posted
I have been being treated by a neurologist and an infectious diseases MD. I had 28 days of infusion abx that ended at the beginning of April.
My brain is still foggy and I called the ID doc. I had another MRI in the meantime. Now he won't see me until the neurologist sees me and she won't see me until I have a neuro-psych evaluation to quantify my condition. The test is expensive and not covered by my insurance.
The ID doc did order more blood tests and LP but his statement about my fogginess was "it just doesn't make any sense". Then he gave me the story of the "Landmark" study that said there is no benefit from continued abx.
I'm gonna stay with him long enough to see if I still have a Lyme positive LP and blood work. Then I'll decide if I stay under his care.
He did stop short of saying I was nuts.
He's a young guy and nice enough, obviously very intelligent. I just wonder if I can convince him there are other ways to treat this.
-------------------- pen Posts: 23 | From Quakertown, PA | Registered: May 2009
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bettyg
Unregistered
posted
phil,
you're going to infectious dr. whose going to give you a LUMBAR PUNCTURE????
NOPE, NOT ME! have we not told you to stay away from ALL infectious drs. who undertreat you up to 3 wks. max and then you become chronic, which IDSA drs. don't believe in.
also, please be specific in subject line:
had 28 days infusion by infectious dr who wants to do lumbar puncture; saw neurologist too...
click your pencil to right of your name to open up subject line and change to that; you may get more readers and replies.
we do NOT have enough time to read ALL POSTS; impossible so by being specific for EACH POST; your chance of getting readers and replies INCREaSES.
now make an appt. with a LLMD; your state has many. ***********************************************************
post your story above in SEEKING DR. forum
PENN LLMD NEEDED in subject line
go to lower left corner and mark box to receive all replies.
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posted
Been there done that ...same exact situation....what he is saying when he says "it doesn't make sense" is that it's all in your head....time to move on.
Dave
-------------------- On my journey to wellness - One day at a time. Posts: 989 | From NJ | Registered: Sep 2008
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I am searching for an LLMD. I'm waiting to hear from a co-worker regarding an LLMD a friend of hers saw. Also have two others I may try. One did not return a phone call the other looks promising but expensive.
-------------------- pen Posts: 23 | From Quakertown, PA | Registered: May 2009
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I am searching for an LLMD. I'm waiting to hear from a co-worker regarding an LLMD a friend of hers saw. Also have two others I may try. One did not return a phone call the other looks promising but expensive.
-------------------- pen Posts: 23 | From Quakertown, PA | Registered: May 2009
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bettyg
Unregistered
posted
pen, unfortunately majority are, but they spend quality HOURS with you; not 5-20 minutes and running out the door!!
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posted
I am 55 years old and really have never been major league sick before except for appendix and a bad knee. It's been years even since I had a common cold, never get the flu bug. I've been blessed in this regard.
My experiences with Docs is limited but the experiences I did have were positive up until now.
So I find myself balking at stepping out of the mainstream so to speak by going to a DO for instance or going to the extreme treatments needed for this disease.
I believe what I read on the forum and hear from other Lyme sufferers, yet I still have difficulty seeing a Doc far away from my locality, that I don't know.
I saw the film Under Our Skin in Langhorne PA last week and it was very emotional for me because I felt so connected to the patients in the movie. But I still can't decide on an LLMD. I did look up the Haverford Wellness Center that another lister posted about but he's not on the PA LLMD list. I guess I have some "trust" issues now with the medical community.
Phil
-------------------- pen Posts: 23 | From Quakertown, PA | Registered: May 2009
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kreynolds
Frequent Contributor (1K+ posts)
Member # 15117
posted
Oh God... not the Lumbar Puncture! Been through 2.
The first one was positive then I was sent for a second and they couldn't get enough fluid!
They are not necessary in my opinion.
I was lucky and got a positive, but if I knew then what I know now, I wouldn't have gotten it done...
My procedures were VERY painful, they barely numbed the back and raised the table so I was in the air like superman.
I wouldn't recommend them to anyone. It seems that all ID docs send their patients for Spinal Taps.
Lyme should be treated on a clincal diagnosis.
I hope you get the answers you are looking for, but in my opinion I would find another doctor...
-------------------- Diagnosed CDC + 6/2007
Quest: + IGG Bands 18,23,39,41,58,66 and 93.
