posted
I called my ID doctor, and she and the nurse Highly recommend the spinal. They are checking for Lyme in the spinal fluids, and glucose, and other cells.
I am so torn. I am just stressed with my university studies,work, and wedding planning, and money. I lost a job already due to my illness, but ended up luckly getting a new job within two days.
These are my test results, what do these mean? Thanks.
The bands that I have positive for Lyme are specific for Lyme IGG/IGM AB [H] 1.49 indexLyme AB interp. EIA [A] Positive IGG P93 AB [Present] IGG P41 AB [Present] IGM P41 AB [Present] IGM P23 AB [Present] Lyme IGG WB interp. [Negative] Lyme IGM WB interp. [A] Positive.
Thanks. My symptoms (as from the beginning since this last oct...) Headaches, High Blood Pressure (Only since I have been sick) spinal pain, neck pain, neck and spine stifness, Fibromyalgia pain, Sensitive skin, Major Joint pain, Facet join inflammation, Pain behind eyes, dry eyes, White spots in the back of my throat, Sore throat, swallon lymph nodes, confusion,' memory loss ( I have a hard time now even remembering my teachers names) Fibro fog Spacy Twitching, Feeling like I have chin splints, Anxeity, panic attacks, mirgrains. Chest pains, center chest pains, all over chest pains,
New symptom of as these last two weeks: Finger pain, toe pain, heal pain.
-------------------- Stephanie, University Student.
Ehrlichia [POSITIVE] IGG/IGM AB [H] 1.49 indexLyme AB interp. EIA [A] POSITIVE IGG P93 AB [PRESENT] IGG P41 AB [PRESENT] IGM P41 AB [PRESENT] IGM P23 AB [PRESENT] Lyme IGM WB interp. [A] [PRESENT] Posts: 145 | From Idaho | Registered: Feb 2010
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-------------------- My biofilm film: www.whyamistillsick.com 2004 Mycoplasma Pneumonia 2006 Positive after 2 years of hell 2006-08 Marshall Protocol. Killed many bug species 2009 - Beating candida, doing better Lahey Clinic in Mass: what a racquet! Posts: 830 | From Mass. | Registered: Aug 2006
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posted
I didn't think most doctors nowadays even did spinal taps for testing anymore. Too much risk and way too many false negatives.
I mean, what's the point?
If negative, it means nothing, as a large percentage of Lyme people test negative via spinal tap. They have to happen to catch the Lyme DNA via PCR... odds are against them finding it, even if you have it, right?
If positive, then they treat.
But since your bloodwork is positive now, and you have symptoms, wouldn't it be prudent to treat regardless?
And have you been tested for co-infections? If positive on any co-infection, I'd think that would be proof enough of Lyme/tick diseases.
Posts: 584 | From NY | Registered: Feb 2009
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posted
Yeah, I just re posted to be able to post my symptoms.
-------------------- Stephanie, University Student.
Ehrlichia [POSITIVE] IGG/IGM AB [H] 1.49 indexLyme AB interp. EIA [A] POSITIVE IGG P93 AB [PRESENT] IGG P41 AB [PRESENT] IGM P41 AB [PRESENT] IGM P23 AB [PRESENT] Lyme IGM WB interp. [A] [PRESENT] Posts: 145 | From Idaho | Registered: Feb 2010
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Jane2904
Frequent Contributor (1K+ posts)
Member # 15917
posted
Stephanie, you need to go to a LLMD.
A well known Boston Children's Hosp performed a spinal tap on our daughter.
It came back negative. She was later diagnosed by testing, positive for Bart, Erhliciosis and Myco P, she already tested Post. for LYme, but never showed in Spinal Tap.
It was a waste of time and money. Not to say a very stressful event. These Drs. knew nothing about Lyme and Co infections. They even tried to persuade me to forget about Lyme etc.
They were wrong--Do Not waste any time , please find a LLMD , so you can begin the road to recovery!!
Posts: 1357 | From Massachusetts | Registered: Jun 2008
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-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- You had POSITIVE lyme tests already. Spinal taps are not a good test. You can check glucose in much safer ways, for crying out loud.
All those things you are juggling - all those plans - with your symptoms and your positive lyme tests and that doctor you are relying on - you might just have to toss all those plans out the window.
At least, if you go ahead with spinal tap, be sure you studies are covered the next two weeks and that you have a support team around you for even the most basic care.
If you are told to lie extremely still: do that. If you move afterward when you should not, you could have a migraine headache that would last for two weeks. It has happened.
So, you need prepare to be out of commission for two full weeks. Now, it may go off just fine but you need to make a contingency plan in case of complications.
They are ignoring the fact that: a lumbar puncture is very poor test for lyme.
I assure you, though, they will find this to be "negative" - even with your positive tests already done, they are ignoring the severity of this.
Have you read the articles by doctors who have written about this - posted before for you at your other threads? -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Lymeorsomething
Frequent Contributor (1K+ posts)
Member # 16359
posted
No mystery here. Treat the lyme.
-------------------- "Whatever can go wrong will go wrong." Posts: 2062 | From CT | Registered: Jul 2008
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posted
Hi Stephanie, I know you're trying to keep the many pressures in your life up and running. You might even be trying to pretend to the world that you're really not sick--I did. I can feel your attachment to school, job, wedding planning etc. and I have empathy for you. Please hear me when I say you need to slow down and think about what's REALLY important and what can be put off to a latter date.
IF YOU DON'T HAVE YOUR HEALTH YOU DON'T HAVE ANYTHING and it seems to me you're getting worse.
Many other lyme patients here have urged you to drop your infectious disease doc. The reason is that the infectious disease society of america does not believe in anything but acute lyme and does not believe in adequately treating the disease. Don't put yourself through anymore. We are all here to spare you that trial because we've been through it for you.
There is only one short cut here, one way to save money and that is to get to a full-on lyme literate doctor with as much experience as possible. Are you having trouble finding one?
Also, do you have parents who can help? If so, have you talked with them about this? What about the person you're to marry? It might be that you're in a tizzy of confusion because the lyme is messing with your brain. It certainly messes with mine.
Please ask friends or family members to help with this overwhelming situation. Take one step at a time. The first step is getting to the best LLMD possible!!!!! Please no short cuts, don't try to 'save' money. You will waste time and money with a spinal tap and whatever other nonsense this ID doc can think up. Then she will say, "nothing is wrong with you" or "it's all in your head." Then you'll have to fight those wrong pronouncements.
You are seriously ill, you can get better, but you need to go to someone who has a firm grasp on the situation.
