I saw my LLMD Thursday. We are going ahead with the lumbar puncture hopefully this Wednesday. The Spinal fluid will be sent to Ignenex.
Doc wanted to start a picc line right away. I am not mentally prepared for that. I said let's wait for test results.
The game plan is 6 weeks IV Rocephin while pulsing Flagyl. The six weeks was my idea. Should I be doing it longer?
I have been feeling really good for the last 8 years, well as good as someone with neuro lyme can. I don't want to do this at all really even though i know I must.
Should 6 weeks be a good enough tune up?
God Bless and thank you,
Paul
Posts: 221 | From S. Florida/Massachusetts | Registered: Mar 2005
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Keebler
Honored Contributor (25K+ posts)
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posted
- Why a spinal tap? It's not a very good test for lyme. It's really a terrible test, in that the odds of it being able to detect lyme are extremely inferior and the invasive nature and cost of the test are unnecessary.
But bottom line, the specificity is just a horrible match regarding detection. It's a huge gamble and won't be able to determine whether lyme is present in deeper body tissue if the spinal fluid contains no spirochete samples (which it rarely does).
Even if Igenex tests it, a spinal tap / lumbar puncture has very little chance of doing what you want it to do.
The ADVANCED LABS CULTURE test would be far better chance if you are trying to "prove" persistence to "protect" the choice of the IV treatment. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
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posted
- So, you are a tennis pro. You've been playing for many years and are rather good but not quite in the top tier. Still, you've made the cut at a prestigious tournament. Since you've been playing for many years, would you think that you can just play 3 games and that should be enough to have you win?
When retreating, it's not really a "tune-up" as much as a new game. Many new variables. Sorry, but a time line really can't be put on it. Just so many variables. The science of lyme trumps any ideas we have about timeline.
While it can be easier later in the game in some ways, it does not mean we don't have to play the full tournament season, so to speak.
After IV, though, I assume you'd plan to be on orals for a while? Probably at least 30 weeks for combination treatment that addresses cyst form / biofilm, too? Or it could take much longer.
Hope other tick borne infections have been considered, too.
I'm sorry that it's come to a place where IV is required. I do wish you luck. It should be easier in some ways, but in other ways, figuring out NEW overall formulas can be more tricky. The same things may not work as last time and you'd sure not want to cut treatment short.
One thought is to treat for a full 2 months past the resolution of the last lyme symptom.
Remember, though, aside from even multiple variables, lyme is a STEALTH pathogen. All bets about any way it's going to "behave" are off.
Hold on, though, as many do finally get their lives back. It just takes a lot of different approaches over time. -
[ 04-25-2015, 03:57 PM: Message edited by: Keebler ]
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Keebler
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This book details what the author and her entire family did -- the series of treatments that ultimately helped her regain her life. The "many variables" I mention are detailed in this book. You might also want to see the author's posts here:
LIVER & KIDNEY SUPPORT & and several HERXHEIMER support links, too. -
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Keebler
Honored Contributor (25K+ posts)
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posted
- Also to required with IV Rocephin: some kind of very serious gallbladder support / Rx - before starting the IV and all throughout.
Diet that is kind to gallbladder, too. Rocephin can be especially hard on the gallbladder and if the very distinct support is not in place, it increases the chances of gallbladder failure.
With the support Rx, though, many do well. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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randibear
Honored Contributor (10K+ posts)
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posted
spinal tap? ewww...nope I wouldn't...
-------------------- do not look back when the only course is forward Posts: 12262 | From texas | Registered: Mar 2007
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Why Can't I Get Better?: Solving the Mystery of Lyme and Chronic Disease
- by a leading ILADS LLMD - released Nov. 2013
SIXTEEN POINTS to consider before making any treatment protocol decisions. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
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posted
- Reading a recent thread of yours about the reaction you had to flagyl with dental work, sorry to hear that was not part of your treatment the first time around.
Flagyl, itself, can cause all kinds of reactions, too (as others pointed out - just wanted to echo that), especially if liver support was not on board before starting and all throughout.
Even now, you might want to consider liver support as it can get stressed by infection & by treatment. When the liver is stressed, it affects everything else.
Still, while lyme may still be in the picture (with or without the 16 points mentioned in book above) . . . magnesium could be low and it may be that it would help alleviate at least some symptoms while the bigger picture is sorted out.
Thanks so much for all your valuable information, My LLMD lives by "why can't I get better". He is in his early 30's so he is not as seasoned as other LLMD's.
Also south Florida is not an epicenter for Lyme. Most of his patients come from elsewhere.