Quest: + IGM Bands 23,39
Quest: + Bartonella (B.Henselea & B. Quintana),+ Babesia, and + Mycoplasma and Lyme-Induced Addisons Disease
+ Biofilm blood test 12/2010 Posts: 1185 | From New York | Registered: Apr 2008
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posted
I had two spinal taps too. I think they require them to scare people away and deny IV.
Posts: 743 | From New York | Registered: Apr 2009
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kreynolds
Frequent Contributor (1K+ posts)
Member # 15117
posted
Good point John S...
-------------------- Diagnosed CDC + 6/2007
Quest: + IGG Bands 18,23,39,41,58,66 and 93.
Quest: + IGM Bands 23,39
Quest: + Bartonella (B.Henselea & B. Quintana),+ Babesia, and + Mycoplasma and Lyme-Induced Addisons Disease
+ Biofilm blood test 12/2010 Posts: 1185 | From New York | Registered: Apr 2008
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posted
Don't forget to protect your health, Phil! Our LLMD's are mainstream but not in the sense of denying treatment for Lyme!!!!!
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96223 | From Texas | Registered: Feb 2001
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bettyg
Unregistered
posted
phil, on the names you were given by us, check them out on www.ratemds.org and read good/bad comments on those you are considering.
our own metallic blue/mike has many comments by members here on the board, so check with him. he is THOROUGH!
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
-
You have to be kidding.
This doctor said brain fog does not make sense and you are going to stay with him while he taps your spinal column which is NOT, NOT, NOT a good test for lyme?
A neuro-psych test is a Mickey Mouse test considering all that goes wrong with lyme. It cannot possible tell the whole story and is more likely to puzzle them if they have no clue as to brain fog, which is a common problem with advanced lyme.
EVERY good LLMD knows full well about "brain fog" (from the swelling of the brain due to lyme and from toxins).
Your doctor is also very wrong about that study about further abx. They did not do the study long enough, even . . . it should have been done longer and with combination meds.
There is a wealth of research and examples of longer treatment working. But the IDSA doctors seem to become unable to read the real research on lyme.
Your IV, was that ONE single drug? Lyme treatment is always combination. Monotherapy usually fails (although some get lucky).
What did he prescribe to treat the the cyst form of lyme?
And what other tick-borne infections did he assess / test?
What liver and adrenal support did he prescribe and did he also prescribe probiotics while you were on the abx IV?
What other blood tests did he order? Any from Igenex? You do know that you can't retest for lyme as with other infections. If you have lyme, you will still have lyme 28 days later, no matter what. The life-cycle is much longer than that and the cyst form needs much longer treatment.
Any tests for other chronic stealth infections such as Cpn, mycoplasma or HHV-6? These can also cause brain fog and symptoms similar to lyme.
===============
Below explains why a LP is such a poor test. Plus, they 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. Do you have someone to do everything for you for a couple of weeks? It may not take that, but it could.
And, they are expensive. Even if you do not pay out of pocket, someone is making money from a test that does not work to dx lyme.
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.
========================
From:
ILADS Treatment Guidelines for the management of Lyme disease
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.
. . . .
============
Some discussion and more patient experiences in this thread. You can also search "spinal tap" and "lumbar puncture" for other threads.
[ 05-22-2009, 12:58 AM: Message edited by: Keebler ]
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
-
These first 3 posts may not mean much but, after you read a bit, you'll see that getting proper diagnosis and treatment has been very difficult for lyme and TBD (tick-borne disease) patients. You might just want to glance a the top three treads to get an idea of what is being done to help change that.
CONTROVERSY CONTINUES TO FUEL THE "LYME WAR" -(author's details at link)
As two medical societies battle over its diagnosis and treatment, Lyme disease remains a frequently missed illness. Here is how to spot and treat it.
Excerpts:
Meet the players
The opponents in the battle over the diagnosis and treatment of Lyme disease are the Infectious Diseases Society of America (IDSA), the largest national organization of general infectious disease specialists, (and)
and the International Lyme and Associated Diseases Society (ILADS), an organization made up of physicians from many specialties. ( www.ilads.org )
ILADS, by contrast, asserts that the illness is much more common than reported, underdiagnosed, easier to contract than previously believed, difficult to diagnose through commercial blood tests, and difficult to treat, (especially)
especially when treatment is delayed because of commonly encountered diagnostic difficulties ( http://www.ilads.org/guidelines.html - Accessed April 6, 2007).
. . .
" . . .To treat Lyme disease for a comparable number of life cycles, treatment would need to last 30 weeks. . . ."