All said with lots of love and concern. best regards, sp
Posts: 702 | From North Eastern USA | Registered: Dec 2009
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Now, talking as a teacher, perhaps with a slight touch of maternal instinct (although I was too sick to ever have children because I never got good medical care) . . .
You say you have all this stress: " . . .university studies,work, and wedding planning, and money. I lost a job already due to my illness, but ended up luckly getting a new job within two days. . . . "
It sounds like you just want to make a quick and easy decision and have the spinal tap. Follow the doctor's orders like a good little girl.
Well, you may have been handed a twist to your course work. The real growth is when you can research for yourself - as you are doing by asking here of others who have walked in your shoes. Good start asking questions.
But, then, when presented not just with replies such as our collective opinion, but with literature and solid cases that - overwhelmingly - points out the error in judgment for your doctor to ever even consider a lumbar puncture to test for lyme, glucose and other cells !
Well, I'm at a loss. I know the institution created around doctors gives them a God-like aura. We are here to tell you that, the institution which your ID doctor belongs to is wrong about this. Not about everything but about lyme.
And, I can't say that all ID doctors are clueless about lyme because there are one or two who are not at all. But you are not so fortunate as to have one who is lyme literate.
So, as a student, then what do you do?
Do you take the easy road or do you find the expert who is most knowledge to help you so that you can have a life - so that you can work, be a friend, be with family, raise a family.
If you don't find a good doctor to treat you, you will be sitting by yourself in your pajamas at 4:39 on a Wednesday afternoon because you just can't stand up long enough to shower - or fix a meal. It's a very rocky road without an expert who knows about lyme.
It may take a while . . . and the path is not a walk in the park. But, as the most serious thing they said they are testing in your spinal fluid is for lyme - well, that's just ridiculous. You already have positive tests, with classic symptoms. You need a full clinical evaluation by a lyme expert to determine how to best help you plan a future.
I suppose we are all so vocal because we want the abuse by doctors to stop. We don't want you to be a victim.
Ultimately, you will follow your own instinct on this but please go back and read the experts' work on this. You deserve to have the facts.
We don't want to scare you - or even pressure you. We are vocla and persistent because we just don't want to see you abused by a medical system that does that to lyme patients. And this is not just our collective opinion. This is documented in books, documentaries, articles, rallies . . . there is proof. It's just been hidden.
Whatever your decision . . . it's a long path ahead. I hope your answers become clearer and that you find the very best medical guidance possible.
Best of luck to you. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Oh, I forgot to mention that if you don't get the lyme treated, it can be passed on to your soon to be husband, with intimate contact. This is a serious consideration.
If you go untreated, it can also be passed on to your babies.
With treatment, none of that has to happen (but you'd still need to monitored during any pregnancy). With prompt treatment, you have a chance at a good life ahead - you, your fiance, and the family you hope to create. The longer you wait, the harder it can become.
I hope you have parents or other family who might read over the posts here and help you. Best if you could find someone who has been on this path as it is most unique.
So, whether you go ahead with the lumbar puncture or not, the fact remains: you have classic symptoms and positive tests and will need treatment. You will need to find another doctor.
The lumbar puncture results will not change the facts that are already on your plate.
Now, I know at the college where you are that there are likely chapels and places to go and get quiet. There may be counselors to talk with - that is important if you feel the need.
You might take some time to just get quiet, breathe and go from there. There is not likely to be a miracle but you will be more centered as you own your future by the choices you make. It's your life. As calmly and collected as possible, stand up for it. Claim your right to health.
---
Oh, Regardless of how you intend to proceed on Friday, please request a copy of all tests for your own personal medical file. You need to get all that together so you have it in your possession. No explanations - just request a copy of your tests if you have not yet been given your own copies. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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posted
I just reread your first post. All those symptoms are Lyme symptoms. And you have a positive test. You don't need a spinal tap. What you need is a Lyme-literate medical professional to start treatment with you.
Posts: 13116 | From San Francisco | Registered: May 2006
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posted
There is one situation that might justify a spinal tap. If it was positive then I think that would be additional ammunition to use to get insurance to pay for IV antibiotics.
But as many have said there is a very high rate of false negative results with this test -- hubby has had 3 spinal taps. We did not have a diagnosis yet the first time and he was having symptoms of encephalopathy. He never knew about a tickbite so there was no reason to suspect Lyme disease.
His first spinal tap included an old test that I don't think is used any more -- they compared the level of Lyme antibodies in the blood and spinal fluid. His index was .96 -- a positive result would have been 1.0 or greater. We didn't know anything about Lyme disease at the time and did not understand the implications of this test result until much later.
His 2nd spinal tap he was unconcscious in the hospital for 15 hours one day. During the hospitalization we received the results from a blood test from the week before which showed a positive blood PCR for lyme. But the spinal fluid PCR for lyme was negative. he did have elevated protein indicating an infection but everything else was normal.
Bea Seibert
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Where will the CSF (cerebral spinal fluid) be sent for testing?
You might call Igenex and see if they could test it. I would not trust most labs to do the right test but, even with a good "catch" it's like catching a fish in a big lake.
If you catch a fish, you know that fish are in the lake.
If you don't catch a fish, that does not prove there are no fish in the lake.
Spirochetes (the lyme bacteria) do not like to hang around where there is a lot of action. They like to hide from the activity, much like fish . . . if they hear you coming, they swim for quieter waters.
The vast majority who have posted on this thread and your other one are old enough to be your mom (or at least your older sister) and have replied as if they were.
Is anyone from your family who is knowledgable/supportive helping you through this?
Please know that you've been given good, solid advice from extremely knowledgable people who have been through so much and are more than willing to share their knowledge and experiences.
Honey, you do not need a spinal tap. There is no good reason for you to do it. Pigs would fly before I'd let my daughter who is close to your age go through that...especially when there are lyme-specific bands on your test.
You need to sit back, take inventory and rearrange your priorities.
Your first priority MUST be your health. Without it, you can forget college, work and wedding planning.
You cannot take all this on at the same time. You are putting yourself in a pressure cooker, unnecessarily.
Take a leave of absence from school. Colleges will be around long after we're all gone.
Tell the fiance and your and his parents that you must focus on your health and are therefore postponing the wedding.
And if the fiance doesn't understand, move on...really...if he truly loves you, he will stick by you through thick and thin...TRUST ME on that.
If he walks away, know that you found out sooner than later that he wasn't worth spending the best years of your life on him in the first place. There really are more fish in the sea...don't waste your 20s and 30s on losers (a topic for another day).
If he sticks by you no matter what, he's a gem worth keeping.
If your parents give you a hard time, that's a tough one, but you are an adult now and your first priority MUST be your health. I will assume that your parents understand that.