I really don't think I can tolerate another 4 years of antibiotics. The first time almost killed me.
I have brain lesions, both elbows have been operated on, 11 herniated discs, 7 spinal cord stenosis and poly-neuropathy with axional loss.
Besides all the immune and endocrine issues i face daily.
Meds to wake up Adderal and Trazadone to sleep.
Thus like many others here I am pretty beat up as it is.
Right now my #1 goal is to get rid of of this 24/7 headache and cranial pressure, with a stiff tender to the touch neck.
Thus the lumbar puncture, I have had 2 prior and it is instant relief to have the pressure gone. Lumbar is easy breezy compared to this pain and pressure in my bleeping head right now.
The first time they did find Lyme in my spinal fluid as they were trying to rule out MS or ALS. The official diagnosis then was Lyme encephalopathy. they also said I had LYME MS.
At my appointment Thursday my reflexes were non-existent. Which always makes me sick to my stomach to even think about. After lumbar they become brisk, not good but better than nothing.
Mass. General hospital found Lyme the last time in the fluid. Go figure!!!
I think I will have blood work drawn and sent to Igenex. Let the local hospital here in Florida try to analyze the spinal fluid. HaHa good luck to them.
Thanks for all your help. It is truly appreciated and I blessing
God bless,
Paul
Posts: 221 | From S. Florida/Massachusetts | Registered: Mar 2005
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Ellen101
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posted
Im confused you stated you have been feeling really good for the past 8 yrs but now you said 24/7 headaches and cranial pressure?
Posts: 1748 | From United States | Registered: Dec 2011
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I had been feeling really good considering what I used to feel like before my original treatment 8 years ago which lasted 4 years.
6 weeks ago I had dental work done. It was done back to back Fridays. I was given Flagyl to take over 3 weeks.
After 10 days all hell broke loose. Headaches, photophobia, muscle ache, tinittis and joints aching. Once i stopped it things have settled a bit. I just can't get rid of this now 5 week long headache.
I was never given Flagyl during original treatment 4 years ago. So it's back!!! although nothing like the first time.
I hope this clears things up for you.
Posts: 221 | From S. Florida/Massachusetts | Registered: Mar 2005
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Keebler
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posted
- You say (and sorry to hear that it was not included): "I was never given Flagyl during original treatment 4 years ago. So it's back!!! although nothing like the first time." (end quote)
Good point.
Still, it may not all be the flagyl. You might want to ask if the numbing agent contained EPI. EPI on top of other things can also really just sink a boat.
Epinephrine is in many anesthetics (not sure about anesthesia, though). Some discussion on why epinephrine (EPI) can be a rough ride for someone with lyme (especially if they have adrenal issues):
EPI & medical / dental procedures -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Catgirl
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posted
Dental work alone is enough to bring lyme back.
I would be somewhat leery of doing a spinal tap. I read somewhere (sorry can't remember where) that if lyme is not present in the spinal fluid then that absolutely rules out lyme (per standard medical guidelines) which could mean no insurance coverage if you do need lyme treatment. This is something to check out for sure.
We all know lyme can hide anytime and anywhere, and if it doesn't make it in the draw, then the test will be negative.
-------------------- --Keep an open mind about everything. Also, remember to visit ACTIVISM (we can change things together). Posts: 5418 | From earth | Registered: Mar 2011
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Rumigirl
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posted
If you are doing the spinal tap to relieve the high csf (cerebral spinal fluid) pressure, as you were implying, IMO your doctor could first try you on Diamox, a med that can lower the high csf pressure.
If that isn't sufficient, or doesn't work, then doctors often rx a spinal tap to check the opening pressure, and relieve the high pressure.
BUT, the bottom line is you need sufficient treatment to beat back what sounds like the neuro-borreliosis in your brain/CNS.
IV would likely be the best choice in that situation. (I'm not a doctor and am not diagnosing or prescribing)! Just reporting what is commonly known by Lyme doctors and reseachers.
6 weeks of IV may or may not be enough for such an occurrence, if that's what it is----sure sounds like it!
Don't forget to look at Babesia as a possibility as well.
Again, I am talking about everything I know from other patient's experiences, my experiences, reading, etc., I'm not giving you
medical advice! But it helps to hear what others have done for what it sounds like you are describing.
If you do have high csf pressure (or think you do), look up Intercranial Hypertension, used to be called Pseudotumor Cerebri.
Of course, the med or the lumbar puncture are for symptom relief (important!), but the cause has to be treated.
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