`` . . .Patients with Lyme disease almost always have negative results on standard blood screening tests and have no remarkable findings on physical exam, so they are frequently referred to mental-health professionals for evaluation.
"...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..."
. . . * Clinicians do not realize that the CDC has gone on record as saying the commercial Lyme tests are designed for epidemiologic rather than diagnostic purposes, and a diagnosis should be based on clinical presentation rather than serologic results.
- Full article at link above, containing MUCH more detailed information.
-===
Co-infections (other tick-borne infections or TBD - tick-borne disease) are not discussed in the Savely article due to space limits. Still, any LLMD you would see would know how to assess/treat if others are present.
May 2008 Volume 39 Number 5 LABMEDICINE www.labmedicine.com - American Society for Clinical Pathology
CHRONIC BACTERIAL AND VIRAL INFECTIONS IN NEURODEGENERATIVE AND NEUROBEHAVIORAL DISEASES
- by Garth Nicolson, Ph.D.
===========================
AFTER reading the articles above this will make more sense and, sadly, shows the state of treatment (and - with the new committee gathered, it is still a horrible situation for there are no real experts on the new panel):
Attorney General Richard Blumenthal today announced that his antitrust investigation has uncovered serious flaws in the Infectious Diseases Society of America's (IDSA) process for writing its 2006 Lyme disease guidelines and the IDSA has agreed to reassess them with the assistance of an outside arbiter.
You should also be evaluated for coinfections. Not all tests are great in that regard, either, but a good LLMD can evaluate you and then guide you in testing. One of the top labs is:
"With most infections, your immune system first forms IgM antibodies, then in about 2 to 4 weeks, you see IgG antibodies. In some infections, IgG antibodies may be detectable for years.
Because Borrelia burgdorferi is a chronic persistent infection that may last for decades, you would think patients with chronic symptoms would have positive IgG Western blots.
But actually, more IgM blots are positive in chronic borreliosis than IgG. Every time Borrelia burgdorferi reproduces itself, it may stimulate the immune system to form new IgM antibodies.
Some patients have both IgG and IgM blots positive. But if either the IgG or IgM blot is positive, overall it is a positive result.
Response to antibiotics is the same if either is positive, or both. Some antibodies against the borrelia are given more significance if they are IgG versus IgM, or vice versa.
Since this is a chronic persistent infection, this does not make a lot of sense to me. A newly formed Borrelia burgdorferi should have the same antigen parts as the previous bacteria that produced it.
But anyway, from my clinical experience, these borrelia associated bands usually predict a clinical change in symptoms with antibiotics, regardless of whether they are IgG or IgM."
The International Lyme and Associated Diseases Society (ILADS) provides a forum for health science professionals to share their wealth of knowledge regarding the management of Lyme and associated diseases.
- In the menu to the left of their home page, you can order DVDs of past ILADS seminars. You might also be able to borrow some from your local lyme support group.
This are invaluable to understanding how these infections work. And, none of this is taught in medical schools. None.
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:
Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
-
Okay,
I hope that you are still with us and realize that you can get better. You have an excellent chance of that if you see a doctor who is truly educated and experienced in this area.
Get a second opinion from a good ILADS-educated LLMD.
1/4 to 1/3 of the way down the page, see the section:
Neuroborreliosis is driving me crazy!
Excerpt:
. . .
Published data from Dr. Fallon and Columbia University from October 2007, show in a placebo controlled trial that long term IV Rocephin makes a difference. Patients were considerably better after 12 weeks.
However, all the improvement disappeared in 3 months when antibiotics were discontinued. A repeat course of IV Rocephin was associated with a return of the gains.
The suggestion from this study is that very long term IV antibiotics may be the best option for patients with Lyme encephalopathy also called neuroborreliosis or simply Lyme disease affecting the brain.
. . .
(Regarding IV treatment) . . . 12 weeks is certainly better than 4 weeks which not be at all helpful. . . .
. . .
Rocephin inhibits cell wall synthesis. That means it only kills spirochetes. In severe cases I add Zithromax and Flagyl. Both can be given orally or by IV. Typically I add Zithromax 500mg IV daily and Flagyl 500mg daily.
There is no literature to support this IV cocktail but it makes good sense and patients seem to benefit.
Of course I realize that my anecdotal reports are not a substitute for sound science. One must realize that many studies in medicine will never be done. This is why medicine is an art as well as a science.
The Zithromax works by an intracellular mechanism and is able to kill L-forms of Borrelia. The Flagyl targets the cyst forms of Borrelia.