Limit your work hours to the extent possible. You do not need to have the stress of health problems, college, work and wedding planning all at the same time.
Focus on your health first. Once you are feeling better, even if you're not 100%, you can start easing back into the rest of your life.
I can understand that as a young person, you are struggling and juggling so many things and are eager to get on with completing your degree, getting a great job, getting married, and maybe having kids. As an older person, I am advising you to take a step back.
You do not need to be torn or stressed as such a young age. Life will go on as it will and you cannot control it. YOU need to focus on yourself and what you need now.
Focus on your health. Once you get that reasonably under control you will be more able to enjoy planning your future job and a wedding.
Posts: 214 | From where ticks flourish | Registered: Dec 2007
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Carol in PA
Frequent Contributor (5K+ posts)
Member # 5338
posted
Experience is the best teacher.
She'll have the spinal tap done...she wants to be a "good patient." She'll let the Infectious Disease doctor treat her.
And when that part is finished, if she still has symptoms, we will be here to help answer her questions.
Because that's what we do, over and over.
Carol
Posts: 6947 | From Lancaster, PA | Registered: Feb 2004
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lightparfait
Frequent Contributor (1K+ posts)
Member # 22022
posted
First:
Get yur lyme treated asap by a LLMD
2nd...DETOX< DETX< DETOX!!!
Yu don't want to pass anythng onto your unborn kids.
Please follow Dr. K's type gidelines when you get to the detox portion...
YOur symptoms are never just LYME...it is also toxin related. Please remember that.
The infectius disease Dr.cannot help you now.
Unfortunately, LLMD"s re not covered by most insurance plans.
Ask you family for financial help. You need support. This is more important than your wedding at this time.
Posts: 1009 | From NJ | Registered: Aug 2009
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lightparfait
Frequent Contributor (1K+ posts)
Member # 22022
posted
Which school do you attend or where are you located...maybe one of us can give you a suggestin of a good LLMD in your area.
Posts: 1009 | From NJ | Registered: Aug 2009
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lymeinhell
Frequent Contributor (1K+ posts)
Member # 4622
posted
Here's a good analogy of a Spinal Tap:
If you go to the ocean, and go fishing, does that mean there are no fish in the ocean?
Same thing with a spinal. They may or may not catch something when they do the spinal tap _ A GIANT NEEDLE JAMMED BETWEEN YOUR VERTABRAE.
Let us know when you're done wasting your time and your money. I'm sure by then the infection will really have settled in and you'll be chronic.
I'm not normally so cynical, but you've been given good advice here already and you have positive tests. I don't know what you're waiting for.
-------------------- 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
Dr. B does not recommend a spinal tap. It is highly specific for Lyme but not sensitive, less than 13%!!! That means if it is positive then you definitely have Lyme, but you already know that! If it is negative then the doctor will say that you don't have Lyme, even though the false negative rate is extremely high! Trust me, I have been there.
I was always someone who did whatever my doctors said I should do, until I had to deal with Lyme. It is the most politicized, controversial illness in the medical profession. My doctors wouldn't even say the word "Lyme." You, and only you, can make the decision that you have Lyme, based on symptoms (and blood tests if they happen to be positive, which they often aren't) and then see a LLMD.
I know it's shocking. Most people can't believe that something like this could happen the US. Trust me, though, when it comes to Lyme, you are the only person looking out for your health! That is, besides Lyme activists like the ILADS, the LDA, and people on lymenet.
-------------------- Bart and Babesia seropositive Current tx: Rifampin, Biaxin, Bactrim DS, Artemisinin, Resveratrol (japanese knotweed), Red Root, Boneset Posts: 168 | From PA | Registered: Feb 2010
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posted
My last post was too long. Here is what it boils down to.
RIGHT NOW YOU ARE APPEASING OTHER PEOPLE AT THE EXPENSE OF YOUR HEALTH. SOONER OR LATER YOU WILL REALIZE THE FOLLY OF THIS. WILL IT BE SOONER, OR WILL IT BE LATER?
I'm sorry for the all caps, but I really want to get your attention. I'm trying to keep you from making the same mistakes that I did.
-------------------- Bart and Babesia seropositive Current tx: Rifampin, Biaxin, Bactrim DS, Artemisinin, Resveratrol (japanese knotweed), Red Root, Boneset Posts: 168 | From PA | Registered: Feb 2010
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sutherngrl
Frequent Contributor (1K+ posts)
Member # 16270
posted
The reason they want to do the spinal tap is because they know the chance is great that it will be negative for LD. Then they will tell you, you don't have LD. Thats the intention of 99% of ID docs.
If you had cancer, you would to to a cancer doctor, right? You are positive for lyme, you have lyme symptoms......so go to a lyme doctor.
Posts: 4035 | From Mississippi | Registered: Jul 2008
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posted
Hi - can you please delete the name of the ND? We're not suppposed to name names here. You can always private message with folks about recommendations.
You can put a post in Seeking A Doctor for an LLMD in your area - specify in your heading which area you're interested in.
I really hope you're not going for a spinal tap tomorrow! Best to skip it and go for the kind of treatment we're all recommending here.
Posts: 13116 | From San Francisco | Registered: May 2006
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- I sure hope you have cancelled that spinal tap.
==============
Hey, Dr. T. sounds VERY GOOD. She is an ILADS-educated LL ND. Go for it.
. . . a Naturopathic Physician . . . She is a Lyme-literate doctor who combines conventional and integrative approaches to the treatment of tick-born diseases.
A member of the International Lyme and Associated Diseases Society (ILADS) and the California Lyme Disease Association (CALDA), she has completed the ILADS training program under the mentorship of Dr. R . . . in New York City at Lyme Resource Medical clinic. . . . [in 2008]
As Robin requested, it is good to delete the doctors name.
We don't post full names of LLMDs here to protect them. We use their last initial and maybe location.
Now, if they have a web sites or articles - if they are in the public eye - of course we can see who they are but the difference is that many LLMDs do NOT want to have their name on the web, at all, and we must honor that.
Many LLMDs need to keep a very low profile due to harassment - so we want to protect them.
If we post links to their books or articles, or excerpts, you will see some LLMDs names as you would any other author who receives proper attribution for their work. But that is only for those who are published and intend for their websites and their works to be able to be accessed by the public.
Although Dr. T has an open web site, unless her name is posted alongside of an article by her, for consistency, it's still best just to use her initial.
I'm glad your doctor happens to have a web site so we can learn more about her. Now, it's good to talk to those whom she has helped, and find out more directly from her about how she would approach your case - but it sure sounds like a very good start. I'm so glad to see this.
How soon could you get in?
