .. if your husband is seeing who I think he is, he will not receive TREATMENT from him. But at least you two will be convinced he has Lyme.
I would PASS on the spinal. See the worst case scenarios in lpkayak's post. (links)
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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bcb1200
Frequent Contributor (1K+ posts)
Member # 25745
posted
Why on earth would you want to get a spinal? You have 2 positive blood tests and an abnormal SPECT.
It is lyme...case closed.
-------------------- 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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TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
The neurologist I saw before I knew any better did a spinal tap on me and used the negative results to say I did NOT have lyme.
I had a positive lyme test and an abnormal brain scan that said "lyme disease cannot be ruled out" and he still wanted the spinal tap.
You have to figure out why they are doing this. It is to be able to say you don't have lyme.
For your information, the neurologist ordered that the spinal fluid be tested for a number of diseases besides lyme. Want to know what they were?
HIV/AIDS syphilis and other similar infections!
Get it?
Remember, if they accidently nick your spinal cord when they put this needle in next to it to draw the fluid out, you will never be the same again.
If you decide to go through with it, be sure he has ordered that it be done on an x-ray table so that the technicians can see exactly where they are putting the needle the entire time.
This is a scary and painful procedure, and it will occupy the entire day. Be sure hubby does not move while they are doing it no matter what!
Posts: 9931 | From Maryland | Registered: Dec 2007
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METALLlC BLUE
Frequent Contributor (1K+ posts)
Member # 6628
posted
My spinal tap was a nightmare. They knicked my cord and I was in agony.
It's a waste of time if used to find Lyme, the risk to benefit isn't there, not if you already have positive blood testing and a positive SPECT.
As far as what is causing the pancreas issues, perhaps the antibiotic choices need to be simplified to ensure a Herxheimer reaction doesn't pound it.
Try something simple like oral Tetracycline alone, see what happens after a month, keep the dose moderate at about 1,500mg per day total (Or 750) x 2. You can talk to your doctor. It's cheap, it's well tolerated by most patients (not all, but most), and it can easily be stopped once the herxheimer reactions pick up.
Just one idea.
-------------------- I am not a physician, so do your own research to confirm any ideas given and then speak with a health care provider you trust.
posted
I think we are convinced ourselves that it is Lyme. Thank you everyone for your input NO WAY are we going to do a spinal tap!!
I just have a few issues to deal with now.
1. We need an LLMD for treatment - I am scouring my lists all over again now (any suggestions would be great!)..
2. I was thinking IV ABX would be the way to go rather than oral to avoid any gastro problems. He has constant stomach aches, etc. not to mention a possible 5th episode of pancreatitis.. Another reason for this is he is a fireman and can go out on sick leave with the IV - not with the orals..
Posts: 159 | From Toms River, NJ | Registered: Nov 2008
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Glad you have finally been convinced that Lyme and tickborne diseases are part of the pathology. There may of course be additional issues, but you need to start somewhere.
As for the IV versus oral issue -- so much depends on the meds chosen and the patients individual response. Definitely need to remember that even with IV's candida is still part of the picture and also c. diff.
The stomach aches strongly point towards a possible bartonella or BLO coinfection. And if that is the case then Rocephin can help, but relapse would be very quick after stopping that med if the bart or BLO is not also treated.
Good luck.
Bea Seibert
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
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