It has also been shown that such a cocktail is necessary to treat Chalmydia pneumonia if this is also present. Many patients have incredible responses.
But I am unable to predict how an individual patient will respond. Follow up SPECT scans can show improvement in cerebral dysfunction.
A prolonged course of oral antibiotics must follow the IV treatment in order to avoid any back pedalling from the gains that have been secured. The total duration of oral therapy is also hard to predict, but is likely to be many months to years.
posted
Keebler wins the award this week for the best and most comprehensive reply!
I agree with John that ID docs are probably going the LP route to run patients off. After a few of these, anyone would see which way the wind was blowing.
Lyme is an infectious disease with serious neurological symptoms. So which docs get it wrong most of the time: infectious disease docs and neurologists.
Great medical system we have.
Posts: 8430 | From Not available | Registered: Oct 2000
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-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96223 | From Texas | Registered: Feb 2001
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bettyg
Unregistered
posted
quote:Originally posted by bettyg:
phil, on the names you were given by us, check them out on www.ratemds.org and read good/bad comments on those you are considering.
our own metallic blue/mike has many comments by members here on the board, so check with him. he is THOROUGH!
phil, forget i referred you to ratemds.com; bad info from me!! people have a grudge on dr. and SLAM him there, etc. so comments are NOT ACCURATE.
contact metallic blue/mike, his post is at top of seeking dr., send him an email to address shown, but narrow it down to 2-3 llmds you are considering.
he's quite sick too and organizing major mass. events since they have lost several llmds lately to health dept. charges or possible charges!!
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posted
I believe the first Lumbar Puncture probably made my disease worse. The guy hit a nerve and made me jump a foot on the table. After it I had a serious headache for a week.
I believe it probably helped Lyme get into my nervous system.
If I were rich I'd frivolously sue all those doctors just to annoy them.
Posts: 743 | From New York | Registered: Apr 2009
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posted
Hey all. Firstly thanks for all your help and concern. Secondly I just got onboard and I will see an LLMD on Thursday.
I just this morning at work pulled a deer tic off of my arm. It was smaller than a poppy seed. I work on my antique car and constantly have little knicks and scrapes. I thought that was what this was but no. I pulled the little bugger off and have in in a cup.
So I immediately called the LLMD's office and luckily they can see me on Thursday.
Once again thanks to all for your support and helping me see the light and get onboard with a proper Lyme treating doctor.
I now face a tough decision on whether to give up our cat who adopted us about a year ago. I think she may be the reason the tics find their way in. I also live in a rural area and need to do a certain amount of yard work in or near woods so it's possible I picked it up on my own. I even saw this on my arm and didn't recognize it as a tic.
Phil in Pennsylvania
-------------------- pen Posts: 23 | From Quakertown, PA | Registered: May 2009
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
-
Phil,
Glad to see you came back. I assume you passed on the lumbar puncture and am glad you will see a LLMD in a couple days.
Glad you saved the tick. Add a blade or two of grass for it and be sure it can't get away. It's good to remember that not all ticks are infected but you might think of using some tick repellent on your outer clothes.
It need not necessary be DEET (which I have problems with) but there are also some essential oils that may work. Since I rarely get to go out, I've not really studied those but others say they do work.
Something like essential oil of rosemary, etc. You'd never put an essential oil on your skin, though, as they are mixed with a carrier oil such as almond oil.
--
As for your dear cat. If you love it, I say try to find a way to keep it from ticks and then don't let it scratch you or kiss you on the mouth (as many cats like to do).
If your cat brings you love and warmth, that is very powerful. Your vet may have some ideas for you.
----------
This may helpful to look over or print out before your LLMD appointment. I hope it goes exceedingly well.
posted
Thanks Keebler. I did indeed cancel the LP and the blood work ordered by the ID doc. I know the LLMD will use Igenex lab and get the proper tests ordered and read.
Already talked to the vet regarding the cat. We will use the Frontline tic prevention every 3 weeks instead of 4 and will call the manufacturer to see if we can treat her more often.
She's a real joy (most of the time) and really likes me. She hangs out with me in the garage and is my true buddy.
Phil
-------------------- pen Posts: 23 | From Quakertown, PA | Registered: May 2009
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
-
Phil,
Hope the Frontline works. We need to keep all the buddies we can get, eh?
Hey, be sure to come back and let us know how your appointment goes - when you have the energy for that, that is.
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