Is there a way for you to stay overnight, maybe the night before and/or the night of the appointment? Surely, there must be some way so you don't get overtired.
Will you PLEASE call and ask her today about that spinal tap if you are still convinced you need it (as you don't seem to believe any of us about that)? There is still time to cancel if you call the ID doctor today. We are trying to save you from unnecessary pain on many levels. -
[ 02-25-2010, 07:18 PM: Message edited by: Keebler ]
Posts: 48021 | From Tree House | Registered: Jul 2007
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posted
The LLMD does not think it is a good idea for the spinal. My mom, rest of my family, and teachers are urging me to do it becaues other doctors were wanting to do the same thing. My cell counts have been fluntuating, but they already did a blood smear and ruled out cancers and etc. So, they are trying to figure out why my cells are fluntuating (Not that much, just enough to show there is an underlying infection). I dont want to, but I feel the need to do it, just to say I did it, and that I did not leave any holes unfilled.
I keep thinking to myself how stupid I am for going through with this tomorrow, but I feel prepared.
I want to be able to say I did everything. '
-------------------- Stephanie, University Student.
Ehrlichia [POSITIVE] IGG/IGM AB [H] 1.49 indexLyme AB interp. EIA [A] POSITIVE IGG P93 AB [PRESENT] IGG P41 AB [PRESENT] IGM P41 AB [PRESENT] IGM P23 AB [PRESENT] Lyme IGM WB interp. [A] [PRESENT] Posts: 145 | From Idaho | Registered: Feb 2010
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posted
Do you know specifically what they would be looking for in a spinal tap? Which cells? Etc?
Then my next question would be if they could find that info out any other way other than doing a spinal tap, which can potentially be a painful procedure.
I guess if you're going ahead, that's your decision. But so many of us here recognize you have positive Lyme tests already, so we don't think you need any other info to start treatment.
And, be prepared for this outcome: they do the spinal tap, they don't find any borrelia bacteria in the tap (only 13-20%) do, then they tell you you don't have Lyme. This after you have a positive ELISA and positive antibody tests.
They did a similar thing with me. I had a positive Western blot already, they sent out for the ELISA test, which came back negative (it misses at least 50%), then the rheumatologist and the ID doc said good news, you're negative. This after I'm already successfully treating with some antibiotics, symptoms have gone down, I'm herxing.
What I'm trying to tell you is they're playing games with us, to maneuver results so they can say look, you don't have Lyme. Just be aware of that possible outcome.
You wrote above that the infectious disease doc questioned whether your results could be false positives. We don't think like that. We recognize you have confirmation, and don't need further info from a spinal tap at this point.
Posts: 13116 | From San Francisco | Registered: May 2006
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Who is going to take care of you for the next two weeks?
They can check for cancer in other ways that are far less invasive. Lyme, right now, is a far bigger and more immediate threat than any possible cancer.
You need to get to lyme treatment ASAP. The excuses for the spinal tap are lame. After you get the infection under control, a LLMD will also do further assessment.
I cannot tell you the increased chance is that the spinal tap will make lyme symptoms much worse. The endocrine system is very stressed as it is. Do you have the adrenal support necessary to not have your adrenals drop you like a hot brick?
Also, neurologically, lyme can get much worse from the stress of the spinal tap. You run a risk of serious damage from increased stressors, especially those that are taxing to your body.
Doing everything you can - that means PROTECTING yourself from further damage - some of which can have lasting effects. Doing everything you can means resting sometimes - but mostly following the advice of the LL ND who suggests not doing the puncture. If you do, treatment may become even more difficult.
Have you made an appointment yet with Dr. T in Bozeman? Date all set?
And, seriously, what are the protective measures you have in place so that if the puncture is done, it will go the best it can and side-effects can be minimized?
What's the pain to lessen migraines? Tylenol is very hard on the liver so that will make lyme harder to treat when you finally get around to it. Ibuprophen can be hard on the kidneys.
Steroids will definitely make lyme worse and much harder to treat.
But, if in intense pain, you will need - and deserve - to have that adequately addressed. What is the plan? Is it safe?
What are the adrenal supplements to help from crashing? -
Posts: 48021 | From Tree House | Registered: Jul 2007
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posted
You said: "I want to be able to say I did everything."
That's an understandable sentiment, but what do you mean by doing everything? The spinal tap has an extremely high rate of false negatives. If you do it, and get a negative, will you have accomplished anything?
If you go to a LLMD he/she can order a full slate of IGeneX and other labs' tests for Lyme and coinfections. If these tests are positive, and they are much more likely to be because they are much more sensitive and species-specific, then you will have rock-solid evidence for all the doctors and people, like your mother, who put all faith in blood tests. You already know that you have Lyme. With those tests you can show everyone else (if they are positive) that you have Lyme with absolute certainty.
Having those positive tests also helps tremendously with your insurance company. If you have rock-solid evidence of Lyme and coinfections with the best tests then the insurance company will be forced to pay for treatment, at least in part. Of course, if the tests are negative then you may still have Lyme and the ducks, and your mother, will remain skeptical. But still, if those tests are positive you can prove it. I can tell from your posts that "proving" that you have Lyme to the doctors and your mother is important. The spinal tap is unlikely to do this, and can be painful; the best tests can.
If, contrary to our advice, you go ahead with the spinal tap, I truly wish you the best of luck. I hope that it does not hurt and I hope that it is positive and the ducks have to eat their words.
-------------------- Bart and Babesia seropositive Current tx: Rifampin, Biaxin, Bactrim DS, Artemisinin, Resveratrol (japanese knotweed), Red Root, Boneset Posts: 168 | From PA | Registered: Feb 2010
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- If they will take it, send the CSF to Igenex and ask what other infections they can test - other tick-borne infections.
I would trust no other lab and if you have it, at least look for the other infections that the ID doctor has no clue about.
But, as this will be drawn on a Friday, Igenex might not even take the CSF sample as it may be too old to test by the time they would get it. Never good to have samples sitting over a weekend.
And - that brings us to another point. WHEN will your CSF be seen in the lab? On the same day it's harvested? If it sits around too long, it may be too old to tell you much.
Remember your rights as a patient. You have the right to cancel this appointment at any time. And, if at anytime during the procedure, you want to stop. Make them stop. That is your right.
Be sure of what you sign - you will have to sign a form. READ IT FIRST. You do not have to sign if you don't want to. Ask questions if you have them. Don't let them rush you - be sure all your questions are answered.
That said, once the needle is inserted between your vertebrae, they may not be able to just pull it out safely.
I would suggest having fresh organic carrot and ginger juice afterward if someone can have that there for you. An IV of magnesium, other minerals and vitamins would be helpful but most hospitals don't do that. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Yes, Igenex does test CSF (cerebral spinal fluid).
I just called Igenex. For specific instructions, call before 4:50 this afternoon, Pacific time - or in the morning, I guess.
Call 800-832-3200 extension #105 - or anyone else if no answer at that extension.
If drawn on Friday, frozen and shipped on Monday, it should be fine, they say.
Freeze it and on Monday send by FedEx next day. With cold pack along with the sample.
This would still need to be ordered by a MD or an ND and while it may (or may not) be reimbursed by insurance would not be covered up front by insurance. I do not know the cost.
If finances are an issue, remember you already have a positive test. You don't even need this one and, even with Igenex's top-notch quality, it is unlikely to help as it's just NOT A GOOD TEST.
But, you'd have a better chance having the best lab doing the testing.
As for their testing CSF for other tick-borne infections: If ordered, they can also test - but only for Bartonella and RMSF (Rocky Mountain Spotted Fever), not the other Tick Borne infections. You would still need blood work to test for Babesia. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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quote:Originally posted by mcg08002: The LLMD does not think it is a good idea for the spinal. My mom, rest of my family, and teachers are urging me to do it becaues other doctors were wanting to do the same thing. My cell counts have been fluntuating, but they already did a blood smear and ruled out cancers and etc. So, they are trying to figure out why my cells are fluntuating (Not that much, just enough to show there is an underlying infection). I dont want to, but I feel the need to do it, just to say I did it, and that I did not leave any holes unfilled.
I keep thinking to myself how stupid I am for going through with this tomorrow, but I feel prepared.
I want to be able to say I did everything. '
1. You are clearly positive for LD. Many here have told you that the chances of finding the spirochetes in your spinal fluid is slim to none. Blood counts can be all over the place when you have Lyme and coinfections.
2. Spinal tap is an invasive procedure, and not without risks!
3. LLMD does not think spinal tap is a good idea. Nor does anyone here who has responded to you. And it's rare when everyone agrees on the same thing!
4. Why don't you see the LLMD first to see what she recommends?
5. If it came down to it, you could always do a spinal tap down the road if you had to.
6. You are in college and are preparing for marriage. You're old enough to be shipped to Afghanistan. You are an ADULT. You can make your own decisions.
7. It is natural for people to seek different opinions, as you have, but at the end of the day, you have to make the decision that YOU feel is best for yourself, regardless of what mom, your family and your teachers think (Do any of THEM have Lyme? Have any of them gone through a spinal tap?) It's time to let go of what others expect you to do, and start making your own decisions. I am telling you this as a mother who expects my oldest to actively participate in treatment decisions.
8. You say you do not want to do this, and that you feel the need to do it to say you did it and to show that you didn't leave any holes unfilled. You're thinking to yourself how stupid you are for going through with this tomorrow. So, WHY are you doing it then? To placate others at your own expense?
9. I don't think anyone is ever "prepared" for what they haven't experienced already.
10. You want to be able to say you did everything...to whom? To yourself or to everyone else? Be true to yourself, first and foremost and follow your own instincts. The bottom line is that if YOU think you shouldn't do it, then don't.
Posts: 214 | From where ticks flourish | Registered: Dec 2007
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Dekrator48
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posted
Your Mom, the rest of your family and your teachers are not Lyme literate.
There is a REASON that you came to this site.
The other Dr's who wanted to do a spinal tap are not lyme literate.
The LLND who IS lyme literate, recommends against having a spinal tap.
Those of us who have replied to your post have suffered terribly at the hands of non-lyme literate Dr's.
DO NOT feel pressured to have a spinal tap if your gut is telling you that it is not in your best interest and not absolutely necessary at this time.
Your Dr IS missing something.....KNOWLEDGE of how to diagnose and treat LYME!!!!
You say your "cells" are fluctuating...not that much, just enough to show an underlying infection........what does your ID Dr think Lyme is????
Lyme is the infection. You have tests to prove it....most of us don't have positive tests.
Run, don't walk....to the LLND/LLMD!!
I will pray for you because you sure will need it.
-------------------- The fibromyalgia I've had for 32 years was an undiagnosed Lyme symptom.
"For I know the plans I have for you", declares the Lord, "plans to prosper you and not to harm you, plans to give you hope and a future". -Jeremiah 29:11 Posts: 6076 | From Pennsylvania, USA | Registered: Nov 2008
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Carol in PA
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Member # 5338
posted
Give it a rest, guys.
She's made her decision.
Carol
Posts: 6947 | From Lancaster, PA | Registered: Feb 2004
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tick battler
Frequent Contributor (1K+ posts)
Member # 21113
posted
I'm not sure if others gave this stat but I think the spinal is only accurate about 30% of the time. To me, it's not worth it.
I agree with the others...you can't placate non-Lyme literate family members or you will never get well...have them read this post!!!
Even more important is you need to learn with this disease that often doctors are not any smarter than we are, and you can't be afraid to question them. They are OFTEN WRONG, particularly with regard to Lyme. This ID doc may talk very confidently, but he is ignorant and recommending a procedure that is a waste of time. This man will not get you well.
It is good that you are here starting to learn, but if this many experienced lyme patients are telling you something, you might consider researching this further before you take this step.
Please hurry getting to an LLMD...you can go downhill real fast with this disease. And like others have said, you can pass it on to your babies (50% chance). I would suggset reading, "Everything you Ever wanted to know about Lyme Disease" by Karen Vanderhoof Forschner. This is a good overview to start.
tickbattler
Posts: 1763 | From Malvern, PA | Registered: Jul 2009
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Here are some of the odds: --------------------
. . . 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. . . .
Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Stephanie,
We all hope your Friday goes as well as possible. Please stay in touch as we all want to see you get settled onto a good path with expert medical care. Stay in touch with Dr. T. I hope you can see her ASAP. Take care. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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posted
I went through with the spinal. It went very well. I can walk just fine and everything.
They read everything to me that they were testing for. Meningitis and etc. They were testing me for pressure to see if I had that diesase dealing with Hypertension around the brain and spinal cord with the spinal fluid. Also seeing if there was Lyme in my spinal.
My pressure around my cord was normal!!! So, they ruled out that disease. They were acculty worried thats why I had headaches. But the guy who did my spinal was tlaking to me during it saying how he thinks its because of my lyme. That he had just done a spinal on someone two days ago who also had Lyme.
I am so glad I found this group.
-------------------- Stephanie, University Student.
Ehrlichia [POSITIVE] IGG/IGM AB [H] 1.49 indexLyme AB interp. EIA [A] POSITIVE IGG P93 AB [PRESENT] IGG P41 AB [PRESENT] IGM P41 AB [PRESENT] IGM P23 AB [PRESENT] Lyme IGM WB interp. [A] [PRESENT] Posts: 145 | From Idaho | Registered: Feb 2010
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IckyTicky
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posted
Glad it all went well.
-------------------- IGM: 18+, 23+, 30+, 31+++, 34+, 39IND, 41++, 58+++, 66+, 83-93IND IGG: 31+, 39IND, 41+ Also positive for Mycoplasma Pneumoniae and RMSF. Whole family of 5 dx with Lyme. Posts: 1014 | From Texas | Registered: Jul 2009
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Dekrator48
Frequent Contributor (5K+ posts)
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posted
I'm happy that you are ok and hope that now you can get to a lyme literate MD/ND and get proper treatment.
-------------------- The fibromyalgia I've had for 32 years was an undiagnosed Lyme symptom.
"For I know the plans I have for you", declares the Lord, "plans to prosper you and not to harm you, plans to give you hope and a future". -Jeremiah 29:11 Posts: 6076 | From Pennsylvania, USA | Registered: Nov 2008
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Stephanie,
The DVD of UNDER OUR SKIN got to the Post Office but it missed the time to go out today. Be on the lookout for a red, white and blue USPS (postal service) Priority Mail Envelope. You should have it by early this coming week and if you need to borrow longer than a week - 10 days, let me know.
I'm posting this so others will know you will be watching that documentary soon.
Now, I hope on Monday that you can call and schedule an office visit with Dr. T but also a short phone consult for her advice for what to do between and the time she can see you.
Sometimes, doctors do work on a Saturday (mornings, anyway) so you may be able to get through then.
Although you did very well with the procedure today, be sure to take it easy the next couple of days.
Oh, and you may not yet have read this is Dr. B's guidelines but with active infection - aerobic exercise is to be avoided to protect your heart, etc.
Gentle movement is good, of course, walking if you feel good during and after - just don't get your heart rate up too high until you talk to Dr. T. about that. She will know what to tell you.
Good luck. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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quote:Originally posted by mcg08002: But the guy who did my spinal was tlaking to me during it saying how he thinks its because of my lyme. That he had just done a spinal on someone two days ago who also had Lyme.
I am so glad I found this group. [/QB]
Wow.. a miracle that he knew about Lyme causing this!
Glad you found us too. You'll need us!
So relieved it went well for you. That is often not the case when it comes to LP's.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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posted
That's really cool that the guy doing the spinal knows about Lyme disease. He will be helpful to folks! Hope you can get to an LLMD or LLND soon.
Posts: 13116 | From San Francisco | Registered: May 2006
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posted
It's good to share the film, Under Our Skin, with those who are close to you. It may help them understand how serious and complicated lyme is. It was very kind of Keebler to mail it to you on loan.
Posts: 702 | From North Eastern USA | Registered: Dec 2009
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Keep us posted on the spinal tap results and on your initial antibiotic therapy. Glad all went well with your "tap". We can help you make sure that your antibiotic doses and duration mesh with what others on this board have experienced. You are getting started on getting better. That's great.
Helping is our middle name,
Beachinit.
-------------------- Ideas not advice. Posts: 448 | From Downeast Maine | Registered: Jul 2009
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posted
I have been on Doxycycline for the last three weeks. It feels like I have been getting worse ever since i have been taking it. My heart hurts, and I have chest pains.
-------------------- Stephanie, University Student.
Ehrlichia [POSITIVE] IGG/IGM AB [H] 1.49 indexLyme AB interp. EIA [A] POSITIVE IGG P93 AB [PRESENT] IGG P41 AB [PRESENT] IGM P41 AB [PRESENT] IGM P23 AB [PRESENT] Lyme IGM WB interp. [A] [PRESENT] Posts: 145 | From Idaho | Registered: Feb 2010
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djf2005
Frequent Contributor (1K+ posts)
Member # 11449
posted
wow. all that advice and you go ahead anyway. lol
its going to be a long painful journey at this rate.
trust me, i was there also.
the info on this board and contained with the members therein can save you a lot of money, time, and needless suffering.
-------------------- "Experience is not what happens to you; it is what you do with what happens to you."
quote:Originally posted by mcg08002: [QB] I have been on Doxycycline for the last three weeks. It feels like I have been getting worse ever since i have been taking it. My heart hurts, and I have chest pains.
quote:Originally posted by djf2005: wow. all that advice and you go ahead anyway. lol
its going to be a long painful journey at this rate.
trust me, i was there also.
the info on this board and contained with the members therein can save you a lot of money, time, and needless suffering.
Very true.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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Keebler
Honored Contributor (25K+ posts)
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posted
- You said: "I have been on Doxycycline for the last three weeks. It feels like I have been getting worse ever since i have been taking it. My heart hurts, and I have chest pains.
First, if your heart hurts and you think you need emergency medical at any time, do not hesitate in going to your doctor, Urgent Care or the Emergency Room. However, lyme can cause all sort of pain and so can the herx reaction so it's hard to tell sometimes if we need emergency care.
Until you get a LL doctor, you still have to be sure to seek emergency care if you need it. But you also need to learn how to determine, when you can, what is just part of the deal with lyme and what signals an emergency.
------
** You were on doxy for the spinal tap? That will affect the results. Just keep that in mind. Very important - the results will NOT be the same as they would have been without doxycycline. **
-------
1) are you taking LIVER support? Milk Thistle?
2) are you taking probiotics?
3) Magnesium, Fish Oil, Turmeric/Curcumin . . . those should help relieve pain.
On MONDAY morning, can you call the LL ND in Bozemen and set an appointment?
Can you also ask her about taking Olive Leaf Extract to help prevent a candida infection that can occur from abx (antibiotics)? Probiotics can help there, of course, but I found the Olive Leaf Extract was superb in helping me avoid candida altogether when on abx.
I hope you can get the SINGLETON book soon ("The Lyme Disease Solution" http://tinyurl.com/6lq3pb ) that was in a set of links previously sent. It explains why you need all the protective and supportive measures as well as what to expect with different abx and how to handle a herxheimer reaction (herx).
MAJOR REFERENCE LIST FOR SUPPLEMENTS:
This is included in Burrascano's Guidelines, but you may want to be able to refer to it separately, too:
Nutritional Supplements in Disseminated Lyme Disease
J.J. Burrascano, Jr., MD (2008) - Four pages
===========================
Be sure to drink lots of water, do some gentle movement &/or a warm (not hot) bath in Epson Salts. And REST. Your body will require a lot more rest for a while now.
A massage would also help. Surely there are some good Licensed Massage Therapists (LMTs) around. Maybe a massage student would charge less - it's the time of year for them to be taking their practical exams and need to clock in some hours.
Hope you feel better. Take care.
==================
To help protect your liver, be sure to avoid acetamenophen (Tylenol) as that is hard on the liver and can increase pain, actually.
The supplements listed above should help manage pain. (Magnesium, Fish oil, Turmeric / Curcumin, etc.) A good LLMD or LL ND will have more suggestions.
The Herxheimer reaction (also known as Jarisch-Herxheimer or Herx) occurs when large quantities of toxins are released into the body as bacteria (typically Spirochetal bacteria) die, due to antibiotic treatment or rapid detoxification.
Typically the death of these bacteria and the associated release of endotoxins occurs faster than the body can remove the toxins via the natural detoxification process performed by the kidneys and liver.
It is manifested by fever, chills, headache, myalgia (muscle pain), and exacerbation of skin lesions.
Duration in syphilis is normally only a few hours but can be much longer, up to months or years, for other diseases, especially Lyme Disease. The intensity of the reaction reflects the intensity of inflammation present.
The Herxheimer reaction has shown an increase in inflammatory cytokines during the period of exacerbation, including tumor necrosis factor alpha, interleukin-6 and interleukin-8.[1][2]
The reaction is also seen in other diseases, such as borreliosis (Lyme disease[3][4] and tick-borne relapsing fever[5]), bartonellosis, brucellosis, typhoid fever, Myalgic Encephalomyelitis, and trichinellosis, Q fever, and cat scratch disease.[6][7]
Especially note herxheimer abtracts with Leptospirosis, another spirochetal infection.
==========================
The supplements suggested by Burrascano in his guidelines and by Singleton in his book are done so to help prevent and manage a herx. That is why it's so important FIRST to have a LLMD guide treatment.
It's far more complex than just taking a pill. It's nearly a full time job learning what you need to know to take care of yourself right now but, still, rest is vital.
LIVER SUPPORT is absolutely essential. And that is just the beginning.
I do hope you can see the LL ND very soon. You spoke of being able to fit an appointment into your schedule but, right now, this is priority. The sooner you get good medical guidance the better.
This is very complex and none of us can give you the proper care you need. We can offer some help - and so can the books and articles. But you need a LL doctor as soon as possible.
Good luck. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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posted
Your herx has some bartonella qualities to it. I did total of 4.5 mos on doxy 200 mg twice / day before moving to zithro,bactrim,flagyl pulse. The Bart herx was worse (with those meds) than anything I noted while on doxy. The doxy was definitely helpful though. What doxy dose are you taking by the way?
Slow steady improvements,
Beachinit.
-------------------- Ideas not advice. Posts: 448 | From Downeast Maine | Registered: Jul 2009
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Stephanie,
The DVD "UNDER OUR SKIN" should be in your hands by now. Please let me know that you received it. I hope you can watch it today.
I also hope you've been able to schedule an appt. with the LL ND or another LLMD.
Advice on viewing the film: See it as hope. Be sure to watch all the bonus features as you can see those featured who have gotten even better. There is hope.
After you watch it for yourself, then you may select a few friends or family member to watch it with you. By your having seen it first, it will help you be better able to view it with others.
Take care. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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posted
Hey! I got it yesterday! I just have been so busy. I did watch it with a friend of mine. I wont be able to get to an LLMD or LLND until after May when I have money.
A lot of people are telling me that LLND are witch doctors? Is this true?
Thanks so much for the movie. I have the return envelope so I will send it out Tuesday. I still need to watch the bonus stuff.
-------------------- Stephanie, University Student.
Ehrlichia [POSITIVE] IGG/IGM AB [H] 1.49 indexLyme AB interp. EIA [A] POSITIVE IGG P93 AB [PRESENT] IGG P41 AB [PRESENT] IGM P41 AB [PRESENT] IGM P23 AB [PRESENT] Lyme IGM WB interp. [A] [PRESENT] Posts: 145 | From Idaho | Registered: Feb 2010
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posted
Yeah, I am only on 200mg a day with Doxy. My infectious disease Doc did find one Co-Infection today. Ehrlicha. Does anyone else have this one?
Gah. She wont up my Doxy. I feel like I have shin spints, when I dont. I have had a sore throat for the last two months. Doc's keep saying my throat looks fine.
I am trying to get to an LLND. But I wont be able to until may, after my fiance and I get married. Were university students, and we dont have much money. On our off track (May-Sept) We both have decided to probably even FLYING to LLMD docs.
-------------------- Stephanie, University Student.
Ehrlichia [POSITIVE] IGG/IGM AB [H] 1.49 indexLyme AB interp. EIA [A] POSITIVE IGG P93 AB [PRESENT] IGG P41 AB [PRESENT] IGM P41 AB [PRESENT] IGM P23 AB [PRESENT] Lyme IGM WB interp. [A] [PRESENT] Posts: 145 | From Idaho | Registered: Feb 2010
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posted
LLNDs are Lyme-literate naturopathic doctors, meaning they take a more natural approach to medical treatment and are not so inclined to treat with drugs. You can always google for anything and learn more about the topic.
If in case you meant LLMD too, that stands for Lyme-literate medical doctor, and that's the kind of doctor we need to see, since they are experienced in recognizing and treating Lyme patients.
Be aware that there are always differing points of view on how to recover one's health.
Posts: 13116 | From San Francisco | Registered: May 2006
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Keebler
Honored Contributor (25K+ posts)
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posted
- Q: " . . . A lot of people are telling me that LLND are witch doctors?" end quote.
As Robin points out, A LL ND is a Lyme Literate Naturopathic Physician. What makes them LL is further training, education. Dr. T, whom you are considering, has completed the ILADS-physician training course and is a member of ILADS.
That's important. In many states, NDs are licensed to be able to prescribe many of the same antibiotics as MDs. They also incorporate IV abx when needed.
A LLMD is a Lyme Literate Medical Doctor.
I separate the initials for clarity but to be sure, you mean a LL ND (naturopathic doctor), not a LL MD, correct?
Hmmm, let's see.
Take a look below. Sure does not look like "witch doctor" school. I wonder how well those people who think it's all smoke and mirrors would fare if they had to complete the coursework?
Four years of medical school specifically focused on learning all about the human body as well as naturopathic medicine? Intership, residency. Specialized training beyond that for some.
I've been treated by several NDs over the past 20 years and found them all excellent in their field. Now, it was only 2 years ago that I found one who was LL, so the others did not have the expertise I needed but, before I knew about lyme, several of those very find NDs literally saved my life more than once with their knowledge.
And that a far better track record than many MDs I begged for help for many years and was just turned away.
You might want to direct all those people to the links below. First, for the specific LL ND in reference:
Here you will find information on the Naturopathic Doctorate program from our School of Naturopathic Medicine, and the Master of Science in Oriental Medicine and Master of Acupuncture from our School of Classical Chinese Medicine.
We also have information on continuing education including classes and workshops . . .
Looks like you can order their curriculum (course work) brochure.
Bastyr University, located north of Seattle, Washington, is an accredited institution, internationally recognized as a pioneer in natural medicine. Bastyr is the largest university for natural health arts and sciences in the U.S., combining a multidisciplinary curriculum with leading-edge research and clinical training.
Bastyr's fully accredited naturopathic doctor (ND) program is internationally renowned for its rigorous curriculum, comprehensive clinical training and groundbreaking research.
You can explore each item on the menu to learn more about:
Now, one may still prefer a MD, one who is LL. But, I assure you that a licensed ND who has graduated from an accredited four year medical college with a doctorate degree in naturopathic medicine is not a "witch doctor" at all. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- 200mg a day of Doxy is not enough to treat Ehrlichia or Lyme. How long does the ID doctor plan to treat you? When does your doxy prescription expire? Are you to go back soon ?
Since you've asked about an increase in dose and were denied, my guess is there is no plan to increase that later - otherwise the doctor would have likely told you, that, I would think.
EHRLICHIOSIS is a tick-borne rickettsial infection. The fact that they found this in your CNS (cerebral spinal fluid) AFTER you'd already been on doxy for a couple weeks seems to imply that the dose of doxy is not enough. I certainly would question the decision to stay with the same low dose.
Meningitis from either Lyme or Ehrlichioses in the CNS can be a serious matter so be sure to notify your ID doctor if you have any harsh symptoms, especially head or neck pain.
Now, the low dose doxy may be all your body can handle right now . . . but at this dose, the infections will not be effectively treated.
I'm concerned that you may be planning a wedding when planning to save your life is really what matters most right now.
There is no easy way to say this but with a wedding planned in a couple months, it's vital to know that some researchers have reason to think lyme may be transmitted sexually (as you saw in the documentary ) - and there is proof of it being passed to children during pregnancy. With the low dose you are on, if you get pregnant, lyme and ehrlichia could be passed to baby. This is where a LLMD or LL ND's knowledge would help.
With expert medical care, this can be avoided. I know money is an issue but, somehow, please be as proactive as you can.
Oh, the "skin splints" are very real - a classic sign of disseminated lyme. See this article for that description:
The sore throat that no doctor can "see" is also pretty classic. They aren't looking at the crescent arches to the side of the throat, that is likely where it's so sore. I had a sore throat for 20 years that over a dozen doctors said looked fine. They looked right past the bleeding arches on the sides, though.
It's best to hold off on kissing until your throat is no longer sore and the little medicine you are on has had some time to try to work some magic. If your fiance contracts this, he could be passing it back to you. You also wouldn't want him to get sick down the line. If your throat feels better, kissing may be fine but for sexual contact, protection would be best until you are positive that you are clear of lyme and that will likely be a while.
I know all that sounds serious but so is trying to keep one more person from getting lyme. Many couples work through this just fine and if your future husband really cares for you, he will want to do everything possible to ensure both your health and his. And visa versa. Love can handle anything. Even if you postpone, real love will survive.
Glad you got to watch "Under Our Skin" - Please do watch all the bonus footage as that is very important, too.
I hope your fiance was/will be able to watch all of it, too. It's important that he see it.
Be sure to save all those web links posted for you at your previous threads. They may be your life-line.
Take care - take really good care, okay? ===============
Be sure to keep up PROBIOTICS and MILK THISTLE, referenced in previous threads. -
[ 03-04-2010, 05:59 AM: Message edited by: Keebler ]
Posts: 48021 | From Tree House | Registered: Jul 2007
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posted
The wedding is for sure on April 30th. The ID doc talked with Nate and I today about how lyme can be congentially passed through pregnancy. We are both aware. We get married next month. Everything is going well. We are planning on visiting either an LLMD or LLND right after the honeymoon. We are both off track may -sept. That will be are only opportunity to see a LLMD or LLND
-------------------- Stephanie, University Student.
Ehrlichia [POSITIVE] IGG/IGM AB [H] 1.49 indexLyme AB interp. EIA [A] POSITIVE IGG P93 AB [PRESENT] IGG P41 AB [PRESENT] IGM P41 AB [PRESENT] IGM P23 AB [PRESENT] Lyme IGM WB interp. [A] [PRESENT] Posts: 145 | From Idaho | Registered: Feb 2010
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seekhelp
Frequent Contributor (5K+ posts)
Member # 15067
posted
An ID doc said Lyme can be passed congenitally? Huh? I better see if hell has frozen over too. Posts: 7545 | From The 5th Dimension - The Twilight Zone | Registered: Mar 2008
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- I'm very glad that the ID doctor is at least that aware about lyme passing to babies. Most ID doctors do not know that so it is good that he is at least educated in that regard. However, the dose you are on simply is not adequate.
Is there a plan to change that later? How long will you be on the 200 mg doxy a day? Is the low dose for a reason?
Are you taking Probiotics and also Milk Thistle?
Also, be aware that birth control pills can make lyme much worse. Most good LLMDs know how to work with this.
Some antibiotics can also cancel out birth control pills - so extra protection is needed. Be sure to read the pharmacy details on each drug you ever take about this.
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You said that another friend saw "Under Our Skin" with you and after you watch the bonus footage you plan to mail it back.
Please keep it a couple more days so that your fiance can see it all, too. Did your parents not want to see it? Even if in another location, you can Priority Mail it to them and they can return it to me within a couple days of their having received it.
If you have any activist friends, friends you might help you locate funding, it would be good for those friends to also see this before returning it.
As well, if you have a student advisor who will see you through not just this term but those to follow, it would be good to share this with your advisor if you feel comfortable with that. That way, if you need accommodation in the future, it will be better understood.
What did you think of Mandy's choice of carrier? Pretty cool, huh? Who knows, you may have a similar "gift" from all of this, too. -
[ 03-04-2010, 07:05 PM: Message edited by: Keebler ]
Posts: 48021 | From Tree House | Registered: Jul 2007
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CONTROVERSY CONTINUES TO FUEL THE "LYME WAR" - 2007
" . . .To treat Lyme disease for a comparable number of life cycles, treatment would need to last 30 weeks. . . ."
"...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..."
. . . .
- Full article at link above. Please read the full article for much more detail.
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The
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